Aidian's Recovery [Archive] - Page 2

snuffy

12-09-2008, 05:24 PM

Monday, December 8, 2008
Sorry for the long delay ...

I know it has been a little while since we have posted anything on here, but things have been particularly busy lately. Erin spent the past couple of weeks getting stuff ready for a friend's daughter's birthday party this past weekend. Below is the afghan and cake she made for Miss Abby, who just turned 4. The theme for the party was The Wizard of Oz.

Before that, though, we paid a visit to Santa at my workplace. It was a neat little event, which gave kids a chance to get their picture taken with Santa and share some cookies and milk with him. As you can see from the second picture, Evan really enjoyed his cookie. :)

And for those of you wondering about the puppies, they are growing like weeds. Hard to believe they are almost two weeks old! I believe this picture is from just after they were born.

Aidan has an appointment tomorrow with a preschool for Special Needs kids. I am sure Erin will post something about that when we get back home or sometime after that. Other than that, we have been getting ready for Christmas to get here. I am also looking into some therapy for myself ... something called somatic experiencing. It is something the doc at the hyperbaric center is doing. I think we are going to meet up this weekend to discuss it further.

As always, your continued thoughts and prayers are welcomed and greatly appreciated. Pray that I will hear good news about my contract; I'm supposed to know something in the next week or two. Also, pray for me as I start working towards running again. I have done it before, but I had the support of a running group. This time, I'll most likely be going out on my own.

~Russell

snuffy

12-09-2008, 05:26 PM

Tuesday, December 9, 2008
more pictures

The much awaited Halloween pictures are finally downloaded! Russell forgot to add them last night when he posted.

These are some that were taken from Thanksgiving day and this past Saturday while we were waiting to see Santa.

Hope you all enjoy the pictures. Aidan is starting to respond to be tickled. He will smile a little when you tickle him, but not every time. The other night I came in to talk to him before going out to run some errands and I tickled his nose and he smiled at me. And then when I was stroking his cheek he smiled at me again. It's enough to melt your heart into a giant puddle of mush when he smiles at you.

That's all that is going on right now. We're getting ready to leave to go to the school for his assessment so I will post news about that later.

Hope everyone is having a great day!

http://prayforaidan.blogspot.com/
Click on the link for the pictures.

snuffy

12-23-2008, 12:31 PM

Tuesday, December 23, 2008
ever wish you had a crystal ball?

I'm wishing that I had had one when I was pregnant with Aidan. If I had known then what I know now about saving his cord blood and the possibilities his own stem cells have of healing his brain now, I'd have jumped at the opportunity. Now, I'm just kicking myself in the butt for not doing it anyway.

I know that stem cell research is a very touchy issue with some people, but cord blood stem cells really shouldn't be that controversial. They are taken from the placenta at birth or otherwise destroyed as medical waste.

http://www.cordblood.com/cord-blood-banking.asp
This is a story that was featured on the Today Show about a little boy who was treated with his own cells.
It's extremely interesting and proves to me that there is hope in using stem cells. They are just now starting to see the effectiveness in treating injuries like Aidan's.

I bring this up because Russell and I have been discussing whether we want another child in the near future. If we do decide to have another baby, we're definitely saving the cord blood because there is a chance that it could be used to treat Aidan. Siblings are twice as likely to be a match according to what I've read. While that wouldn't be our purpose to bring another baby into the picture it is definitely a perk.

Anyway, I just thought I'd share some of the stuff I'd been reading.

The past few weeks have been good. Aidan is doing well. We've decreased his methadone and he has responded well to that. With Christmas just a couple days away, I'm just reminded of how sad I am. I'm trying to keep myself busy by crocheting and doing housework which is why I haven't been posting a lot lately. It's just too hard sometimes.

Aidan finished his 80th hyperbaric treatment last Friday and is taking a break until sometime in April. The center was fully booked so we couldn't start back at the first of the year like we were thinking initially. The break will do us all some good.

So that is what is going on here. I hope that everyone is doing well and having a wonderful holiday!

Erin

snuffy

01-04-2009, 11:21 AM

Tuesday, December 30, 2008
hopefully 2009 will be better

I hope that everyone had a Happy Holiday and Merry Christmas. I meant to post a card, but never got around to it. I wasn't much in the mood really. The boys had a good Christmas. Evan racked up on toys, not that he needed any, although I think his favorite is the little tikes truck Santa brought. He's in it first thing every morning and pitches a fit if you have to change his diaper first.

Aidan got a lot of therapy toys and the like. Santa brought him a couple of vibrating pillows and a therapy ball along with some toys that light up. It was hard buying gifts for him because we really didn't know what to get him. They both got several books and DVD's.

Christmas eve and day were really hard on me. Christmas day after opening gifts at my mom's, I came home and crawled in the bed and slept. I just wanted to forget about it. Our GPS was stolen out of our van that day too.

Yesterday we found out that Russell's job is ending tomorrow. He went on an interview last week and has had several emails regarding other positions so we'll have to wait and see. Luckily he has worked at his job long enough to qualify for unemployment until he finds something.

This is not the way I wanted to start the year. The economy sucks and it looks like I'll have to try to find a part time job. If I'm lucky I can find something, but I'm not going to hold my breath. Things are rather tight after moving and covering those expenses. I wish we could have waited longer to move, but it had to be done. We needed our own place. It's been better for Aidan and all of us in general.

Anyway, we're fast approaching the anniversary of Aidan's accident and his 3rd birthday. I don't even know how to handle it all. I wish someone would invent a time machine so I can just go back and redo the last year and pretend it was all a horrible, miserable nightmare. I guess in my own little fairytale world 2008 will just start over at the stroke of midnight tomorrow night. Wouldn't that be nice. If that would happen, I'd do everything in my power to keep Aidan safe. I'd listen to my gut when I felt I should have brought him inside that day... or maybe I wouldn't even have his birthday party that day. I'd keep his little monkey backpack "leash" on him and not let him out of my sight EVER!

I know I'm bargaining... I'm in complete denial, but damnit! I want my baby back. I want to go back to our boring mundane life where Aidan runs into my room every morning and snuggles with me. Where he jabbers to himself even though I insist he try to talk. I'd be willing to give up as much of my life as I had to to keep him from going near the pond just so he could be normal again, so he could be safe.

I'm sorry to be so depressing, but I've had all I can take. Russell losing his job, a job that he really enjoyed and we were hoping and praying would go permanent and just the whole holiday has really got me down. I don't know when or where in my life I screwed up to bring this existence on myself or my children, but I wish I knew. I wish I could fix it all. Aidan and Evan deserve better than me. Aidan deserves to be a normal, happy little boy. He and Evan should be fighting over that stupid truck and laughing and playing together.

I wish it was me instead of my baby. Oh, well... enough moping and wishing for something that isn't ever going to happen. So much for a new year- maybe it will be better.

JonforOSU

01-05-2009, 03:32 PM

Keep your head up you two. Everything will work out. Know that there are a ton a people here pulling for your family and praying for you all.

OSUFan

01-06-2009, 09:04 AM

Keep your head up you two. Everything will work out. Know that there are a ton a people here pulling for your family and praying for you all.

We're thinking and praying for you everyday.

cactusjack

01-12-2009, 12:24 PM

Keep your head up sweatheart.

snuffy

01-12-2009, 08:57 PM

Saturday, January 10, 2009
"Resolutions" for 2009

As it is for many of the rest of the world out there, the start of the New Year is a time to make resolutions so they can attempt to make their lives better. Even though I need to lose weight, I feel this year I would rather set "resolutions" in regards to Aidan.

So, without further ado, here are our resolutions/goals for Aidan's continued recovery in 2009:

- Start moving towards giving Aidan regular food. Even if we don't get to feed him by mouth regularly, it would be nice to start blending real food into his formula. We have a swallow study coming up next week, so we'll see where we stand.

- Get Aidan in preschool. This is already in progress, and I believe we will start him on March 1, but we may start the Monday after his birthday. We have a meeting with the preschool on the 27th to go over his Individual Education Plan (IRP).

- See Aidan sit unsupported. He is show some improvements in head and trunk control, but there is still a lot of work to do. We were told at the preschool that this is something they will work very hard on for him.

- Start a second set of 120 HBOT treatments. Our last set of 40 starts in April. We have seen quite a bit of progress with his last 40 soft and 80 hard treatments, so I'd love to get another round going. This would be especially helpful because we want to ...

- Take Aidan somewhere to receive Stem Cell Therapy (SCT). This is one of the big ones for us. There are two places to consider right now: Mexico or China. Mexico would be the shorter trip, but China offers many more options (more injections (4-7 over a max of 4), more cells per injection (10 million vs. 1.5 million), PT/OT during stay, and room covered in cost). No matter how you look at it, it will take about $25,000 to cover all the expenses for Erin and Aidan to go (someone's gotta pay the bills back home). There will soon be a new ChipIn widget or two if you would like to donate towards our expenses for either of these treatments.

Here are some links if you want to learn more about SCT:

http://www.beikebiotech.com/
http://medra.com/
http://www.stemcellschina.com/

- Go back to Oklahoma to visit friends and family. I can truly appreciate how Erin felt about being away from home now. I really miss getting to see my friends and family, even if it isn't all that often. Tentative date is the weekend of the Cowboy's first home game against Georgia.

Now, for some other updates:

As was posted previously, I lost my contract job at the end of the year. I have been on the hunt for a job and think I may have one. I interviewed for a job on Friday and had a very good feeling about it. How good? When I sat down in the conference room and for the interview and had a moment alone, I looked out and saw Downtown Charlotte. Something about that view felt very ... right. In fact, the whole thing made me feel like I was back at my last job in Tulsa, even though the office space was pretty much empty (the company is moving all IT operations to Charlotte, but the move isn't complete yet). The interview even felt like it did when I interviewed for my last job in Tulsa. The interviewer, who would be my manager, seemed happy to hear I was immediately available and appreciated the approach I take to my job. We'll know for sure the first part of next week.

Erin is in the process of creating a Valentine-themed afghan. She is deciding if she is going to raffle it off or simply sell it. Stay tuned for more details as they become available. We have also created a CafePress account and will have products available to buy there in the near future. We'll post the link as soon as we have products ready. Our other storefront is still available if you want to purchase bracelets, though.

Hope everyone had a great holiday, and enjoy your weekend!

-- Russell

snuffy

01-22-2009, 03:53 PM

Friday, January 16, 2009
If it is always darkest just before the dawn ...

then we must have been in a black hole the last two weeks!

When my last job ended on 12/31, I really thought we were going to be in for the long haul in terms of keeping things together. That was the case until today.

10:30 AM -- I get a phone call on my cell. It's the guy who interviewed me last Friday ... offering me a job! If you were to ask if I thought about it, I'd paraphrase Data from Star Trek: First Contact: "0.68 seconds [...]. For an [unemployed worker], that is nearly an eternity." I start my new job on Monday and I am ecstatic about it! Thaks to everyone for the prayers and well-wishes of good luck. God is Good!

