Tuesday, October 28, 2008

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

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

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

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

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

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

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

Thanks for the continued support and prayers.


Unknown said...

hello, I to am the parent of a near drowner. Justine is 19 1/2 years old. her near drowning happened right after her 1st birthday. You are doing a wonderful job. Just remember these kids are are fighters and would not be here if they weren't. Those angelic smiles make all the work seem so easy don't they? Jodi

Luke's Mom said...

I continue to pray for Aidan and your whole family. Hoping that all is going fine and that you are just too busy to update your blog.

Suzi Searles