Thursday, January 29, 2009

I feel the need to clarify some things

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, mischevious 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

3 comments:

ferfischer said...

I understand exactly where you are at. I also get the comment "well, she's ok, right?" Well, I guess that depends on your definition of ok. We are also deep in the middle of starting HBOT and also Stem Cell therapy. Even a little progress means a lot! It's a lot, what we're going through.

Tiffany said...

Erin, you handled this explanation so beautifully. I may cut and paste it and use it when people ask about my daughter, Abbie. Thank you for finding a way to be honest yet gentle, informative and understanding all at the same time. i lurk often, but don't normally post. Just know that each of you are in my prayers!

Leslie said...

Praying for Aidan daily - and we praise the Lord for the progress he has had because his parents have been SO AMAZING, so faithful, so tireless. The Lord sees what you and Russ have been doing and we pray for BLESSINGS and complete healing for your little trooper. We pray for every dime of the stem cell research to be given, and quickly. Praying always...