1:00 PM -- Aidan had his swallow study today. I missed the last swallow study, so it was quite fascinating to me to watch the fluoroscope while Aidan attempted to swallow foods of varying thicknesses. In the end, though, we got some wonderful news. Aidan is now able to take 1st and 2nd level baby foods by mouth, as well liquids that are thickened to at least the consistency of honey. To get the honey consistency, you take the same juice you by at the store and thicken it with a product called ThickenIt, which is available at most drug stores. They gave us a container of it on our way out. The lady performing the test was very impressed with Aidan's progress and hopes to see further improvement after 20 more Vital-Stem treatments.

6:00 PM -- We all went to PawPaw's house for dinner and to pick up some baby food Sonia brought over with her. For the first time in 11 months, Aidan actually ate some of his dinner. Sonia recorded it for posterity, though PawPaw and I were discussing politics and the media's corruption of the American Justice System in the background and it got in the way of the moment. Erin is going to get the video and then edit it before posting it to the site. We have been ordered to feed him 6 times a day this way and supplement this with the feeding we normally give him.

The pups are growing like crazy, but we are ready to give them to a good home. If you are interested, simply send an email to russdwright at gmail dot com and I'll give you all the details.

Once again, thank you so much for all the prayers. Today was proof that God has had His hands on things and that He fully intends to make things better in his time.

--Russell

JonforOSU

01-22-2009, 11:56 PM

Great news, congrats!!!

AnniePokely

01-25-2009, 06:23 PM

That is great news! I'm very happy to read this, Russ!

osutuba

02-02-2009, 06:56 PM

I figured I'd post an update on how Aidan is doing.

We are continuing to feed him by mouth. Right now he isn't able to take in a lot only about 1/8th of a cup right now, but we're working on it. He has been vocalizing a lot more than he had before. He's making a lot of cooing, grunting and other similar noises.

This afternoon when his nurse, Rachael, was waiting on me to unlock the van door, he was smiling and actually made a squealing sound. He only did it once, but it was very exciting. He hasn't made any noises like that to indicate he's enjoying something or that he is excited. Aidan has always loved being outside though, so maybe that's why he did it.

I met with the therapists and teachers at the preschool today to go over Aidan's IEP (individual education plan) and their assessments and goals. I think we're all on the same page as far as goals for Aidan's physical abilities and communication. I just hope that by getting him into school with other children and in an environment where people are working with him every day that it will help him surpass those goals.

We're down to the last 2 puppies out of Gracie's litter of 8. I have someone coming this evening to look at them that is interested in both of them. I will absolutely jump for joy if she takes them both. I love puppies and dogs, but I don't want to be the one dealing with a whole litter of the little buggers.

Russell's job is going well, I guess. It's all still new, though.

Well, for now, that's what is going on. I'm still working on the Valentine's afghan. This is what it will look like or very similar. I'm hoping to have it finished soon. I haven't been working on it as much as I should be, but it is coming along. I haven't decided if I'm going to raffle it off or just sell it. I don't even know if anyone is interested in it. Anyway...

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SX-P6fiCE6I/AAAAAAAAAMk/DpFpAYPMHSc/s200/happy+hearts.jpg

I'll try to update again soon.

~Erin

osutuba

02-02-2009, 06:57 PM

I feel the need to clarify some things (http://prayforaidan.blogspot.com/2009/01/i-feel-need-to-clarify-some-things.html)

After receiving a message this morning from a person asking if Aidan was walking yet (no offense to the person who asked), and just from other questions I'm asked about Aidan's condition, I feel the need to clarify the severity of Aidan's accident.

I think a lot of times we let things that we've seen on TV cloud our perception of what happens in certain cases. I know that I had this picture in my head of Aidan being in a coma and that he would just wake up eventually, maybe requiring some physical therapy to help strengthen muscles, etc, but he would be perfectly normal. That isn't the case for Aidan. He isn't one of the kids that you see on TV that fell through ice and was brought back from the "dead", only to be in a coma for a few days with hypothermia and then wake up a few days or weeks later perfectly normal.

Aidan sustained significant brain damage due to the lack of oxygen. The parts of his brain that control visual perception were damaged. His eyesight is fine, but the connection that allows him to understand what he is seeing is damaged. Overall, his brain shrunk. The ventricles, the areas in the brain that have fluid enlarged some. When brain cells become damaged or in Aidan's case, die, the brain matter become soft and the fluid in those ventricles displaces the brain cells. It's hard to explain.

The neuro-storming that Aidan had/has is due to damage in another part of the brain. He has a hard time dealing with stressful situations, he can't regulate his temperature well, etc.

We are trying to help his brain heal those areas or help build new pathways around the damaged areas. For a long time, it was believed that brain cells don't heal or you don't regrow neurons, but you can. It just takes a very long time. Hyperbaric Oxygen therapy is one way that we are trying to help Aidan. The increased oxygen and a higher atmospheric pressure can help him produce more of his own stem cells that he would produce without any therapy. Our bodies make stem cells all the time, in our bone marrow. Our stem cells are different than embryonic stem cells though. I can't even begin to explain that here.

We are hoping to take Aidan for stem cell therapy. We keep praying for a miracle, because frankly, I can't tell you what is going to happen to Aidan. I don't know if he'll always be like he is now; minimally responsive and completely dependant on someone for care or if he'll dramatically improve and be a normal little boy again. There is a whole gamut of possiblities in between the two extremes.

Aidan has come a long way in a year though. He isn't having storms any more, though they are controlled by medicine. He's breathing completely without assistance (his trach was removed 5 months after it was put in). He is now beginning to eat by mouth because he's improved his swallowing reflex. He responds to our voices, music, etc and will squeeze our fingers when we ask him to. He smiles and laughs.

This is all very hard. I want him to be like he was last year this time. I want my normal, happy, mischievous little boy back, but I can't turn back time. All I can do is pray and do everything in my power to get him the therapies that we feel are going to help him heal as much as possible. The brain is a very delicate organ. Even the neurologists can't tell us what is going to happen. We take it a day at a time and try to set reasonable accomplishable goals for him.

Our biggest goal for him physically now is for him to regain some head control. I'd love to eventually have him crawling or even rolling around. Maybe we will be able to see that soon (not in weeks or months soon, but maybe another year or so.)

I hope I haven't rambled on too much, and have given you all a more accurate view of Aidan's condition. He isn't just going to get better one day. Every day he does just a little bit more than he did the day before and most of the time it's so slight that we don't notice it until he's done something consistently and it hits us that he's doing something "new".

We greatly appreciate the continued prayers and we ask that you keep up with them. We are praying to be able to raise the money to take him for stem cell therapy. I just have a feeling that it is going to be one of the things that's going to help him the most. We do have his age on our side. Children are resilient, amazing little people. Aidan is a miracle, there's no doubt about that.

~Erin

osutuba

02-02-2009, 07:02 PM

video of Aidan eating (http://prayforaidan.blogspot.com/2009/01/video-of-aidan-eating.html)

I took this video last night while I was feeding Aidan so that everyone could see how he is doing. You also get a chance to kind of see what his seizures are like, even though you can't see the effect on his whole body because I'm so close, but it gives you an idea. He will open his mouth when I ask him, and a lot of times when I ask him a question, it sounds like he is say "uh-huh." I'm not sure how much of that his him trying to answer me or it's just him vocalizing/whining.

It's kind of a long video (a little less than 8 minutes), and it's not the greatest, but I wanted everyone to see how he's doing and to show you just how much he actually eats right now.

Thanks!

http://www.youtube.com/watch?v=-XqC3bV3_Vo (http://www.youtube.com/watch?v=-XqC3bV3_Vo&eurl=http://prayforaidan.blogspot.com/&feature=player_embedded) (someone please make this video actually appear on here!)

Verb

02-02-2009, 07:06 PM

That was a really informative update, Russell. Thanks for posting it. I continue to have a lot of hope for Aidan. I'm encouraged by the fact that he's making continual progress.

osutuba

02-02-2009, 07:13 PM

I noticed snuffy had been slacking in posting updates, so I thought I would take the initiative. Not much to do right now except catch up on old friends and listen to AccuRadio

bleedorange

02-02-2009, 10:30 PM

I noticed snuffy had been slacking in posting updates, so I thought I would take the initiative.

I'm not so sure I'd use the term "slacking" as it has a bit of a negative conotation. Actually snuffy has been pretty thoughtful and vigilant about posting updates. His latest was only just a bit over a week old. I certainly appreciate his efforts.

osutuba

02-03-2009, 06:58 AM

Maybe I should have added a wink to that, as I realize snuffy has been posting regularly and I meant no malice in my statement :)

bleedorange

02-03-2009, 09:36 AM

Maybe I should have added a wink to that, as I realize snuffy has been posting regularly and I meant no malice in my statement :)

ah...my bad. Apologies, I misinterpeted your post.

osutuba

02-03-2009, 02:52 PM

NP, man. It's all good ;)

AnniePokely

02-04-2009, 10:41 AM

Moved this thread to the Hall Of Fame board. Left a redirect on the n/s board

Verb

02-16-2009, 04:59 PM

It's been a while. Any news?

snuffy

02-17-2009, 08:09 AM

One LONG Year

Today is the anniversary of Aidan's accident. Actually it's almost exactly a year to the minute we were told he was actually alive. This has been the most trying, exhausting, frustrating, scary, thankful year I've ever had. I've tried not to dwell on the events of that day. It's hard, because they always play through my mind, especially when I least expect them to. Instead, today was spent at the hospital waiting for Aidan to have an MRI and a SPECT scan. I guess that kept my mind off of it, despite the fact that I spent the day in the same hospital we lived in for 6 whole weeks a year ago.

The local news station called Russell today and wanted to do a follow up story on Aidan. We met with the journalist at the hospital and Russell did the interview. I didn't want to be on camera. She then followed us home to get some pictures of Aidan with his nurse and some with Evan. I haven't seen the interview yet, though it is supposed to be airing soon.

Since I don't want to get all emotional about the past and things that I have no control over, I just want to say how extremely grateful I am to the many people who have been praying for our family, and shown support for our family. I am continually in awe at the compassion shown by perfect strangers. I realize that this happened to Aidan for a reason. God has a purpose for Aidan. He has touched so many lives all over the world, and I hope that he continues to do so. I keep praying that he continues to make remarkable improvements and that this will be his testimony for others.

Aidan has improved so much since last year. He's grown a lot. He doesn't have the neuro-storms any more, although he has days of irritability. He is able to breath without the trach, he's much more limber, and he's now able to eat by mouth. Aidan smiles and laughs and coos. He does things that I never thought he'd be able to do again.

I hope and pray that next year I can be reflecting on even more milestones and accomplishments. I'm praying that we are able to raise the money to get stem cell therapy for him and to continue hyperbaric treatments.

One thing I want to pass along to anyone who has children in their lives, be it their own child, a niece/nephew, a grandchild, whatever--- never leave small children alone near water. A child can drown in as little as an inch of water. And always communicate with other adults who are looking after children. Aidan's accident could have been prevented if we had just communicated with each other. If I had known he was on his way to the part of the yard/porch where I was, I would have noticed that he wasn't where he was supposed to be much sooner.

Accidents can and do happen. The best we can do is to try our best to prevent them and keep our children safe, but it doesn't make us bad people because an accident happened.

