Aidian's Recovery [Archive]

OU/OSUDividedFan

03-29-2008, 07:08 PM

Since my Mom is out of town, she asked if I would do the updates this weekend. I am more than happy to do something to help the Tuba family. So, here is the latest update.

Saturday, March 29, 2008
I apologize for not updating this sooner. Aidan started his therapies yesterday, although it was mostly assessments, they did do some stretches and the like. The physical therapist got a wheelchair for him to use (it needs some more adjusting, but will work), and Russ took him for a ride around the floor. There happened to be some reps here from a local company that makes wheelchairs and they had a new prototype that the therapist was excited for Aidan to try because it can grow with him and is adjustable to accommodate the flexibility of Aidan's legs right now and as he gains more range.

Different things have been mentioned to help regain the range of his knees and feet. Casts and splints and even botox. They're going to try putting him in a stander to help with this feet as well. They showed us how to do some of the stretches for his legs today too.

I think we're going to take Aidan down to the cafeteria for dinner to get him out of the room for a little bit. And then, he's going to get a REAL bath. Now, I just need to cut his hair. It's gotten SO long! With him laying so much the back has gotten pretty matted. Cutting it would just make it easier and much cooler for him.

I'm going back home tomorrow to be with Evan. Russell is going to stay here, and then we'll try to bring Evan up here Monday to see Aidan. We have to have the first sibling visit arranged with the staff for some reason though.

On sort of a bad note, Aidan had some storms yesterday evening and last night. He didn't sleep very well and neither did I. It is difficult to watch him have storms, but even more so when he really hadn't had any since Tuesday that lasted this long. He's had a few little ones but has been able to calm himself quickly.

The picture at the top is of Aidan on Thursday morning before we left the hospital. The other is of him sitting/sleeping in the Tumbleform seat on Wednesday. (He looks like my normal little Aidan in that pictures minus the trach and trach collar).

I'm still trying to deal with missing Aidan how he was before. It's hard, that's all I can say. I would love to have him run up to me and give me one of his hugs and his little kisses. I can only pray that one day he'll be able to do that again.

I guess I'll end here for now. We won't have any therapy tomorrow, but Russ and I will work with him on stretching and sitting him up for a little bit. I'm sure his little muscles and joints are sore. I'm hoping that a warm bath will help too.

Thanks for the continued prayers. We've gotten this far with them.

~Erin

OU/OSUDividedFan

03-30-2008, 07:24 AM

3-29-08 at 10:35pm

As Erin mentioned in the previous post, Aidan started storming a little yesterday and it got worse overnight. We found out the storms were happening because of a miscommunication between Northeast and Levine. Apparently, the orders for the Clonidine patches were set to be replaced every Monday, when they were supposed to have been replaced yesterday. This was partially due to Northeast changing the dosages. When the dosage was changed, the day for the patches to be replaced was reset. To quote Adam Savage of Mythbusters: "Well, that's your problem right there!"

They just replaced the patches a moment ago and they will now be replaced every Saturday. Wouldn't you know it ... they put the patches on and the storms have subsided! Isn't modern medicine incredible?

We just finished Aidan's bath and all I can say is there is definitely a learning curve involved when your active 28 lb. little boy is now 35 lbs. of dead weight. I thought getting ready to go somewhere was a process ... this is much more involved than that ever was! Between lifting/carrying him, supporting his head while bathing, changing his trach ties, and putting on new clothes, I was just about worn out! Throw in suctioning the trach when he was coughing and it was a massive production. I know this is something Erin and I will have to figure out, but today it was a lot more frustrating than I had expected.

Tomorrow we have yet another Reiki practitioner coming in the afternoon. There is no "scheduled" therapy on Sundays, so I gave them the OK to come. We can still do our own therapy session with Aidan, and will likely do some range of motion work before they arrive.

We just noticed Aidan moving his mouth in a chewing motion. He's done it before, but not nearly as much as he has done it this evening. Erin tried to give him his pacifier. You can see the picture of that attempt here. He took it for a little while, but he still "spit" it out. We think part of that is due to the weakness in the right side of his face. Erin was just happy to see him keep it in his mouth for a while. We were told by another POND (Parent of Near-Drowner) we need to introduce things into his mouth like pacifiers, baby toothbrushes, etc., so he will be used to the idea of that. It will help with therapy down the line.

Before I go, I will say that the therapists we saw today were very pleased with the range of motion Aidan has right now. He has almost full motion in both shoulders and his hips. His knees and elbows are also in good shape. His wrists are pretty good, but his ankles are very stiff. There are several possibilities for treatment of his ankles, including standers and serial casting (with or without Botox (yes, that Botox)). I am sure they will have a more significant plan of action for us come Monday.

He also has been coughing a lot more. He is swallowing some, but we will wait to see what Respiratory Therapy says about when they will start working on getting his trach out.

With that, I believe we will call it a night.

--Russell

OU/OSUDividedFan

03-30-2008, 01:14 PM

3-30-08
Aidan had a really good night after we got his Clonidine patches replaced. It's amazing the difference. Now we're going to have to see about getting the Propanylol removed since it isn't necessary now that we figured out what the problem is.

I think the reason they didn't notice the patches on Aidan's arms is because we've kept him in clothes. The patches were dated when they were put on. With all of the medication that he is on to suppress his blood pressure and all his heart rate dropped into the 70's last night causing some concern to us. But he was OUT. The poor child hadn't slept for more than a couple of hours Friday night and had only taken a few cat-naps during the day.

Other than that bit of info, there isn't anything new to add. He is sleeping right now, so we're leaving him alone to rest. I think Nana is coming to visit today and then I'm going home to get Evan. I miss him. We've got to figure out our schedule for the rest of the time while we're here.

Please keep praying for Aidan.

~Erin

barryrules

03-30-2008, 05:08 PM

Continued prayers on the way, and just remember you are one step closer to having Aidan home with you!

osutuba

03-30-2008, 06:08 PM

Continued prayers on the way, and just remember you are one step closer to having Aidan home with you!
That's true. We have a lot of other things we are looking into, including therapies that would have Aidan out for a little longer. Keep with the blog to see all the info.

OU/OSUDividedFan

03-31-2008, 09:11 PM

Monday, March 31, 2008
Therapy continues
Aidan has had a busy day of rehab today. Russell got to enjoy all of it with Aidan since Erin wasn't at the hospital.

This morning was Physical Therapy. The therapist worked mostly on Aidan's legs today. She bent his knees and worked his ankles and ended up upset due to the pain. She then put him in a stander for a few minutes. He seemed to enjoy that pretty well. She then put him in the Tumble Form chair. He stayed in that while the Psychologist and I had a chat (about 30 minutes). Dr. Colleen (the physiatrist) came in and did a checkup on Aidan during this time, as well.

Occupational Therapy then took over. The therapist put him in the wheelchair and took him to the gym. She placed him on a mat and had him sitting up, laying on his side, and laying on his belly. She also took the time to work his legs a little more. At one point he actually burped during therapy!

Next up: Speech Therapy. Aidan was actually asleep during this, but the therapist could still work on him. He actually swallowed for her during the session, which is vitally important if we want to see the trach removed anytime soon.

While speech therapy was going on, the new wheelchair for us to try came in. They got Aidan fitted for it and he turned all kinds of aggravated (heart rate 150+), mostly because they were messing with his still very stiff ankles. He also burped a second time in the new chair.

After that, a return visit from the Occupational Therapist, who spent most of the half hour trying to get Aidan calmed down. Russell had to finish the job by holding him while a nurse cleaned around his trach and G-Tube.

The social worker came in to talk with us, also. She setup an appointment with a private nursing firm on Thursday afternoon. She asked if we had any questions or concerns. She now is looking into the Katie Beckett Waiver for Medicaid along with finding out what equipment and "alternative therapies" will be covered by Medicaid. (UPDATE: We found out that the CAP/C Program here in NC is similar or based on the Waiver.)

Russell spoke with the Respiratory Therapist on duty and asked about when Aidan would be able to get an artificial nose. He said they may try it tomorrow, but it will be some time before he will get one on a regular basis.

Russell spoke with Dr. Colleen and she is checking to see if serial casting will be happening tomorrow. Aidan is now resting from his long and busy day. We will update more tonight or tomorrow.

GoPokes82sMom

04-01-2008, 10:54 PM

Tuesday, April 1, 2008
What could possibly be harmful about OXYGEN?!?!?!?!?!
As mentioned numerous times in previous posts, we are looking into Hyperbaric Oxygen Therapy (HBOT) for Aidan as a supplement to all his other regular treatments. We have seen multiple positive reports on how HBOT has a positive impact with the treatment of damaged brain tissue. We checked with the doctor here at Carolinas Medical Center and gave an absolute thumbs down to the idea of performing HBOT on Aidan. We started looking into other locations (e.g., Miracle Mountain) for treatment after Aidan goes home.

A friend of Erin's connected us to a lady in Charlotte that does HBOT for children with autism. Her friend felt we would be perfect candidates. After calling the lady, she was all for it and even offered the first week of treatments (2 sessions per day for 5 days) for free! She suggested we call Dr. Corbier to get the prescription written, which we did and he did almost immediately.

We thought we were well on our way ... then we talked to our physiatrists. Neither were for the treatment. We spoke with Dr. Colleen (this is her first name ... her last name is German and a little tricky to pronounce) when we were looking into the treatment and looking for someplace to get it done. She wasn't fond of the idea. Dr. Nelson "rolled her eyes and scoffed" at Erin. Dr. Colleen quoted a single instance where a patient died due to aspiration when the child was fed before therapy. In our honest opinion, one death does not a "bad report" make.

We wanted to start HBOT while Aidan was here at Levine, but there may be a kebash put on that. According to Dr. Nelson, Medicaid will likely not approve transporting Aidan to and from HBOT 2x/day. She said it was "up to Social Services". She also feels that if we transport him even 1x/day for HBOT, then why should we have him here in the hospital?

Here is my take: HBOT has been done for years! The Undersea and Hyperbaric Medical Society (UHMS) has thirteen accepted indications for HBOT. Only one involves the brain directly, even though studies have been performed that shows it is effective in brain injury, cerebral palsy, and stroke patients. It's OXYGEN, people!

Needless to say, we have already contacted the lady who offered the HBOT and I asked her to be in contact with all parties involved. We'll also be in contact with Dr. Corbier. Hopefully, we can take him while he is here. If not, he'll be going the day we leave the hospital.

GoPokes82sMom

04-01-2008, 10:56 PM

Aidan's New Ride and Animal Therapy
Erin got some pictures from today of Aidan in his new "ride". We will not be taking this one home, but we will get one exactly like it. Unfortunately, the seats don't come in orange ... I already asked :( Oh, well.

http://bp2.blogger.com/_8a8ZOh7n4GE/R_LEYHz-UEI/AAAAAAAAAAc/dZGgs6iIgk0/s320/4-01-08+003.JPG

Also, Animal Therapy came in this morning. A Sheltie named "Surfer" came to pay Aidan a visit. They put the dog up on the bed with Aidan and he laid still beside Aidan. Erin said that when the Occupational Therapist came in to work on Aidan, "Surfer" proceeded to lay over his belly and gave a look to say, "I'm not done with him". Erin caught a picture of "Surfer" with Aidan.

http://bp0.blogger.com/_8a8ZOh7n4GE/R_LEYnz-UFI/AAAAAAAAAAk/AsNW4YTyerU/s320/4-01-08+001.JPG

from Dortha: I FOUND OUT WHAT I DID WRONG WHEN I TRIED TO POST THE PICS THE FIRST TIME! SORRY

Verb

04-02-2008, 11:16 PM

Anything new with Aidan today? Dortha? Russell?

OU/OSUDividedFan

04-03-2008, 07:46 AM

Anything new with Aidan today? Dortha? Russell?

I'm not my Mom or Russell, but I can answer your question. LOL

There hasn't been anything new on the updates as of yet. I'm hoping that means that things are going great with Aidan's rehab.

Shari

Verb

04-03-2008, 09:30 AM

Thank you, Shari.

GoPokes82sMom

04-03-2008, 12:44 PM

this just in:

Thursday, April 3, 2008
We have a discharge date!
Aidan will be discharged on April 17th. This means a week longer in therapy, but this is actually a good thing. We found out that Aidan will begin serial casting therapy tomorrow and the later discharge date allows them to properly assess him during this therapy.

On the HBOT front, they are checking with Risk Management regarding the ability to have us take him out of the hospital for therapy. Again, if it doesn't happen, we'll simply start when he is discharged.

Also, we have been assured that all the equipment we will need (save the medical car seat) will be ready for us when we get home. If the medical car seat isn't here by the time he gets home, we will buy a regular car seat based on our therapists' recommendations and use it until the medical car seat gets here. Medical car seats are different in that they have higher weight limits and other special modifications for added stability. They are also quite bulky and even a bit heavy.

We have two important meetings coming up. The first will be a meeting with the vendor regarding getting Aidan fitted for his car seat and wheelchair. The other is with the private nursing group that will provide home nursing care after he goes home. More to come later today!

Verb

04-03-2008, 12:54 PM

Glory hallelujah! The end of this long hospitalization is in sight!

AnniePokely

04-03-2008, 05:47 PM

Maybe we should just add the link to russell's blog, so we can get the updates there. That way others don't have to continue making them.

OU/OSUDividedFan

04-03-2008, 08:50 PM

Maybe we should just add the link to russell's blog, so we can get the updates there. That way others don't have to continue making them.

Because quite a few of the people on here have said that they would prefer to read the updates on here. My Mom and I don't have a problem posting the updates, in fact, we enjoy doing it. It is something we feel like we can do to help out at least a little in our own way.

We don't HAVE to continue doing them. We LIKE to do them. But, it is your board and your call.

Shari

AnniePokely

04-03-2008, 09:09 PM

I think i'll leave the other link up as well. It has the pictures.

GoPokes82sMom

04-04-2008, 08:41 PM

Friday, April 4, 2008
Therapies, Throwing up, and Thunderstorms

http://bp0.blogger.com/_MDoagynrG-Y/R_ahss_qZNI/AAAAAAAAAAM/kQfiuqhu4cE/s320/SA403733.JPG

Today was a somewhat eventful day. Aidan was in Physical Therapy when he threw up suddenly. We're not sure what caused it: the fact that he had a feed at 8AM and went straight into therapy, Russell suctioning a little too deep, or a combination of the two. At least he proves that he has a gag reflex!

Then, Aidan got his serial casts on his legs this afternoon. As you can see from the picture, they are just like any other cast. The only difference is that these aren't being used to fix broken legs; rather, they are to reset his ankles so he will better be able to stand and, eventually, walk. He did not like having the casts put on, as they were really pushing on his ankle. They will remain on until Tuesday. After that, they may recast him depending on his progress after this round.

On the HBOT front, it appears we may be able to take Aidan while we are in the hospital at least once a day in the near future. We have to show we know how to suction and change his trach (the nurses have seen us suction, but they have not seen us change a trach here) and we have to have a car seat for him so we can perform the transport (will ask the vendor about that loaner seat Monday or Tuesday). Once one of the physiatrists talk with Dr. Corbier, we should be all set. We'll keep you advised.

To our friends and family back in OK, KS, MO, and TX, we have seen what all you have been going through with the weather. As usual, it's a double-edged sword: appreciative of the much-needed rain, but wishing all the other nasty stuff wasn't joining the party. We've had our share of rain here in NC, but not nearly as much nasty weather. Considering the drought that has been going on since even before we moved here, I definitely appreciate the wet stuff finally getting here. Be safe out there!

GoPokes82sMom

04-04-2008, 08:52 PM

I figured out what I did wrong on the pics. I forgot to use the little mountain thing above.

Verb

04-04-2008, 09:22 PM

Thanks, Dortha. He's a beautiful baby, isn't he?

GoPokes82sMom

04-05-2008, 08:59 AM

Thanks, Dortha. He's a beautiful baby, isn't he?

Yes, he is, Verb. Why do I have the feeling you, Shari, and I are the only ones reading this thread anymore?

WyomingOSUAlum

04-05-2008, 09:06 AM

You're not.

Very overwhelming. A lot of this is just over my head in a couple of different ways.

andyokstate

04-05-2008, 09:08 AM

That's really great that he's going to be discharged so quickly!

And you never would think a simple burp would sound good to your ears. Little by little. Keep fighting, Aidan!

osutuba

04-05-2008, 09:30 AM

Yes, he is, Verb. Why do I have the feeling you, Shari, and I are the only ones reading this thread anymore?
Don't worry ... I am still out here and reading people's responses.

I can understand this being overwhelming to some. I have my moments where I am numb, moments where I am upset, and moments where I am just happy he is still alive. Overwhelming is definitely an accurate term for this situation.

OU/OSUDividedFan

04-05-2008, 10:40 AM

Russell, you are right. Overwhelming is definitely the accurate term. It is hard for me to grasp all that is going on with this little guy and why yall have to go through this. My heart just aches for you and your entire family. I check this thread first thing every morning and several times throughout the day. I rejoice with the good news and I sadden with the not so good news. I feel as if he is part of my family in some way and I can at least somewhat feel your pain.

Aidan is doing great so far. He has definitely come a long long way. He is a fighter and he will prevail through all this. Yall are great parents and have great kids. Things will work out. You are doing a great job in all this.

Shari

WyomingOSUAlum

04-05-2008, 11:14 AM

Don't worry ... I am still out here and reading people's responses.

I can understand this being overwhelming to some. I have my moments where I am numb, moments where I am upset, and moments where I am just happy he is still alive. Overwhelming is definitely an accurate term for this situation.

Sorry, man.

osutuba

04-05-2008, 12:17 PM

No need to apologize, Wyoming. We all have our good days and bad days.

WyomingOSUAlum

04-05-2008, 12:29 PM

osutuba

04-05-2008, 12:38 PM

For me, I'd prefer to stay in denial that this sort of thing happens.

This couple that we are friends with had one of their children drown to death in an irrigation ditch several years ago.

Then another couple we know had their 2 year old die after the dad ran over him with their pickup truck.

Both of those incidents happened while I was on my day off, so I didn't have to go to either scene. Thank God.

I just hate it when this sort of thing happens. I HATE IT. I'm sure I don't hate it as much as you do, though. But I still hate it. I don't understand it. I just hate it.

I'm truly sorry you guys are having to go through this.
Oh, you aren't the only one hating this, believe me. And yeah, you are probably right that I am hating MUCH more than you regarding this.

We have been fortunate enough to find support through groups consisting of other parents who have a child that is a victim of a near drowning. That alone has been helpful; many of them have helped us understand what we are/will be going through, as well as help with the process of advocating for Aidan.

I know I have said it before and I will say it again ... I will find a way to bring the whole family back to OK soon. I will move heaven and earth itself if I have to so Aidan can make his OSS debut at the debut of the new BPS :)

AnniePokely

04-05-2008, 04:57 PM

Yes, he is, Verb. Why do I have the feeling you, Shari, and I are the only ones reading this thread anymore?

Not sure why you would have that feeling....??? Most of us here are family, of course we're going to continue staying up with the happenings of one of our own.

As mentioned above, it's overwhelming.. for everyone. Doesn't mean we quit reading/praying/hoping for great updates.

Russ, i just KNOW one of these days i'm going to log on to see this whole nightmare is over with for you and Erin. That's my prayer anyway

AnniePokely

04-05-2008, 05:06 PM

I will move heaven and earth itself if I have to so Aidan can make his OSS debut at the debut of the new BPS :)

Now THAT is a terrific goal!

PokesFanatic

04-05-2008, 05:07 PM

Still praying for Aidan...and reading up on his progress.

osujane

04-05-2008, 05:48 PM

Yes, he is, Verb. Why do I have the feeling you, Shari, and I are the only ones reading this thread anymore?

I read this thread everyday. Still agreeing with you all in prayer. :)

GoPokes82sMom

04-05-2008, 06:24 PM

Saturday, April 5, 2008
some new pictures
Russell took a few pictures of me holding Aidan last night, and I thought I'd share them with you all.

http://bp1.blogger.com/_8a8ZOh7n4GE/R_fchnz-UII/AAAAAAAAAA8/4kJs1X6mybA/s320/from+digital+camera+014.JPG

http://bp2.blogger.com/_8a8ZOh7n4GE/R_fdd3z-UJI/AAAAAAAAABE/9GVKQywuyD0/s320/from+digital+camera+015.JPG

The past two days Aidan has been rather agitated. His heart rate goes up and down and his cheeks are really flushed. He looks like he's crying most of the time. This started when they put the serial casts on his legs. I don't know if he's just frustrated and uncomfortable or what.

He rested well last night from what the nurses told me. They gave him some Ativan along with his other meds last night and he slept most of the night.

The physical therapist said that if Aidan is tolerating the casts well, they would like to wait until Wednesday morning to take the casts off. The plan is to get him into the stander as soon as they get them off to maintain the stretch in his calves and ankles and then see how he does from there. If he does well, they won't have to recast them. I'm praying that the casting works to help his ankles so that he doesn't have to go through this again. He just looks so uncomfortable right now.

Thank you everyone for your supportive comments and the continued prayers.
~Erin

AnniePokely

04-05-2008, 06:34 PM

Finally! Pictures! Yeaaa!

SO sweet! Russell, he looks so much like you.

Verb

04-05-2008, 07:01 PM

He does look amazingly like Russell. I think it every time I see his picture.

GoPokes82sMom

04-05-2008, 08:17 PM

Finally! Pictures! Yeaaa!

SO sweet! Russell, he looks so much like you.

There are pics on the first page of this thread too.

AnniePokely

04-05-2008, 08:32 PM

There are pics on the first page of this thread too.

Yes, and it's nice to see them in these updates.

Nice to put a face with the prayers.

osutuba

04-05-2008, 09:35 PM

Not sure why you would have that feeling....??? Most of us here are family, of course we're going to continue staying up with the happenings of one of our own.

As mentioned above, it's overwhelming.. for everyone. Doesn't mean we quit reading/praying/hoping for great updates.
Annie's right ... just because people aren't posting doesn't mean they aren't looking or don't care. Many here are parents and grandparents of or know someone who has a child Aidan's age. I am sure they, like many others are (unfortunately) imagining our situation and having a very hard time fathoming what we are experiencing right now.

There are several people on the board I have not seen posts from that I would think would have posted by now, but I am not upset that they haven't. In fact, the "silent masses" are the usually the ones doing a lot more than anyone could imagine in times of need.
Russ, i just KNOW one of these days i'm going to log on to see this whole nightmare is over with for you and Erin. That's my prayer anywayThat is our prayer, as well. We know it is a long road ahead and a lot has to happen for the Aidan we know and love to come out of his "fog", but I know he is in there waiting to come out.

osutuba

04-05-2008, 09:38 PM

Finally! Pictures! Yeaaa!

SO sweet! Russell, he looks so much like you.
We get that a lot :)

osutuba

04-05-2008, 09:41 PM

Now THAT is a terrific goal!
I thought you would like that :)

I figure that a year and a half after the accident he will be in a condition where we are comfortable enough to travel with him. It may happen sooner than that, but I know I want to try to make it to that game since I know a lot of the OSS and OP.com family will be there.

osutuba

04-05-2008, 09:42 PM

He does look amazingly like Russell. I think it every time I see his picture.
My kindergarten teacher sent an e-Card to Aidan and commented that looking at him was like looking into the past with me. It made me cry because she was and still is one of my favorite teachers from my school days.

AnniePokely

04-05-2008, 09:42 PM

People care..even the silent ones. My church folks care too, Russ! Aidan is mentioned every single sunday!

osu&cardsfan

04-05-2008, 11:08 PM

I have never met your family and I don't post a lot on the board, but I check this thread daily as well as the blog.

You have prayers coming even from us "silent ones". I also have a 2 year old little boy and your story has had an enormous effect on me.

Please know that prayers are being sent up daily from people you have never met.

Kristi

bleedorange

04-05-2008, 11:39 PM

Yes, he is, Verb. Why do I have the feeling you, Shari, and I are the only ones reading this thread anymore?

What an odd (and hurtful) thing to say.

