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.
5 comments:
Let me first say that I'm just so proud of you and Caleigh, Holly. All the time! You girls are truly a dynamic duo!
The last part of your update with the AFOs and the shoes got me to thinking about something that I just recently learned that might help you guys out.
At nearly 21 with CP, I still wear a shorter version of the AFO called the SMO which is basically a shoe insert with ankle support but is still a plastic orthotic. This past August, when I was having a new pair made by a private orthotist instead of one of the orthotists at the hospital who are just so out-of-date with technique it's not even funny, he suggested that I try a few things to cool off my feet.
In Georgia, we are faced with high temperatures and humidity early in the year, which is also the case in Texas. That makes it SO hard to wear plastic on your feet all the time all summer long. (Except for when I wear my cute pink slip ons and feel like a rebel!).
He suggested that I buy the running shoes with mesh on the top of the toe. Everything is ventilated that way. I realize that Caleigh's feet will grow A LOT, so this might be tough for now, but it might be worth a try. My running shoes, the ones I wear most of the time except for when I'm wearing a cute summer dress, are New Balance. They're fabulous!
For additional ventilation, he suggested wearing compression socks, which absorb sweat and other moistures well. However, I don't like the tight fit of the compression sock, and I wear 100% cotton socks anyway, so that was a no-brainer for me.
I don't know why I shared this, but even at my age and after wearing them all of my life, I still don't like to wear them, especially when it's so hot. Finding these strategies has made it more bearable, though, definitely.
Hope this helps, and if you have any questions, always feel free to e-mail me!
So proud of your girl! Happy Mother's Day!
Is that the iPad (purple) mounted on her chair?
So happy for all your good news!
What do you think about telling her no when you don't have to tell her no - just to practice learning to wait for what she wants?
Barbara
And let me just say... those are THE cutest little girl New Balances I have seen yet! So glad the tongue trick helped!
And I can't leave this comment box before saying Happy Mother's Day to one helluva' mom!
Stronger is good, especially as she gets bigger, she'll be able to help you more. And i can really relate to the squealing - it got christened screaming here by her brother - it certainly makes you do what they want doesn't it! Happy Mother's Day :)
What's your iPad mount system? It looks like a manfrotto arm with something else. I'd love to know.
Also - we're in the same boat with AFOs. My son's tone is such a challenge. He really hates them and I just loose the will to force them on, only to have him melt down. I feel like I'm letting him down by not doing it more often. Sigh.
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