Again, I thank you all for following my ramblings this past year, for patiently awaiting news on Aidan's improvement and for praying for him and loving him. That is one of the greatest gifts. I'd give each and every one of you a huge hug if I could.

~Erin

snuffy

02-17-2009, 08:12 AM

http://news14.com/Default.aspx?ArID=605096

1 year later after accident, family reflects

By: Bryn Hough

CHARLOTTE – The Wright family says the year since their son Aidan almost drowned has been a struggle.

Just days before his second birthday, the toddler wandered away and was later found lying face down in a pond. He wasn't breathing when emergency crews rushed him to Northeast Medical Center. But doctors were able to save Aidan after working on him for 45 minutes.

While the family says Aidan is making progress, they admit it has been hard.

"We see kids his age and we see what they're doing and think he should be doing that, not being in a bed or being in physical therapy," father Russell Wright said.

Wright said he is looking into a stem cell research project in China to help repair Aidan's brain

There is interview and news story on the link.

JonforOSU

02-20-2009, 09:22 AM

Thanks for the updates Russ. Continued prayers for the little guy, seems like he's doing well.

orangeblood

02-20-2009, 09:35 AM

He looks GREAT! Russ you guys are doing a great job.

osutuba

03-09-2009, 05:51 AM

He looks GREAT! Russ you guys are doing a great job.
Thanks! I keep forgetting Annie moved this thread to the Hall of Fame Board, so I neglect checking it for everyone's comments.

osutuba

03-09-2009, 05:52 AM

Sunday, February 22, 2009

Happy Birthday, Aidan! (http://prayforaidan.blogspot.com/2009/02/happy-birthday-aidan.html)

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SaGZey94u_I/AAAAAAAAAOM/0spp9F7Czb4/s200/DSCN4054.JPG (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SaGZey94u_I/AAAAAAAAAOM/0spp9F7Czb4/s1600-h/DSCN4054.JPG)http://3.bp.blogspot.com/_8a8ZOh7n4GE/SaGZeo5tuxI/AAAAAAAAAOE/f1ZYyn6SONo/s200/DSCN4052.JPG (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SaGZeo5tuxI/AAAAAAAAAOE/f1ZYyn6SONo/s1600-h/DSCN4052.JPG)

Yesterday was Aidan's 3rd birthday. It was a busy day for all of us. We had a house full of family and friends who came to celebrate with us. I made Aidan's cake. It was a huge yellow crayon, although it didn't turn out exactly as I had pictured in my head because I ran out of time to work on it. We had lunch and just hung out like we generally do when our family gets together. Aidan fell asleep in his wheelchair, and even slept through us singing "Happy Birthday" to him. I got to blow out his candles for him and we all made a wish for him.

He got a lot of clothes, which he needed, and his Nana got him a new CD player and some CD's. He got some money, too, so we're going to get a new DVD player for his room.

Aidan is resting today. Tomorrow he starts preschool. I'm not ready for it myself, but I think that Aidan will do well being around other children. We'll see.

I have a video of us singing to Aidan yesterday and I need to get additional pictures from my mom and aunt, so I'll post those when I get a chance.

~Erin

osutuba

03-09-2009, 05:53 AM

Monday, February 23, 2009

birthday picture slideshow (http://prayforaidan.blogspot.com/2009/02/birthday-picture-slideshow.html)

http://picasaweb.google.com/erinwright78/Movies?authkey=ogCDd9FYJCE&feat=directlink

Hopefully this works. Just click on the link and then on the slideshow.

osutuba

03-09-2009, 05:53 AM

Wednesday, March 4, 2009

Growing up so fast! (http://prayforaidan.blogspot.com/2009/03/growing-up-so-fast.html)

Today is Aidan's first full day of preschool. I think he'll do just fine. Last week he went half days and his nurse went with him. The very first day he smiled when they did "circle time" and sang. He's painted by rolling a truck through paint and ridden in a wagon. I think he's going to really enjoy being around other children and being in a different environment.

Last Monday, I got a call from the neurologist about Aidan's MRI and SPECT scan. Aidan has two small hemorrhages in his brain. The larger one is 4-5mm, which is really small. We are trying to figure out what caused the bleeds. As far as we know, there is no family history of bleeding or clotting disorders, and I don't know of anyone who bruises easily in my family. Because Russell is adopted, we don't have a very complete family medical history, so it's hard to say. We know very little based on what his mom knows. Anyway... we went Wednesday and had some blood work done to hopefully find out what is causing the bleeding.

The good news is that aside from the bleeds, Aidan's MRI was stable. There wasn't any additional atrophy or shrinking, so that is good. We're okay with stable. I had hoped for something better- I don't know what, but better.

Aidan is doing so well eating by mouth. He LOVES applesauce, he did before the accident too. He's been eating more at each feeding too. We're up to about 2 ounces on a good day. There have been a couple of occasions that he's eaten more than that, too.

Yesterday was a year since he had the g-tube and trach surgery. We no longer have the trach, and we're working on the g-tube, although Aidan will have it for a while. It's just easier to have it, even if we don't have to use it on a regular basis. That is what we're working toward. The more food he can tolerate by mouth the less we have to use the tube and we can start mixing his meds into his food. The g-tube would just be there for occasions that he couldn't eat or take his meds by mouth.

Yesterday, I found an inflatable parrot for Aidan. It's bright and colorful and once I got it blown up, I gave it to his therapist and she got him to track the bird. It was great! He followed it very well. I rigged it up so that it looks like it's perched on the bar of his swing in his room. It's amazing the things you can find that can be therapy "toys".

Well, that's what is going on here. Sorry for the slack in updating. I'll try to post again soon.
Thank you everyone for the continued support and prayers!

~Erin

osutuba

03-18-2009, 09:54 AM

Happy St. Patrick's Day (http://prayforaidan.blogspot.com/2009/03/happy-st-patricks-day.html)

Something exciting happened this afternoon- When Aidan's OT was here she had Aidan in her lap and was laying him back, his head flopped back a little and he started smiling and laughed. She did it again, and Aidan was actually anticipating her laying him back. He squealed out loud he was so excited about it. He was also pulling his arms up to indicate that he wanted to do it again. He squealed another time, too. I couldn't help but cry hearing him laugh out loud and respond to someone playing with him.

Anyway, I just wanted to share that with everyone. I'm so proud of how well he is doing. Aidan seems to be having a good time at school too. I have a meeting in the morning to review his IEP and go over the feeding issues. Hopefully we can add a feeding goal to his IEP. He is doing really well at home and will occasionally eat up to 3 oz of baby food at one sitting.

Other than that, we're all doing pretty good. We got a "new" vehicle for Russ to drive to work. He got an '04 Ford Escape. It's a pretty nice car and with him driving to Charlotte every day for work, I feel better with him driving something newer. I finished a cake this weekend and I have another one to do in 2 weeks. This is the one I finished Saturday morning.

http://4.bp.blogspot.com/_8a8ZOh7n4GE/ScANxTPkLXI/AAAAAAAAAR0/q9-nCoTZ8G4/s200/March+14+076.JPG (http://4.bp.blogspot.com/_8a8ZOh7n4GE/ScANxTPkLXI/AAAAAAAAAR0/q9-nCoTZ8G4/s1600-h/March+14+076.JPG)

I am still working on sewing the squares together on the afghan. I know I've been so slack about it, but other things have come up that had to dealt with first. I'm about half done with sewing it together and doing the border. I'm going to work on it some this week in the evenings and maybe some during the day if I can get Evan to take a nap when he is supposed to.

Well, I hope that every one is doing well. Hope you all have a great week! :)

~Erin

Verb

03-18-2009, 10:12 AM

Wow--Aidan is interacting with other people. That is HUGE! What exciting news!

orangeblood

03-18-2009, 10:16 AM

GREAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I love it when a child laughs! Wonderfull news about his progress! Keep up the good fight AIDAN!!!!!!!!!

OSUFan

03-18-2009, 11:13 AM

How wonderful!!!

Erick

03-18-2009, 11:13 AM

Wonderful new! Like Orangeblood said, there is nothing as sweet/funny as when a child laughs.

osutuba

03-18-2009, 11:15 AM

Wonderful new! Like Orangeblood said, there is nothing as sweet/funny as when a child laughs.
I wasn't there when it happened. I'm going to encourage Erin to record the next few sessions in hopes we can get it "on tape" and then upload it to YouTube to post on the blog.

barryrules

03-18-2009, 12:26 PM

That brings tears of joy!!!!

JonforOSU

03-18-2009, 12:38 PM

That is totally awesome!!!!

Man, you need to take up the cake making business, that cake is awesome, Ace of Cakes style!!!! I love that show. Yours is just as good!!!! That's it, your making my next cake.

Continued prayers for Aidan, glad to hear he's doing so well!!!

osutuba

03-18-2009, 12:40 PM

AnniePokely

03-18-2009, 02:39 PM

HIGH 5 RUSS!!!!

Aidan was having fun! Seeing your boy laugh and smile would bring me to tears as well.

We really need to get Aidan and Mimi together. They are both such fighters!

osutuba

03-18-2009, 02:48 PM

high 5 russ!!!!

Aidan was having fun! Seeing your boy laugh and smile would bring me to tears as well.

We really need to get aidan and mimi together. They are both such fighters!
hell yeah!

osutuba

03-26-2009, 11:30 AM

You want me to keep posting blog updates?

osutuba

03-26-2009, 11:31 AM

Monday, March 23, 2009

today's doctor visit (http://prayforaidan.blogspot.com/2009/03/todays-doctor-visit.html)

We met with Aidan's neurologist this morning to go over his last MRI and SPECT as well as the last EEG and the blood work that was done. We looked at the MRI images and compared them to the first ones that Aidan had. There has been little change which is good. The damage that Aidan initially sustained is stablized. We did see the areas where he has had some subdural hemorrhaging. We still aren't sure what caused the bleeds since Aidan hasn't had any visible trauma to his head.

I think the main concern now is to get the seizures under control. Aidan has many, many seizures a day. I can't even keep track of them all. The nurses try and they try to keep a count while he is at school, but there are a lot. We're going up on the Keppra to help control those.

I asked Dr. C if it is possible to get them under control so that he doesn't have them at all and he said that is his goal- to get Aidan to a point where he doesn't have any seizures at all. The Keppra is a "maintenance" drug from the way he described it to us.

Aidan will have another MRI on April 2nd to make sure there is no additional bleeding and to see that the other ones are starting to be reabsorbed. If they look larger or there are more, we will be referred to a different specialist to make sure there is nothing wrong with his blood that would cause this. That's what the blood work was supposed to be for, but he said the specialist would be better suited to do the tests.

Aside from that, the doctor is optimistic. He's always been optimistic. He's willing to try whatever it takes to help Aidan. We couldn't be luckier to have him as Aidan's doctor. He is very pleased at Aidan's progress, which makes me feel much better. Aidan has come such a long way. I just hope he continues to progress and surprise us all.

Thank you all for your prayers and we ask that you continue to pray for Aidan. I'm never going to give up on a miracle recovery, but so many of our prayers have been answered and it hasn't been without your efforts and support along the way.