I seriously doubt that you three are responsible for all 645 views of this thread.

osujane

04-06-2008, 08:14 AM

Thank you for the pictures of Aidan. I pray that God allows his beautiful personality (pre accident) to shine through once again.

http://www.unclebill.us/bigs/angel.gif

orangeblood

04-06-2008, 08:43 AM

I dont normaly hit the net on the weekends, but since this accident I check the updates first thing EVERY morning and several times a day. I have four kids and this really hits home with me.

I see this type of thing almost daily in my line of work, and I cant take it home, but following your boys progress has become a priority for me!

I love the pictures!!!!!!!!!!!!!

Dont ever think that Aidan is not in our prayers and thoughts!!!!!!!!!!!!!!!!!!!

As I said before, Aidan is blessed to have you guys as parents.

barryrules

04-06-2008, 08:44 AM

Great pictures!! ANd I do read this thread every day, just don't always post because usually someone else has already said what I have to say. But trust me I pray every day for Aidan's recovery!!
\

GoPokes82sMom

04-06-2008, 09:48 AM

Great pictures!! ANd I do read this thread every day, just don't always post because usually someone else has already said what I have to say. But trust me I pray every day for Aidan's recovery!!
\

I was just surprised that the comments had lessened. I never doubted that anyone on here had stopped praying for Aidan. I do the best I can do at this point between all the OT, doctors, pain, and meds.

Russell, all our good thoughts and prayers to Aidan and the rest of you.

AnniePokely

04-06-2008, 11:17 AM

Back on topic...

Russell, can we have your home address to send Aidan something there? I know the discharge date is the 17th, and I bought him something that i'd like to send. You can PM the address if needed.

GoPokes82sMom

04-06-2008, 12:15 PM

Found the link:

http://www.youtube.com/watch?v=X2lX6vr_Vzw

osutuba

04-06-2008, 07:29 PM

AnniePokely

04-06-2008, 07:48 PM

Got it Russ!

osutuba

04-06-2008, 09:16 PM

cool :)

OnlyOSU

04-06-2008, 10:22 PM

My husband told me about what happened. Please know that, yes, there are many prayers out there for Aidian and the rest of your family.

osutuba

04-06-2008, 10:25 PM

My husband told me about what happened. Please know that, yes, there are many prayers out there for Aidian and the rest of your family.
Who is your hubby?

OnlyOSU

04-06-2008, 10:26 PM

My nubby is RedDirtCowboy.

OnlyOSU

04-06-2008, 10:27 PM

...oops I mean hubby...:rollseyes:

osutuba

04-06-2008, 10:28 PM

...oops I mean hubby...:rollseyes:
at least you didn't say "tubby" :D

OnlyOSU

04-06-2008, 10:32 PM

That will teach me to use the quick reply...I am new tonight and very tired. It just reminds me how quickly something goes out there that you can't retrieve.

osutuba

04-06-2008, 10:41 PM

Honest mistake

OnlyOSU

04-06-2008, 10:58 PM

your boys are precious...

osutuba

04-06-2008, 11:01 PM

your boys are precious...
Thank you :)

GoPokes82sMom

04-06-2008, 11:27 PM

A gift from the Carolina Speed

http://www.carolinaspeedprofootball.com/images/stories/logo_small.gif

The father of friend of Erin's works as a trainer for the Carolina Speed. He helped arrange for his daughter to do a fund raiser at their game last night. I also got to go to the game since her dad scored a pair of tickets for me and my wife's aunt. The fund raiser went well, though it was hard to listen to the video Erin created for the hour we were there before the game started.

Towards the end of the game, Ashlyn (Erin's friend) found me and told me her dad had something to give me. We went down after the game was over and he gave me a game ball (like the AFL, game balls lost to the crowd become souveniers). We then went down on the field and I got the ball autographed by all the players, coaches, and cheerleaders to give to Aidan as a gift from the team. When I get the, I'll post some pictures of the ball.

In an interesting twist, I found out one of the players went to NWOSU in Alva. I talked to him during the autograph session and told him I was getting the ball autographed for Aidan. He proceeded to tell me that his son was also named Aidan.

I plan on going to another game when my mom and brother come to see us from Oklahoma. I hope to take Aidan along so the players can meet him.

--Russell

GoPokes82sMom

04-06-2008, 11:28 PM

Sunday, April 6, 2008
Evan visits
Today my aunt, uncle and cousins came up to the hospital and brought Evan with them. Evan has been staying with them during the weekend and they take him to church on Sunday. This was the first time that Evan has really seen Aidan since the accident, 7 weeks ago. We were able to take him back once in the PICU, but it was only for a minute or two.

Evan was happy to see Aidan. He studied him for a minute or so and then got this huge smile on his face. The other night when I was working on Aidan's video, Evan was sitting in my lap and he kept waving to Aidan's pictures on the screen and kept saying "hey". It was cute.

Today made me sad though. I'm so used to telling Aidan to be gentle with Evan, and now that is reversed. I want the old Aidan back. I want him to run around the house jabbering nonsense and screaming. I want to hear him laughing and I want him to be able to play with his baby brother.

I always want what I can't have or what I'm not supposed to have yet. It was that way when I wanted a baby. We kept trying and trying and I'd cry and cry because I wanted a baby so badly. Finally, when the time was right we were blessed with Aidan. I just need to remember that God answers our prayers in His own time and in His own way. We may not like His answer but it's always what we need.

I just miss our old, boring, normal life- Staying at home and being lazy, playing with the kids on the weekend. I miss Aidan climbing up in my bed to snuggle with me when he'd wake up in the morning. I'm just feeling really down right now. Sorry to drag everyone with me.

We've ordered some silicone wristbands that say "Pray for Aidan" on them that we are going to be selling to help raise money for some of the treatments and for some equipment that insurance won't cover. When they come in, I'll put the info on here along with a picture. We got 5 different colors to choose from (royal blue, green, red, orange and navy.)

Please continue to keep Aidan in your prayers. He's made a lot of improvements and I'm hoping that we'll see even more once we start the hyperbaric treatments.

GoPokes82sMom

04-06-2008, 11:31 PM

As soon as the doctor says I can make a visit, I will come down there to visit with you guys and my grandson. I'm sending you a whole bunch of hugs.

MustangPokeFan

04-07-2008, 06:29 AM

I am praying for a miracle for your little boy and will continue to do so regardless of whether or not I am posting. I also pray for continued strength for you as parents. I expect numerous answered prayers to come your way. I'm sure many already have.

osuno1

04-07-2008, 08:17 AM

osutuba

04-07-2008, 11:53 AM

[I'm just feeling really down right now. Sorry to drag everyone with me.]

You certainly don't need to apologize to us. That is one small thing that we can do for you; be here to listen. We are all praying for Aidian and your family every day and wondering what can we do. So please feel free to vent to us.

Jenny
Erin has definitely been feeling down lately (that was her post and she isn't a member on here yet). It's really hard on her. It is hard on me, too, but I guess I just have found ways to suppress things until I really need to let it out.

GoPokes82sMom

04-07-2008, 11:57 AM

We will be in Charlotte for the races Memorial weekend if you want company for one day.

Please give Erin a big hug and I love you from me.

osutuba

04-07-2008, 02:04 PM

We will be in Charlotte for the races Memorial weekend if you want company for one day.

Please give Erin a big hug and I love you from me.
You know you would be more than welcome to pay us a visit!

GoPokes82sMom

04-08-2008, 08:29 AM

Tuesday, April 8, 2008
reflections
I've spent most of the evening reading Samuel's blog. His early days in the hospital sound so much like Aidan's. I got to the point where Samuel's mom mentioned she spoke with an ER nurse who was there when Samuel was admitted. Samuel's blood ph was 6.9. Anything below 7.0 indicates that the body is dying. I've mentioned before that Aidan's ph was below 6.5. It wasn't even registerable because the lab value only goes to 6.5.

It makes me sick to think of how close we came to losing Aidan altogether. The doctor never expected Aidan to live. When I arrived at the hospital, I just knew that they were going to tell me he was gone. I'll never know everything that the paramedics, the nurses and doctors did to bring Aidan back. I'm not sure I want to know.

I think I'm doing okay most of the time, and then out of the blue I'll get a flash of Aidan floating in the water and I'll get the same sick feeling I felt when I realized that my baby was probably dead. I keep trying and trying to get past this. I can't change it.

These feelings sneak up on me when I least expect it. I'm just so SICK of hospitals. I want to get Aidan home and get back to our lives. We've got to establish normal again. I want both of my babies under the same roof in their own beds at night.

Oh, well... Aidan is doing well tonight. He's sleeping peacefully. They did an EEG today to find out if the startling that I've noticed is seizure activity or if it's just part of the storming syndrome. I'm hoping that this is just the progression of the syndrome as his brain tries to heal and "rewire".

As for the hyperbaric treatments, it looks like they will have to wait until we are discharged. Because it is considered "experimental" therapy for brain injuries they don't want to risk our insurance to refuse to pay because we take him out of the hospital. Regardless, Aidan will be receiving his first treatment on the 17th on our way home from the hospital. I just pray that we see some improvement. I'm also ready to get him to the neuro-opthalmologist so we can find out if and to what extent he can see. We'll have to find out more about that. Maybe we can get scheduled for that while we're here and take him to that since the hospital will actually transport him for that visit.

Please focus your prayers on these startle episodes that Aidan is having, pray that they aren't seizures and this is just his brain's way of healing. Please also pray that the casts have done what they were intended to do and that Aidan won't have to have them done again.

Thank you everyone!
with love,
Erin

GoPokes82sMom

04-08-2008, 08:32 AM

((((((((((((((((HUGS)))))))))))))))))))) Those will be for real on May 23rd. I wish it could be earlier, Erin.

osutuba

04-08-2008, 08:47 AM

((((((((((((((((HUGS)))))))))))))))))))) Those will be for real on May 23rd. I wish it could be earlier, Erin.
May 23rd is my birthday. This will be a nice gift to see an old friend again :)

GoPokes82sMom

04-08-2008, 12:29 PM

May 23rd is my birthday. This will be a nice gift to see an old friend again :)

Wow! That is great timing. Mine is the 27th and our anniversary is June 3rd.

:food-smiley-004:

:cowbell:

osutuba

04-08-2008, 12:55 PM

Wow! That is great timing. Mine is the 27th and our anniversary is June 3rd.

:food-smiley-004:

:cowbell:
Awesome ... we'll just make it a big combined shindig :)

Guess I need to see if tix for the 600 are still available so I can try to go to my first NASCAR race ever LOL

GoPokes82sMom

04-09-2008, 02:19 AM

Tuesday, April 8, 2008
Evening update and Russell's own reflections
Erin called me and said she was having trouble getting online from the hospital, so she asked me to post today's update.

Two more small victories occurred today. For the first time in weeks, Aidan smiled. The Occupational Therapist was touching his eyes, ears, etc. then making Aidan touch those same places. Erin said she saw it in his eyes first, but then actually saw his mouth turn up in a little smile. The therapists also informed Erin that it will not be necessary to get a hospital bed for Aidan to sleep in at home; a simple foam wedge will work fine for elevating Aidan. This is a big deal, since Aidan and Evan will still be sharing a room when Aidan comes home. When you consider the size of a hospital bed and the fact that the bedrooms are not very big, knowing that this is not a necessity is a pretty big deal.

The serial casts will finally come off tomorrow morning, followed most likely by a long stint in the stander. The Physical Therapist said the back half of the cast will be retained to serve as a brace until the ankle-foot orthotic (AFO) braces can be ordered. The order has been placed, so hopefully the person responsible for fitting Aidan for them will be in by the end of the week.

Surfer the Sheltie came to visit again today and will be back on Thursday. Just like last time, Surfer laid his head across Aidan's belly. Erin helped Aidan pet his muzzle and even had him touch his nose. Aidan stayed relaxed through the whole thing, which is good ... especially when you consider we have Bear, Paco, and Max here at home. A new dog (Erin believed its name was "Abby") is coming tomorrow. I hope it's a chocolate lab; Aidan loved playing with Bear.

I got back in touch with the lady who made the connection with Aidan previously, mainly to deal with the nightmare that is filling out the North Carolina and South Carolina state tax returns (believe me, Oklahoma's tax return is a cake walk compared to those things!). Erin asked that I have her make another connection with Aidan now that he is at Levine. She said she would do her best and email us as soon as she made the connection.

On a personal note, I watched the YouTube video Erin made again and realized that I am still very much in the grieving process. As I watched the pictures from before the accident, I saw the "smiling eyes" that would greet me even on my most down days and instantly cheer me up. My son -- the one who is most the mirror image of me -- is now in the hospital and I don't know how he is going to turn out, even though I have faith that God is going to do what is best. What made me the most emotional, though, was not the before pictures. It was looking at the post-accident photos and still seeing the same smile in those eyes (when they were open) that, as far as I know, can't even make out who I am. When I see that, I can still hear him saying "Hey!". Right now, that sound is both the most wonderful and the most painful thing I hear in my mind.

I oh so miss my little man. Yes, I have my other little man in Evan who is loving and playful and so full of life and energy and I love with all of my being and will move heaven and earth to make sure nothing bad happens to him; however, I would put myself in PaPaw's pond in an instant if I knew it would bring Aidan back to normal ... all so I could hear him say "Hey!" one more time.

Thanks for taking the time to read this. I know many of you follow this regularly and even cross-post to message boards, etc. that you belong to. All of that is greatly appreciated. Continue praying for progress and success.

Thank you,
Russell

AlwaysOrange

04-09-2008, 09:54 AM

I haven't posted in a while but do read this thread on an almost daily basis...sometimes more than once a day.

I am still praying for your family. It sounds like small miracles are being seen now and that is definitely through the work of God. I will never attempt to know what you are going through but continue to focus on your faith and you will be blessed.

MemphisPoke

04-09-2008, 10:12 AM

Russell:

I am like so many others who are visiting this thread every chance they get, following along with the "goods" and the "bads" as they have occurred and offering up a prayer for Aidan.

You and Erin hang in there. We are here for you.

GoPokes82sMom

04-09-2008, 11:24 AM

here is this morning's update:

Wednesday, April 9, 2008
The casts are off!
Aidan did really well while the PT cut his casts off. She said that his feet looked great and that he won't need to be recast. Thank God for that! They are doing what's called bi-valving, which means they are using the back half of the cast to act as a splint or brace and securing it with an ace bandage to keep his in that position until the AFOs are made for him.

We got him in the stander and gradually got him upright. He was a little upset at first, but eventually fell asleep in it. The PT said that getting it right the first time generally doesn't happen and she was very pleased that Aidan responded so well.

Thank you all for your prayers that the casting did it's job. We're one step closer to getting him standing and hopefully eventually walking again. Right now, he's asleep in his wheelchair. Therapy usually wipes him out.

I also got news from the doctor that the EEG did NOT show any seizure activity. Another thing to thank the good Lord for. The startles seem to just be part of the Autonomic blah, blah, blah Syndrome we like to call "storming". All I can say is at least he isn't posturing with the sky high heart rate and breathing over 100 breaths per minute.

Only 8 more days here! I'm so ready to get home. 2 months of living between hospital and home and my babies not being under the same roof is about to make me stir-crazy. I'm ready to get into a normal routine and spend time at home with my boys. We've got such a long road ahead of us. We are planning to take Aidan directly to his first hyperbaric treatment as soon as we leave the hospital. Please pray that we see positive results from these treatments. I don't really know what I expect, but I know what I'd like to see. I'd like for his responsiveness to improve and I'd like for him to be able to smile and laugh again. I want his vision to improve.

I wish I could say that HBOT is a cure all, but it isn't. It can do some amazing things for people as far as I've seen, and maybe if it had been done for Aidan as soon as he was stable we wouldn't be dealing with the amount of damage to Aidan's brain. We'll never know... I can only hope that it helps him. At this point any step closer I get to having the old Aidan back is a step in the right direction and is a miracle.

Thanks again everyone! I just want to end by saying that Russell and I really appreciate everything that you all have done for us. The continued prayers, love, support and generous donations. I have been trying to work on thank-you's to those who've donated, but unfortunately I lost part of my list. I'm trying to remember it or locate it, but I didn't want people to think that we aren't appreciative, because we are. I've been so overwhelmed by people's generosity and I really want to thank each and everyone individually, so I feel terrible that I lost my list. So, if you don't receive a thank you card from us in the next week or so, please, please forgive me and know that we greatly appreciate your kindness, generosity, love and support for our family.

Thanks!
Erin

AnniePokely

04-10-2008, 06:39 PM

Thursday April 10th, 2008

Taking the good with the bad ...

Aidan had a pretty good day today. Physical Therapy put him in the stander the first part of the day and then speech therapy worked with him. In between, Respiratory Therapy came in and actually put a Heat-Moisture Exchanger (HME) on Aidan's trach tube. They said he had a great response to it, which means we will be able to use that on him instead of the humidifier from time to time.

I had to leave at noon to get ready for an interview. I thought the interview went well, and they said I would hear something by 5PM today if I was going to go in for a second interview. Well, 5PM came and went with no calls from anyone other than the Social Worker. Guess I know where that job opportunity went.

Please keep up the prayers ... both for Aidan's recovery as well as my job hunt.

Thanks,
Russell

AnniePokely

04-14-2008, 06:37 PM

Anything gone on the last four days Russell?

osutuba

04-14-2008, 06:39 PM

It's been relatively quiet. I think Erin is posting an update later this evening, as quite a bit went on today.

snuffy

04-15-2008, 08:29 AM

Monday, April 14, 2008
preparing to come home

2 days left! I've been counting down the days until Aidan comes home. It's almost like bringing home a new baby, except mine is 2 years old and he weighs about 35 pounds. We're in the process of getting the boys room repainted and new carpet put down (long overdue), so it is chaos in the house. The new carpet will be installed Wednesday.

Aidan is doing well. His feet are great and he's been in the stander every day to stretch out the muscles and tendons that were so tight before. In OT today, the therapist had him sitting, supported, in front of a mirror. He doesn't have any head/neck control so she had to hold his head steady. He does pretty well with the position changes, and it gives him a chance to strengthen his neck, back and abdominal muscles by sitting.

During his afternoon therapy sessions today, a reporter from a local paper came to do an interview with us about Aidan. A photographer also came to take pictures of Aidan. We're not sure when the story will be printed, but we'll let everyone know when and we can post a link to the story on the paper's website.

I had an appointment at the Social Security office today to apply for SSI for Aidan. What a pain in the BUTT! I don't know what happened to the people that work there, but I think they were replaced with robots because they lack any personality, empathy or compassion. And did I mention how picky and technical they get!? And when was the last time a 2 year old had income? I don't know how many times I had to say, Aidan doesn't do ANYTHING on his own. No, he doesn't talk; No, he doesn't walk, run, sit up, stack blocks, etc. ; No, he isn't affectionate--- I don't even know if he sees me, let alone him being affectionate. After repeating this about a dozen times the lady again asks me in this rather surprised tone, "He doesn't say No, or shake his head... he doesn't run?" UMMM, NO! He doesn't. My child lies in a bed, or he sits in a special seat to support him or he sits in a wheel chair. He has to be positioned so that he doesn't develop sores because he CAN'T MOVE! I'd love for him to sit up in that bed and say "hey." But unless God works a pretty major miracle, I don't see that happening any time soon. After going through this and his extensive list of medications and doctors, I started to get upset. It took everything I had not to just sit there and cry. And the woman didn't say a single word to me about the fact that her stupid questions were upsetting me!

Okay, now that I've had my rant- I'm sure that not every single person who works for the Social Security office is like this.

I'll leave you all with a picture of Aidan I took Sunday evening after Nana gave him a haircut and he had a bath. His little cheeks are red because he was mad at me for moving him.

We thank you for your continued prayers. Please pray that we see some improvements in Aidan once he starts the hyperbaric oxygen treatments. Also, please say a prayer for Evan. He's not been feeling well today and was running a fever. If he is the same tomorrow, I'm going to take him to the doctor. We appreciate all the love and support from everyone!

~Erin

Sorry, I could not get the picture to copy.
Erin, Russel and Aidan, I am glad he is coming home, my prayers are with your family for strength and peace to keep moving forward.
Snuffy

http://bp1.blogger.com/_8a8ZOh7n4GE/SAQmxf9Sq0I/AAAAAAAAABM/RJkVwrsGNxk/s320/April+13+001.jpg

Verb

04-15-2008, 11:12 AM

Thanks a bunch, Snuffy and Annie.

osujane

04-15-2008, 07:36 PM

Prayers and good thoughts for Aidan and the entire Tuba family are ongoing. :pete:

Snuffy and Annie, thanks so much!!

snuffy

04-16-2008, 09:15 AM

Evening Update on Aidan and HBOT Redux

Aidan had a pretty good day today. He went through his usual rounds of Occupational, Speech, and Physical Therapies. He was also finally fitted for his AFOs and will presumably have them by tomorrow.

I had a visit this morning from the home health nursing group. They brought in the portable suction and pulse-ox meter we will be using when transporting Aidan and taking care of him at home. They'll visit the house tomorrow to bring in and setup some of the more "permanent" equipment (oxygen tanks, supplies, etc.).

As stated numerous times previously, we are starting Aidan on Hyperbaric Oxygen Therapy (HBOT) on Thursday with his first visit as soon as he is discharged from the hospital. Our therapist already gave us 10 free sessions, which is equal to one week of therapy, but we wanted to get more sessions lined up before Aidan was discharged. You know, one less thing to worry about.

Erin has been in contact with HUGS for Near-Drowning Children since we got to Levine in an effort to get assistance in paying for some HBOT treatments. After relaying various pieces of information to them, Erin received word that they will pay for a month of treatment (40 in all)! Erin also informed me that efforts are currently in place to pay for another 30 treatments. This means 2 months of treatments taken care of already!

Like Erin said, in two days we start yet another new chapter in our journey with Aidan. Honestly, I don't know what to expect or hope for at this point. All I know is there will be a lot of adjusting going on for the first few weeks when you consider the nurses and therapists coming in and out, doctor's visits (I know we have 2-3 already lined up in the first week), and the simple process of getting into a routine at home. I am pretty sure Erin and I will be asking for advice from some of our new friends in the near-drowning (ND) community on how to make this transition as smooth as possible.

To those of you offering to help, we greatly appreciate any and all assistance you can provide. Continued prayers are welcomed and encouraged.

-- Russell

snuffy

04-18-2008, 07:32 AM

Thursday, April 17, 2008
AIDAN IS HOME!!!

Aidan is finally home after 2 months and a day of being in a hospital. We were supposed to be discharged from Levine around 10am but we didn't actually leave there until right at 1pm. We got our new car seat for Aidan and had to get it installed in the van, and we had to get all of his meds from the pharmacy.

We went straight to his first hyperbaric treatment. It went pretty well, and if he hadn't soaked his diaper and his clothes toward the end of the session he would have handled it really well. Aidan seemed to handle the pressure on his ears really well. So we're scheduled to do 2 sessions tomorrow, 1 on Saturday, 2 Sunday, Monday and Tuesday.

They are trying to figure out a way to get us a portable chamber at home, using the funds from HUGS and the other additional treatments we have lined up. That would definitely help with the travel time involved in doing these treatments. It's 45 minutes to and from the location. I'm sure that we'll have to raise some additional funds to facilitate getting our own chamber, but it would be well worth it.

The doctor said something that really made me feel very good today. She said that Aidan has shown a "non-traditional" response to his type of injury; meaning that he is doing much better than other patients she's seen with similar conditions. She said that she hopes and she really thinks that he'll continue to progress in this "non-traditional" way. It gives me hope to hear something like that come out of a doctor's mouth. Aidan has proven what a fighter he is. He overcame the odds that were against him and he survived near-drowning. Despite the brain injury, he is still fighting and I know that he will continue to do so. He's a tough, stubborn, little boy.

