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  • Writer's pictureHeidi Renee

We're Here

We are still here plodding along.

AJ is feeling better and gaining his strength back. He still isn't walking on his own. He hasn't been to toddler group in a week and a half...and won't return until two weeks from today. This due to CDHH's spring break next week and his activation being the following Monday. So much for peer interaction. He'll attend group two days after he's activated. This ought to be interesting.

Each day he does something that gets him closer to where he was before last Thursday. Yesterday, he climbed up on his airplane on his own. His PT comes tomorrow and we are ever so anxious to have her work with him again. She hasn't been here in two weeks...and we all know I get crabby when I don't have his PT here. We are anxious to hear her opinion and get our homework for the week to help him along. If AJ does not improve we may need to take him to the neurologist.

Of course you know where my mind is going. "Let's do an MRI." Sorry Doc, we can't. He just got his implant two weeks ago and has a magnet in his head. That would be our luck. We are really hoping he continues to improve. Our happy boy has emerged, he was all smiles today, so that was a nice change of pace.

He did have make some awesome progress during OT on Monday. So perhaps his gains in fine-motor skills are also contributing to why he's regressed so drastically with gross motor skills. Of course, he can't tell us what's going on. I'm still looking for the manual for this kiddo. If anyone finds it, please let me know. (No jokes about "no kid comes with a manual" please. Seriously, I can't take it tonight.... We really wish there was one for AJ)

Jeremy's work was kind enough to give him off this entire week which has been an extreme blessing. We've finally had some timet together as a family, time to process the present, past, and future.

We are gearing up for activation, and trying our best not to worry about his upcoming surgery in early May. Not the surgery itself, the post-op is now frightening to both of us. He has a weight check the day after his activation-another thing we are trying our best not to stress over. I bust out at random times (usually while driving) just thinking about AJ hearing. Still numb. Still weird. Still foreign. Hmm.

We're busy preparing his information packet for the entire IEP team and just realized his paperwork for state insurance is due. Such fun. I love paper, but that packet, is just too much. Although I will say it is much easier to fill out this year, with the help of copies form last years forms and knowing all the "LINGO" and how to answer the questions. Last year I didn't have a clue. His therapists are beginning their formal testings/evaluations of AJ for the purpose of the IEP meeting.

So, we're here. More later.

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