I'll try to post more soon.
~Erin

osutuba

04-01-2009, 08:36 PM

icky, sicky (http://prayforaidan.blogspot.com/2009/03/icky-sicky.html)

I took Aidan to the doctor Wednesday. He started sounding really congested and his left ear had some drainage. The doctor said that he had an upper respiratory infection that was draining into his lungs and causing the congestion. He's been coughing and dealing with that nasty tickle in his throat. It's funny to listen to him because he is so much more vocal right now. He's trying to work that stuff up and making all kinds of noise doing it.

Another good thing is that he's been smiling a lot more. At least I've noticed him doing it more often.

Please say a prayer that he starts to feel better soon. Also, please pray that his seizures start decreasing as we go up on his seizure medication. We want them to completely go away, but it will take some time for that I'm sure. I'd just like to see some improvement so we know that we're moving in the right direction.

Hyperbaric treatments are on hold until after we get the results of Aidan's next MRI. That will be on April 2nd. Hopefully we'll be able to start back soon. We were supposed to start on the 6th. This will be his last set of 40 treatments and then we'll have to come up with the additional funding to continue more treatments. We'll have to see.... figure out where the priorities are as far as therapies go.

The thought of trying to come up with the money for stem cell therapy is daunting to me. That's a lot of money.... I've personally never had that much money, and all I can think of is that it could put a down payment on a house for our family or buy a new van. But trying to make Aidan better is just as important. It's just not something tangible, I guess.... not sure if that makes any sense.

I'm so grateful to everyone who reads this blog, who prays for Aidan and our family or keeps him in their thoughts. I'm thankful to everyone who has passed along his story. With the weather starting to get warmer here, there are going to be more and more accidents like Aidan's. I just pray that passing along his story can save some lives and make parents and caregivers more aware of the dangers of water.

Best wishes to you all! God Bless!
~Erin

osutuba

04-09-2009, 07:42 AM

feedback about another raffle idea (http://prayforaidan.blogspot.com/2009/04/feedback-about-another-raffle-idea.html)

Hi, everyone! We've had quite a few raffle entries for the custom afghan. You all have until the end of the month to enter if you'd like.

I'm playing around with a couple of ideas and thought I'd throw them out here to see if I can get some feedback. One of them would really only be useful to those fairly local or within an hour or two. A friend of ours told us about a silent auction for a customized cake and invitation package. That particular item raised a few thousand dollars, but it was also a silent auction. Basically, if I was to do something like that, I would make a cake for whatever occasion (birthday, shower, possibly wedding) and also make custom invitations/ announcements to match the theme. I do have experience in both areas, and it's something that I enjoy doing. I would be willing to deliver the cake within a reasonable distance.

The other idea was along the same lines, but it would be for personalized cookie favors or cookie bouquet (these can be shipped if necessary) and the invitation or announcements.

I'd greatly appreciate some feedback. We're coming up with other ideas, obviously not with me doing all the work, but some of the ideas are for a TV, maybe a camera, things like that. If you have any ideas we'd love to hear them.

We appreciate all of the support. By the way, Aidan's MRI was on Thursday. We haven't heard anything back from the doctor, but I'm hoping we hear from him soon. We're taking the boys today to have Easter pictures made with some live bunnies and chicks. I'm looking forward to seeing how they turn out.

I hope that everyone has a great weekend!
~Erin

osutuba

04-09-2009, 07:42 AM

some pictures from today (http://prayforaidan.blogspot.com/2009/04/some-pictures-from-today.html)

http://4.bp.blogspot.com/_8a8ZOh7n4GE/SdgFByhmFQI/AAAAAAAAATc/dpfRS-Q9Y-w/s320/IMG00029.jpg (http://4.bp.blogspot.com/_8a8ZOh7n4GE/SdgFByhmFQI/AAAAAAAAATc/dpfRS-Q9Y-w/s1600-h/IMG00029.jpg)

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SdgFBgBu30I/AAAAAAAAATU/Cq0EYtzNSXE/s320/IMG00025.jpg (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SdgFBgBu30I/AAAAAAAAATU/Cq0EYtzNSXE/s1600-h/IMG00025.jpg)

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SdgFBvWw4BI/AAAAAAAAATM/z_9iq-1Mx5U/s320/IMG00024.jpg (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SdgFBvWw4BI/AAAAAAAAATM/z_9iq-1Mx5U/s1600-h/IMG00024.jpg)

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SdgFBk3BXxI/AAAAAAAAATE/LAQMqHg78AA/s320/IMG00021.jpg (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SdgFBk3BXxI/AAAAAAAAATE/LAQMqHg78AA/s1600-h/IMG00021.jpg)
These are a couple pictures that Russell was able to get with his phone. They didn't turn out the greatest, but I thought they were cute. I completely forgot to grab my camera as we were heading out the door. Evan loved the bunny, but the bunny loved Aidan. The bunny's name was Hamilton, and he laid right down beside of Aidan and didn't move. In one of the pictures he's giving Aidan a kiss.

Before I had Aidan, I had 3 rabbits. This one was the size of the very first one I had, Cole. It almost makes me want another rabbit, but I'm not quite that sadistic. :)

Hope you enjoy the photos.
~Erin

osutuba

04-09-2009, 07:44 AM

MRI results (http://prayforaidan.blogspot.com/2009/04/mri-results.html)

Dr. C called me this morning with Aidan's MRI results. He said that the larger (older) hematoma was completely gone. But the other area, on the right side of Aidan's head is a little larger. Since we have no idea what caused the bleeds, we're going to have to go to a hematologist for some tests. Hyperbaric treatments are on hold until we have that appointment, just to be on the safe side.

I decided yesterday to set up the bounce and slide for Evan to play in since we had a swarm of wasps outside our patio and didn't want to risk him getting stung. Aidan's nurse suggested putting him in the bouncer, so we put him in. She was able to get in with him. He seemed to enjoy it. We bounced him a little and he was completely calm and relaxed the entire hour he was in there. I got a few pictures of him using the camera on my phone since the batteries died in my other camera.
http://3.bp.blogspot.com/_8a8ZOh7n4GE/SdrZwUzBU3I/AAAAAAAAAUc/SRtNuJIMws8/s320/from+phone+029.jpg (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SdrZwUzBU3I/AAAAAAAAAUc/SRtNuJIMws8/s1600-h/from+phone+029.jpg)

I had an older picture on my phone of Aidan too. I think he was smiling and I just happened to catch him with an amused look on his face.

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SdragrnX9BI/AAAAAAAAAUk/sN4Akfz0jtA/s320/from+phone+002.jpg (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SdragrnX9BI/AAAAAAAAAUk/sN4Akfz0jtA/s1600-h/from+phone+002.jpg)

Please pray that we're able to find out what is causing the bleeding in Aidan's brain, and that we're able to stop it. I also ask that you pray that we're able to control the seizures completely with his meds. Until we get those under control and get them to stop, Aidan isn't going to be able to make much more progress, especially with his head, neck and trunk control.

Thank you everyone!
~Erin

JonforOSU

04-21-2009, 05:40 PM

Good luck, prayers for Aidan's continued recovery.

osutuba

04-22-2009, 05:16 AM

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SeqFVAq2y0I/AAAAAAAAAV0/1_P4e3DlNZc/s320/4-18-09+080.JPG (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SeqFVAq2y0I/AAAAAAAAAV0/1_P4e3DlNZc/s1600-h/4-18-09+080.JPG)

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SeqFU6TGfjI/AAAAAAAAAVs/_zh5_5yHSeo/s320/4-18-09+083.JPG (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SeqFU6TGfjI/AAAAAAAAAVs/_zh5_5yHSeo/s1600-h/4-18-09+083.JPG)

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SeqEJQ4QfHI/AAAAAAAAAVk/h2RuPAFY8uQ/s320/4-18-09+072.JPG (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SeqEJQ4QfHI/AAAAAAAAAVk/h2RuPAFY8uQ/s1600-h/4-18-09+072.JPG)

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SeqEJAmwNGI/AAAAAAAAAVc/bRXIUpVRdds/s320/4-18-09+081.JPG (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SeqEJAmwNGI/AAAAAAAAAVc/bRXIUpVRdds/s1600-h/4-18-09+081.JPG)

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SeqEI-8FYOI/AAAAAAAAAVU/FMiK4waqaSY/s320/4-18-09+074.JPG (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SeqEI-8FYOI/AAAAAAAAAVU/FMiK4waqaSY/s1600-h/4-18-09+074.JPG)

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SeqEIjumHkI/AAAAAAAAAVM/P1JfMON4Fo4/s320/4-18-09+076.JPG (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SeqEIjumHkI/AAAAAAAAAVM/P1JfMON4Fo4/s1600-h/4-18-09+076.JPG)

Aidan was taken off of oxygen today and is now on room air. He's getting breathing treatments about every 4 hours and is still getting antibiotics, but they said once he was off of oxygen for 24 hours he could come home. So hopefully he'll be coming home tomorrow! These are some pictures that I took this afternoon. You can tell Aidan is feeling much better. He was actually smiling and looks and sounds much better than he has in a while.

He was even making sounds and moving his lips and tongue like he was trying to say something. My mom swears he said "mama" the other night. Sometimes he does make sounds like that, but I never know if they are intentional or not. I'd like to think he's saying "mama".

I've been pretty much a basket case lately. I cry just looking at him. I want to put Aidan in a bubble to protect him and make him better. I just miss him. I'm missing the little boy I know he would be today if he'd never had this accident. It's so hard to see other little boys around Aidan's age, and they are running and playing and doing typical 3 year old stuff. I just want to tell their parents to hold on and never let go of those memories because they're gone in a flash.

I've read too many stories lately about other children who've had near-drowning accidents who've recently died from complications. I also just learned of a family who's 2 month old slipped under the water in their bath with the parent turned away. I'm not blaming and I'm not judging, because at some point, we've all done it. The phone rings or we forgot to grab a towel or something and you turn your back for what you think is just a second.... but it's never a second. Whether it's a bath tub or a pool or a pond or a lake, or a bucket.... never leave your child alone around water. Never think that it'll just take a second or that it could never happen to you because you're not THAT kind of parent. It happened to us and it's happened to so many other good and loving families, and even worse is that it happens to innocent children who are abused.

I hate to turn this posting into this, but I just felt the need to pass along that warning. Warmer weather is here, and the number of drowning and near-drowning accidents increases. Please just be aware.

(This neurotic-mommy warning brought to you by Erin)

Back to the issue at hand, Mr. Aidan is coming home! I'm ready to have him home, sleeping in his own bed. Thank you each and every one for the prayers and the concern. I've had so many people asking me how he's doing, and I really appreciate it.

Hope you all like the pictures! :)

osutuba

04-22-2009, 05:17 AM

visit with the hematologist (http://prayforaidan.blogspot.com/2009/04/visit-with-hematologist.html)

Everything went well this morning considering that I had to take both boys. There wasn't a whole lot for the doctor to do. She went over Aidan's medical history and his medicines. We talked about the last MRI's. She was very nice, which, after Friday was not what I was expecting.