I wasn't going to drag this out because I'm exhausted, but I just want to thank everyone for their prayers.... the endless prayers, love and support for our family. I know that we wouldn't be where we are now without the power of prayer. God has truly worked some miracles through our little boy, and will continue to do so. We are so blessed to have so many people who love and care for us. Our journey is just beginning, so we hope that Aidan will continue to be in your hearts and prayers. Thank you, everyone!

love,
Erin

Drummond12

04-18-2008, 09:12 AM

Continued prayers being sent for Aidan... I'm so happy that your entire family is together again in your home. The doctor's comments sound very encouraging!

orangeblood

04-18-2008, 09:26 AM

Aidan is still in our prayers every day!!!!!!!!!!!!!!!

barryrules

04-18-2008, 10:25 AM

Welcome home Aidan!!!!

snuffy

04-20-2008, 10:10 PM

Sunday, April 20, 2008
Article from the Salisbury Post

A journalist from the Salisbury Post came to the hospital a couple of days before Aidan was discharged to interview us. Below is the story that appeared in today's paper. I'll have to scan the pictures from the newspaper and add them later. Anything shown below in parentheses are corrections/discrepancies I have made to the article.

http://www.salisburypost.com/Area/042008-Aidan-Wright-recovery

Toddler recovering slowly from near drowning
Sunday, April 20, 2008 1:11 AM

By Shavonne Potts

Salisbury Post

February 16 is probably a day Russell and Erin Wright would like to forget. It was the day they lost their son and found him — only to lose pieces of him again.

Aidan, just five days shy of his second birthday, nearly drowned in a family member's (somewhat accurate, since it was Sonia's boyfriend's house and he is practically Erin's step-dad) pond near Kannapolis.

The family had gathered at a home to celebrate Aidan's birthday when he wandered off. He was found sometime later, floating face-down in the pond. The family isn't sure how long he'd been in the water. There's about 10 minutes unaccounted for from the time he was last seen to the time they knew he was missing, they said.

"Everything went into fast forward and slow motion at the same time," Russell said.

It was Russell who dived into the water to pull his son out. By the time he reached Aidan, the toddler was blue and unresponsive and his eyes were wide open, images that Russell said are "permanently burned in my soul."

A phone call to 911 which took minutes felt like an eternity, Russell said.

Sonia Sinclair, Aidan's grandmother who is also a nurse, performed CPR until EMS arrived.

Erin said her mother closed Aidan's eyes and, while she tried to revive Aidan, he opened his eyes twice on his own.

Medical personnel could not immediately find a pulse. Before loading the toddler into an ambulance they worked for 30 minutes to resuscitate him, his parents said. He responded on the way to the hospital (at the hospital, not on the way).

"We thought it was going to be a day were going to celebrate," Russell said.

The day was a blur for them both, Erin said.

Good and bad days

Aidan has been recovering and undergoing rehabilitation at Levine Children's Hospital, a division of Carolinas Medical Center in Charlotte.

He was able to return home Thursday.

In a way, the family is still in mourning. Aidan is no longer their "rambunctious, curious, independent" boy who played with Tonka trucks and likes Curious George.

Aidan suffered significant brain trauma. He cannot walk or talk. His parents are unsure to what extent he can hear or see them. The portion of the brain that is damaged controls sensory input, sensation and perception.

There are good days and bad days, Russell said.

The family is just glad to be able to see him and "know he's alive," he said.

He works with speech, occupational and physical therapists two to three times a week, with sessions taking up three or four hours each day and spread across the morning and afternoon.

In occupational therapy, Aidan is working with his vision and sound. Therapist Ellen Hobbs purposely turns up noises like the radio and jingles a bell beside his ear. Many of the activities they work on are also for range of motion actions.

"We switch things up and change to different positions," Hobbs said.

During his sessions, therapists place Aidan on a "stander," strap him in so he won't fall and get him used to standing on his on feet. The stander looks similar to a mini gurney with a place for Aidan to rest his feet. The equipment is designed to increase muscle tone in his feet and legs, especially his tendons.

Physical therapist Anne Mumaw massages his legs to soothe any pain Aidan feels while putting pressure on his feet.

The stander also prevents any bowing or stunting of his bones, Erin said.

"The staff here have been nothing short of incredible. They have shown they care and want to see him do well," Russell said.

Dividing time

Erin and Russell divide their time between Aidan's therapy appointments and caring for his younger brother, Evan, who is 9 months old. However, one or both show up for his therapy sessions.

The sessions have recently included a tutorial for the parents that will enable them to work with Aidan at home.

He wears a (two) Clonidine patch(es) to work in conjunction with taking Valium to control the neurological storms he experiences.

His father explained that when he has a storm, his blood pressure and heart rate get elevated and the medicines help keep it and the seizures under control.

When Aidan was taken by ambulance the day of the accident, he had to be intubated and a tracheotomy tube was put in place. When doctors tried to remove the tube, he struggled to breathe, so they left it in place (the trach tube was added at the hospital after they tried extubated him and he showed troubles breathing on his own).

The family is also looking into Aidan undergoing hyperbaric oxygen therapy.

Some studies involving brain conditions have shown that pure oxygen pumped into the blood (at higher atmospheric pressures) improve the condition, Russell explained.

"We've joined support groups who recommend we do it two times a day," he said.

The hyperbaric therapy is not covered by the family's insurance.

According to an insurance oversight committee, this type of therapy is not on the insurer's list of approved treatments, he added. But it is where the largest chunk of hospital expenses will be incurred.

"We're looking at an estimated $1,500 a week," Russell said.

As to other expenses, the family said many of the bills have not come in yet and so they they aren't sure what to expect, though they do expect them to be high.

Making strides

Aidan's feet began pointing downward since most of his time was spent in a hospital bed.

He recently underwent serial casting, which is a non-invasive procedure where Aidan wears a well-padded cast that will help him have better range of motion and get his feet positioned to a normal stance.

It will also help to get him to the point where he can walk, his father said.

Aidan has made notable strides in what could be a lengthy recovery.

"We've come a long way," Erin said.

"He's our miracle. He's been giving us little miracles day-by-day," Russell said.

His parents said he sometimes follows people and objects with his eyes.

"Sometimes it's as if he's looking at you or he's looking through you," Russell said.

Aidan also seems to recognize their voices, Erin said.

"He's had one time where he smiled when the therapist touched his face," she said, stroking his cheek with the back of her finger.

He's also made efforts to lift his head, and has begun small mouth movements leading them to believe he's trying to swallow.

"We have significant hope that he is making progress," Russell said.

There are no concrete goals in this recovery process, except Russell and Erin would like to have a routine of treatment and therapy sessions for their son down pat by next week.

Outpouring of support

Although they accept what could be many months of recovery, Russell said they do wish for things to be as they once were.

"We want him to be our normal little boy again," he said.

As part of that routine, they'll also have to incorporate the care of younger son Evan, who has been spending time with an aunt.

It pains them to split their time between the two boys, but they are grateful for support.

"It's been a fortunate thing we've had a lot of family support," Russell said.

Erin's brother, Matt, helped build a wheelchair ramp at the family's house and friends have organized a donation table at Carolina Speedway in Gastonia (The table was setup at a Carolina Speed football game, not at Carolina Speedway).

Outfitting their home to accept the different equipment such as the stander, a crib and wedges to help with therapy are the biggest adjustments for the family.

The family expressed their appreciation for the many prayers, concerns and donations made to them. They ask that the prayers continue.

"We've had an outpouring of support. It renews your faith that there are good people in the world. It renews my faith that there are people willing to do a good turn for others," Russell said.

There is a Wachovia account in the name of Erin or Russell Wright set up to help with some of the family's medical expenses.

Russell explained there was some confusion about how to spell Aidan's name, so the account was put in theirs.

For updates on Aidan, the family maintains a blog about his recovery at http://prayforaidan.blogspot.com.

Contact Shavonne Potts at 704-797-4253 or spotts@salisburypost.com

osujane

04-21-2008, 07:31 AM

I pray God is blessing Aidan and your family. :)

I know you must be thrilled to have him home - hope the oxygen therapy is going very well!

AnniePokely

04-21-2008, 09:39 AM

update from Russell at 11:23 pm ET:

Sunday, April 20, 2008
A minor setback

Since Aidan came home Thursday, he has been throwing up at least a couple of times a day. When he throws up, it there is a lot of mucous in it. He also was running a low-grade fever. Erin called Dr. Pons and she said to take Aidan to the emergency room. She is there now with him.

She just called me a moment ago and this is what I know:

Aidan is not in the PICU ... he is in a regular room back at Jeff Gordon Children's Hospital and being held for observation. He does not have pneumonia according to x-rays taken this evening. They will run x-rays again to make sure. His white blood cell count is up, but this could most likely be due to the trach tube. The doctor asked Erin to give Aidan 5-10 mL of formula every 10 minutes or so to see if he tolerates it. She told me that he was tolerating it pretty well, but was about to go to bed. Feeding will continue tomorrow.

At this point, Aidan is set to be back home tomorrow, but it all depends on the next set of x-rays. This is a minor setback, as it puts a damper on HBOT and we may have to reschedule he appointment on Wednesday, but we should be back in the swing of things soon.

bleedorange

04-21-2008, 10:00 AM

Thanks for the update Annie.

Continued prayers to Aidan and the family.

snuffy

04-22-2008, 07:56 AM

Minor setback not so minor

It turns out that the minor setback from yesterday was not so minor after all. Erin called this morning and informed me that due to the constant secretions and attention required to take care of them, they decided to move Aidan back to the PICU. In a strange twist of irony, he is in the same room he was in when he was admitted to after the accident.

At this time, they are doing chest x-rays to see if he actually has pneumonia (previous x-rays were to see if he aspirated and, if so, did that cause pneumonia) and blood cultures to see what is causing the high white blood cell count. They also have him hooked up to an IV for fluids.

When Erin came in to pick up some things so she can stay at the hospital, she informed me that Aidan weighed 28 pounds. This is low, but not low enough to be of concern; however, he has definitely lost a lot of weight ... quite a bit in the last day or so due to the vomiting.

Erin was told by Dr. Cacerras that we should not expect Aidan to be discharged today or tomorrow. Dr. Black comes in tomorrow, so we will have another assessment done soon. Once they rehydrate him and find out where the infection is coming from so they can start the antibiotics, he should be able to keep his formula down and we'll be able to come home.

snuffy

04-22-2008, 07:57 AM

link to additional pictures from newspaper article

http://salisburypost.mycapture.com/mycapture/category.asp?CategoryID=7199

This is the link to the page where you can find more pictures the photographer took during the newspaper interview.

Thanks everyone!

AnniePokely

04-22-2008, 02:42 PM

today's update:

Tuesday, April 22, 2008
Aidan is on his way back home

I just called Erin and she told me Aidan will be discharged at about 1:30 this afternoon and should be home by about 3:30 (we all know how long it takes to discharge someone from the hospital!). We'll get back into the swing of this with HBOT and everything else tomorrow. Aidan has an appointment tomorrow morning with his primary care physician (Dr. Pons), so myself or Erin will most likely post another update tomorrow after that.

Im4OSU

04-22-2008, 07:28 PM

I will keep Aidian in my thoughts and prayers, it sounds like you have a very strong boy there who will continue to fight. God Bless you all.

barryrules

04-22-2008, 08:22 PM

I'm continuing to say my prayers every night for Aidan, and during the day when thoughts of him enter my head.

snuffy

04-24-2008, 06:43 AM

we're home.... again

I got Aidan home yesterday afternoon around 3pm. Dr. Black diagnosed him with tracheitis and constipation. Basically, Aidan has an infection around his trach site and it's been causing the increased secretions, combined with seasonal allergies, the extra mucous is collecting in his tummy and making him sick. He's been put on Augmentin for that.

Now with the constipation. We've been having problems with that since he was put on the formula, but a lot of the meds he is on add to the problem. We've got him on colace for that.

I took Aidan to his primary doctor this morning, and she gave me a script for Zyrtec, for the allergies and Zantac for the reflux problem because he is still spiting up or vomiting occasionally after eating.

His feedings have also changed and we've now dropped to only 5 feedings a day but we went up on the volume to work in dropped feeding and we're supposed to increase the volume gradually over the next week or so. The doctors and nutritionists think that Aidan needs more calories, so we'll see how he does on their schedule, but I don't want him to gain back up to almost 50 pounds either.

I'd like to get away from using the formula as the bulk of his diet anyway. That stuff is NASTY! There isn't any reason why I can't blend up his foods or make my own "formula" that has real food and vitamins in it that work for him and his needs. I'm still hoping that one day Aidan will be able to eat normal foods by mouth and not through a tube in his belly, although, I'm okay with the tube for as long as he needs it.

The trach is another story altogether. Aidan is able to breathe on his own when the trach is capped. He is able to swallow, and he coughs... really well. I'd really like to see the trach removed by the end of the summer. I'm asking you all to pray that Aidan continues to do well and is able to be decannulized by then too. I think it is just a source of irritation to him, both in terms of his health and his overall mood.

The hyperbarics resumed today. Aidan did really well, as he has been doing since we started. I went in with him today and he fell asleep while I watched a movie and kept an eye on him. I am so appreciative of everything that Dr. Rebecca is doing for us and for Aidan. For us to be able to do 2 sessions a day, we have to drive almost 3 hours a day to and from her location, so she has been working to help us raise the funds so that we can get our own hyperbaric chamber at home. I was absolutely floored by the cost of one of these units as it seems like just like everything else Aidan needs it's extremely expensive. We could buy a brand new vehicle or put a down payment on a house for what one of these things costs.

Other things that are going on right now--Russell's mom and brother are on their way here to visit as we speak, and should arrive sometime tomorrow evening. Our van has been acting goofy. It's a 2005 but it's got a lot of miles on it and today I felt what I think is the transmission starting to slip. The blower to the a/c fan in the front went out last summer and then the locks stopped working. We've been able to deal with that, but I'm just praying that the tranny doesn't crater on us. That would really be bad since it is our only vehicle. We're going to have to find another vehicle once Russell finds a job (which I hope is soon.) And finally, I'm looking at taking an online course in medical transcription so that I can work from home. Anything right now to help bring in more income will help, but I have to come up with the $1800 to pay for the course. I don't want to take out any loans right now (and I don't think I could even if I wanted to.) Anyway- we shall see how things go. Right now the most important thing is taking care of the boys.

Please pray that Russell finds a job soon, that we are able to raise the remaining funds for the hyperbaric chamber, that Aidan's trach will be able to be removed in the near future and that he continues to progress. Thanks to everyone for your love and support and the many, many prayers. We are so grateful to you all!

~Erin

AnniePokely

04-24-2008, 10:51 AM

osutuba

04-25-2008, 09:55 PM

So still no luck with a job Russell? Are you applying for anything available? Is the city you live in small or large? Can the Employment office help you?

What about medical bills? Will the state assist with them due to the fact you and Erin are both unemployed? I realize they won't pay for the other treatments, but i suspect they'd pay for the hospital care, right?

We're still praying for your entire family.
Yes, I am applying for jobs when I find ones that I can apply for. I also make use of the Employment Office to help. Concord is a good-sized town, but Charlotte is where most the jobs are located.

As for bills, we are on Medicaid for the time being which is helping immensely. We have also applied for SSI for Aidan (awaiting word on that) and will file for Medicaid Disability for him in the near future (most likely Tuesday or Wednesday). We have also applied for something here in NC called CAP/C which is supposed to work in conjunction with Medicaid (I don't understand it all).

We appreciate the prayers, as always. We are in process of organizing some things and working with one of our therapists to try to get the hyperbaric chamber. We'll be posting a blog update soon on some of those things once we get some of the broad strokes brushed :).

snuffy

04-26-2008, 12:08 AM

Friday, April 25, 2008
possible surgery

I got a call yesterday from the pediatric surgeons office. It seems Aidan's doctors have been discussing the option of him having a device called a "Nissan" put in his tummy to prevent the reflux that he is having. This device is usually put in place at the same time as the g-tube surgery, but it wasn't in Aidan's case. They want to do the surgery this coming week, and we have an appointment to see both surgeons on Monday afternoon, after our appointment with Aidan's neurologist.

I think the surgery is a good idea because Aidan is having multiple vomiting episodes every day. It still has a lot of mucus in it. I don't know what is going to make the mucus go away, but he just has SO much of it.

Russell's mom and brother arrived yesterday evening. I'm glad that they got here safely. We've missed them both so much, and our nephew, Seth, as well. It's a toss up. Being closer physically to one family over the other one. We had planned to get back to OK sooner, but with the whole job situation leading up to Aidan's accident and then the accident itself, nothing ever seems to work out.

I'll be able to post more on Monday once I know more about the surgery and get a chance to talk with the neurologist about things. I don't really know where things stand at this point. Sorry I don't have better news.

Please pray with us that this surgery will help Aidan's reflux problem and that we're able to get the secretions to dry up so that he is more comfortable. Thank you, everyone!

snuffy

04-27-2008, 11:27 AM

New blog address

I have setup a new domain name for the blog. If you now go to http://www.prayforaidan.com, it takes you to this blog. Eventually, I will work on turning it into its own stand-alone site.

--Russell

snuffy

04-28-2008, 08:38 AM

Monday, April 28, 2008

Since Saturday evening, Aidan has not had any episodes of reflux or vomiting. I decided to add some baby rice with bananas to his formula and decrease the volume of formula by the calories in the cereal. So far this has also helped him sleep better at night. He's still getting the same amount of calories but it's less volume and it's something semi-solid that his stomach can actually digest better. Liquids don't sit on your stomach the same way regular food does, and if someone were pushing your entire meal into your stomach in less than 2 minutes, it would make you sick too.

We still have the appointment with the surgeons to discuss the nissan procedure, but I don't think we're going to do it unless it's our last resort. I don't want to put Aidan through another surgery unless it's really necessary. If changing his diet will fix the problem, then that's what I'd rather do. It's been my plan all along to change it anyway- as I've said before, the formula he is on is nasty. All formula is nasty. The only good thing about it is that it is convienient.

Today is also our follow-up appointment with Aidan's neurologist. I'm not sure what to expect there. I'd like to see about getting a SPECT scan done as well as another MRI to see if there is any further damage. The SPECT scan is the one that shows the brain activity in color. It will help us get a better visual idea of the extent of Aidan's injury.

Russell's mom and brother head back to Oklahoma this morning. Please say a prayer for them that they have a safe trip. It's a long drive (about 18-20 hours), even though they are going to stop overnight.

We are trying to organize a golf tournament fundraiser for June. Russell has been working out the details so I don't know much about it. The bracelets should be here in the next day or so. I'll post a picture of them and post info about purchasing them as soon as they arrive.

Thank you everyone for your prayers and your efforts to help raise money for Aidan's treatments, gas to those treatments and special equpiment not covered by insurance. We would not be able to do this if it weren't for your generosity.

I'll post more later after we meet with the doctors.
~Erin

snuffy

04-30-2008, 08:50 AM

Tuesday, April 29, 2008
doctors appointments and updates

Aidan had two doctors appointments yesterday and one today. We met with the neurologist and one of the surgeons who did Aidan's trach and g-tube to discuss the Nissen procedure. Our neurologist wasn't feeling well, so he didn't really do an exam. He asked a lot of questions and said that Aidan is looking good. He's ordered another MRI, a SPECT scan and a 2-hour EEG. They haven't been scheduled yet, but it should be soon.

The surgeon wanted to discuss the surgery because he didn't think we would want to just jump into putting Aidan through an unnecessary surgery. From what we told him, he said that it didn't sound like Aidan has reflux anyway and the nissen wouldn't help throwing up. He was glad that I took the initiative in changing Aidan's formula. He also said that Aidan was looking very good. We weighed him and he weighs just under 35 pounds, so he's gained about 6 pounds since he went to the hospital last Sunday. We'll have to go back in June to have the g-tube resized but that will be an ongoing thing every 3 months as long as he has the g-tube.

A speech therapist came out yesterday to do her initial assessment and she is going to schedule a swallow study to make sure that Aidan is able to swallow different things and not aspirate them. This is a step toward getting him to eat by mouth.

Today was the appointment with the pulmonologist. This was the first time I'd met him and I really like him. He said that Aidan was a lot better than he had expected from reading his chart, and the fact that he isn't on a vent or oxygen dependant is great. He also said that he thinks Aidan will most likely move a lot faster than he had expected in getting the trach removed because he is doing so well right now. It's all good news to me and made me get teary. I'm so ready for his trach to come out. That will be a huge step.

We're doing a month of breathing treatments and then we'll go back for another check-up and the doctor will schedule a bronchioscopy to go in and take a look at Aidan's lungs along with some other things. The next step will be to get him a passy-muir or PMV. The PMV is a one way valve that fits over the trach and will allow Aidan to breathe in through the trach, but he will have to force the air out through his nose or mouth. This will allow him to talk or cry like normal. If he does well with that, then we can start putting a cap over the trach which blocks it completely. We've experimented with doing the capping while Aidan was in rehab and he did pretty well with it.

So far, everything is looking up. Aidan continues to surpass the doctors expectations, and we're seeing new things in him every day. Today for instance, I had a Thomas book that we had bought him the day before his accident and I took his hand to push the buttons on it that make sounds like the trains and he relaxed his hand so that I could help him push them again. He also rolled from his side where the nurse had propped him, to his back. He was well supported so it wasn't an accident. He also moved his mouth when Russell went in to give him goodnight kisses and squeezed his finger. It's little things, but those little things mean a whole lot to us.

I am so amazed at the power of prayer, and at everyone's outpouring of love and support for our family. Please pray that Aidan continues to supass all of our expectations and makes a miraculous recovery. God continues to prove to me every day just how great and awesome He is.
Bless you all!
~Erin

Verb

04-30-2008, 12:07 PM

This all sounds very encouraging. Thanks for the update, Snuffy!

snuffy

05-01-2008, 07:03 PM

We're going to be on the news!

A local news station, channel 14, asked to do a follow up story about Aidan after they were contacted regarding the fundraising golf tournament that is being planned. We met with the reporter this morning at Dr. Rebecca's. Aidan and I went into the chamber while the reporter interviewed Russell and Dr. Rebecca. Aidan fell asleep in the chamber and once we got out, I was interviewed. I really didn't want to be on camera, but it was kind of inevitable seeing that I was dealing with Aidan. I hope the story turns out well.

We were just really unaware just how big Aidan's story was initially. The PR guy for the hospital really buffered all of the questions and calls from the media so we just had no idea just how many calls they were getting. I know he told us that they were getting hundreds of calls just at the hospital alone wanting to know about Aidan. The news channels and newspapers were getting calls. So far, we've only done the one press release on Aidan's birthday, the interview with the Salisbury Post recently and this interview today with Channel 14.

The reporter was very nice and she did a great job making me feel comfortable about the story. If one family can be spared the heartache that we've had to endure during this whole experience, then it's been worth it. Accidents happen and little kids just get away from you in the blink of an eye, but most drowning accidents are 100% avoidable.

Our family failed to communicate Aidan's whereabouts, but no one person is at fault. It was an accident. I just want parents, grandparents, and caregivers to be conscious of the dangers of water. A child can drown in as little as 2 inches of water. A fountain, a bucket of mop water, a dog's water bowl- they are all just as dangerous as a bathtub, pool, lake, or a pond. I don't bring this up to scare people or make parents paranoid, just be aware of the danger and take precautions if you do have a pool or water in and around your home.

Anyway, back to the news story. The story will air at 5pm and will be available online after 7pm at http://www.news14.com.

Thank you to everyone for your prayers and support!

~Erin

snuffy

05-01-2008, 07:04 PM

Just saw the news report ...

I will have to say that I am impressed with how the reporter from News14 put the report together. A lot of it was Dr. Rebecca talking about the therapy, but they interspersed a few sound bites of me and Erin talking. They stressed the therapy and not so much the accident. Once it becomes available online (after 7PM), I will look into uploading it to our YouTube account so it can be seen through here.

If you are watching in North or South Carolina, it came on right around half past the hour. Unfortunately, you won't be able to watch it until it appears online if you have any provider other than Time Warner Cable.

-- Russell

snuffy

05-01-2008, 07:05 PM

Story from News14.com

Link to Story

Family struggles to help child recover
05/01/2008 06:37 PM
By: Jennifer Moxley

CHARLOTTE -- Cabarrus County parents are turning to an alternative therapy, hoping it brings back the little boy they nearly lost to an accidental drowning. He now has severe brain injuries after being found face-down in a pond, having been without oxygen for at least 45 minutes.

Aidan Wright’s parents want to continue the 2-year-old’s therapy at home, but they are struggling to pay for it. Part of the therapy is putting Aidan in a hyperbaric chamber. “What we’re doing is we’re taking oxygen -- concentrated, compressed, under pressure -- and we’re giving it to his brain,” said Rebecca McCall with Alternative Health Solutions.

