Made of Gray

Updates after Intensive

Holly D Gray5 Comments
Caleigh's 3 week intensive physical therapy has come to an end. I think both Caleigh and I were just getting into the groove of things. Now we will have a new schedule at home to get used to. Overall, intensive went well. Caleigh's arms seem stronger. When she is holding her head up it appears to be straighter than before.Caleigh can sit to stand and stand to sit with more control as well. Stronger is the main theme.
I haven't talked about Caleigh's intestines or food issues in a long time. That's mainly because there hasn't really been any problems to speak of. We stopped the ulcer medicine almost a month ago because the side effects of retching and increased stools were terrible. The bleeding had stopped at that point so we are chancing that the ulcers aren't causing issues right now. Caleigh is now off of her feeds for 7 hours a day and we are continuing to slowly work towards longer periods of time off. She doesn't complain of stomach pain anymore. We haven't been giving Caleigh any foods other than the occasional avocado and we always ask her if she wants it first. Most of the time she tells us "no thank you."
Since Caleigh got her new AFO's we started searching for shoes to wear over them. The SMO insert causes more of a issue than the actual width of the shoe. The insert actually makes most shoes impossible to velcro shut. I ended up ordering from zappos. New Balance has extra wide shoes so I ordered a few pairs to try out. I remembered reading a post from Oia's mom about AFO shoes. So I went back and re-read it looking for tips.
The main thing that I had forgot was to cut out the tongue of the shoe. It serves no purpose when your using AFO's anyways. So that's just what I did; took out the insole and cut out the tongue of the shoe. The heavens parted and the velcro closes just fine over the top of Caleigh's foot. You can't even tell we took a razor blade to them.
The actual AFO's on the other hand have 'stretched' some. Caleigh is now able to pull out of them. It only took her about 3 days to achieve. So we have an appointment on Wednesday to adjust the boots. The straps are stretched out and there are some fit issues to look at, but overall these are much better than the last pair.

Caleigh's been throwing fits lately. The high pitched squeal that comes out of her little body can make a grown man cringe. Probably age appropriate, but most outbursts relate to her not being able to communicate with us while we are out and about. Wanting to talk on her iPad can also cause a fit if we aren't fast enough. She's becoming a bit of a drama queen. I think we may be dealing with a "the world revolves around me" syndrome. Everything from wanting to leave a birthday party, being sleepy and wanting to play longer can cause an outburst. I wish I could read her mind all the time but the fact is, I can't. I'm working on some communication changes with the iPad that will hopefully make a difference. Hopefully. Until then I'm asking for those around us to bring your ear plugs and hang in there.
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