So basically, they drew some blood to run some tests. While the nurses were trying to find the vein in Aidan's little pudgy arm, he started smiling and when one of the nurses started talking to him, he looked her right in the eyes and gave her a huge grin. I'm guessing they were tickling him. The doctor also wanted us to go back to the eye doctor to have him dilate Aidan's eyes to check for any bleeding there. They were able to get us in there in the morning. So it's back to Charlotte we go tomorrow at 7:30am.

In addition to all of that, the doctor also wants to do a full body x-ray to make sure there is nothing going on that would contribute to the bleeding. I'm not exactly sure how all of this is correlated to him having a bleed in his brain, but what do I know!? If the blood work comes back normal then they will run more tests to rule out the "rare" diseases that could cause this.

So, I'm praying that we find out what is causing the bleed with this first battery of testing. I certainly don't want him to have some rare disease that is the culprit. I can honestly say that I can't take any more surprises. I know the Lord only gives us what we can handle, so I'm letting him know in advance that I'm full to brimming with all I can take at this point.

In contrast to all the not so great stuff going on, Aidan has been amazingly alert since he's started feeling better. He is making more eye contact and is smiling more than I've seen since he first smiled at us.

So, that is what happened today. I will post an update tomorrow after the visit with the eye doctor. Please pray that the doctors are able to find out what is going on. I had a dream about Aidan this afternoon after we got back when Evan decided that it was nap time. He was doing much better in the dream and was showing me just what his temper and personality were like before the accident. He wasn't completely better, but he was getting there. I hope it's a sign of what's to come. I'll take Aidan at his worst if it means he can be normal one day.

~Erin

legelegel

04-22-2009, 08:25 AM

I just would like to tell you that I read what you write. That thoughts of your son and your family are with me almost daily. I pray for your every wish. I know it is hard, but you know you have to stop beating yourself up.

My mother did that for a long time after my 9 month old sister was burned with hot water over her legs. That accident too happen so quickly and was so very innocent. We almost lost her. I was 14 that day, and I still have bad memories of it. I was a zombie especially that first day. I remember exactly what I did the remainder of that day. What I'm trying to say to you is that memory of what happen will probably never go away, but you have to let the guilt go. Please begin to try very hard to do this.

osutuba

04-22-2009, 08:34 AM

legelegel

04-22-2009, 08:44 AM

I am sure you understand that things are still very raw, even a year later. We have our good days and our bad days. There a lot of things I am still trying to get past and deal with. Erin and I are both looking at going to counseling; I think it will help us a lot.

I do understand as much as I can being on the outside of all that you have experienced. The mental health of both of you is important too.

osutuba

04-22-2009, 09:01 AM

I do understand as much as I can being on the outside of all that you have experienced. The mental health of both of you is important too.
We greatly appreciate it!

JonforOSU

07-15-2009, 06:03 PM

How are things going with Aidan?

osutuba

07-16-2009, 05:46 PM

Sorry for not posting updates to here. Wasn't sure how many were reading on here and how many were actually visiting the blog.

He's been doing well. He's been smiling more and started moving his feet some, mostly in reaction to stimulus (i.e., tickling).

We ended up stopping hyperbarics. I won't go into it all here; I'm afraid I'll get too upset about it. Let's just say it was a bad deal all around.

JonforOSU

08-03-2009, 08:50 AM

Man, sorry about that. Glad he's getting better and progressing. Continued prayers for your family and Aidan.

osutuba

08-03-2009, 11:14 AM

Man, sorry about that. Glad he's getting better and progressing. Continued prayers for your family and Aidan.
Thanks! I wish there was a way we could push the RSS Feed of the blog straight to this post. Annie, can you look into that and let me know what, if anything, you need from me to make it happen? I have been really absent-minded lately and I keep forgetting to post things on here after I post them to the blog :(

JonforOSU

08-04-2009, 06:34 PM

No worries man. Just checking in.

osutuba

08-19-2009, 09:45 AM

sorry for the hiatus everyone! (http://prayforaidan.blogspot.com/2009/08/sorry-for-hiatus-everyone.html)

Okay, I took a hiatus from blogging for a while. With dealing with Aidan's bouts of tummy aches and crying for days on end, I just didn't feel like sounding like a broken record.

This past Wednesday was Aidan's last day of pre-school for the summer. They had a little luau party for the kids and their families, but unfortunately, we didn't get to stay for it. I had an appointment that afternoon for myself, but our doctor wanted to go ahead and see Aidan since he was still having stomach issues and had been crying for several days again.

When I got him there his little tummy was just all gassed up and he was miserable. The pain comes and goes, so we have to try position changes and burp him through the g-tube. He finally settled down with me cuddling him in my lap. The doctor had me start giving him bean-o at every feeding and we added baclofen to his medications.

Aidan was on much higher doses of baclofen when he was in the hospital right after the accident. It helps with spastic muscles, and in low doses seems to help his stomach cramping and pain. We'll see how long the "calm" lasts this time. I'm hoping permanently, as far as the gas and cramping go. We're still having to deal with the GERD issues as well.

Aidan has an appointment with the GI doctor at the end of the month and I plan on asking him about doing a scope to see if there is any damage or ulcers because of the acid reflux that are also causing pain. We've put off doing the Nissen surgery for a year now, and I was hoping we would never have to do it, but I don't think we'll be able to hold off on it forever. The Nissen is like putting a band at the top of the stomach to restrict the acid from coming back up in the the esophagus. There are good things about it and bad things. The bad thing is that it doesn't "grow" with the child and can cause problems down the road. We'll just have to keep an eye on things and see how Aidan continues to do.

Other than that, not much else is going on with Aidan. He got some new AFO's that work so much better than his old ones. He can tolerate wearing them much, much longer which is so much more beneficial to him. School starts back the 2nd of September. Aidan really seems to enjoy school and being around other children and his teachers. They are all so good with him.

Some additional news... We found out last Tuesday that we're expecting another baby! That is why I was going to the doctor myself on Wed. This was a surprise to say the least, but we're happy if not a little shocked still. It's more and more evident to me that God has other plans in store for us and that I know nothing as far as planning my life. :) As terrified as I am at trying to take care of a newborn and Aidan with his needs and Evan getting into anything and everything, we'll find a way to make it work. It'll just be a circus at our house for a while.

Lastly, I'd like to thank Brett and Leslie for holding the August raffle for us. Brett does some amazing artwork. We hope that everyone who can will buy a ticket or two to help out and try to win some custom artwork. Thank you to those who have bought tickets already, we greatly appreciate your support!

Thanks again everyone! Night!
~Erin

osutuba

08-19-2009, 09:47 AM

http://3.bp.blogspot.com/_8a8ZOh7n4GE/Soje-9Xlf3I/AAAAAAAAAgw/9oRWxrxA13A/s200/DSCN0071.JPG (http://3.bp.blogspot.com/_8a8ZOh7n4GE/Soje-9Xlf3I/AAAAAAAAAgw/9oRWxrxA13A/s1600-h/DSCN0071.JPG)
some smiles after the previous 3 or 4 day bout of crying and tummy aches

http://3.bp.blogspot.com/_8a8ZOh7n4GE/Soje-kPWqHI/AAAAAAAAAgo/anHskCyRjfc/s200/DSCN0068.JPG (http://3.bp.blogspot.com/_8a8ZOh7n4GE/Soje-kPWqHI/AAAAAAAAAgo/anHskCyRjfc/s1600-h/DSCN0068.JPG)
hanging out with Evan on the couch

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SojdemR5TkI/AAAAAAAAAgg/JisgTmcOQyY/s200/DSCN0066.JPG (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SojdemR5TkI/AAAAAAAAAgg/JisgTmcOQyY/s1600-h/DSCN0066.JPG)

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SojdeSnVL2I/AAAAAAAAAgY/kGZp5VTKVZc/s200/DSCN3821.JPG (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SojdeSnVL2I/AAAAAAAAAgY/kGZp5VTKVZc/s1600-h/DSCN3821.JPG)

http://3.bp.blogspot.com/_8a8ZOh7n4GE/Sojdd7W5awI/AAAAAAAAAgQ/HLIQMlExoaU/s200/DSCN3820.JPG (http://3.bp.blogspot.com/_8a8ZOh7n4GE/Sojdd7W5awI/AAAAAAAAAgQ/HLIQMlExoaU/s1600-h/DSCN3820.JPG)

http://4.bp.blogspot.com/_8a8ZOh7n4GE/SojddmgDr-I/AAAAAAAAAgI/GsqEuAEuN_I/s200/DSCN3816.JPG (http://4.bp.blogspot.com/_8a8ZOh7n4GE/SojddmgDr-I/AAAAAAAAAgI/GsqEuAEuN_I/s1600-h/DSCN3816.JPG)
snoozing after getting some new meds

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SojddHm6U-I/AAAAAAAAAgA/rbZ9KTpVwWM/s200/DSCN3815.JPG (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SojddHm6U-I/AAAAAAAAAgA/rbZ9KTpVwWM/s1600-h/DSCN3815.JPG)
Aidan and his teacher, Ms. Melanie (yes, he was a bit upset that day :()

osutuba

08-19-2009, 09:51 AM

Aidan's teacher gave me a CD with some pictures they'd taken of him since he started school. There weren't a whole lot because he started at the very end of February and then had several illnesses that kept him out of school. But I thought I'd share some of the pictures with everyone. Aidan really likes being at school. It actually made me cry a little to see these pictures. He's growing so fast and I feel like I'm missing out on so much with him. Before his accident, I looked forward to the day that he would be able to talk to me and tell me about his day, but no matter what, Aidan could always make me laugh. Evan is exactly the same way, he's usually always happy, and he makes me laugh.