The hope is that by giving him oxygen in the chamber, parts of Aidan’s brain will come back.
“He's fighting, he's still in there and we hope and pray that we can get him out of there,” said Russell Wright. He lost his job five days before the accident, so the family is on Medicaid. As the oxygen treatment is considered an alternative therapy, insurance doesn’t cover it.

[Aidan being held by father Russell.]
Aidan being held by father Russell.
The Wrights say the treatment is needed regardless.

“Lack of oxygen to your brain, treat it with oxygen instead of pumping more medical chemicals into your body,” stated mother Erin.

McCall is donating her time and services, but the Wrights want to buy a chamber of their own so their son can get more treatment. No matter the stress or financial burden, they say they won’t give up.

“If you had something like this happen to [a loved one], wouldn't you do the same thing,” asked Russell. “I mean wouldn't you go to the ends of the Earth to make sure he was alright?”

The hyperbaric chamber costs about $25,000 and so far the family estimates they’ve raised $9,000. A golf tournament to raise money is scheduled for June 14 at Rocky River Golf Club.

snuffy

05-01-2008, 07:06 PM

Thursday, May 1, 2008
Video from News14.com

I took a little trickery (i.e., downloading an application to record the stream), but the movie is now uploaded to YouTube. You should be able to see it on the left side of the page soon; it takes some time to process. In the meantime, I will embed it here. Once it appears, I'll modify this post accordingly.

__________________________________________

OSUFan

05-02-2008, 11:32 PM

I haven't posted in awhile but I have been reading everyday about Aidan. I continue to keep Aidan and your whole family in my prayers.

snuffy

05-03-2008, 03:09 PM

Friday, May 2, 2008
Bracelets have arrived!

After a very long wait, we finally have received the "Pray for Aidan" bracelets!

We have the following colors in small (7" circumference), medium (7.5" circumference) and large (8" circumference):

green
navy blue
orange
red
royal blue

To receive one, simply donate $5 per bracelet via PayPal (aidanwwright@gmail.com). Make sure you indicate the color(s) and size(s) you would like, as well as the address to where you would like the bracelet(s) sent. We'll do our best to get them sent out within a few days of receiving payment.

--Russell

snuffy

05-06-2008, 10:52 AM

Monday, May 5, 2008
tests scheduled and some pictures

Aidan's tests have been scheduled. He will have a SPECT scan done on the 12th at 11am, a 2 hour EEG May 15th at 8am, and a MRI on May 28th at 8am. Please make a note of those and say a prayer for him that we get good news and evidence of continued progress and healing.

I recently received an email from a grandmother who's granddaughter nearly drowned the same day that we brought Aidan home from the hospital. I don't know all the details, only that her name is Allison and that she fell into a man-made lake or pond. It just breaks my heart to know that another family is going through this pain. Please say a prayer for this little girl. I don't know where they live or anything, just that the little girl is having storms like Aidan was having and they feel like the doctors are giving up. I'm hoping to get more details, but I've asked that she give her daughter (the little girl's mother) my email address and phone number. I don't know what I can do to help other than to listen and pray for them. This is all too new to me, but I feel obligated to be there for someone going through the same thing we've just trudged through. Just pray, that's all I ask.

And for the pictures- I got a few pictures over the weekend and today. The first is Aidan sleeping. I love this picture of him. It reminds me of how he used to sleep before the accident. The next one is of Aidan and my friend's little girl, Abby at the Carolina Speed game Saturday night. And the last one is of Evan checking Aidan out while he was trying to take a nap. Got to love little brothers! :)

http://bp3.blogger.com/_8a8ZOh7n4GE/SB_dmJV2iOI/AAAAAAAAAB8/IM75euuytbU/s320/may+5+006.jpg

http://bp0.blogger.com/_8a8ZOh7n4GE/SB_dmZV2iPI/AAAAAAAAACE/6GenZx2MBLU/s320/may+5+010.jpg

http://bp1.blogger.com/_8a8ZOh7n4GE/SB_dmpV2iQI/AAAAAAAAACM/w2QkgcjfmT8/s320/may+5+024.jpg

snuffy

05-10-2008, 08:13 PM

Saturday, May 10, 2008
updates

Today we've been without a day nurse. With it being Mother's Day weekend, they were having trouble filling the schedule. We're supposed to have 2 nurses a day for a total of 20 hours. We usually have a break in the evening from 5-9pm. That schedule will change next Friday and go down to 16 hours a day, but this is the most time we've spent with Aidan without a nurse being here. I feel perfectly comfortable taking care of him, so it really isn't an issue.

The SPECT scan we had scheduled for Monday has been canceled because anesthesia was not scheduled at the same time for Aidan. I'm assuming that the person who originally scheduled the scan had a reason for not coordinating with anesthesia. The lady I spoke with on Friday said that because of Aidan's age, they didn't want to risk him moving... HA! The most he's going to do is move his mouth and maybe slightly turn his head.... unless he has one of his "seizure" episodes. Anyway, it looks like it will be the end of the month before he will have that scan done. But it looks like it will be the day before the MRI, which will also require anesthesia. I don't know if that's going to happen either because I really don't want him to be put to sleep two days in a row.

The golf tournament is coming together. We're trying to get more sponsors and prizes lined up, but we've yet to get anyone to register for the tournament (I have a feeling most of the registrations will come in around the 2 weeks before the tourney happens. --Russell). I really hope that this picks up because I'm kind of starting to get worried about it. A lot of people have expressed interest. We're working on getting fliers out with registration forms so hopefully this will turn out well.

We have some other people looking into doing a poker tournament or a poker run fundraiser as well. I don't know the first thing about that stuff, so I'm glad someone else is handling that.

We're doing pretty well at selling the wristbands. Several of Russell's mom's coworkers have ordered some, and Matthew's girlfriend has taken some to her work. With those along with all the ones other family members have, we are getting them pretty well distributed. If anyone would like to purchase one that hasn't so far, I have more of the mediums than the other sizes, but we still have plenty.

Russell has a second interview Friday with a company here in Concord. He felt it went pretty well, and should know something about it on Monday. The pay is pretty good for what he will be doing, so that will definitely help things along.

Other than that, there hasn't been much going on. The chair that I ordered for Aidan came in yesterday and it works really well for him. It's like the tumbleform chair he had in the hospital, but it's made by a different company called Special Tomato. I like the shape and covering on this chair better as well as the harness. We're still waiting to hear about the stander, bath seat and wheelchair, but it could take a while with the billing.

I'll try to post more later. I'd like to ask that everyone focus their prayers on Aidan's swallowing ability. He's not swallowing consistently. He did show some interest in chewing yesterday when we stopped at McDonald's as we were leaving Walmart last night. I took a fry and let him taste it and he actually bit down on it and was trying to chew it, so he's showing interest in eating, but we have to work on the swallowing so he doesn't aspirate stuff into his lungs. So, please, focus your prayers on that, as well as Russell's continued job hopes. We greatly appreciate everyone's support and the continued prayers. I really believe that we wouldn't be this far if it wasn't for that.

Thanks!
Erin

snuffy

05-13-2008, 06:32 PM

Monday, May 12, 2008
Mother's Day

I meant to post yesterday to wish all of the mothers a wonderful day, but I just let time get away from me. We spent the day at my mamaw's with my mom and 2 of my aunts and other family. We had dinner and homemade cherry and banana ice cream. Aidan did really well while we were there and slept on the couch for a while. When he woke up I got him down in the floor to sit up for a while. Evan was his usual self, being spoiled rotten by my aunt and cousins.

I won't lie and say I'm doing well. I'm sad. For the past week or so, I've cried every day, multiple times a day. I look at Aidan and I can't help but think of how alive and energetic and happy he used to be. I miss the noise and the mess he used to make. I'd give anything just to hear him say "mama" again. I don't want to wait weeks or months or years.

I don't know how other parents have gotten past this grief- missing the child that once was and accepting the new, broken one. That's just exactly how it feels. Aidan is broken and I can't fix him. No amount of work that I do can fix him. I can love him and I can hold him, and I do. I hold his hand each night as he's drifting off to sleep and I pray that the old Aidan will wake up and come back to life. I want more than anything for the past almost 3 months to have been a horrible dream. I want to wake up and my life be back to the way it was.

So anyway- I spent my Mother's Day trying to forget how I feel like a terrible mom and tried to focus it on my mom and my mamaw, and my aunts. I hope they all know how much I love them, respect and appreciate them.

snuffy

05-16-2008, 10:13 PM

EEG

Aidan had the 2 hour EEG yesterday which he had to be sleep deprived for. It was interesting trying to keep him awake. He did well during the test and finally had a "seizure" episode for them to record. The also were videotaping him during the test so that they could compare the EEG with his actual response.

The neurologist called early this morning to talk to me about the results and he said he can't say for certain that these are or aren't seizures. They aren't occuring in the part of the brain that epileptic seizures occur. These are happening deeper in the brain and although there is a spike on the recording at the beginning of the episode, his activity actually slows down after the initial spike.

He said this very well could be Aidan's brain's way of "waking up" from all of the drugs that he had in his system. It makes sense to me because the episodes have progressed from being very short, almost unnoticeable startles to involving his entire body. He jerks his arms and legs, his head turns and his eyes jerk in the direction his head is turned. It's alarming to see.

So, we're supposed to be trying to give him a dose of ativan if he has a bad episode and see if that helps calm them. He is generally fairly agitated in the evenings but usually a dose of tylenol will help him settle down and go to sleep.

Today has been a rough day on both of us. Aidan did fine this morning at his hyberbaric treatment and even on the way home, but once Russell and the nurse got him in the house he started fussing. He hasn't calmed down for more than 10 minutes since 11:30 this morning. He's cried and cried and fussed. I don't know what's wrong with him. We've given him tylenol, gas drops, ativan and extra clonidine and he still hasn't settled down. He's so tired but he still is fussing. He'll start to settle down and this his little face scrunches up and he starts crying again. It's like something is hurting him and I just can't figure out for the life of me what is wrong.

I'm at my wits end this evening. I feel absolutely useless. It's so easy for everyone around me to act concerned, but when things get bad or they've had all they can stand to see Aidan the way he is, they just walk away. It must be so nice to just turn your back on it and pretend he's okay. Aidan isn't okay! He quit being okay 3 months ago when he managed to drown in a pond with 6 capable adults around. He was supposed to be safe! He was supposed to be with people that were watching him and playing with him. I'm so damn angry right now and I'm sick... I'm sick to death of what my life has become. It's a nightmare! I thought things were going to be getting better- that Russell and I would finally be able to get out and get our own place and we'd have our little family and everything would be great. Boy was I ever wrong.

I don't want to drag everyone down with my pity party. Everyone wants to know how Aidan is... well, here's a day in the life of Aidan. It's a particularly bad day and one I wish would end soon. Sorry for being bitter, but I can't help it.

osutuba

05-16-2008, 10:17 PM

Yeah ... today was about a 3 on a scale of 1-10. I was out of the house all afternoon (till about 4) and Erin informed me of all this. She and her mom had a HUGE blow-up a few hours ago. It wasn't pretty.

snuffy

05-16-2008, 10:20 PM

Tuba, how is the job hunting going?

osutuba

05-16-2008, 10:44 PM

I had an interview a week ago for a position. The guys making the decision are currently out of the country, so I hope to hear something soon. I have a job fair to go to on Wednesday if I don't hear anything between Monday and then.

OSUFan

05-16-2008, 11:09 PM

Still praying for all of you!

barryrules

05-17-2008, 09:08 AM

Tuba will you do me a favor?

First of all give Erin a HUGE hug and a kiss on the cheek. Then tell her to go out for a few hours of Erin time. I know it will be hard for her to do, but it sounds like she could really use a few hours away from it all.

hang in there, we are all praying for you.

osutuba

05-17-2008, 02:12 PM

snuffy

05-19-2008, 08:15 AM

Saturday, May 17, 2008
A new day

Today was another day. Aidan was a little better. He didn't sleep well last night. We didn't have a nurse today again. It wouldn't have been that bad if yesterday hadn't been so bad. He didn't fuss as much today as he did yesterday. Aidan was actually able to take a couple of naps and catch up on the sleep he missed. I don't know if keeping him up so much the other night for his EEG was the culprit, but something caused the change.

I've been trying to change his diet gradually from the formula they put him on in the hospital. He's done well so far, so I don't really know what exactly would have triggered the irritability. He's asleep now and I'm grateful for that. The nurse comes in at 11. Hopefully he'll have a peaceful night tonight.

snuffy

05-19-2008, 08:17 AM

Sunday, May 18, 2008
Hoping to find out something this week

Aidan continued to be grouchy through the first part of today. He did eventually calm down some after some people came to do some "energy work" (Reiki/Healing Touch) on him this afternoon, but he was still fussy from time to time, especially when we put anything through his G-Tube.

We had already ruled out everything else (gas, constipation, storms, new injuries, etc.), so Erin checked his ears as a last resort. His left ear had a lot of wax in it and his right ear was a little red. She called Aidan's PCP and got an appointment setup for tomorrow morning. It may be nothing, but he may have an ear infection. Nana checked it when she came in this evening and she didn't see anything that indicated he had one. Still, we would like to make sure since he is doing they hyperbaric therapy.

-- Russell

snuffy

05-20-2008, 08:10 PM

Tuesday, May 20, 2008
update

I took Aidan to the doctor yesterday morning and he doesn't have an ear infection, which is good. He seemed to be his usual self yesterday. We're thinking he was just having pains from being constipated. He's on so many meds that cause constipation, so we have to keep giving his stuff to conteract them.

He did have a lot more seizures yesterday, so I followed our neurologists plan of giving Aidan ativan if he has a pretty severe seizure and see how it affects him. I had to give him two doses yesterday about 5 hours apart. The medicine seemed to help because he didn't have but maybe one or two little startles and then a bigger one which I gave him the second dose for. We'll have to keep this up until Friday and then I'm supposed to call the doctor back and let him know how Aidan did.

I got a call from the anesthesiologist who will be putting Aidan to sleep for him MRI next week. They just have to go over his medical history and all of that stuff. I have to call the lady who does the scheduling and get the SPECT scan rescheduled because the doctor doesn't want Aidan to have 2 tests requiring anesthesia so close together, and he'd rather us do the MRI first.

Aidan's doctor said that she sees a big difference in him from the last time she saw him. He actually followed her with his eyes. I see him every day, so I don't always see some of the changes right away. He did stretch his legs and arm when he woke up from a nap which is something new.

Other than that, not much is going on. Still waiting to find out about when the swallow study will be scheduled and we're waiting on the stander and Aidan's wheelchair/stroller and bath chair. It will be several more weeks before we hear anything about those, though.

Please pray for Aidan's continued progress. He's coming along well. I look at him and think how lucky we are to still have him here. I can't imagine my life without him in it. I just wish he was running around and playing instead of lying in a crib watching a movie right now. I have hope that he'll be running around eventually... I just have to hold on to that. Please also pray that this golf tournament fundraiser goes well. I'm getting nervous about it because we haven't had anyone register to play in it yet. I'm hoping that they will start coming in the next week or so.
Thanks everyone!

~Erin

snuffy

05-25-2008, 05:56 PM

Sunday, May 25, 2008

Sorry for not posting in a few days. There really isn't a whole lot to tell. Aidan is doing okay. He's been pretty irritable today. The past few days he's done well. The dietitian came out on Thursday and we pretty much got off on a bad note. She didn't seem all that supportive of me creating a blenderized diet for Aidan. Her excuse being that he wouldn't get enough nutrients from a combination of babyfood and other foods. She also said it would be a lot of work. I know it's a lot of work. I ended up showing her the jars of babyfood and the formula that I had worked out. I spent a lot of time reading and trying to balance the stuff out. I also showed her Aidan's liquid multi-vitamin (IntraKids). It has everything that Aidan might not get enough of from his food.

The formula that he is currently on is causing him a lot of problems. The dietitian suggested a different formula that we will talk to the doctor about getting him started on instead of what he is on. I'm not completely opposed to using formula. It is a convenience, but it makes me feel lazy to just open a can and pour it into his tube. I don't know. The past week has definitely taken a toll on me personally. I'm exhausted. There is so much stuff that needs to be done and I don't have the time or the energy to get it all done let alone anything that I WANT to do.

Aidan has an appointment with the pulmonologist on Tuesday, so hopefully we'll find out something about the bronchioscope or the passy-muir valve.

Hope everyone has a fun and SAFE Memorial Day. Please, if you are going to be near water, keep your children safe. Too many children drown this time of year. I hate to think of anyone else going through this hell.

Please continue to say prayers for Aidan and for Allison. I have been emailing her grandmother and they had to reset her arm because she dislocated it. She is storming that badly. Pray that her doctors are able to find the right medicine to help control her storms and that they find a way to get her hyperbaric treatments.

I also ask that you pray we get in some golf tournament registrations. We were hoping to put the proceeds of it toward getting Aidan's hyperbaric chamber. With gas at $4 a gallon now, driving to and from Charlotte every day is taking it's toll on us and our van. This is our only vehicle, so I would hate for anything to happen to it. Also pray that Russell hears something about these jobs that he has interviewed for. We have been hoping and praying to hear back about one in particular, but the people doing the hiring are out of the country on a job.

Thanks everyone!
~Erin

cactusjack

05-26-2008, 10:04 AM

Continued prayers for you guys. God bless you.

AnniePokely

05-26-2008, 05:13 PM

Thanks for keeping this thread updated snuffy. I really appreciate it. I just don't have the time to do it/keep up with the board much right now.

jakeman

05-26-2008, 05:22 PM

Continued prayers for you guys. God bless you.

Yep, every day.

jakeman

05-26-2008, 05:23 PM

Thanks for keeping this thread updated snuffy. I really appreciate it.

snuffy, ditto.

barryrules

05-26-2008, 06:55 PM

Yes, thanks for the updates and I pray every day for little Aidan.

osutuba

05-26-2008, 07:00 PM

I know I post this a lot, but it always bears repeating every so often:

Thank you to everyone who has offered prayers and other support so far. It is all greatly appreciated.

snuffy

05-29-2008, 10:24 AM

Wednesday, May 28, 2008
Dr appointment and MRI

Aidan had a follow-up appointment with the pediatric pulmonologist yesterday. To quote him, Aidan "sounds beautiful!" His lungs are really clear and and he sounds good. We have a broncoscopy scheduled for June 11th. Aidan will be put under mild anesthesia and they will pass a scope through his nose down past the trachea and into his lungs. While he is under the doctor is planning to take Aidan's trach tube out to see how he responds and to make sure his trachea doesn't collapse. This is just one step closer to getting the trach tube out. When we get through this and everything looks good, we'll meet with an ENT (ear, nose, throat dr.) to get Aidan fitted for the passy-muir valve that will allow him to breathe in through the trach tube but he will have to force the air out of his nose and mouth. So everything is looking great in that area. I'm excited to think that Aidan will be able to have his trach removed by the end of the summer if everything goes well.

Today was the MRI. Everything went well except they had to stick him 5 times to get an IV started. He looked like a little pin-cushion. We probably won't have any results back on it until tomorrow or Friday. He's slept for a good part of the day, so I'm hoping he'll rest tonight.

Sunday night will be our trial night alone with Aidan. So far since he's been home we've had a night nurse, but with our hours dropping we have to rearrange the schedule. I wanted to try not having a nurse for an evening to see if I feel comfortable not having someone sitting with him at night. I'll have the baby monitor right beside him so I can hear if he needs to be suctioned or anything like that, but I'm a paranoid mommy. I still go in to make sure he's breathing. I was bad before the accident, but there is nothing like seeing your child lifeless and not breathing to make you fear he'll just stop breathing again. Irrational, I know, considering how well he's doing, but hey, I'm neurotic and a control freak! :)

On another good note, Aidan hasn't been having as many "seizures" as he had been having. In fact I don't think I've seen him have any at all today. The nurse said that he had a few last night all provoked by her giving his routine cares (meds, etc.) Other than that, he's done pretty well.

Please say a prayer that we get some good news with the results of his MRI. I'm hoping for a miracle and the report to show that Aidan's brain is healing. I just need to know that all of our efforts are paying off. I can see the little changes in him, but it would be great to see them on the MRI films.

Thanks everyone!
~Erin

OrangeFan4Life

05-29-2008, 01:43 PM

Still checking this thread often and still praying for Aidian! Parents too!

Go Pokes!!!

osuno1

05-30-2008, 08:11 AM

Praying for you guys everyday! Keep up your positive attitude.

OSUFan

05-30-2008, 08:29 AM

That last report sounds very positive! I hope the MRI showed good results! Still praying for you all!

snuffy

06-01-2008, 05:09 PM

Saturday, May 31, 2008
Just a post

I've been sitting here watching Aidan while he sleeps on the couch. He's finally calmed down from being upset earlier this evening and he looks peaceful. I've been looking at pictures of him from a year ago- right before I had Evan. It is so amazing to me that it's only been a year. It feels like a lifetime ago. Aidan has lost that babyish look about him and is starting to look like a little boy instead of my baby.

I'd give anything in the world to go back a year and redo everything if I knew I could prevent this outcome. I'd give anything to go back to the days of chasing him around and taking him to the zoo, all while being 9 months pregnant. I'd do it all over again in a heartbeat. I wouldn't have uprooted our family and I would watch him like a hawk and keep him right beside of me.

I know I'm being irrational. I just miss the way things used to be. I never thought I was happy before, but I was. I am so blessed to have these two baby boys. I love them more than anything in the world and I'd give up my own life to give Aidan a future-a normal future.

I didn't mean to turn this into a sob-fest. So..... We probably won't have any results from his MRI until Monday or Tuesday. We have an appointment with the neuro-opthalmologist on Wednesday. Aidan has been doing really well with the seizures. He hasn't been having very many of them at all. They've significantly decreased in frequency and severity. I have noticed a slight twitching of his eyes. I'm not sure if that is an accurate description. I know there is a term for it, but it's like his eyes are actually moving up and down and they don't both move together at the same time. I will be bringing this up to the neurologist when he calls. I don't think it's something really significant considering that the seizures are getting better.

Well, I thought I'd post a little bit of an update for all of you reading. I'll post more once I talk to the doctor and get the MRI results.

~Erin

snuffy

06-01-2008, 05:11 PM

Sunday, June 1, 2008
I'm really disappointed

Let me apologize for expressing my anger about the comments I read on the news page about the little boy who nearly drowned in a pool in Phoenix. By no means did I want anyone to start flaming my blog readers.

Our friend, who posted a comment to my post has received "hate mail" because of her comment and I DO NOT condone such behavior. I respect her position, whether I agree with it 100% or not. I used to be one of those people who would wonder how something terrible like a near-drowning could happen and would ask, "where was the parent?" It's something that would come to my mind immediately.

Yes, there are precautions that every parent can make to TRY to keep their children safe, but the fact remains that children can and will do anything to get what they want. They are curious and they are more observant and determined than we give them credit for.

I deleted my post because I don't want to ruffle any more feathers. "S", I'm sorry for the emails that you have received. I do appreciate your opinion and your prayers for Aidan. Please accept my apology.

BobBarker

06-01-2008, 06:34 PM

I think the term she is looking for dealing with the boy's eyes is "nystagmus".

snuffy

06-02-2008, 10:09 PM

Monday, June 2, 2008
MRI results

Aidan's neurologist called this morning to give us the results of his MRI. He said that he was pleased to see that there was no further damage in the areas of infarction/stroke. The basal ganglia area, he said, was preserved. He also made the statement that had Aidan not started receiving hyperbaric treatments, it would be a completely different MRI. Whomever reviewed the films before our neurologist said that there were some areas of scarring in those areas where he had the strokes, but Dr. C didn't see them himself. I guess it's just a difference of interpretation.

On the not so great side, there was a little more atrophy of the entire brain and the ventricles are enlarged, but there is NOT any swelling, which is usually associated with the enlarged ventricles.

I asked what else we could be doing and if any of this is reversible or if it will improve. He said that we should definitely continue the hyperbarics and increase his ambrotose to 2 pills in the evening instead of one. The ambrotose is a really strong anti-oxidant. Aidan is already on all of the vitamins and anti-oxidants that he has recommended. He did say that it is possible for the brain to heal, and we've already put a halt to further damage or softening of the brain, which is good.

