Swallow Study

So Tuesday we had Aidens swallow study done. It was not the best news, we found that he is aspirating on liquids. It was the most emotional and scary appointment I think we've had. His eating has been the one "normal" thing with him and after getting him eating again after being on a feeding tube we have tried very hard to keep that continuing. I was very adamant that i didn't want him to have to get the gtube and when i heard them say at the appointment that he was in fact aspirating, fear set in. I just knew they were going to tell me that he was not going to be able to eat by mouth any longer and that we would have to do the g tube. This is not exactly what happened thank god! We do have to add a thickening agent to his bottles, which has become quite the ordeal to get it just the right consistency and it makes him mad because eating takes longer and is not as easy as before. It has literally taken me this whole week to really get somewhat of a system down but i finally feel we may be getting it. Its a starch that we put in, and you have to get it just right or it ends up thick as pudding. We have to let it sit for 3 minutes (which aiden is not fond of because when he wants to eat he wants to eat now!) it definitely makes making bottles away from home harder to do ... but I will take it over the g tube and taking away his food any day!

We continue to do the wean of his one med and for the most part its going pretty well. We had a day where he had 3 seizures in a day which is the most he's had for quite some time. And by the end of the month we should be done with weaning and hopefully seizure freedom continues...and we get to celebrate his 1st birthday!!!!

Squishy Update 3/9/12

So I know as Im writting this how very depressing it may sound, and i appologize, Aiden is truly such a blessing and has really made us dig deep and not take advantage of anything. but this is where i can get all these feelings out in the open, somewhere where i dont have to be the constant optomist. the strong person.

So since the last update, we have continued to wean Aiden from one of his seizure meds. It is going pretty well, we are not completly seizure free but he is doing okay for the most part, most seizures happening on the day we go down on the dose. It just really sucks to watch something so horrible happen to your child and not be able to help him in any way. I know most people say that people with seizures dont know they are having them, but I dont believe this he cries his upset this sucks cry after he is done having a seizure, and latley they are knocking him out for long periods of time. Sucky thats the best way to discribe...

We are now officially on count down for his 1st bday!!!  This brings such excitement and fear and realization all at the same time. The older he gets the more evident all the things he wont be doing or things I feel he will be missing out on and it breaks my heart. This pain is so unlike any other pain there is ... most other tradgetiy happens then it is over and you are able to move on. This we relive every moment of every day, in everything we do from the simple every day things like going to the store and not being able to put your child in the cart. To thinking about his first bday and how he wont be able to do the "traditional' things like digging into his first birthday cake.... and it will forever be a pain we live with getting worse by the day or year.. always having in the back of your head that at any time you could loose this fight and loose something that means so much to you and that you have changed your whole life for. And then in the same moment you have such joy from the very simple of things, a movement a smile or just eye contact.

With his first birthday coming also comes some new things. we had to take him in to get fitted for what will essentially be his first wheel chair and what they call a stander (a board we will strap him to to allow him to be in an upright standing possition with support) .. and its crazy to get past the fear of this realization and go to excitement of getting these items to help him, and hopefully how it will bring joy to him to be able to somewhat interact on our level.

Watching the superbowl at the sowards, such a boy!!

LOVE His sad face!!

Squishys first teeth!!!

Thanks again for all who still read these, and for all the support. I would really like to be able to personally thank everyone who has had kind, encouraging words that have really carried us through this year...