Anyway, I'm not going to cry... I won't. So here are the pictures-

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooECyjzKOI/AAAAAAAAAiA/wH98Bt1pFAw/s320/end+of+year+pics+265.jpg (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooECyjzKOI/AAAAAAAAAiA/wH98Bt1pFAw/s1600-h/end+of+year+pics+265.jpg)
last day of the regular school year

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SooECjm3ePI/AAAAAAAAAh4/yqp2Xs_1XP8/s320/end+of+year+pics+037.jpg (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SooECjm3ePI/AAAAAAAAAh4/yqp2Xs_1XP8/s1600-h/end+of+year+pics+037.jpg)
looking at a light box- part of his visual therapy

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SooECFZRhfI/AAAAAAAAAhw/Bk2jbH9vah0/s320/end+of+year+pics+156.jpg (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SooECFZRhfI/AAAAAAAAAhw/Bk2jbH9vah0/s1600-h/end+of+year+pics+156.jpg)
little "cool dude" in his sun glasses. :)

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooEB2Tz15I/AAAAAAAAAho/7rL2y8A8knQ/s320/end+of+year+pics+030.jpg (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooEB2Tz15I/AAAAAAAAAho/7rL2y8A8knQ/s1600-h/end+of+year+pics+030.jpg)
finger painting

http://4.bp.blogspot.com/_8a8ZOh7n4GE/SooEBZLuxEI/AAAAAAAAAhg/vi0s7OcY9hU/s320/end+of+year+pics+026.jpg (http://4.bp.blogspot.com/_8a8ZOh7n4GE/SooEBZLuxEI/AAAAAAAAAhg/vi0s7OcY9hU/s1600-h/end+of+year+pics+026.jpg)

http://2.bp.blogspot.com/_8a8ZOh7n4GE/SooAcWyIZiI/AAAAAAAAAhY/9V9j7Z_wYCo/s320/end+of+year+pics+025.jpg (http://2.bp.blogspot.com/_8a8ZOh7n4GE/SooAcWyIZiI/AAAAAAAAAhY/9V9j7Z_wYCo/s1600-h/end+of+year+pics+025.jpg)
more visual therapy

http://1.bp.blogspot.com/_8a8ZOh7n4GE/SooAb46phkI/AAAAAAAAAhQ/Y2wHyAC5PdE/s320/end+of+year+pics+004.jpg (http://1.bp.blogspot.com/_8a8ZOh7n4GE/SooAb46phkI/AAAAAAAAAhQ/Y2wHyAC5PdE/s1600-h/end+of+year+pics+004.jpg)
riding in the wagon- he really likes this

http://4.bp.blogspot.com/_8a8ZOh7n4GE/SooAbQ9e93I/AAAAAAAAAhI/UooHqQ_ZaFI/s320/end+of+year+pics+003.jpg (http://4.bp.blogspot.com/_8a8ZOh7n4GE/SooAbQ9e93I/AAAAAAAAAhI/UooHqQ_ZaFI/s1600-h/end+of+year+pics+003.jpg)
the "torture device"- aka, the stander. actually he does well in the stander and will tolerate it for up to an hour at home.

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooAa24PicI/AAAAAAAAAhA/WsapcshBfy8/s320/aidan_firetruck.jpg (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooAa24PicI/AAAAAAAAAhA/WsapcshBfy8/s1600-h/aidan_firetruck.jpg)
this is the day the fire department brought out the truck for the kids. They like to expose them to different textures and sounds.

http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooAag4YamI/AAAAAAAAAg4/7EWtN9SN_gk/s320/aidan_elmo.jpg (http://3.bp.blogspot.com/_8a8ZOh7n4GE/SooAag4YamI/AAAAAAAAAg4/7EWtN9SN_gk/s1600-h/aidan_elmo.jpg)
The "Chicken Dance" Elmo. Aidan loved this thing. We've got to find him one. The other little boy would push a switch and make Elmo dance and Aidan would smile and laugh. It's hard to see, but he IS smiling in this picture.

Hope you all like these.

Verb

08-24-2009, 09:17 AM

These pictures are precious, and you CAN see the smile on his face in that last one!

Have you looked on eBay for that chicken dance toy? I will keep my eye out for it when I'm perusing.

(Sorry I'm late--was on vacation when you posted these.)

osutuba

08-28-2009, 10:34 AM

Erick

10-08-2009, 02:57 PM

The last picture really is great. Sweet smile.

osutuba

10-17-2009, 04:41 AM

So, it has been a while since I've actually posted on here and I apologize. When things are going well with Aidan time just passes quickly, and thank goodness things have been going well! Aidan is doing great. He's doing great at school now that we've rescheduled one med that was making him sleepy during the day. We had tried to wean him off of his daily dose of Clonidine which helps with the storming symptoms, like the posturing and tight muscles and stuff, but it became very apparent that weaning him off was not going to work. Although Aidan was alert and smiling and laughing at school he was doing a lot of posturing and by the time I was picking him up from school it was so bad that he would start crying because he was in pain.

We've put him back on the medicine and have changed the times he gets it so that he's awake and alert at school, and they've been telling me that he's smiling and laughing a lot. There is a girl from one of the local high schools who comes in to talk to Aidan and he always smiles at her. In fact, Aidan is just a big flirt in general. He always has been.

I've started realizing that even though Aidan might not be able to do the same things he used to be able to do, and he might not be able to do the same things as most kids his age, he's still Aidan. He still loves his bananas, even if they are in pureed form, and he loves applesauce and he still likes the Wonder Pets and will turn his head toward the tv when they come on.

We started outpatient physical therapy this week, and I am hopeful that Aidan will be able to make some progress. The therapist had him in all kinds of positions and he tolerated the movement and the position changes like a champ. Earlier on, he wouldn't have handled them well. I think one of our main goals is to work on Aidan's head control or just getting him to engage those muscles to lift his head some. Right now, he has no head control at all... as far as lifting his head up and holding it upright. Just imagine a rag-doll. He can move his head from side to side, but those are using an entirely different set of muscles.

Anyway, that's what is going on here. We're all doing pretty well. We're hoping to have some big fundraisers early next year, but we'll post more about that when the details are ironed out. Evan is doing well, and baby #3 is growing well. I have an appointment next week and will be 16 weeks at that point so we're hoping to find out if the boys will have a little brother or sister soon. (I'm hoping for a girl, but we'll be happy with either, of course.... but I'm outnumbered here!)

On a final note, I wanted to add a video that one of the mom's on our parent's of near-drowns group made for the HUGS Foundation (http://www.hugs4ndc.com). There are 2 pictures of Aidan in it (at 0:11 and 1:54), but it is wonderfully put together and shows children of all ages and progress levels of dealing with near-drowning. Thanks for putting the video together, Julie!

~Erin

http://www.youtube.com/watch?v=QCvrG8TqOmE&feature=player_embedded

AnniePokely

10-18-2009, 09:00 AM

osutuba

10-18-2009, 04:20 PM

I knew I shouldn't watch that video. Yep, I cried. That song...Wow.

I'm so glad Aidan is doing well in school, and I'm glad he's laughing and smiling. Keep on keeping on Erin and Russ. You're always in my prayers.
I had a tough time watching it, too. I didn't even think of that particular song in that way until that moment. That now makes *4* songs I have a hard time listening to.

As always, we appreciate the support and prayers :)

osutuba

01-23-2010, 03:23 PM

There are times it seems we live in a bubble. In this bubble, the only people we have contact with are our friends, family, and co-workers. Yeah, we make chance connections with the mailman, the guy at the convenience store, or the drive-thru attendant at the bank; those are fleeting moments and usually have little meaning. Then, you have a moment where you feel truly moved by what one of those "chance encounters" do or say. This is the story of such a connection

About a week ago, I was on my way home from work. It had been an eventful day, and I was ready to be home. Unforunately, my sweet tooth was screaming at me. Fortunately, there was a drive-thru place offering 99 cent shakes, so both my sweet tooth and my wallet cheered simultaneously. I am sure there would have been a kegger held had I not been driving, they were that happy.*

* NOTE: Please don't drink and drive. And definitely do not hold a kegger in the back of your SUV, no matter how valid the reason for said kegger may be.

I pulled around and placed my order, thinking this was going to be another one of my random "chance encounters". As I pulled up and gave the girl my bank card, she glanced at the magnet on my rear driver side door. Erin had one made for each of our cars at VistaPrint and I have had it on my car ever since we got them.

http://2.bp.blogspot.com/_MDoagynrG-Y/S1oqHd0gW8I/AAAAAAAAAEg/-4Q75OM--Fg/s320/prayforaidandoor.jpg

"I've been to that site", she said in a friendly tone (bolded emphasis mine).

In the approximate one second of stunned silence that occurred, this went on in my head:

IMAGINARY VOICE 1
DUDE! Who is this?

IMAGINARY VOICE 2
Who cares? Did you hear what she said?!

IMAGINARY VOICE 3
Did you ever think you should quit listening to yourself creating some kind of creative dialogue and come up with something to say back to her?

After that second of stunned silence, I finally come up with something:

Me (to Drive-Thru Girl)
Yeah, that's my son.

Drive-Thru Girl (to Me)
It's so sad ...

DRIVE-THRU GIRL hands ME my shake and I drive off, at which point I hear in my head:

IMAGINARY VOICES 1, 2, AND 3:
Lame.

As I drove off, though, I had a moment of discovery:

There are a lot of people who read this blog.

There are the friends and family scattered throughout the world who follow so closely that they ask me if everything is OK if a recent update has not been posted.

There are the people, both known and unknown, who have read and offered to help through giving of finances, prayers, well-wishes, and support.

There are the friends who read and, even though they don't post public comments, they assure me privately that our family is in their daily thoughts and prayers.

And then, there are the "chance encounters" ... like a friendly drive-thru girl who was kind enough to mention that you read this blog as you handed me my 99 cent chocolate shake.

As much as I enjoy knowing all of you, it was that final moment where my heart cheered loud enough to make my sweet tooth and wallet jealous for the rest of the drive home.

So, let me take the opportunity to say to the friendly Drive-Thru girl at the Cookout on Bruton Smith Blvd. in Concord, NC, along with everyone else out there, a sincere "Thank You" for reading. You are appreciated.

~Russell

osutuba

01-23-2010, 06:16 PM

Erin took Aidan this afternoon to have his pictures made. Her friend, Amanda, did an awesome job on them! These are just a few that she got posted on Facebook.

http://1.bp.blogspot.com/_8a8ZOh7n4GE/S1uXPkIZLuI/AAAAAAAAAms/FHCM0YMUB5k/s320/17547_269783577866_174255097866_3267116_3449596_n. jpg

http://1.bp.blogspot.com/_8a8ZOh7n4GE/S1uW-ZUa8EI/AAAAAAAAAmk/cm83yeLbsvg/s320/17547_269783542866_174255097866_3267113_1068190_n. jpg

http://4.bp.blogspot.com/_8a8ZOh7n4GE/S1uW98yzfsI/AAAAAAAAAmc/bAgu3_31HTU/s320/17547_269783557866_174255097866_3267114_1800422_n. jpg

http://3.bp.blogspot.com/_8a8ZOh7n4GE/S1uW9qs3TnI/AAAAAAAAAmU/z6wGC7QN7s8/s320/17547_269783562866_174255097866_3267115_2775655_n. jpg

http://4.bp.blogspot.com/_8a8ZOh7n4GE/S1uW9bBRclI/AAAAAAAAAmM/cfEFa6NWFsk/s320/17547_269783582866_174255097866_3267117_5703987_n. jpg

http://3.bp.blogspot.com/_8a8ZOh7n4GE/S1uW9EBhNpI/AAAAAAAAAmE/yvFlHwuMJVY/s320/17547_269783537866_174255097866_3267112_102708_n.j pg

barryrules

01-23-2010, 08:02 PM

Thanks for the photos - he has really grown since last time I looked at pictures.

God Bless all of you!

osutuba

02-04-2010, 03:42 AM

You are most welcome!

By the way, PrayForAidan.com is undergoing a complete redesign and should go live this weekend, barring any unforseen circumstances. This was thanks to two generous individuals who donated us web space, bandwidth, and consulting services.

This will feature a new blog, as well as multiple pages of other information. We plan to make this a double resource: one for people to continue tracking Aidan's progress, and another to provide information, links to information, and prevention/awareness tips.