I wanted a miracle, but I'll take this. Yesterday was extremely difficult for me. We didn't have a nurse at all yesterday or last night, but that wasn't what made it difficult. I guess I'm just very depressed. All I could do was look at Aidan and cry yesterday. I miss EVERYTHING that he used to do. I want him back the way he was. I want him to have a future that includes going to school and playing sports or whatever he wants, going to college, getting married, having kids... I want all of that for him. I don't want him to have to depend on people to do everything for him. I want him to be able to run and play like a normal little boy his age. It just sucks... all of it. This shouldn't have happened to Aidan! It shouldn't happen to anyone. It's like being stuck between living and dying. He's trapped.

I'm grateful for the progress Aidan has made. We have the appointment with the neuro-opthalmologist on Wednesday and then next Wednesday, the 11th is the brochoscopy. I will definitely post something after the doctor's appointment Wednesday.

Thank you all for your continued prayers. Please, keep Aidan in your prayers. Pray that we continue to see progress and improvements and that this golf tournament is a success. We really need to have that hyperbaric chamber at home. With gas getting so expensive and reports that it could possibly go up to $5 a gallon, I cringe to think how that is going to impact us taking Aidan to his treatments. We're already going only once per day when he really needs 2 treatments per day because of the gas and the time involved to drive to and from each day.

To anyone who is planning to register for the golf tournament, a note:

PLEASE get your entry forms in by THIS Friday (the 6th), as we have to give a count to the golf course that day. If for some reason you get your entry mailed in and believe it will be late, please email us and let us know that you will be attending, if you be staying for dinner after the tournament, and that you've sent your form. Also, payment for registration has to be in by Friday; we will only accept payment for late entries to the Closest to the Pin and Longest Drive Contests. This is different from what is stated on the registration form.

I cannot stress this enough. We have to pay the golf course for the rounds of golf and for the catering, which is why we need the entries ASAP. We hope to see you all out at the golf course. We'll have Aidan out there during the check-in, so you can meet him then.

Thank you!
Erin

snuffy

06-05-2008, 09:17 PM

Wednesday, June 4, 2008
update

Today was Aidan's appointment with the eye doctor. He just confirmed what we already knew. Aidan is "cortically blind." What this means is that while Aidan's eyes are perfectly healthy, his brain isn't able to interpret visual information. He responds to light and bright colors and high contrast (ex. black and white designs), but he doesn't follow faces or toys. He can't look at me or anyone else and actually know who or what he is looking at. This is what we already knew because of where the damage is in his brain.

This could be permanent or it could be temporary. Because he is so young and because we are doing everything we can to help his brain heal and repair the damaged areas, we're hoping that the blindness is temporary and that it will improve over time.

I don't know what else to say. It isn't like the doctor told me anything that I didn't already know, but it's the confirmation of that fact that really upsets me. My son can't look at me and know that I'm his mother. It breaks my heart.

Right after the accident while Aidan was still in the coma, I had this vision of Aidan waking up like most of us do from anesthesia, groggy but able to say "momma" and able to move. I just thought he might be weak. I pictured him leaving the PICU to the regular peds unit and us wheeling him around in the little wagon or car like I would see the other parents doing. I thought my child would recover and be normal.

Lets just say that my nice pleasant daydream was squashed. It became apparent that I was horribly naive about the extent or seriousness of Aidan's accident. And then again, maybe that isn't the case. I just wanted to have hope that my baby was going to wake up and be the same little boy, that the whole gut wrenching experience was nothing more than a nightmare. So, maybe that explains why I'm so depressed.

I wake up every day and I wish that I could go back and have my old life back. I pretend that Aidan is going to wake up from sleeping in his little car bed and come running in our room and climb up in the bed with me and snuggle. My faith is wavering. I want to put this all in God's hands, I want to just let it all go and move on, but I can't. I can't move on. I'm lost. I don't know if I'm doing the right things to help Aidan. I've been thrown into a world that I knew nothing of before this accident.

Oh, well.... enough of the depressing rambling. Aidan is fine. He was a little irritable today, but he calmed down this evening and was really sleepy.

On the golf tournament front, we don't have any registration forms in. We've had some people say they are going to be playing, but nothing in writing. I have a feeling this whole thing is going to be a flop, and I'm afraid it's going to end up costing us in the end. It's pretty disappointing. I'm hoping that we'll get some forms in the mail tomorrow and Friday, although Friday is our deadline and we have to tell the golf course how many players we have.

Please say a prayer that we have a good turnout for the tournament. Pray for healing for Aidan and for his sight and for me to find some peace in dealing with all of this.

Thanks!
Erin

snuffy

06-05-2008, 09:20 PM

Thursday, June 5, 2008
Golf Tournament Update

As of today, we have received a whopping one entry. There are a few other verbal commits (4-6 teams), but we hope to get more in the mail tomorrow.

I took the opportunity to call the golf course to see if I can get some extra time since response has been so bad/slow. They allowed me to give a final number for the tournament on Monday (6/9); however, I have to have a final number for food by tomorrow.

Therefore, if you are thinking about entering and want to eat at the clubhouse after the tournament is over, please email golfingforaidan at gmail dot com and let us know before 5PM Eastern Time tomorrow so we can give a firm number for dinner. If you don't plan to stay and eat, you have until Monday to get your entries in to us.

All the information is available at http://www.golfingforaidan.com.

THANKS!

-- Russell

snuffy

06-08-2008, 05:15 PM

Friday, June 6, 2008
Golf Tournament Update 2

Due to the lack of response (only 2 entries received as of today), the decision has been made to postpone the golf tournament until sometime next month. I'll visit with the Tournament Organizer at Rocky River Golf Club next week and get a new date established ASAP. Watch the tournament website for more information.

I appreciate everyone's patience and consideration while we work on reorganizing things.

-- Russell
at 9:37 PM

snuffy

06-08-2008, 05:16 PM

swallow study

Aidan has a swallow study scheduled for Monday afternoon. They are checking to make sure he is actually swallowing instead of aspirating food into his lungs. We have to do this study before we can start trying to give him food by mouth again.

The bronchoscopy is scheduled for Wednesday morning as well. Just thought I'd remind everyone of that.

Please say a prayer that both of these tests/procedures go well and that we get good results.

Aidan is doing well. We got a new formula for him that is not milk based and he seems to be doing much better on it. It is a pureed food formula with juice and fiber added to it. We still add a little cereal and extra fruit or veggies to it, but in just a few days we've seen a big difference in his temperment.

We're going to my cousin's graduation party this afternoon. I made the cake for the party. It's a a park, so I'm hoping that Aidan likes being outside for a while. Hopefully it won't be too hot for us out there.

Thanks everyone!
Erin

snuffy

06-08-2008, 05:17 PM

Saturday, June 7, 2008
geez, it's hot!

We just got back from my cousin's graduation party. It was SO HOT! We all spent the entire party fanning Aidan to keep him cool. He ended up going to sleep in the stroller.
(this is the cake I made for the party)

One of my cousins got a little tiny chihuahua puppy and we put her up on Aidan's chest so he could "pet" her. His eyes got really big, especially when the puppy gave him kisses. My mom got a couple of pictures so I'll upload them when she emails them to me.

Evan went with my brother and his girlfriend to her step-brother's graduation. They wanted to take him since her niece and nephew would be there and Evan could play with them. He likes meeting new people, so he should be good.

Well, I hope you all are keeping cool. I think it's a good excuse to take a nap. :) Have a good weekend!

snuffy

06-08-2008, 05:18 PM

Sunday, June 8, 2008
pictures

These are a few of the pictures my mom got of Aidan yesterday. I love the first one. It looks like he's smiling in it. He really liked the puppy. Oh, I forgot to mention that my mom cut Aidan's hair Friday night. So he's got his short summer hair cut, just in time for the 100 degree sweltering heat.

snuffy

06-09-2008, 10:16 PM

Monday, June 9, 2008
swallow study results

Aidan's study was this afternoon. The speech therapist met us at the hospital so that she could get the results since we are going to be transitioning to a different therapy group next week. They gave Aidan little tastes of applesauce and a honey thickened liquid with barium added so they could see it on the x-rays.

Aidan is swallowing, but he is also aspirating small amounts and he's not coughing in response to the substance being in his trachea instead of the esophagus. He only coughs once the food gets past the trach tube.

This wasn't the news I was hoping for, but we'll continue to work on it. His swallow reflex is a little slow, but he is able to swallow his saliva and coughs well enough to handle his secretions. The speech therapist at the hospital suggested using a "vital stem". It is like a tens unit and delivers an electrical current to help strengthen the muscles that help Aidan swallow.

We've been looking at getting a biomodulator that other parents of near drowns are using. I was told that Medicaid would possibly pay for one, so we are going to look into that soon. Otherwise the unit is about $4000 and there is a weekend long workshop on how to use it, that I would have to go to (out of state). It's worth considering if it will help Aidan get better.

Well, I just wanted to let you all know how the study went. The bronchoscopy is Wednesday morning, so I'll definitely post after that.

Please pray that we get some good results back on Wednesday following the bronch. Pray that Aidan gets a stronger swallow and cough reflex. Thank you everyone!

~Erin

im4okst

06-11-2008, 07:50 PM

Thanks for updating all of us.

Verb

06-11-2008, 10:19 PM

Thanks for updating all of us.

Ditto. We really appreciate it, Snuffy.

snuffy

06-12-2008, 01:00 PM

Wednesday, June 11, 2008
I think our readers are getting restless :)

Okay, sorry for waiting until late to post an update on the bronchoscopy. Aidan did well going to sleep and they only had to stick him twice to get an IV started. The doctor let our nurse stay and observe the procedure, so she got to stay with Aidan the whole time, which made me feel better.

The doctor said that everything looks great. Aidan's adenoids are a little swollen but he said it wasn't anything to worry about right now. His vocal cords look great. His upper airway is clear as is the rest of his trachea. They were able to take the trach tube out to see if there was any collapse and there wasn't. So, everything looks really good and we'll have an appointment set up with an ENT to get Aidan the PMV.

They haven't called to set that appointment up yet, but we should hear something tomorrow. While we were at Levine we went down to the rehab floor to say hi to the therapists and nurses that took care of Aidan while we were there. They were all happy to see him and kept going on about how big he's gotten.

So, there... I hope everyone is pleased with the update. :P

We've got the golf tournament rescheduled for August 9th. Please pray that we get more players to register. We're lowering the entry fee to hopefully draw in more people. I don't know... I'm looking at what our costs are and, boy, I wish we were getting the course's cut of the deal. We've made the registration form so that it can be filled out and emailed to us or faxed instead of waiting on snail-mail. I'm thinking of other things to do to raise funds as well. We're considering auctions or raffles. I think all of which can be accomplished online.

Well, The rest of the week is pretty quiet. We just have some hyperbaric treatments and then I'm going to try to spend the weekend gathering and pricing items for a yard sale.

Thank you all for your prayers for Aidan. We greatly appreciate all of your love and support.

Erin
p.s. I was trying to be funny with my sarcasm. I'm so grateful to those of you read this blog or check it every day to see if there is news about Aidan. He's a little heartbreaker, I'll tell you. Even in cyberspace he's got the ladies wrapped around his little finger.

snuffy

06-13-2008, 08:32 PM

Friday, June 13, 2008
okay, so we have music now

I figured out how to add some music to the site. I got it from www.playlist.com. I use it on my myspace page, and thought it would be nice to add some music to Aidan's blog. These are just a few of my favorite songs right now. I hope you like them. If you have any suggestions just throw them out there.

Aidan is doing well. We have met with some new therapy providers since the ones we had were only approved for about 9 visits. I'm hoping that Aidan will continue to respond well to the therapies.

Keep praying for him. The power of prayer is an amazing thing. Aidan is such a little trooper and God is working miracles in and through him daily.

Thanks everyone!
Erin

cactusjack

06-14-2008, 03:53 PM

All my tears for aidan and the family are prayers to God. Praying for strength for the family.

osutuba

06-15-2008, 12:57 AM

I think the term she is looking for dealing with the boy's eyes is "nystagmus".
That's what it is, all right. More specifically, a see-saw nystagmus. Go figure that it is the rarest type out there.

snuffy

06-15-2008, 11:13 PM

Sunday, June 15, 2008
Yet another Mark Schultz song for inspiration!

Erin and I recently purchased Mark Schultz's Broken and Beautiful album, more specifically for a couple of songs we knew were on there. It was the first song on the album, though, that really grabbed my attention. The song is called "40 Days".

We were listening to it today on the way back from a visit to Erin's grandparents when I said that we should add the song to our playlist on the blog and asked her why I thought this. I was thinking of the lyrics, but Erin said something that immediately grabbed my attention: "Because Aidan was in the PICU for 40 days?". I had totally forgotten how long Aidan was in the PICU, but that made perfect sense.

For me, the lyrics say a lot. The lyrics talk about how when we are in the midst of a trial or troubles, we should seek out God, as he provides us with everything we need to make it through.

Here are the lyrics:

Lord, I came to the mountaintop
To be with You
I felt Your grace falling down like rain
And I was made new

But there are times like now when I’m all dried out

(Chorus)
And it’s like 40 days out in the desert
Feeling like I’m lost forever
And crying out for You
But in these 40 days I’m going to seek You
With my heart because I believe You
Have brought me to this place
These 40 days

Lord, Your ways are not my own
But I trust You
Lord, You say, “You are not alone,
For I am with you”

But there are times like now when You can’t be found

(Chorus)

‘Cause You are with me
You never leave me
Even when my world turns upside down
‘Cause there are times like now when I will
Trust somehow

(Chorus)

Well, there is a light at the end of the tunnel…I know

snuffy

06-16-2008, 09:08 PM

Monday, June 16, 2008
a rough day brightened with smiles

Aidan had a pretty rough morning and early afternoon today (Sunday). He had several bouts of vomiting and had to be suctioned a lot today. We finally figured out what caused the increased secretions and the mucus on his stomach was what was causing him to vomit. Let's just say that he was pretty miserable, as were Russell and I, especially after getting to bed at 3:30am. We didn't have a nurse Saturday night and I'm not comfortable not having a nurse with Aidan at night. Russell and I have to sleep sometime. As long as Aidan has the trach, I want a nurse with him during the night. I don't need for him to vomit and aspirate it into his lungs.

Anyway, after a couple came this afternoon to visit Aidan and do some energy work (reike/healing touch) with him, he calmed down and we were able to go visit my grandparents and family for Father's Day. When we got there I put Aidan on the couch and my Mamaw started talking to Aidan and showed him my cousin's little puppy (the one in the pictures from last weekend). He immediately smiled! He smiled not once, but 3 times! I saw the first one I started bawling, I saw the second one and I couldn't stay there, so I missed the 3rd. Nothing I've done has gotten a smile out of him. I was so happy to see him smile. I know in the picture last week it looked like he was smiling, and he makes those kinds of faces, but you can never really distinguish whether they are smiles or grimaces. His smiles today were obvious smiles.

Aidan also turned his head twice to look at Evan while we were driving down to my grandparents (it's a 45 minute drive). Evan evidently knew that Aidan was looking at him and said "hey" to him. It was so cute. I wish I had had a video camera to capture it.

Anyway, I just wanted to share this news with you all. Let me just say that seeing my baby smile after 4 months is one of the best thing in the world.

Monday (tomorrow) marks 4 months since the accident. Our lives have been forever changed. I don't know how I feel from day to day. I have my good days and bad days, just like Aidan does. I still have hope that Aidan is going to recover from this, even though some days it feels like I'm at the end of a very long tunnel. Seeing Aidan smile renewed that hope.

Please continue to pray for Aidan's complete recovery. Pray that he continues to surprise and amaze us each day with his achievements. I hope all the fathers and grandfathers enjoyed their day.

~Erin

barryrules

06-17-2008, 07:59 AM

I know pets can be expensive to keep, but I think a puppy for Aidan is a great idea. Animals are very theraputic. If not getting a puppy for him, maybe find a local group that has trained therapy dogs that can come visit Aidan regularly.

orangeblood

06-17-2008, 11:01 AM

That post just makes me smile too. That is wonderfull news I got teared up reading it. Great for Aidan.

snuffy

06-18-2008, 09:16 PM

2 months at home

Aidan has been home for 2 months, not counting his brief stay at the hospital shortly after coming home. It feels like it's been much longer. Monday was our follow-up appointment with the rehab specialist. She said that Aidan is looking good. We addressed some issues with his leg braces and hand splints, but overall, there isn't much to tell. I filled her in on Aidan's progress and other doctor's appointments. I told her about the broncoscopy and our hopes to get Aidan weaned off of the trach by the end of the summer. She seemed to think this was good.

This isn't one of my favorite doctors, but she is nice to Aidan. We have to go back in 4 months to look at possibly having botox injections in the muscles in Aidan's legs if we can't get them to loosen up more. I think that once we get the stander a lot of his range and flexibility will return. It's just going to take some work to get him back to what he was able to do when we were in the rehab facility.

A lot of people have said that we should consider getting a puppy for Aidan. I'm seriously considering it because neither Paco, our chihuahua, or Max, my mom's Yorkie, wants to have anything to do with Aidan. They act like they are terrified of him. Bear, our lab, isn't allowed inside since we live with my mom. If we had our own place, I'd rather he be able to come inside because he is really well behaved and he likes to be with us. Russell and I always said if we were to ever get another dog it would be one that wouldn't shed so much. We really would like to get a miniture labradoodle since they either don't shed or have very minimal shedding, and they have similar personalities and traits of labs. Bear has always been good with kids, and I think a similar puppy would be good for Aidan.

I don't want another small, yippy dog, though. The minitures are between the 35-40 pound range full grown. I did find a group that donates these kind of dogs to families with medical or special needs, but they are in Texas. I'm not all that fond of the idea of going to a breeder when there are so many dogs and puppies in shelters. Finding a labradoodle puppy or similar to meet our needs is going to be nearly impossible. Anyway, I guess we'll just have to wait and see what happens and borrow my cousin's puppy, Bella, so that Aidan can love on her.

I'm willing to do just about anything to see Aidan smile on a regular basis and eventually be able to run around and play with a puppy. That's what I dream about.

Evan goes for his 1 year old check-up tomorrow. I'm sure that will be fun... really. The rest of the week I have to get things ready for his birthday party. I'm making his cake to look like a sand bucket and a beach ball. I hope it turns out okay. I'll be sure to take pictures of everything and post them. Saturday is a poker run for Aidan. I'm not really in the loop on that one because someone outside of our family is planning it. I just know when and where to show up after the bike ride. I hope they have decent weather and turn out for the event.

I just wanted to say thanks to everyone for their continued prayers, love and support for Aidan and our family. Even though we don't personally know a lot of you, I'm glad that you all have been touched by our little man. I wish that you all could know him and spend time with him. He's a miracle.

Blessings,
Erin

snuffy

06-23-2008, 10:42 PM

Sunday, June 22, 2008
Happy 1st Birthday, Evan!

Yesterday was Evan's first birthday. We had his party Saturday. I promised to post some pictures, so here they are, along with some pictures of Aidan in his new "ride". His wheelchair/stroller was delivered on Friday. It has a tray on it so I decided to try some hand-over-hand drawing with him, and we made a card for Evan for his birthday. I tried to post this last night but we kept having storms and the power was flickering.

We have checked out a new hyperbaric facility. They have the hard chambers there. The grant that we received from HUGS should help us pay for most of the treatments and the other money that we have raised to buy a soft chamber will be put toward other equipment like the biofeedback unit, and some physical/occupational equipment that insurance will not cover. I'm looking at getting a hammock swing and stand for Aidan. The occupational therapist put him in a hammock last week and he seemed to like it. I'm also hoping to get a therapy table built for him so that we don't have to get him down on the floor all the time. It's really hard on my back to try to get him up from the floor, I'd hate to see how it's going to be when he gets much bigger. Aidan already weighs 35 pounds and is 36.5 inches long, at 28 months old. Everyone comments on how big he is.

Well, I hope you all enjoy the pictures. Notice the one with Bella (the puppy) snuggled in next to Aidan in the crib. She slept like that for a long time on Saturday.

The poker run went well Saturday night. I'd like to thank all of the people who rode for Aidan, those that donated and who also purchased wristbands. I think the preliminary total was about $1200 and we also sold about $150 worth of wristbands. We went out there for the dinner and for everyone to meet Aidan. Thanks again everyone, we greatly appreciate all of the support and generosity.

Thank you all for your continued prayers. Next week is the SPECT scan (June 30) and the following day is the appointment with the ENT to find out about the passy-muir valve.

Some other good news- Russell was offered a job. It's only a 2 month contract and it starts on June 30th. While he was on his way to fill out the paperwork this afternoon, another place called him and they want to do an interview tomorrow for a different position that would be a 6 month contract to permanent. I think he's going to go ahead and do the interview. A 2 month contract is okay, but if he has the possiblity of getting a longer term position, I'd rather he go for that one.

From the beginning things have just worked out. Russell lost his job right before the accident, and things have just fallen into place from there. God has a plan, we're just following the best we can. I have hope that Aidan is going to get better, that in a few years we'll be able to look at him and just be amazed at the progress he's made. I'm hoping that somewhere in all these plans that God has, he has a plan for us to have our own place. I'm ready for us to be in our own space again. We need room to spread out and my mom needs her house back. We'll just keep praying. :)

snuffy

06-26-2008, 11:17 AM

Wednesday, June 25, 2008

We started the "hard" hyperbaric treatments yesterday. By "hard", they are in a hard chamber instead of the soft, bag chamber we've done the previous 41 treatments in. The biggest difference is the fact that 100% oxygen is used at even more pressure. If you'd like to read more about the center we are going to, you can visit http://hboinfo.com/ncarolina.htm. There is a lot of info there and they do a better job of explaining it than I can. We've decided that we're going to do Aidan's treatments at the center instead of trying to purchase a soft, "mild" hyperbaric chamber. The benefit to him is much greater.

This week Aidan will do 5 treatments and then we'll have to schedule the rest. The plan is to do 40 treatments and then take 3-4 weeks off. Hopefully in that time his stander will arrive and we'll be able to get him upright and bearing weight in his legs again.
Aidan seems to have done okay with the treatments yesterday and today, although he had a rough night last night. I'm not sure what the problem was. Today while he was in the chamber with Russell he rolled from his back to his side. Russell wasn't sure if Aidan did it on his own or if he did something to "help" roll him. I've noticed that he seems more alert when he's awake, but by about 8:30 he is ready to go to bed. He was so sleepy this evening.

I forgot to mention that on Monday night I put Aidan on his tummy on a wedge and he did great. He usually cries when you first move him to his tummy but then settles down and will fall asleep once he's comfortable. This time he didn't fuss at all and he even tried to turn his head on his own. I ended up helping him a little, but he got halfway there without any help.

I've bought a hammock swing on ebay and will be getting a stand to use with it so that we can swing Aidan. I have the foam needed to make him a raised therapy mat/table, and just need a frame built.

This is the type of table I'm wanting to have made. I know some people have asked me what I'm talking about when I mention a therapy table.

Thank you everyone for your continued prayers, and we'd like to thank everyone who has donated or bought a wristband to help us with expenses related to caring for Aidan. We don't know a lot of you, but we consider you all friends and we keep you all in our prayers as well. I pray that I continue to have good news and progress to update you all with as we go through all of this. Aidan is going to surprise us all, I just know it.

Blessings to you all,
Erin

snuffy

07-02-2008, 06:03 PM

update

Sorry for not writing sooner, I've just been exhausted lately. Aidan had an appointment last Thursday with the surgeons who did his trach and g-tube. It was just a follow-up visit, but we ended up going down to radiology to have a reflux test done. We found out pretty quickly that Aidan has reflux. He had been spitting up more and more and had been vomiting pretty regularly after his feedings. The surgeon had us decrease his feedings to 90ml every 2 hours until I could come in today to meet with him and the nutritionist to discuss other options.

Let's just say it isn't exactly convenient to feed him every 2 hours, not when he has to have therapies and meds worked into that schedule as well.

We had a pretty good weekend. I don't remember a whole lot of it to be honest. Like I said, I'm exhausted. I took Aidan to his hyperbaric session on Saturday. It was my first time in the hard chamber with him. It was okay. Aidan was pretty calm throughout most of the time. Toward the end he started to get upset, mainly because he was hungry and wet. He was looking around a lot more and at one point he looked at me and I just felt like he knew who I was because he could actually "see" me. Then he started moving his mouth like he was trying to make a sound, maybe not a word, but a sound. It wasn't like he usually does when he "chews." I didn't cover his trach because I didn't want to upset him, but I wish that I had to see if he was actually trying to make some sounds. I got Aidan loaded in the car just in time for a storm to just dump on us. It was an interesting hour drive home.

Yesterday (Monday) was Aidan SPECT scan and Russell's first day on the job. I had to take Russell to work and then get Aidan to the hospital and get him checked in. We were about 30 minutes late because of traffic. They got him settled in and got him under anesthesia and after about an hour the nuclear med tech came out to get me. I thought they might be done already, but she apparently neeeded me to "wake Aidan up." I got worried because she said they had brought him back out of the anesthesia and needed him to open his eyes before she could inject a contrast. So I spent 30 minutes trying to get him to open his eyes. Finally, he opened his eyes and I was able to go back out and let them finish. They ended up having to scan him again because they needed to get better images. So instead of him being back there for about an hour and a half he was back there for about 4 hours total. We finally got to leave around 1:40 yesterday afternoon.

Today was the ENT consult to get the PMV. That was a complete waste of time. The pulmonologist's office made the appointment for us. And being that they aren't familiar with doctors affiliated with NorthEast, they sent us to a regular ENT, not one that specializes in pediatrics. I asked them when they called to tell me about the appointment if they were sure this is where they wanted me to go. I thought they were going to make the appointment with Dr. D who is a pretty well known pediatric ENT who was actually supposed to do Aidan's tracheostomy, but couldn't coordinate his schedule with the other surgeon's. Anyway, the ENT we saw today wrote me a prescription for the PMV's but is referring us over to Dr. D to manange Aidan's trach and PMV schedule.

After that, I went to meet with the nutritionist and the surgeon. The surgeon wasn't able to talk with me then (he's supposed to call later). The nutritionist and I discussed 2 options to dealing with Aidan's feedings. 1: we feed him 4 times a day with a pump at night to make up the feedings or 2: we feed him 6 times a day and add something to his formula that gives it more calories with less volume, it's called Benecalorie. I'm trying it in the rest of his feedings today to see how he tolerates it, otherwise we're looking at the pump overnight.

So that's your update for the past week while I was being slack.

I'd like to mention a new fundraiser going on. It's a raffle for a birdfeeder and a birdhouse. These are one of a kind, pottery donated to us by Betty Owen. Betty is one of our nurses step-mother. She really is an artist and the bird house and feeder are really pretty. We're selling the tickets for $1 each or 6 for $5. There will be a drawing for each item so you will have two chances to win. If anyone is interested in buying tickets just email me and I'll get the information to you. I will post pictures in another posting so you can see them.

Thanks everyone for your prayers and support!

Erin

snuffy

07-02-2008, 06:04 PM

Tuesday, July 1, 2008
preliminary SPECT news

I got a call from the neurologist's office a little bit ago. I only talked with the nurse, but she said the doctor had reviewed the scan and said that everything looks "really good" and that there is good blood flow. I won't be able to see the images until next Monday, but I'm really anxious now. I'm going to try to get copies of all of his MRI, CT and SPECT images so that we can post them on here. When we're done with the 120 hyperbaric treatments we'll see about getting another SPECT done so we can see the changes.

I'm extremely hopeful. I'm so ready to get Aidan back. I've really, really been missing seeing him do all the things he used to do. More than anything though, I'd love to see him smile and laugh like he used to, or hear him say "mama". In time I know he will do all of that, I just have to be patient.

Just wanted to share that news with you all!

snuffy

07-04-2008, 06:27 PM

Wednesday, July 2, 2008
Raffle info

I wanted to take this chance to show everyone the pictures of the "Forever birdhouse and feeder" that have graciously been donated by Brian and Betty Owen from Owen Clay Works in Sanford, NC.

These are one-of-a-kind pieces of pottery and they are very beautiful. The birdhouse has 8 separate "living areas". Both are easy to clean and maintain. Please check out Betty's webpage to find out more about her art. http://www.owenclayworks.com/

The drawing for these will be August 9th at the golf tournament. The tickets are $1 each or $5 for 6 tickets. There will be two separate drawings, so you have 2 chances to win. Each of these pieces sell for $225 each.

If you are interested in purchasing tickets please email me (erinwright78@gmail.com) and let me know. You can mail payment to the address listed on the left side of the screen.

Thanks everyone!

snuffy

07-04-2008, 06:28 PM

Thursday, July 3, 2008
Frustrations

I am so fed up with deal with our stupid government agencies. Jumping through one hoop after another just to get services for Aidan when he genuinely needs them. I guess dealing with the stress related to his condition isn't enough... let's throw the added stress of dealing with the government and all of their bureaucratic BS on top of it. It's enough to make a normal person crazy.... and I don't think I rank up there with "normal" lately.

Oh, well... just had to get that off of my chest. Sorry for ranting, but I'm sure some of you understand where I'm coming from.

snuffy

07-06-2008, 10:03 PM

Friday, July 4, 2008
Happy 4th of July!

I hope that everyone had a safe and happy 4th of July. We didn't do anything today. Russell was off of work so he, Evan and I ran some errands while the nurse was here with Aidan. Then we just hung out at home until time to leave for Aidan's hyperbaric appointment at 7:30. I took Evan down to my aunt's house to visit. She and my grandpa were cementing posts for a privacy fence. It was just nice to get out of the house for a little while.

Aidan did okay with his treatment, but he sweats so badly as they are bringing them back up to normal pressure that his clothes were soaked. He is exhausted after the treatments usually. In the soft chamber we were able to bring in a little battery operated fan, but because of the fire hazard we can't take anything in the hard chambers. They have a couple of valves that can be opened to allow some cooler air to circulate though.

I'll post more after Monday when we talk to the neurologist about the MRI and the SPECT scan. I'm hoping to have the images then as well.

Have a great weekend!
Erin

WyomingOSUAlum

07-06-2008, 10:50 PM

We're still pulling for you, big guy.

snuffy

07-09-2008, 08:17 AM

Tuesday, July 8, 2008

So, we met with the neurologist yesterday. Apparently I misunderstood him regarding the last 2 hour EEG that was done. Aidan only had one seizure episode during that 2 hour period and it was toward the end of the test. They were able to video tape it and compare the video with the actual EEG. The results were somewhat inconclusive because Aidan was having multi-focal seizures, meaning they were happening in two separate parts of the brain. One looks like an epileptic seizure and the other is most likely from storming activity (which are actually seizures happening deeper in the brain). Sometimes he's having them separately, but at times they both occur at the same time. We're supposed to have a 24 hour EEG scheduled soon. We're just waiting on a call for it to be scheduled.

As for the MRI, the doctor reviewed the images with me. It's one thing to hear the results and another entirely different thing to actually SEE the images. If you don't know what the brain should look like when it isn't damaged, it's quite confusing. Considering that I know enough about medicine to be dangerous to myself and my own imagination, the images distress me. I'm not going to lie. Aidan's brain is very damaged. Being without oxygen for nearly an hour did a lot of damage. I want answers, I've wanted answers from the beginning and they just can't give them to me. I asked how much of Aidan's brain is still functional or viable, they just can't say. I want to know if the damage is reversible, if Aidan will ever be able to do "normal" stuff again, or if he's going to be in a vegetative state for the rest of his life. They just can't tell me anything really. It's frustrating and heartbreaking.

I'm angry... I'm angry at myself most of all. If I hadn't cared so damn much about having a stupid birthday party for him, he wouldn't have been outside in the first place. If I had listened to my first instinct to take him inside with me while we finished unloading the van, he would have been safe, but I didn't. I didn't want to upset him when he just wanted to play outside. I'm angry that none of the doctors can give me definite answers to my questions regarding Aidan's prognosis and the more they can't tell me the more I'm afraid he'll never recover. Aidan didn't deserve this. He deserves to run and play and laugh and grow up and do all the things that little boys do. He doesn't deserve to be immobile and trapped in a body with a brain that isn't functioning normally. People ask me all the time if he recognizes things, if he feels pain, etc. and I feel stupid for telling the "I don't know." But I don't know. I don't know what Aidan recognizes, I don't know if he feels pain or joy because he can't tell me or convey that to me. I can only assume that because he's crying and making pained faces that he's hurting. He doesn't smile (consistently) or laugh to show joy, so I don't know.

I want nothing more than for Aidan to walk, and talk, laugh and smile and run around and play with his brother and the dogs. I want him to drive me crazy because I have to tell him again and again not to climb on things or to leave the TV alone or to stay out of something he's not supposed to be in. I'd rather deal with his night terrors and waking up in the middle of the night than to do this... I'd do it in a heartbeat.

Logically, I know that because his brain is still growing and because he is so small his chances of improving are better than if he was older. I know that we're trying to do everything possible to get him the treatments and things he needs to stimulate his senses and his brain so that he can recover. Emotionally, I'm a basketcase though. My fuse is beyond short and I'm tired and I'm miserable. I make everyone around me miserable, too, and I'm sorry for it. I would have rather drowned in that pond than Aidan. At least then I'd know that I'd lived part of my life and I'd brought two of the most beautiful little boys into the world and that they would be taken care of by Russell and family that loves them.

So, for now that's all the news that I have. As far as the spect scan goes, the information that I shared the other day is all I got. There are no blockages in the blood flow in his brain. I will have to wait until tomorrow to see about getting the images. He has an appointment with the pediatric ENT to discuss the passy-muir and to get instruction on it and a schedule for him to wear it. I will post more tomorrow night or Thursday.

Sorry for being so depressing, I'm just not doing very good at dealing with this right now. I guess I've hit the anger stage of grieving.

Thank you to everyone for your continued prayers and concern for Aidan and his recovery. When I'm having a good day and able to deal with everything, I know he's going to get better and that it's just going to take time. For right now, I'm down, and I just have to deal with it and try to get better.

Erin

AnniePokely

07-09-2008, 09:22 AM

My love and prayers are are with you guys. I haven't been able to post much, but you're still on my mind and in my prayers.

Keep your chin up.

PS: I really thought about you when my mom was in ICU. She was on the 5th floor @ Baptist, and one of the signs pointed to hyperbaric. I guess they do that there in the Pediatric unit- on the other end of the floor.

Im4OSU

07-09-2008, 09:32 AM

I will continue to pray for Aidan, and for all of his family. Trust in God and know that he is watching out for Aidan, and you!

barryrules

07-09-2008, 12:45 PM

You guys are in my prayers every day. Aidan and Evan are both blessed to have such a wonderful mother and father.

OSUFan

07-10-2008, 09:33 AM

I'm glad you have this forum to give us updates on Aidan but also to vent. It's always better to get it out than keep it bottled up inside. I continue to pray for the healing of Aidan and comfort for all the rest of you as you go through all this.

snuffy

07-11-2008, 03:45 PM

The first photo is one I took last week sometime. The others were taken today. One was during Aidan's OT session. It was the first time we had him positioned that way, he tolerated it pretty well. I love the last picture because if you had told me that Aidan would be flexible enough to be positioned like that when he was still in the hospital, I'd have laughed my butt off.

We met with the pediatric ENT yesterday after an interesting hour and a half wait (I was on time) but there was some confusion and the doctor had to go to surgery. We have another appointment in 3 weeks and in the meantime we are to work on capping off Aidan's trach. We have a little cap that we put over the end of his trach and he has to completely breathe on his own. I started with him yesterday for 30 minutes and he did great. His O2 sats were between 97 and 99% and we capped him off a couple more times for up to 45 minutes and again he did really well. We even capped him when he was asleep and his sats didn't drop at all.

Our goal is to get him to where he is capped more often that he isn't and once he is able to tolerate it for 24 hours consecutive, he should be able to have the trach removed. He'll have to be observed overnight in ICU with the trach capped to make sure he is doing okay before they'll make the decision, but we're still hoping for the end of the summer or early fall to have the trach removed... maybe sooner if Aidan continues to do well.

As far as this goes, this is exactly what I've been hoping for. I just wish I could get more concrete answers when it comes to his neurological status, but that just isn't the nature of the brain.

We're looking into vision therapy for Aidan and I haven't gotten a call about the 24 hour EEG yet, so when I know more, I'll let everyone know.

Thank you for all of the prayers and support and for understanding my anger and grief. I feel like I'm on a crazy emotional rollercoaster and I just want it to be over.

Thanks again!

barryrules

07-12-2008, 07:20 PM

Such great news about the trach!! I'll continue to pray that he does well with it capped off so he can have it removed!

snuffy

07-14-2008, 08:40 PM

Monday, July 14, 2008
date set for 24hr EEG

The doctor's office called on Friday to let me know that Aidan's EEG will be August 5th. We'll have to check in early that morning and stay on the peds floor overnight. I hope that this will give us some insight about which behavior goes with which type of seizure he's having. I just wish this nightmare would end already.

We didn't have a nurse Saturday night because of some mass confusion with the staffing. We had someone on OUR schedule, but the office said it was open and when someone wanted to take the shift, they were told it was already filled. It's just extremely frustrating. It isn't that I can't take care of Aidan- I know how to take care of him as far as his medical needs go. I just get very overwhelmed taking care of him when I'm completely alone with him. It is emotionally draining. I'll be honest, last week when it was just me and him (Evan was at my aunt's), I just laid down beside him and cried. I can't help but remember how he used to be and how he used to make me laugh by doing all kinds of silly stuff. I miss how our days used to be and I'm sad. I'm so unbelievably sad. Anyway, I know this blog is supposed to be about Aidan and not my daily whining and moping... I just have a hard time putting that aside.

Aidan is doing well. He seems more alert to me. He's been watching TV (at least it looks like he's watching). He's been tolerating being capped, and we're working on increasing the amount of time that he is capped, but I think once we downsize his trach tube it will help and make it even easier on him. He's been a little fussier than usual, and I don't really know why. We should be getting the passy-muir valves today or tomorrow as well as his formula supplement so we can decrease the volume and go back to our normal feeding schedule. Feeding him every 2 hours is a pain. Other than that, we don't have any hyperbaric treatments scheduled until Friday, the center didn't have any openings, so unless they have a cancellation we're taking a few days off. It'll be nice not to have to go somewhere every day.

I'd like to thank everyone who's donated money for Aidan's treatments. I know that I have mentioned this, but for now, we've decided to hold off on purchasing a soft hyperbaric chamber. We decided that we want Aidan to do the hard treatments and then at a later point, we may look into buying a chamber. Right now, since we live with my mom, we don't have anywhere to put something that big. Aidan's equipment is already taking up a lot of space and he has to have a room to himself. We are hoping to find a house to rent in the near future, but we can't really make that decision until Russell has a permanent job. We have been looking into other types of treatments and therapies, and I'm considering buying a biofeedback unit. They are usually used to treat pain, which I'm sure Aidan does have, but it's also been helpful with the healing process. I'm not sure how to explain it, I've done most of my reading about it on Abby's website (prayforabby.com) and Dr. Tennent's website.

Once school starts back, the Governor Morehead Preschool program will come in to start vision therapy with Aidan. I've had a referral from our neurologist for another place that does vision therapy, as well. We're still doing PT, OT and Speech Therapy. I got Aidan a hammock swing so we can use that in part of his therapy and the PT table has been made for us. Things are moving in the right direction for Aidan.

Thank you for all of your prayers and support. Despite how bad I've been feeling lately, it helps to know that you all are out there. I just have to keep praying and have hope that my son is going to get better.

~Erin

Im4OSU

07-15-2008, 06:02 PM

Erin and Russell, as well as praying for Aidan I am also praying for you both. Praying that God gives you the strength and wisdom to help Aidan. I can not imagine how you both feel, but always know that someone is always here to give you a shoulder to cry on, and hands to pull you up when you feel like you are falling. I hope Aidan gets well very soon, and that Russell gets a permanent job.

JonforOSU

07-17-2008, 10:48 AM

Hang in there Erin, Russell, and Aidan. We're all praying for you!!

snuffy

07-17-2008, 11:05 PM

Thursday, July 17, 2008
okay, maybe I shouldn't have watched that....

Many of you all who know me, know that I love medical shows. For as long as I can remember when I was a kid, I wanted to be a nurse. After starting nursing school I decided that it wasn't for me, at the time. Anyway, I've always watched surgery shows and medical shows, and I can handle seeing a lot of stuff. Well, tonight I started watching Hopkins on ABC... big mistake! For those that didn't watch it, there was a 2 1/2 year old little boy who had an enlarged heart. At one point they put him to sleep and there were complications that resulted in them having to start CPR... I lost it. I could not watch any more of the show until the end when they showed the little boy getting a heart transplant. Just seeing them doing CPR and then later watching the mother's reaction to the doctor's telling her that her son might die, just made me crumble inside. That is a feeling of complete helplessness and heartache I don't ever want to experience again.

On a good note- Aidan is doing awesome as far as capping his trach goes. Last night the nurse capped him for 2 hours straight and then this afternoon he went for 2 hours and 40 minutes. His O2 sats were 97-99 and occasionally went up to 100%. He had OT this afternoon and the therapist and nurse noted that he is breathing through his nose almost exclusively when he is capped, which is great! His breathing isn't as shallow or fast so that is really good too.

The therapist was working with Aidan to try to turn his head to follow a toy or my voice. It seems like he is trying and he is definitely following the sound with his eyes. He was exhausted by the end of the session and was asleep before the therapist left.

The church that I grew up in has gotten together and organized a yard sale for this Saturday to help raise money for Aidan so that we can purchase even more therapy equipment/devices for him. I can't even begin to express my gratitude for the outpouring of support and prayer for Aidan and our family. We are so blessed to have so many people all over the world who have been touched by our little man and who have in turn touched our lives in so many ways. So, however simple the phrase, THANK YOU!

edited to add: Aidan has been squeezing our fingers when we ask him to. At first I thought he might just be doing it during a seizure, but he's consistently done it with my mom, my mamaw and me. It's a little slow sometimes and a little weak, but you can definitely feel him squeeze and relax and then squeeze again. I've also noticed more seizure activity when he would normally respond to someone or something. For instance, the other evening, Mom was talking to Mamaw on the phone and she had the speaker on so Mamaw could talk to Aidan and when he would have normally responded, he had a little seizure, he actually had two. To me it seems like the increased brain activity is triggering the seizure response. I'm not sure if it's a good thing or bad thing. I think it's good that he's having the increased activity and wants to respond or interact, we just have to get the seizures under control.

snuffy

07-24-2008, 03:18 PM

Wednesday, July 23, 2008
an interesting evening...

Yesterday was Aidan's speech therapy day. He did really well and was swallowing a lot. He was having a lot of secretions so we hadn't capped him or put his PMV on, but I put it on him after his therapy was over. He was actually vocalizing some. Just sounds like "oh" and the like. I talked to him and then he would "answer" back. We did that for a few minutes. He amazes me every single day. I definitely think he is aware of much more than we think he is. I can't even imagine how hard it is for him.

So, anyway, after his nurse left yesterday, Aidan started to fall asleep so I put him in his bed. He slept for a long time, and when he woke up around 5 or so he started storming. It was like someone turned on a switch because he went from being asleep to being upset in no time. His lungs sounded horrible, so my mom and I gave him a breathing treatment and did some chest PT to loosen up anything in his lungs so he could cough it out. I finally ended up calling our doctor and asked her to come out to the house to check him out.

By the time she got here around 7pm, his meds had started to work and he was calm and trying to go back to sleep. His lungs sounded much better then, but she looked in his ears, and his right eardrum was red and bulging. The left looked fine. So he has an ear infection. She called in some augmentin for him so that should help clear it up and anything he might have in his lungs.

We had to cancel his hyperbaric treatments until next Wednesday because of the ear infection. It is just so hard sometimes when he can't tell us what is wrong. Aidan has only had 2 other ear infections and with each of them he was miserable. It's not like he can pull on his ears to let me know that they are bothering him, like Evan does.

I went to the doctor myself yesterday morning (same as Aidan's). I found out that I have a hernia (fun, fun). She also prescribed me an anti-depressant. I was really against taking anything at first. I wanted to get through this without meds, but sometimes you just have to bite the bullet and take medicine. I have to take care of myself if I'm going to take care of my boys. I have an appointment next week with a surgeon to find out about getting the hernia repaired. It may require a plastic surgeon consult as well because I have a lot of loose skin from losing so much weight, and the hernia is in my lower abdomen, just above my c-section scars.

So that is what has been going on at our house. It's a never ending 3-ring circus. I just pray that this ear infection doesn't affect his appointment next week with the ENT. Thanks for the support and prayers everyone! I'll update more later.

~Erin

snuffy

07-27-2008, 11:05 PM

Friday, July 25, 2008
I dream of Aidan....

For the first time in over 5 months I had a dream that I remembered and it was about Aidan. This was Wednesday night. I dreamed that I had left to go somewhere and he was like he is now, but when I came back he was his normal self- running around and playing with the roller coaster table that Evan got for his birthday. I didn't want to wake up. It was so nice to hear him laughing and see him smiling in my dream.

Today, Aidan's physical therapist brought us a stander to use until ours is delivered (at this rate,he may be 10 before it ever arrives). He did really well in it and stood at about a 50 degree angle for 30 minutes. He didn't fuss at all when we put him in it. I was so excited to get him standing and bearing weight through his legs again.

That's all that going on right now, I'll post more later this weekend. :)

~Erin

JonforOSU

07-28-2008, 03:49 PM

snuffy

07-29-2008, 09:02 AM

Monday, July 28, 2008
a pretty good weekend

This weekend was pretty good. Aidan is doing well. I think he's getting over the ear infection. The physical therapist brought a loaner stander for us to use on Friday. I was so excited about getting him in it. We put him in it for 30 minutes and he did really, really well. He actually started falling asleep. I got him standing in it up to about 45 minutes on Sunday.

Saturday, Russell and I went to a concert. We went to the the Avett Brothers. I went to school with them. They play a very interesting mix of bluegrass and rock music. The show was 2 hours away, in Cary. My aunt Bev came up to watch the boys. Aidan's nurse was here part of the time so that helped out some, I hope. She said they both did well. I really enjoyed the concert. It was nice to get away and Russell and I managed not to talk about the kids except for a couple of times (I think).

Sunday was a pretty good day for Aidan. He had a bit of a rough night, so he slept most of the morning, but he was in a good mood most of the afternoon. We put the PMV on him and he wore it about 6 hours or so. He does so well with both the PMV and the cap. All afternoon he was "talking". He kept making different sounds like he was trying to form a word because it wasn't just a single sound like "oh". I love hearing his voice. I can't stand to hear him crying though. It just breaks my heart.

That's about all we did. I have my appointment with the surgeon tomorrow about my hernia, and Aidan goes back to the ENT on Wednesday. Hopefully we'll talk about downsizing his trach then. We'll have to see. I'm hoping that the ear infection and the congestion he's had hasn't put us behind on that progress, since I haven't felt comfortable capping him much during the last week.

Thank you all for the continued support and prayers. Please pray that we have more people register for the golf tournament this week. The deadline is the 1st for registration. We had a group offer to help us with some prizes so there are some really great prizes if people register for the mulligan package. Russell has put all the information on the Golfing for Aidan website.

Thanks!
~Erin

snuffy

07-29-2008, 09:03 AM

Tuesday, July 29, 2008
Golf Tournament Registration Update

Erin posted that the deadline for registering for the tournament was August 1st, but that was before I talked with the golf course yesterday. The tournament coordinator there is not going to be in town this weekend, so he was was gracious enough to give me the weekend to pull in more players. The deadline is now August 4th.

If you live in the area and want to play in this tournament, please go to http://www.golfingforaidan.com/register to register for the tournament. You can either register through the storefront or by simply emailing the information. We have some new things that have just been added to the tournament that should make it very exciting and fun for everyone.

Thanks!
Russell

snuffy

07-31-2008, 12:09 PM

Wednesday, July 30, 2008
So long, trach!

Aidan's visit with the ENT went well today. We've scheduled another bronchoscopy to be followed by decannulating (removing the trach), if all goes well. That will be in 3 weeks on August 20th. I'm excited about this, but then again, I'm scared. We'll most likely lose our private duty nursing as a result of the trach being removed, despite the fact that nothing else about Aidan's condition has changed. He's still on a ton of medication and he still has seizures, and he's still got a G-tube. It doesn't make any sense to me at all.