I may have a "beta test" this weekend to check for bugs, broken links, etc. I'll post more information about that once I have more details.

osutuba

02-08-2010, 05:20 AM

OK, the new site is up and running. It is still a work in progress, though, so you will want to check back often to see what we are doing with it :)

osutuba

02-18-2010, 05:17 AM

So today is the 2 year anniversary of the accident. Getting to this point has been a long, painful journey. Aidan has made a lot of progress in these last 2 years, and hopefully he will continue to make more progress in the years to come.

My baby isn't really a baby any longer. Physically, he's grown so much since that day. I look back at his pictures and he looked so little then. I look at his clothes that he wore that day and it's hard to remember him being so small.

We read about so many other kids who had near-drowning accidents and some are in worse condition than Aidan and some are lucky enough to not have any negative outcome. Aidan is here for a reason- he has a purpose in this life and that is why he is still here. We very well could have lost him forever.

There were days when he was in the hospital that I thought he would be better off if he didn't have to struggle and hurt and fight the way he was having to, but I learned that I had to put everything in God's hands and that He would take care of Aidan and us. There is nothing worse than watching your baby fight to live.

I just want to say that I am so very grateful and thankful to the first responders who showed up so quickly, to the ER staff and doctors who worked so hard to revive Aidan and to the PICU staff who took such wonderful care of Aidan. They are all angels in my book. I will never be able to thank my mother enough for being able to do what I couldn't. She put aside all emotion of seeing Aidan like that and her skills as a nurse took over and she was able to do CPR on Aidan. I couldn't even make it to him and I sure wouldn't have been able to think clearly even if I had.

So anyway, even though I mourn the loss of the Aidan that we once had- the happy, laid back, loving, energetic, strong willed little boy- I know that we are so very Blessed to have Aidan in our lives now. There are still little flickers of that "life" in there and he is still definitely strong-willed. We all have so much to learn from him and one day he's going to surprise us all. I have faith that he's going to do amazing things one day. I just can't wait to watch them happen.

Thank you to each and every one of you who have read this blog. To those of you have read from the very beginning and have prayed for us and supported us along the way. It is your strength, faith and prayers that have helped get us to this point. And even though most of you are perfect strangers to us, we love you all, and we consider you our friends.

Without the help, love and support of our family and friends, I don't know where we'd be, so thank you, everyone! Thank you for loving and caring about our sweet baby, Aidan. I know that he is constantly surrounded in love and protected by angels.

~Erin

osutuba

02-22-2010, 07:19 AM

For the past few days at school, Aidan's teachers have been working with him to use a new switch. This is one that he can activate with his chin by opening his mouth. They hooked it up to a singing/dancing Spider Man doll and when Aidan opens his mouth it activates the toy. For the past few days Aidan has been doing this on his own (like 10-15 times in a row) with just some verbal prompting. And he knows what he is doing because he smiles when the doll starts to sing and dance.

Aidan has come so far, and he completely amazes me at his strength and determination. There are days I wish I could get inside that head of his and know just what he sees and what he understands about what is going on around him. He is very alert and aware of where he is and the people around him. If there are a lot of people around him that he doesn't know or if it is loud he will shut his eyes and basically tune everyone out by pretending to be asleep and then as soon as the commotion dies down, his little eyes pop open like he's asking "is the coast clear?". It is so funny to watch.

Sunday is Aidan's 4th birthday. We are having a party for him at my mom's house. It will basically be just family and a few friends. I will be sure to post pictures for everyone to see, especially for our family that can't be here. We would love to share the day with everyone. Even though Aidan's accident happened on the day of his party, I don't ever want to let that keep me from celebrating his birth and his life. Russell and I were so blessed to ever have children, especially after I was told I probably never would. God had other plans and he sent Aidan to us. We had almost 2 wonderful years with him as a happy, funny, energetic little boy who loved to get into anything and everything, and those 2 years are the most precious to me. The memories that I have of Aidan playing and laughing, smiling and just being himself are priceless and bittersweet.

As I said the other day, I mourn the loss of that little boy, but I thank God for the second chance I have with Aidan. And even though I don't know that I'll ever understand why this had to happen to Aidan, I have to trust that God knows better and has plans for Aidan. It's just that my plans for my baby and God's don't see eye to eye most of the time or I want answers and results now.... not days, weeks, months or years down the road.

Thank you everyone for your continued support and prayers. I look forward to posting more about Aidan's progress.

~Erin

JonforOSU

02-23-2010, 05:27 PM

Gosh Erin, that update just makes my heart so happy for you and Russ. I hope that you all have a wonderful day for his birthday. Continued prayers for the little guy, you and Russ.

Happy BIRTHDAY ADIAN!!!

cactusjack

02-27-2010, 06:39 AM

Happy Birthday Aidan!

God's blessings on you guys!

osutuba

03-01-2010, 05:35 AM

Thanks guys! Aidan had a great birthday. :)

Verb

03-01-2010, 09:46 AM

Thanks guys! Aidan had a great birthday. :)

Photos, please!

osutuba

03-01-2010, 10:53 AM

I'll have to see if Erin has them yet. We really didn't take as many as we usually do.

osutuba

03-04-2010, 05:43 AM

Aidan turned 4 on the 21st. We had a small family party for him at my mom's house. He seemed to enjoy the attention and was awake and alert the entire time. We actually had some nice weather so we were able to take him outside for a little while and he even got a little taste of icing from his cake. (He then proceeded to bite my finger, trying to get more!)

I apologize for not posting these sooner for those of you who do not follow us on Facebook. Here are a few pictures that I managed to get. Just click on the link!

http://www.facebook.com/#!/album.php?aid=196741&id=707702024 (If you don't have FaceBook, worry not ... I'll get pictures posted when I get home from work today)

Our little man is definitely getting bigger! He still weighs around 50-53 pounds and he is 40 3/4 inches long now. I took him to see his neurologist yesterday and we had to go up on his seizure medication. We're also supposed to be scheduled for an EEG and MRI soon because Aidan has been having an increased amount of seizures. For a while there, we were only seeing one once in a while, and they've gradually increased. He is now having multiple seizures a day, so many that I can't even keep track of them. A lot of times he's having them when we aren't paying attention or he doesn't have an outward appearance of having one. I'm just praying that there are no negative changes in his MRI from last year.

We started the G-therapy on Sunday morning. I really hope that we see something with this. I don't really know what to expect or look for, so we'll just see if he starts doing anything different, if he's more alert and aware or if he seems to be seeing more.

As for the rest of us, we're doing well. We're in the home stretch of the baby's arrival. I have an appointment tomorrow and I'm hoping that we will be able to schedule my c-section then. We're aiming for March 25th, but I've been told the 25th, 26th or 27th would be when they would do it.

Thank you all for your prayers for Aidan and our family. I ask that you say a prayer that we are able to get our van fixed or that somehow we're able to get a new van in the near future. We have to have 2 vehicles because Russell works so far away, and the van is our only means of transporting Aidan's wheelchair. The engine has been overheating; there is no heat at all inside, and this has been a very cold winter here in NC.; there are also numerous other things that need to be fixed. We just can't afford to get it fixed right now.

Thank you all again, and I hope that you enjoy the photos from Aidan's birthday party. :)

~Erin

osutuba

03-28-2010, 07:02 PM

Ladies and Gentlemen, I have been informed of a new benefit that has been organized for Aidan!

http://www.deathandtaxesmusic.net/images/128467356_l.jpg

Death and Taxes (http://www.deathandtaxesmusic.net), an independent rock band based out of LA [that's Los Angeles, not Louisiana ;-)], is releasing their first studio album, called Inevitable, on April 15th. They have agreed to donate $1 from every album purchase (digital and CD) to Aidan's NTAF account. They have also informed me that they hope to work something out as well with the purchase of singles when they become available. I will pass along more information about that when it becomes available.

CDs are currently available on pre-order for $9.99. If you purchase a CD between now and when the CD is released April 15, the band will autograph it for you. Click here (http://www.deathandtaxesmusic.net/preorder.html) to place your order now! Click here (http://www.reverbnation.com/deathandtaxes) if you would like to listen to a few of their songs before you place your order.

Here are a few other links related to the band:

Band's Facebook page (http://www.facebook.com/pages/Official-Death-and-Taxes-Band-Page/10150109591980467?ref=mf)
Band's MySpace page (http://www.myspace.com/deathntaxes)
Band's Twitter page (http://www.twitter.com/deathtaxes)
Jay Link (lead singer)'s Twitter page (http://www.twitter.com/JayLink_)

I hope you will make a purchase and thank Jay for this wonderful and generous gesture!

~Russell

osutuba

07-07-2010, 09:28 PM

This month, thanks to another very gracious donation, we are having another raffle! Betsy Ross Linens (http://www.betsyrosslinens.com/) is donating three different prize sets or her incredible fabric work.
Here is what Betsy Ross Linens is donating:

GRAND PRIZE
http://2.bp.blogspot.com/_KKuG0mhN6fQ/TBqFfuS7u1I/AAAAAAAAB8M/MauXnEEUYIg/s400/Raffle+Prize+tall.JPG (http://2.bp.blogspot.com/_KKuG0mhN6fQ/TBqFfuS7u1I/AAAAAAAAB8M/MauXnEEUYIg/s1600/Raffle+Prize+tall.JPG)
The Grand Prize has a total value of $263.00 and consists of:

1 Fleece & Patchwork Flannel Baby Throw Blanket ~ Value $75.00
1 Fleece & White Panne Throw Blanket ~ Value $45.00
1 One-of-a-kind Market Bag with liner and metal feet ~ Value $54.00
1 One-of-a-kind Market Bag Euro with liner and metal feet ~ Value $54.00
1 Standard Hot/Cold Pack ~ Value $27.00
1 Mini Hot/Cold Pack ~ Value $8.00

Below are some close-ups in the items in this package:

GRAND PRIZE ITEMS
BLANKETS
http://3.bp.blogspot.com/_KKuG0mhN6fQ/TCfjCR_A34I/AAAAAAAAB8k/_ed_1IptRoU/s400/Blankets+Prize.JPG (http://3.bp.blogspot.com/_KKuG0mhN6fQ/TCfjCR_A34I/AAAAAAAAB8k/_ed_1IptRoU/s1600/Blankets+Prize.JPG)
The blanket on the left is a polar fleece and white panne throw. It measures approximately 45 inches x 59 inches. The panne has a nice sheen to it. It's very soft and machine washable. (You can choose another color only if it's in stock and ready to ship.) The blanket on the right is a polar fleece and flannel patchwork baby throw. It measures approximately 45 inches by 59 inches. This blanket is also machine washable.

MARKET BAG
http://3.bp.blogspot.com/_KKuG0mhN6fQ/TCflVulnyQI/AAAAAAAAB80/PsJrU0aNgTw/s400/Mkt+Bag+Prize+Regular.JPG (http://3.bp.blogspot.com/_KKuG0mhN6fQ/TCflVulnyQI/AAAAAAAAB80/PsJrU0aNgTw/s1600/Mkt+Bag+Prize+Regular.JPG)
This is a one-of-a-kind Market Bag. This bag is a versatile, all-around shopping bag designed around a paper grocery sack. It stands up like a paper sack and folds up just like it, too. It's made of heavy canvas hand bonded to a 100% cotton print. It measures 14 inches tall, 12 inches wide and 7 inches deep and comes standard with a magnetic snap closure. This bag has the added bonus of a muslin liner, metal feet and matching fabric straps.

MARKET BAG EUROhttp://2.bp.blogspot.com/_KKuG0mhN6fQ/TCfo8dO7hYI/AAAAAAAAB88/Uy_wJqqjT_I/s400/Geisha+Vibrant+Euro+Bag.JPG (http://2.bp.blogspot.com/_KKuG0mhN6fQ/TCfo8dO7hYI/AAAAAAAAB88/Uy_wJqqjT_I/s1600/Geisha+Vibrant+Euro+Bag.JPG)
This is the new addition to the Market Bag Line, the Market Bag Euro. The bag pictured is a one-of-a-kind Market Bag Euro. It is constructed exactly like the regular Market Bag except its in a different shape and slightly larger. It measures approximately 15 1/2 inches wide, 12 inches tall and 6 inches deep and comes standard with a muslin liner and magnetic snap closure. This bag has the added bonus of metal feet and matching fabric straps.

HOT/COLD PACKS
http://4.bp.blogspot.com/_KKuG0mhN6fQ/TCfq8Plel1I/AAAAAAAAB9E/lEEPqf5UeSI/s400/H:C+Packs+Prize.JPG (http://4.bp.blogspot.com/_KKuG0mhN6fQ/TCfq8Plel1I/AAAAAAAAB9E/lEEPqf5UeSI/s1600/H:C+Packs+Prize.JPG)
Betsy: I've been told by satisfied customers that my Hot/Cold Packs are best packs they've found anywhere.

They can be heated in the microwave or put in the freezer for heat or cold. They are made from 100% cotton prints with a special blend of lavender flowers, peppermint leaves, rice and flax seed. The standard pack measures 8 inches wide by 24 inches long. The Mini Pack measures 4 inches wide by 12 inches long.

SECOND PRIZE

Second Prize is your choice of either a Market Bag or Market Bag Euro with metal feet, liner and matching fabric straps in the cotton fabric of your choice. Her cotton page (http://s170.photobucket.com/albums/u280/BetsyRossLinens/COTTONS/?start=all) has the available fabrics will will be able to choose from.

Value: $54.00

THIRD PRIZE

Third Prize is a Standard Hot/Cold Pack and Mini Hot/Cold Pack in the cotton fabric of your choice. Her cotton page (http://s170.photobucket.com/albums/u280/BetsyRossLinens/COTTONS/?start=all) has the available fabrics will will be able to choose from.

Value: $35.00

For those of you who are not familiar with Betsy's work, you can read what people are saying about her Hot/Cold Packs, Market Bag Line and throw blankets here (http://sprocket-sewing.blogspot.com/2009/10/what-people-are-saying-about-betsy-ross.html).

You will be able to purchase as many chances to win as you want, but only one prize per person. A single entry will cost $5.00, three tickets for $10.00, five tickets for $15, or seven tickets for $20.00. You can buy your chances by going to the PrayForAidan.com Store (http://www.prayforaidan.com/store.htm). The Raffle starts at 12 am EST on July 1st and ends at 12 am PST on July 31st. The winners will be chosen a few days later and notified by E-Mail.

Again, our sincere thanks to Betsy for doing this. Good Luck!!!!

osutuba

10-14-2010, 09:15 PM

I'm sorry for not posting, all! It is just really hard to keep up with everyone everywhere; however, I have GOT to post this!

Please watch and comment within the YouTube post ... Thanks!

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

Verb

10-14-2010, 11:07 PM

Russell, that just took my breath away. That is huge progress for Aidan. I got tears in my eyes watching it!

andyokstate

10-15-2010, 08:08 AM

He looks very determined! Way to go, Aidan!

osutuba

02-16-2011, 05:59 AM

We had Aidan's 5 year old pictures taken this past weekend by my friend Amanda (Amanda Tyler Photography). She did an awesome job, as always, so I wanted to share a few pictures that she's posted for us as a sneak peek!

http://1.bp.blogspot.com/-jexSMt2hpyQ/TVnH3cPsIII/AAAAAAAAA3U/6w4tYZjoHF8/s1600/181708_111395032269263_100001963004878_90009_29843 15_n.jpg

http://1.bp.blogspot.com/-fPZcrBpTENQ/TVnH3f-0usI/AAAAAAAAA3M/wVxt9WlHMn8/s1600/180698_111740015568098_100001963004878_93460_29424 7_n.jpg

http://3.bp.blogspot.com/-DSJU0HQdKqI/TVnH3Pt7SRI/AAAAAAAAA3E/zA5HEh74wDE/s1600/180422_111739988901434_100001963004878_93459_32775 28_n.jpg

Aidan isn't feeling well today. He's congested and having a hard time breathing and he's had a fever since early this afternoon. We've been giving him some extra breathing and VEST treatments and he's on oxygen so he's not having to work so hard to breathe. Russell or I will get up early in the morning and take him to the doctor so they can hopefully figure out what's going on and get him started on some medicine to make him feel better. (UPDATE: The doc thought he had the flu, so we are keeping him home for the rest of the week and giving him Tamiflu and another medication to help him beat it.)

Wednesday will be the 3 year anniversary of the accident, but I will post another blog then. Please say a prayer that Aidan gets better soon. Also please add Caleb, Luke, Santana and Samuel to your prayers as well. Caleb isn't doing very well and was admitted the the PICU today with a collapsed lung and is on a vent. Luke and Samuel have had pneumonia and Santana has also been sick and is still recuperating from having surgery back around the holidays. There are links for all of their pages on the side of our blog. Please visit them if you have a chance. They are all very special little boys.

Thanks so much! As always, we appreciate your support, love and prayers!

osutuba

02-16-2011, 05:59 AM

Aidan's Facebook Page: http://www.facebook.com/prayforaidan (It's a fan page, but we post updates there and our blog cross-posts to that page)

Erick

03-07-2011, 10:40 AM

God bless Aidan. He is and will continue to be in my prayers.

osutuba

03-15-2011, 01:48 PM

Aidan Wright was your typical toddler: curious, inquisitive, playful, and fun. He loved to play with his toys and give hugs and kisses to everyone he met. He literally didn’t know a stranger. All that changed on February 16, 2008 when he suffered a traumatic brain injury due to a near-drowning accident he suffered at his second birthday party.

He got away from family who were at the house and was found face-down in his grandfather’s pond. Aidan’s dad realized that he was missing, only to discover him in the pond. Russell immediately ran down to the edge of the pond and jumped in to get him out. Aidan’s Nana, who is a Registered Nurse, began CPR immediately while Russell called 911.

It only took three minutes for the first responders to arrive and take over. The paramedics worked on Aidan at the scene, intubated him and continued to try and get a pulse. They did not get a pulse on Aidan until about 40-45 minutes later after they arrived at the ER.

Once at the hospital, initial blood work showed Aidan's blood was extremely acidic. He also had severe hypothermia from his time in the 45° water. We were told to prepare for the worst, because the doctors on duty did not expect Aidan to survive.

Through the first hours, Aidan was warmed slowly until he became fevered from developing pneumonia. As a result, Aidan was kept in a medically induced coma for several days. Initial EEGs showed very slow brain activity and some seizures, while CT scans showed little swelling and initial MRIs showed very little damage to his brain.

After several more EEGs and MRIs, it was found that Aidan was showing more brain activity, but his brain had shrunk somewhat and the areas that initially looked hypoxic (oxygen-deprived) had infarcted (died) on the second MRI, causing a stroke in Aidan's midbrain (basal ganglia) area. This damage results in Aidan having multiple seizures and "sympathetic neuro-storms".

Aidan spent 40 days at the Pediatric ICU of Jeff Gordon Children’s Hospital at Carolinas Medical Center-Northeast in Concord, NC. He was then transferred to Levine Children’s Hospital in Charlotte, NC where he received physical, occupational and speech therapy for three weeks. Aidan was released from the hospital on April 17, 2008; two months and a day after his accident. He currently continues to
receive nursing care at home, as well as inpatient and outpatient therapies. After three years, he has made a lot of progress, but there is still much that needs to be done. He is confined to a wheelchair, non-verbal, and must take feedings and medications via G-Tube.

To assist with the immense challenge of financing uninsured therapies and other injury-related expenses, a fundraising campaign has been established with the NTAF Catastrophic Injury Program. NTAF is a nonprofit organization that assists people needing organ/tissue transplants or having experienced catastrophic injuries. All contributions are administered by NTAF exclusively for injury-related
expenses. Donations are tax-deductible to the full extent of the law.

To make a charitable contribution:
Make checks payable to: NTAF South-Atlantic Traumatic Brain Injury Fund
Note in memo section: In Honor of Aidan Wright
Send to: NTAF, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

To make a credit card contribution, call NTAF at 800-642-8399 or visit http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/7BA8BE2B-FE5B-F7B6-C80BBE5D8F692F71 and click "CONTRIBUTE NOW"

Family and friends are also planning a series of community events to benefit Aidan. We can use your time, energy and creativity in any and every way. Please call or email me with any questions, to volunteer your time or to request additional information.

Thank you for your interest in our son, as well as your continued support and prayers.
Russell and Erin Wright
704.490.5131
prayforaidan@gmail.com

osutuba

09-27-2011, 04:38 PM

It's been a while since I posted, but not a whole lot has been going on. Aidan started Kindergarten at the end of August. He is in an EC class with 3 other children of various ages. I believe he's the only kindergartner. So far, I guess he enjoys it. He's been sleeping a lot during the day so it's hard to tell.

Over the past few months, we've noticed Aidan's heart rate dropping very low for brief periods of time during his sleep. Since it has been going on for some time now, we decided to take him to see a cardiologist this past Friday. This initial EKG that they did there in the office showed nothing out of the ordinary, but the doctor had a portable monitor placed on Aidan to be worn for 24 hours so that he might be able to see what is going on during the times that we're seeing his heart rate drop.

I'm hoping that it's nothing more than us needing to taper back the dosage of the Clonidine that he's on to control the storming symptoms. We'll know more after the data is reviewed.

Other than that, we took Aidan off of the Ketogenic diet because we didn't think it was having much impact on his seizures and he'd lost way too much weight. He now weighs 37 pounds and he's 42.5 inches long. We're trying to get him back up to 45 pounds so that his surgeon feels comfortable enough placing the baclofen pump that we've been waiting so long for.

In a few weeks, I am supposed to be going to Seattle some other mothers of near-drown children. If you recall, I went last year in November. It was such an amazing trip and I met some of the most wonderful and inspiring women ever. I am still trying to raise the money so that I can buy my plane ticket, but I'm hopeful that I'll be able to buy it in the next week or so with the amount of orders I've had come in for my crochet items. (UPDATE: She purchased her ticket today and will be flying to Seattle on 10/20)

I'm so sorry I've been so slack about posting new blog updates. Since we have a Facebook page for Aidan (http://www.facebook.com/prayforaidan), we tend to update that more because it's just a quick blurb and so many people use it. We're so glad that so many people read this blog and have been touched or inspired by Aidan and our story.

Thank you for your continued prayers and support!
God Bless!

~Erin