Aidan started back with the hyperbaric treatments this evening after taking a week off because of the ear infection. The ENT looked at his ear today and said it looked great. We've got to work in some of the appointments we've missed and hopefully get him up to where he can tolerate more pressure.

My appointment on Tuesday went okay. I met with the surgeon and they scheduled me for an abdominal/pelvic CT scan for tomorrow morning. After that I'll go back for a follow-up with him and then probably see a plastic surgeon to see about getting the extra skin removed when they repair the hernia. I'll know more once they get the CT results back.

It's been pretty busy the past few days. I'm hoping we get some more people registered for the golf tournament since we have until the 4th to get the registration forms in. We really appreciate everyone's support and all of the fundraising that people have done. We recieved $1200 from the Sons of Confederates for the Poker Run that they had last month. We had some pictures made with the guys last night, so I'll post them once they are emailed to me.

Thank you all for your continued prayers. Without them, I'm not sure where we'd be. I'll leave with another bit of info- Aidan looked at me this afternoon and grinned. I was so surprised that I had to make sure it wasn't a seizure first, but it wasn't. My little boy is coming out of this... I don't know how long it's going to take, but I'm going to fight for him as long as I have to.

Erin

osutuba

07-31-2008, 09:44 PM

Thanks for the updates Erin. I check everday to see if you have a new one. I'm a parent myself, of two girls, 2 and 7. I can't imagine what your going through. Your basically living my worst nightmare. I pray for Aidian and your family everday. I hope he fully recovers to the point he can have a normal life. Prayers are sent everyday for the little guy. Hang in there.
Jon,

We wouldn't wish this life we are being forced to live on even our worst enemies. It is definitely a daily nightmare that we wish one day we would simply wake up from and we would be right back to that day before all Hell broke loose.

Russell

Im4OSU

08-01-2008, 06:27 AM

I am so excited that Aidan grinned at you, that is such hopeful news. Keep up the fight and we will continue to pray for you. God Bless you all!

barryrules

08-01-2008, 07:25 AM

I'll leave with another bit of info- Aidan looked at me this afternoon and grinned.
Erin

Reading this brought tears of joy to my eyes!!!

snuffy

08-04-2008, 06:11 PM

Monday, August 4, 2008

Okay, I figured it was time to update before the followers get restless. So, there isn't much to tell. Aidan did okay this weekend. His trach and g-tube have developed some type of infection or rash, so I had to call the doctor this morning to get him some new medicine to treat it. Hopefully this will take care of it. He's been much more upset today and last night.

We finally took Aidan to my step-dad's yesterday. Russ and I have been there several times, and I have taken Evan, but yesterday was the first day that we have taken Aidan since the accident. It wasn't as hard as I thought it might be. I figured we'd have to face it at some point. We had dinner there and took Aidan's little seat and strapped it to the porch swing so he could swing. He seemed to like that.

Tomorrow is his 24 hour EEG. We go in to the hospital at 7:15 in the morning. Oh, I forgot to change the date on Aidan's bronch and trach removal. It's been moved to the 28th instead of the 20th. Hopefully that will give us some time to get these infections or rashes cleared up. I'm sure he'll feel so much better once he has that thing out. I know for me personally, it would drive me nuts to have something like that in my neck and I couldn't do anything about it.

Anyway, not much else going on. I'll post more later! :)

JonforOSU

08-06-2008, 06:59 PM

So glad you got a little grin!!! Hang in there and Aidan will be just fine. More prayers sent!!

bleedorange

08-06-2008, 09:22 PM

Here's link to a story about a very similar case. This little guy is one of my wife's patients. He has made some significant strides over the past few years.

http://www.newsok.tv/?titleID=1713744300

AnniePokely

08-06-2008, 09:24 PM

I'm still praying for you guys daily. I just wanted you to know that.

snuffy

08-07-2008, 06:04 PM

Wednesday, August 6, 2008
EEG update

I don't have much to tell, but Aidan did well at the hospital. The neurologist was pleased with what she was able to review this morning on the computer. Aidan has a lot more brain activity than he previously had, although it is still a little slower than normal. He is having some seizure activity, but she didn't really talk about that much. She and the other neurologist will review the whole EEG and analyze it. They also drew a little blood to test his Keppra (seizure med) levels to decide if his dosage needs to be changed.

We have a follow-up appointment with the neurologist on the 26th of this month. The bronchoscopy and decanulization (if everything goes well) are still scheduled for the 28th. I'm so ready for Aidan to not have a trach. It will be nice to see him look normal without the constant reminder that something is wrong when you look at him.

A couple of Aidan's nurses from the PICU came over to visit him earlier today and then they also ended up doing the blood draw before we left too. He's not an easy stick. It took 2 tries to get a tiny vial for the Keppra test.

Well, that's all I know for now. We're still working on getting the yeast infections around his g-tube and trach cleared up. He got those from being on the antibiotic for his ear infection.

Aidan's stander and bath seat are being delivered tomorrow morning (FINALLY!) and we will resume hyperbaric treatments tomorrow evening. The golf tournament is on Saturday. I just wish it was all over at this point.

I didn't sleep well at the hospital, so I'm exhausted. I'll update more later. Thanks for the continued prayers and support!

~Erin

snuffy

08-11-2008, 12:53 PM

Saturday, August 9, 2008
golf tournament and raffle results

Thank you to everyone who came out and participated in and helped with the golf tournament. We didn't have the turn out we had been hoping for, but I think everyone had a good time. We will very likely do this again next year; Russell spoke with one of the people from SEU Promotions about how they could help and it sounds like they can do a lot for us. I think he is planning to meet with them in a few weeks to discuss things further.

I'd also like to thank everyone who purchased raffle tickets for the bird feeder and bird house. And a huge thanks goes out to Brian and Betty Owen who donated the feeder and house.

Congratulations to Ray Russ who won the bird feeder and D. Tyler who won the bird house. We did the drawing earlier tonight, and just so it would be fair, we have taken a short video of the drawing which we'll post to the blog soon.

Here are just a few of the pictures that were taken today. We will have more available online in a day or two.

Doesn't our little man look so BIG!? He's grown so much in the past few months. I've had to buy him all new clothes because he's outgrown everything I bought him back in the spring. He jumped from 24 months to 3T overnight it seems. Thanks for the continued prayers and support.

osutuba

08-17-2008, 01:22 PM

I'm still praying for you guys daily. I just wanted you to know that.
It amazes me that you are going through what you are going through on your end and yet you still find time to pray for us. We are doing the same for you here. I saw that there was a "miracle tent service" going on through the entire month here where we live. I am seriously considering going there and taking Aidan with me. If we do that, I'll ask for a miracle by proxy for your mom.

snuffy

08-18-2008, 07:30 AM

Sunday, August 17, 2008
No, I haven't dropped off the face of the planet....

Sorry for not posting this week, everyone. Aidan is doing pretty good. The infection he had around his g-tube and trach is clearing up now that we've gotten him on a different medicine for it. It looks 1000 times better than it did at the beginning of the week.

Aidan is still doing hyperbaric treatments and will continue through the rest of the year with them with a few 2-3 week breaks between each 40 session block. So far he's done almost 30 treatments and they've increased the pressure from 1.5-1.75 atmospheres and will go up again next week sometime to 2.0 atmospheres. The increased pressure is supposed to be more beneficial and help stimulate Aidan's body to produce more stem cells. I actually noticed a difference after the first treatment at the increased pressure.

He has been moving his arms and legs more. It's a very small movement, but he's doing it voluntarily. He's been smiling, well, grinning- more and more and he actually responded to his Nana tickling him the other night. He kind of drew in his tummy and moved his foot when she tickled him. So far we've not gotten a reaction out of him when we would do that. Sometimes he'll move his foot when you tickle it, but not anywhere else. Aidan used to be really ticklish too.

There are little tiny improvements. Other people that don't see him every day see more changes in him than I do. I am just constantly reminded how blessed we are to have him here in our lives. He is a miracle. I keep hearing about more and more children drowning and my heart just aches for those families, and it aches for what we've endured and for what we lost, even though Aidan is still here, we lost a big part of him. As close as we came to going through it ourselves, I still can't fathom the pain of having a child die.

Because Aidan has grown so much he's starting to dwarf his crib. Russell and I went yesterday to look for a "big boy" bed for him. I want to get a captain's bed (the ones with the drawers underneath) for him because they are typically higher than a regular bed. We found one and a pretty good mattress for him, so we'll probably be getting it in the next week or so.

As far as therapy equipment goes, we've gotten pretty much all of the big stuff. His stander and bath seat arrived. He has a hammock swing and his "tomato" chair. The only things he needs now are wedges and things like that so we can get him on his tummy more. I'm praying that we'll need a crawler or walker in the near (year or so) future.

We have less than 2 weeks left before the trach is to come out. I'm getting more and more nervous about it, but I am so excited to see Aidan without the trach.

Thank you everyone for the continued support and prayers. I apologize for not posting the video of the raffle drawing. The video did not turn out well. The audio and video were really off and I couldn't fix it. Again, we thank everyone who purchased tickets.

I'll leave you all with a couple pictures of Aidan. He looked so cute in his little seersucker sun suit. :)

barryrules

08-22-2008, 10:16 AM

He has been moving his arms and legs more. It's a very small movement, but he's doing it voluntarily. He's been smiling, well, grinning- more and more and he actually responded to his Nana tickling him the other night. He kind of drew in his tummy and moved his foot when she tickled him.

This is GREAT news, they say that laughter is the best medicine!!

MajorMike

08-22-2008, 10:35 AM

Where are the pics?

bleedorange

08-22-2008, 10:38 AM

Where are the pics?

http://prayforaidan.blogspot.com/

snuffy

08-22-2008, 10:56 AM

Where are the pics?

Why I do not know, but any time I try to copy pics to post them it does not work. If anyone could tell me what I am doing wrong, I would be grateful.

bleedorange

08-22-2008, 12:13 PM

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SKi_Ld5J_BI/AAAAAAAAAH4/i-phg9bdbu4/s200/8-17-08+006.jpg

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SKi_LG6y2PI/AAAAAAAAAHw/kAVwhZo359Y/s200/8-17-08+001.jpg

MajorMike

08-22-2008, 12:33 PM

http://spurstalk.com/forums/showthread.php?t=103452

osutuba

08-25-2008, 10:21 PM

http://spurstalk.com/forums/showthread.php?t=103452
Thanks for sharing that, Mike! Please encourage them to post comments on the blog and indicate where they are posting from on the map. :)

snuffy

08-26-2008, 09:49 AM

Monday, August 25, 2008
Wow, I've been really lax about posting...

Sorry everyone! I didn't realize it had been a week since I posted. Time just flies by. Aidan is doing well. His bronchoscopy is scheduled for Thursday morning. Basically the doctor will pass a small camera down through Aidan's nose and down into his trachea and then past the trach tube. He is looking for any type of obstruction or scar tissue from the trach, anything that might make it difficult for Aidan to breathe without the trach. If everything is okay and he feels like Aidan is ready, the doctor will put in a smaller size trach and cap it off. He'll then stay in ICU overnight for observation and if he tolerates being capped during that time, they can remove the trach the next morning.

We are hoping and praying that we don't have any set-backs with this. Aidan has had some sinus issues over the last couple weeks that has made it difficult to cap the trach. He's tolerating the PMV well since it allows him to breathe in through the trach. His nose has been really stuffy and he's had a bit of sinus drainage. We've just been trying to get it cleared up.

The infection that he had around his g-tube and trach is gone. The trach area is still red, but that is from the constant irritation. Once the trach comes out, it will make things a lot better.

Aidan has been gaining quite a bit of weight. His little cheeks have puffed up and the new clothes that I just bought him a few weeks ago are already snug. I can't believe how big he's gotten. He's definitely gotten longer which is good, but we're going to have to adjust his calorie intake.

Aside from all that has been going on with little man, the rest of us are doing well. Russell is still working at Ingersoll Rand. It's just a contract job at this point, but we're hoping that something more permanent comes out of it. He seems to really like it there.

Evan is growing like a little weed too. He's been cutting his 1 year old molars and he's finally started walking although he's really wobbly because he still prefers to crawl everywhere. Evan has started giving Aidan kisses. It's so cute. He'll go up to Aidan when he's sitting in his chair on the floor and he'll pat him on the head or shoulder and then he'll lean over to give Aidan kisses. I haven't been able to catch him doing it when I have the camera nearby or I'd have a picture to show you all. It really just melts my heart.

As for me, I'm doing okay. According to the CT scan that I had, I don't have a hernia, even though my doctor felt one. I still have pain in my tummy, but it comes and goes, so we'll have to wait and see. I've been crocheting. I'm determined to finish several projects I have planned for Christmas gifts. I just finished an afghan last night and I just started another one tonight. I have 5 or 6 more to make before Christmas.

I hope that all of our readers are doing well. Thank you for your prayers and support. I will post Thursday after Aidan's bronch to update you all.

~Erin

AnniePokely

08-28-2008, 01:30 PM

It amazes me that you are going through what you are going through on your end and yet you still find time to pray for us. We are doing the same for you here. I saw that there was a "miracle tent service" going on through the entire month here where we live. I am seriously considering going there and taking Aidan with me. If we do that, I'll ask for a miracle by proxy for your mom.

I pray for Aiden several times a day, and I will continue to do so until the day you tell us he's completely healed.

I anxiously await that day.

snuffy

08-29-2008, 07:56 PM

Thursday, August 28, 2008
A prayer for Aidan

I'm asking that everyone who reads this and is a believer to pray that Aidan is successful with having his trach capped for 24 hours. He needs to be able to maintain his oxygen level above 90% and not being in respiratory distress and he needs to cough to clear his airway should he need to.

The bronch went well. The doctor said that it looked like Aidan also had a chest cold along with the sinus infection/head cold. Since he was treated with an antibiotic and just recently came off of that, he was a little concerned because it might make it harder for Aidan to "fly" as they call it.

A smaller trach was put in and at noon we capped him. At first he was doing really well, but then he got kind of junky sounding and we've been trying to get him to cough to clear his throat. I think he just needs the trach tube cleared out and not actually suctioned deep. Anything in the trach sounds amplified, and it gets annoying. You want to cough for him to clear it.

If this is not successful and he fails at this attempt to decannulize, we'll have to wait until the spring. Because of the cold/flu/RSV season, they don't usually try to decannulize trach patients. For Aidan's sake, I hope this is successful. The trach, however useful it can be in an emergency situation, is a constant irritation and reminder of Aidan's accident.

Everywhere we go, people stare at him because of the trach. Without that, you couldn't look at him and tell there is really anything wrong with him. He looks normal.

If it's not meant to be now, then it's not, but I'm praying that it's time. I'm praying that Aidan is well enough and strong enough to breathe on his own without the trach, and that he will start swallowing and maintaining his secretions much better.

If Aidan does well the rest of the time, then they will take the trach out and cover it the hole with a dressing and we'll be here another night or so for observation. In this case, staying in the hospital for a few extra nights is a good thing.

Thank you everyone!

~Erin

snuffy

08-30-2008, 03:58 PM

Surprise!

Sorry everyone ... we have been busy today with things so we completely forgot to post.

I got up this morning and, after a bit of insistence from Erin, I went to check on Aidan. We fully expected the trach to be removed around noon, so imagine my surprise when the trach was nowhere to be found! I found out that after Dr. D looked at the charts, he decided to pull the trach just before 8 this morning.

Aidan has now been breathing completely on his own for 36 hours. Provided there are no problems tonight, we will be home sometime tomorrow. They said we'd be discharged at 8AM, which means we'll finally be out of here sometime around 2PM. ;)

Thanks to everyone for their prayers and well-wishes. This was a huge hurdle for us to clear. Next step is to get him swallowing consistently, right after he gets his big boy bed.

-- Russell

snuffy

08-30-2008, 03:58 PM

Saturday, August 30, 2008
We're home!

We just walked in the door, but I wanted to make a quick post to let everyone know that Aidan is doing really well. I will post a few pictures later today or tomorrow. I took some before they took him back to the OR on Thursday morning (the last pictures with a trach) and I'm going to get some of him today without the trach.

I'm so glad to see my baby without a tube sticking out of his neck. When the stoma heals, I'm hoping that we can all go and have a family picture made. We never got to get Aidan's 2nd birthday pictures made.

Thank you again everyone for your constant prayers and endless support. I know that I couldn't have made it this far without them. I have hope that Aidan is going to recover from this. I know it's possible for children to recover from similar accidents... we met a little boy right after Aidan's accident who nearly drowned 2 or 3 years ago and you'd never know that he went home blind and unable to walk or talk. He was "normal" running around playing with his brothers and sisters.

I have hope that Aidan and Evan are going to be playing together one day, and this whole experience will just be a distant nightmare. We'll never understand why this happened, we can only learn from it and love Aidan no matter what his condition.

I'll post the pictures later and keep you all updated. Hope everyone has a great weekend!

~Erin

Im4OSU

08-31-2008, 08:26 PM

I am so excited for you all!! Congrats this is a big hurdle that Aiden jumped over with flying colors. I continue to pray every day for Aiden and your family. God bless!!!

snuffy

09-02-2008, 03:22 PM

Tuesday, September 2, 2008
update

I apologize for not posting the pictures, I'll get those up soon. For some reason Aidan began crying/storming Saturday after we got home. It lasted from about 2pm until just after midnight when I guess he finally got so exhausted he couldn't cry any longer. He woke up Sunday morning in much the same way. We tried everything to calm him, but nothing worked. He acted like he was hurting and we just couldn't figure out what was going on.

Aidan did calm down long enough to go to his hyperbaric appointment Sunday morning, and even slept through the session. On the way home, though, he started crying again. We finally decided to call his doctor and by the time we got a call back he was starting to settle down. He was quiet and slept for almost 5 hours Sunday afternoon. He woke up and it was like someone flipped a switch and he started storming/crying again. We called the doctor back and she came out to the house, this time to see Aidan in the midst of the storm so she could see what was going on.

There wasn't anything obviously wrong with him, so she sent us to the hospital to stay overnight so they could run some tests to rule out any infection or anything like that. Go figure that he would calm down when we got to the hospital and he went to sleep. Had the nurses and other staff not had to mess with him, he would have slept through the night. He only had one brief crying spell about 4am Monday morning and the rest of the time was quiet.

All of the tests came back normal, so we aren't sure what is causing the sudden onset of the crying. To me it looks like he's in pain. The doctor sent us home with something for pain to give him as needed. We have a follow-up appointment with the ENT this afternoon so they can take a look at the trach stoma and make sure it looks okay. We're not sure if maybe that is causing some pain or discomfort for him. It is always covered by a dressing so it should be okay.

Anyway, I don't know that this would be a set-back. Aidan's oxygen sats are really good. They're usually between 98-100%, so as far as not having the trach goes, he's doing great. Who knows what the other is. Maybe it's just a phase. I hope it goes away soon, because I can't bear to listen to him crying when I can't fix what is wrong. Heck, I don't even KNOW what is wrong.

Please pray that whatever is upsetting Aidan or causing his pain is resolved soon. He's been doing so well, I hate to see him like this. It just breaks your heart to hear him cry.

osuno1

09-04-2008, 08:19 AM

Great news about the trach!!! Small steps. We will continue to pray for Aidian and your family.

Verb

09-04-2008, 12:32 PM

Russell, there was a really interesting article in the OC Register yesterday about hyperbaric therapy, and it made me think of Aidan. The focus was mostly on the treatment of autism, but it reference how hyperbaric treatments seem to reduce swelling and promote healing within the brain.

If i can find a link to it, I'll post it.

snuffy

09-08-2008, 09:11 AM

unday, September 7, 2008

Hi everyone! I just thought I'd let you all know that Aidan is doing okay. He hasn't had a bad episode of storming since we left the hospital the other day. All of the tests came back normal, so we aren't really sure what caused the episodes. We have something to give him now when he acts like he is in pain and that helps if we aren't able to help him calm down otherwise.

Other than that, not much has been going on. We have 2 more hyperbaric sessions to do and then we are on a break until October 1st. It will be nice to be able to stay at home in the evenings instead of having to run around all the time.

We went to a family reunion this afternoon. It was so hot! I got a few pictures of Aidan but haven't got them uploaded yet. Here are the ones I took the morning he went in for his bronchoscopy. These are the last pictures I have of him with the trach in, and one with him and Evan together. :)

He is doing so well without the trach. His oxygen percentages stay in the high 90's or at 100 most of the time. I think he is doing a lot better and that he is improving little by little each day. We just have to keep praying and have hope that he's going to get better.

Thanks for the support and prayers. I'd like to also thank everyone who has donated money for Aidan's care and his treatments and equipment. I don't think that Russell or I could ever say it enough, and I know that I've been horribly slack at writing "thank you" cards, so I just wanted to tell everyone that we are so very grateful to everyone for their kindness and generosity.

Hope everyone has had a good weekend. For those who are in the path of the hurricanes and tropical storms, we're praying that everything is fine and that everyone stays safe.

rodbakeriii

09-08-2008, 08:18 PM

Okay, I've been quiet, but definitely thinking the good thoughts for you guys. :)

osutuba

09-08-2008, 08:49 PM

Okay, I've been quiet, but definitely thinking the good thoughts for you guys. :)
We know ... you've been busy removing yourself from the population of available males in the world. :D

BTW, congrats!

osutuba

09-08-2008, 08:52 PM

snuffy

09-14-2008, 04:59 PM

Saturday, September 13, 2008
big boy bed

I finally got the mattress for Aidan's bed. I'm getting ready to put it together and set up in his room. I can't believe that Aidan is big enough to sleep in a twin bed. I miss his little car bed that he slept in before the accident.

He's gotten so big. I also just bought him new fall/winter clothes because he doesn't have clothes to fit his chunky butt. I have to say that I LOVE Target for kids clothes, especially play clothes. They are cheap, but pretty well made. I also found some stuff on sale at Old Navy. I'm all about the sales and clearance items. When I have time I like to go to thrift stores and consignment shops to dig around. You can really find a lot of things when you have the time to browse around.

Anyway, we're all doing well. Aidan is doing a lot better. I think I figured out why he was getting so upset and crying so much. It looks like he's been cutting his molars. He has never tolerated cutting teeth well. With Evan, we hardly ever notice he's got some coming in until they're already through completely.

I'll post some pictures of Aidan's new bed once I get it put together. I've been keeping myself busy making afghans, so I haven't been on the computer much.

I hope that everyone is doing well. Thank you for your continued prayers and support. Have a great weekend and please pray for the people along the Gulf Coast that are being affected by Ike.

~Erin

snuffy

09-18-2008, 08:25 PM

Wednesday, September 17, 2008
The sweet sound of laughter

Yesterday after I got back from the dentist, Aidan and I were just hanging out watching TV. I was on the phone with my brother and heard what I thought was Aidan fussing. I looked over and he wasn't fussing.... he was smiling and LAUGHING! I burst into tears immediately. My baby laughed! I don't know what was so funny but he had laughed for the nurse while I was gone too.

Several weeks ago, Russell heard him laugh in the hyperbaric chamber, but we hadn't heard him do it since then. I ran around trying to find my camera so I could get a video of him laughing, and I called my mom so that she could hear it too.

So, I'd like to share the video of Aidan laughing with you all. One side of his face is still weak, so he has kind of a half smile. I can't even begin to tell you all how excited and happy I am. Hopefully in the next few weeks we'll see and hear even more from him.

I have to take him tomorrow to the speech therapy center for them to do an evaluation to see if he is a candidate for the vital stem therapy (which he should be). This will help strengthen the muscles for swallowing so that we can start introducing solids by mouth. It's going to take some time before the g-tube will come out... probably years, but we're okay with that. Aidan is healthy and is obviously gaining weight. That's all we can ask for. :)

Hope you all enjoy the video! *If the music player is interfering with hearing the video, just pause the player at the bottom of the page so you can watch the video.*
Link for the video:
http://prayforaidan.blogspot.com/2008/09/sweet-sound-of-laughter.html

OSUFan

09-18-2008, 08:34 PM

Laughter is excellent! So glad Aidan is improving. I will continue to keep Aidan and all of you in my prayers.

osutuba

09-18-2008, 08:34 PM

I will see if it is possible to get the video embedded here ...

Verb

09-19-2008, 01:37 AM

Wow! Seeing those smiles on his face just lifted my heart. That's amazing!

orangeblood

09-19-2008, 07:15 AM

Wow! What a wonderfull start to this day!

Im4OSU

09-19-2008, 01:05 PM

I am so excited to hear this. . . it just brightens my day!! God Bless!!

AnniePokely

09-20-2008, 09:20 AM

Wow. That just made my heart smile.

MajorMike

09-23-2008, 12:18 PM

And the world will be cleansed by the laughter of children.

OSUBarkeepr

09-24-2008, 09:34 PM

You guys cannot know how deeply Aidan's recovery has moved me and my wife. Our prayers continue, and we know God's hands are on you.

To countless more smiles and bursts of laughter!

osutuba

09-26-2008, 07:57 AM

Barkeepr, I really appreciate everything you and everyone else here on this board and OP.com have done for Aidan. I can never say that enough :`-)

snuffy

09-29-2008, 09:53 AM

Saturday, September 27, 2008
update

I figured I should post an update. Aidan had the evaluation for the vital stem therapy. We start going 3 days a week for that starting next week. Vital stem is basically like TENS therapy except that it is for swallowing. They put these little conductor pads on Aidan's neck and an electric current stimulates the muscles. It is supposed to strengthen the muscles. From research that I've done on it, it is really successful. I don't know how long we'll have to take Aidan for treatments. If he shows increased improvement with swallowing, then they can do another swallow study. Once Aidan successfully passes a swallow study, we will be able to reintroduce foods by mouth.

Not a whole lot has changed with Aidan since I last posted. The other day during his OT, the therapist had him on a yoga ball and was rolling him back and forth and he was focusing/tracking her, so that is new. He's had some increased seizure activity and has had several storms this week. It's very exhausting when he is like this.

We are also now dealing with the possibility that we are going to lose our nursing coverage because they don't think that Aidan's condition is "serious" enough to require a nurse. They only want to offer us a CNA, but CNA's aren't legally able to administer medication. If Aidan were to have a storm and I weren't here, the CNA couldn't give him anything, they couldn't even give him his regularly schedulded meds. I'm just irritated by the whole thing.

If we had left the trach in, that would have made him qualify for the "hospital" level of care, but because he can breathe without the trach, he's miraculosly cured... yeah, I wish! Sometimes, well, no, MOST of the time, I think that our government absolutely SUCKS! Those who manipulate the system and are here illegally are given anything and everything, but someone who truly needs assistance is left hanging.

I'll be the first to admit that Aidan doesn't always require a lot of nursing intervention WHEN he's having a GOOD day... but when he's having a BAD day and he's storming 4-8 hours at a time, he needs a lot of care. He has medication scheduled around the clock, and I can't always be here. I have a 15 month old who needs me too. Evan has to go to the doctor, I have to go to the doctor or the dentist and run errands. It isn't practical for me to drag a 15 month old and a 2 and a half year old who is immobile into Walmart to buy groceries... I don't have enough hands! Maybe if I clone myself, then I can get everything done. If anyone knows how I can do that, let me know.

To top all of that off, Russ and I went to look for apartments today. We can find several that are big enough and within our budget BUT they are income restricted. We would have to have 7, yes 7 people on the lease, with only Russ working to even qualify to live in one of these places. GIVE ME A BREAK! How in the world is anyone supposed to live and keep their heads above water in this place? It's absolutely disgusting.

Anyway, now that I have ranted. I think I need my therapy... I crochet to keep from going insane... that's what I've been doing lately instead of boring you all with my rambling. Hope you all enjoy your weekend. Some prayers that Russell's job goes permanent or the contract is extended would be greatly appreciated. We actually did find an apartment that is perfect for us and it is handicap accessible. We need to move quickly on it, but I'm cautious because of this whole situation. I know my mom is ready to have her house back to herself and I'm ready to get out. It will be better on all of us. But I don't want to go into something and get in over our heads. Thanks again for all of your support and prayers.

Erin

snuffy

09-29-2008, 09:56 AM

this is from the comment section from the Pray for Aidan page.
Link: http://prayforaidan.blogspot.com/

Sunday, September 28, 2008
Yet ANOTHER Change to the Comment Process

Last night, I made some changes to how people can leave comments because we had received complaints about not being able to see the verification image. I made it to where you didn't need that image, but we would moderate comments so we could review them before they are officially posted.
Fast forward 6 hours ... Erin gets her first comment for moderation. Erin rejected it immediately, but I think it needs to be posted for the world to see:

YOU are unbelievable. YOU don't watch your son, you just assumed some one else was watching him, YOU are totally responsible, YOU are his mother and it is YOUR job to be sure he is safe. YOU knew there was WATER at your father in laws. YOU were just excited about having a party so you could eat.
It is YOUR fault and you blame the government????
Paybacks a bitch.

This comment was left by an anonymous party ... the F***ING COWARD didn't even have the cajones to put his or her name to the comments!!!!!!!!!

We love receiving comments from our friends, family, and even complete strangers who have only recently heard our story. We also know some of you post anonymous comments that are positive and even put your names to them; however, the purpose of this blog is not to get bashed or placed on a guilt trip. We deal with this every day and have to live with our own questions and doubts. This is supposed to be a positive experience for us and our readers, even though we may, on occassion, vent our frustrations.

So, I am making yet another change to how you can leave comments. You are now required to have a login to leave a comment. We hate doing this, but see it this way: if you are going to leave comments like that, we want to know who you are. To rephrase a common saying: Better to post nothing and let us think you're an ass, than to post something and have your name attached to it so we can publicly label you in the blogosphere as one.

If you have trouble registering, there is help available on this site on how to create a username.

-- Russell

snuffy

09-29-2008, 10:07 AM

Russel and Erin, I am sorry about the asshole, but he will have to live with that between him and God until he ready to make it right. My love and prayers and daily thoughts are for you and Aidan. Erin you never bore us with your rambling, what you are doing for your family takes a special kind of strength and love that only a mother can have.
May God's peace and love continue to carry you.

Im4OSU

09-29-2008, 08:00 PM

Erin and Russell, remember that there are ignorant people who think that they always know best, they probably have no children and don't understand how quick and inventive they can be, and how easy it is for everyone to think that someone else is looking out for the kids expecially in a big group. We have had to make a system to make sure that we all know who has the kids. You have all of my love and support as well as prayers. We (who know the truth) know and understand what you are going through not thoughtless people who don't even have the guts to put there name to what they write. If you feel that way, don't hide behind a computer and not have the courage to put your name on it. God Bless you guys, continue to do what you know best.

JonforOSU

10-04-2008, 01:28 PM

Wow, the nerve of some people. Especially when they can hide behind a screen and keyboard.

Continued prayers for Aidan and your family. I pray everything works out with your living situation. Hang in there guys, seems like Aidan is doing better.

snuffy

10-08-2008, 03:59 PM

Tuesday, October 7, 2008
What a week ...

It's been an interesting week or so. Aidan was supposed to start back with his hyperbaric treatments last Wednesday. We took him for the treatment on Wednesday and he seemed fine. The next day he was just irritable and fussy, and having storms off and on all day. He also started throwing up. Friday we took him and Evan both to the doctor. They both have ear infections. Evan's was just getting bad, but Aidan had apparently had one and it caused his eardrum to perforate so the infection could drain out. His doctor said that it was only in his right ear, but I looked in his ear yesterday and the other one seems to look a little infected now.

Both boys are on antibiotics and we're dealing with all the lovely effects of Aidan being on Augmentin (i.e. terrible diarrhea and infections around his g-tube). Aidan is still having bouts of vomiting. I'm not really sure what is causing it other than sinus drainage and the mucus on his stomach is causing the vomiting. He just acts like he doesn't feel good. I was able to lay with him on the couch last night and sing to him when he was kind of whiny and it seemed to help soothe him. I just hate that there isn't much I can do for him. I just pray he keeps his formula and medicine down each time we feed him.

For some other news, good and bad- We've put a deposit down on an apartment and we're supposed to move November 1st. The apartment is fully handicap accessible and both the boys will have their own room. I'm excited about having our own space again and I'm sure my mom is glad that she's getting her house back and will be rid of the toys and clutter.

The bad news- our chocolate lab, Bear, was hit last Monday night by a car. He was out running around the yard and we didn't realize he'd gone down to the road (we have a 2 acre yard). It was almost dark and the couple driving couldn't see him. Bear's heart stopped beating once I got down to the road, but had started again. Russell rushed him to the emergency vet but he was gone when he got there. The vet tried to resuscitate him several times, but they were never able to get a response.

Bear was my Valentine's Day present from Russell almost 6 years ago. He was a very lovable and loyal dog. Russell and I were looking into having Bear trained to be Aidan's therapy dog just a few days before he was hit. I've had Bear longer than I've ever had any other dog and we will miss him a lot. Here are a few pictures of him. I had some with him and Aidan together when Aidan was a baby, but I couldn't locate them.

Thank you all for your unfailing support, love and prayers. We appreciate them so very much. I'd like to ask that you pray for a friend of mine who's husband has cystic fibrosis. He is not doing well and his doctors have given him 2-4 years if he doesn't have a lung transplant. Please pray that he is able to get on the transplant list and get this surgery soon. They just had a little boy in July. I'd appreciate it if you could say a prayer for them. Thanks!

snuffy

10-11-2008, 10:53 PM

Saturday, October 11, 2008
a few updates

Well, we have some good news regarding our nursing coverage. They are going to continue our private duty nursing hours until we get a final decision on CAP-C. I don't even know how to begin explaining the CAP-C program to you all, but it is a Medicaid program that we had to apply for. There are 3 or 4 tiers of coverage with a monthly budget with which your supplies and equipment and other services are covered under. It's confusing to say the least. The only good thing I can see about the program is that only Aidan's income (nothing since he's 2) is considered to qualify for the program. All other programs would use mine and Russell's income to base their decisions on.

I know that it is really soon since Bear passed away, but we found a labradoodle for Aidan. Her name is Gracie and she is a year and a half old. She was being given away by a couple who's son and family were moving in and they just didn't have the room or time to give her. We really lucked out. Gracie is the most well behaved dog I have ever been around. We took Aidan to meet her and she didn't bark, she didn't growl, or jump. She came over when I got down on the floor with Aidan, sniffed at him, sat down and licked his face. At that moment, I knew that we had to have this dog. We picked her up this afternoon and I took her to the groomers because I know nothing about long haired dogs or poodle-mix breeds. This is a picture of her after we got home from getting her groomed and trimmed. Everyone who met her at the pet store commented on how well behaved she was. I think she is going to make an awesome therapy dog for Aidan.

We only have a few more weeks until we move into our new apartment. We found some great deals on furniture through craigslist and ebay of all places. Another really great thing that is going on is that some people on Russell's Oklahoma State messageboard who we used to go to tailgates with are arranging a fundraiser for Aidan. I can't even begin to say how thankful I am to everyone who has donated toward Aidan's care and treatments. With the cost of gas and wear and tear on our car taking him to and from hyperbaric treatments, your generosity has been a huge blessing to us. We are saving some for Aidan's future needs as he improves and will hopefully need more mobility items (like a walker, we hope). We are nowhere near that point right now, but we are all hopeful and are praying that Aidan will improve to a point that he will be walking before we know it.

Back to the fundraiser- they are going to be having their usual tailgate party at OSU's homecoming game against Baylor. They are going to auction or raffle off a football autographed by the entire OSU team and we have sent them a bunch of our orange and green bracelets to sell. Maybe they can convince some of the Baylor fans to buy a braclet (we hope). So far, that's all I really know about, but I think they are trying to arrange a few other things. All I can say is that I'm flabbergasted. The amount of support and love that we have recieved from friends and complete strangers most of the time is astounding.

I took a few pictures of Russ and Aidan this evening for them to use for the fundraiser so I thought I'd share them here too... Hope you like them. My little boy has grown so much! I'll post more tomorrow.

Thanks everyone!
~Erin

osutuba

10-12-2008, 07:42 AM

Here are the pics from that post ... I apologize in advance if these turn out huge and break the page:

http://4.bp.blogspot.com/_8a8ZOh7n4GE/SPFmTne-VII/AAAAAAAAAKc/K7e7vAYEeeo/s1600-h/Aidan+OSU+10-11-08+005.JPG

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SPFqrMqrhOI/AAAAAAAAAKk/6kBKW_n1Hhk/s1600-h/Aidan+OSU+10-11-08+003.JPG

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SPFqrmlg0lI/AAAAAAAAAKs/q4mYTZde27M/s200/Aidan+OSU+10-11-08+009.JPG

AnniePokely

10-15-2008, 10:54 PM

Thinking about you and your family every day. Still praying for Aidan.

osutuba

10-16-2008, 07:30 AM

Thinking about you and your family every day. Still praying for Aidan.
Just as we are praying for you and yours ...

osujane

10-17-2008, 07:21 AM

Russell and Erin ~ You are both very courageous and loving parents. Don't listen to the sickos - they have no clues.

Prayers for Aidan and your entire family. :angel:

snuffy

10-20-2008, 03:48 PM

Monday, October 20, 2008
a busy week

Last week was so hectic, I apologize for not updating. Aidan had 4 doctors appointments last week. We met with the rehab doctor for a follow-up. He's very limber everywhere except his ankles. He still wants to drop his feet even with wearing the splints (AFO's). We're scheduled to go back in April, a year exactly from the day he came home. We're supposed to continue stretching him and putting him in the stander up to an hour 2x a day. If we can't get his ankles to relax, we'll be doing a botox injection at that visit. I'd rather not have to do the botox, personally. His ankles are better than they were, but they still need some work.

Wednesday, we met with the ENT again to discuss putting tubes in Aidan's ears. Every time he gets an ear infection we have to stop his hyperbaric treatments for a week. He's had 3 ear infections since we started this and before that he'd only had 2 in almost 2 years. So we are scheduled to go in for that surgery on Halloween morning. It will be a quick out-patient procedure. And we can start back with the hyperbaric treatments right away. This will equalize the pressure in his ears without him having to swallow or whatever.

Thursday was our appointments with the neurologist and the endocrinologist. Our neuro said that he's very pleased with how Aidan is doing. Aidan was even trying to follow him with his eyes. We're starting to decrease his valium which is great. I'm hoping that by doing this we'll start to see more voluntary movements and a more alert little boy. He had been on 34mg of valium a day and we're going to try to work down to 20mg per day. He's on enough valium to knock out a normal adult and then some. It'll take us about 7 or 8 weeks to get him weaned down that low. We have to do it slowly so he doesn't go into DTs. I hate to say it but my baby is a drug addict. He's been on so much medication for so long.

As for the endo, she did some bloodwork and asked a lot of questions about family history. She said that if Aidan's weight gain is related to the hypothalamic injury, then there really isn't anything you can do to treat it. However, she thinks that most of his growth is just due to his normal growth. She said that around the age of 2 is when most kids start showing their growth pattern. We'll just have to wait and see what his blood work says. We have a follow-up in December to see how he's doing and talk with the nutritionist again.

So, last week was pretty busy. It was a lot of info to take in. Friday morning I woke up and couldn't even walk. My left knee completely gave out on me and I couldn't bear any weight on it. It was horrible. I couldn't pick up either of the boys, so Russ had to work from home so he could help me out once the nurse left. I went to the doctor and they did an x-ray, but it only showed that I have arthritis. My doctor said it was bursitis and gave me a script for an anti-inflammatory and some pain pills. The next day it was better, go figure. It was the weirdest thing. I've never had something like that happen to me. I knew that I was starting to get arthritis, but it doesn't bother my knees too badly. Anyway....

That's what has been going on. We had a pretty uneventful weekend. I've been trying to clean out the boys old clothes that they've both outgrown. I never would have thought that we had so many boxes of clothes! I never really got rid of anything when I found out that Evan was on the way. Now it's time to get rid of what Evan has outgrown, and I can actually really get rid of it. I'm going to try to list all of the baby stuff on craigslist in the next few weeks, but it's a lot of work, especially when I need to be getting ready to move.

We're moving into the apartment on November 1. We're pretty excited about it. We've gotten just about everything we need. I'm still looking for a dining table and chairs though. Russell's mom is flying out for Thanksgiving, so we're looking forward to that too. It will be good for her to spend time with the boys. They haven't seen her since April. I hate that we're so far away now, and I hated that we were so far away from my family when we were there in OK.

Oh, well. I guess I should go. Evan is into anything and everything he can get his hands on. He's just like Aidan was at this age. I hope that everyone is doing well.

Thanks for the continued prayers and support. We love you all!

Erin

JonforOSU

10-24-2008, 02:47 PM

Good to hear things are going well for Aidan. Continued prayers for the little guy to recover fully and for you and Russ to stay strong.

snuffy

10-30-2008, 04:11 PM

Tuesday, October 28, 2008

Just a quick update to let you all know how things are going. We were approved for the highest level of care on CAP-C, so we get to keep 8 hours of nursing care a day. We were so happy about the decision. It makes it so much easier on me during the day, so I can take care of Evan and get stuff done. We no longer have a nurse at night. Aidan has been sleeping pretty well, despite the fact that I think he had gotten his days and nights mixed up. Having a nurse in with him all night even though they usually only had a little lamp on is a lot different than sleeping in the dark. We're still working on it, but it's getting better.

Friday morning, Aidan will have tubes put in his ears and we will be resuming hyperbaric treatments next Monday. This weekend we are moving, so it is going to be really, really crazy for the next few days.

There isn't much news. I did get a smile out of Aidan the other day. I was changing his diaper and kind of jiggled the diaper up under him and he smiled. I bounced the bed a little again and he smiled again. It was so great! We've tried doing things to get a response out of him and nothing seemed to work. He also "shook" his head when the speech therapist put a tongue depressor in his mouth during his vital stim session. It was the same thing he did to the ENT.

We're decreasing the valium gradually, so I'm hoping we will see more and more improvements out of Aidan.

Today during his vital stim session, I had Evan in the lobby so he could play and there was a little boy there that he was playing with. It made me sad because I couldn't help but think of how Aidan and Evan would be playing (and fighting) together now if this hadn't happened. I feel like we're missing so much with him. He should be running around, talking, potty-training, and just driving me nuts like a normal 2 and a half year old should be. Aidan was always so full of life and energy. It's hard to see the sleepy, zoned out little boy he is now sometimes. I just wish we could all wake up from this nightmare and forget about it and move on with our lives as they were. I miss playing trucks with him and watching him chase the dogs around. Evan is exactly like him. It's bittersweet.... I remember Aidan doing all the same things, his body language, his mannerisms. I just want to see the day that my babies can play together.

The boys are going to Care Bears for Halloween. We are going to my grandma's since it is her birthday. I don't think they are ready for trick-or-treating yet, but I might take them by the nursing home where my mom works so they can see the staff and residents. Everyone there has been so supportive and has helped us out a lot since the accident and they haven't seen Aidan since he was a baby.

Well, I hope that everyone has a safe and Happy Halloween!

Thanks for the continued support and prayers.
~Erin

snuffy

11-07-2008, 01:18 PM

Friday, November 7, 2008
we're moved!

Hi everyone! We got moved last weekend and this week has been spent settling in. Aidan is doing well. His surgery to put tubes in his ears went quickly and he did great. We were able to start hyperbaric treatments this Monday and he seems to be handling them just fine.

We're continuing to decrease his valium dosage and so far I can tell that he is much more alert which is what we were hoping for. I've felt him trying to move his arms and legs more too. He's smiling more now too.

I don't have the pictures of the boys from Halloween downloaded yet, but when I get them, I'll post them. We had a heck of a time getting Aidan into his costume. He's gotten so big! I think we're soon going to have to go up to 5T pants, or just start buying all pull-on pants.

The endocrinologist says that it's just his normal growth pattern and that it should taper off soon. To me he feels lighter actually, he's just getting longer. We'll have to check him the next time we go to the doctor.

Well, that's all the news for now. We're just getting settled in. I'm still waiting on some pictures I ordered for Aidan's room to come in and then I'll take some pictures of his room. It's so cute...

I hope everyone is doing well. We thank you all for you love, support and prayers. We keep you all in our prayers as well. Have a great weekend!

~Erin

JonforOSU

11-11-2008, 04:11 PM

Good to hear you guys got moved. I know you all were looking forward to that. Sounds like Aidan's recovery is coming along nicely. I still pray for the little guy. He'll be back to normal in no time. Soon you and Russ will look back at this event and count your blessings. Continued prayers for your family.

snuffy

11-17-2008, 07:29 AM

Friday, November 14, 2008
my, how the time flies

Sunday will be 9 months since Aidan's accident. I don't know how I feel to be honest. I still have days that I can't believe that this is what our lives have become. I feel like my son was stolen from me. All the things that could have been, watching him grow and develop and be a normal little boy.... it was ripped away from us. I hate to see little boys his age knowing that Aidan can't run and play with them. Then there are days that I'm okay. I can deal with everything. Most days though I feel like I'm just getting by. I try not to think about it and just do what needs to be done for the boys.

We're settling into the apartment and things are much less stressful. Aidan hasn't had as many of the painful seizure episodes as he had been having which is a blessing. I hate knowing that they are hurting him. Next month we go for an evaluation with the special-ed preschool. Aidan will be able to go to preschool once he turns 3. I'm looking forward to it in a way because I think it will be good for him to have that exposure to other children and I think that it will help him to be with teachers that know how to help him. I try, but I don't think I'm doing good enough, especially when I have to take care of Evan too.

It's hard to believe that Thanksgiving is fast approaching and then Christmas will be here before we know it. This Thanksgiving has so much more meaning for me. For the first time in my life I think I have more to be thankful for than I could ever imagine.

Well, I just thought I'd post. We're getting some pictures taken tomorrow so that I can get Christmas cards made. I make my own cards and I wanted to get them done early if I can. I'll get the Halloween pictures up as soon as I get them off of my mom's camera. The batteries in mine are dead. Sorry I've been so slack about getting it done and posting.

We are so grateful to everyone for their prayers and endless support. I hope you all have a great weekend!

~Erin

snuffy

12-01-2008, 07:46 AM

Thursday, November 27, 2008
Giving Thanks

Well, today has been an interesting day... it's been an interesting week actually. Russell's mom flew in from Oklahoma on Saturday and we've really enjoyed spending time with her. It's been good for the boys to spend time with her.

We found out last Saturday morning that our dog, Gracie, the one we're going to train to be a therapy dog for Aidan is pregnant. Well, I should say was pregnant. When we got home from my grandparents this evening she was in labor and had already had a puppy. That was about 4 hours ago and we now have 6 puppies. If anyone is interested in a labradoodle puppy, let me know-we surely can't keep them.

Today has been hard. Not as hard as Christmas is going to be, but I'm having a tough time dealing with the memories of Aidan from last year. Despite all of this, I must say for the first time in my life I actually feel thankful and I'm more aware now of all the blessings in my life. Growing up, my Mamaw Bernice would go around the dinner table and ask us all what we were thankful for that year. I always hated it, because I could never think of anything worth being thankful for.
That sounds terrible, but I know I took my life for granted, I took the people and things in my life for granted. I know now how lucky I was and I still am to have the family and friends that I have in my life.

Since Aidan's accident, God has provided us with what we've needed-Russell's job, an apartment when we were ready, etc. I learned to quit worrying about everything and just accept that things would happen the way they are meant to happen.

I want more than anything in this world for Aidan to be whole again. I'd give him whatever he needed from my brain to fix his if I could. I want for my boys to be able to play together and fight together. I have hope and faith that God is going to continue healing Aidan.

So, in honor and memory of my grandmother, I'm going to share what I'm thankful for this year. I'm thankful that I have so many wonderful loving, caring and supportive people who've touched my life. I'm thankful to have been blessed with 2 of the most beautiful, amazing little boys who are the light of my life. I'm thankful for the amazing first responders and doctors who brought Aidan back and took care of him. But most of all I'm thankful that Aidan is alive.... that I can see his beautiful brown eyes and his cute little chubby face every single day. I miss the little boy that he used to be and the one that he would have been, but I have him.

I hope that everyone is enjoying their family and has a wonderful holiday. I have some pictures to post, but I'll do them after dealing with puppies.

Love to everyone!
~Erin