Isaac caught his first cold over the weekend. By Tuesday, Grammy, Alex and I all had it. Jim said Alex had a really terrible night of sleep on Monday, up 8-10 times, once for an hour and a half, all with moaning and feverish words like she needed to be "on the 9th floor" (a random floor in the adult part of the hospital). It was pretty pathetic, and she probably only got about 6 or 7 hours at best (Jim only got about 3 hours of broken sleep, poor guy!). I was sure it was going to be a terrible day for therapy, but thanks to some new toys they brought out at therapy and some new activities, she surprisingly had a pretty decent day.
As though Isaac knew we all needed a boost, at the end of the day he treated us all to his first laughs. He absolutely loves his big sister and found everything she was doing at dinner to be quick funny. They say laughter is the best medicine. Whatever the case, Alex got a great night of sleep last night and seemed much better today.
Wednesday, May 29, 2013
Visit with Grammy
We had a lovely visit last weekend with Grammy. A highlight was when Grammy and Grandpa were out touring with Alex in her stander and they got to listen to an impromptu song by one of the hospital employees on the piano in one of the common areas. Alex twirled in her stander while he played and clapped loudly enough to earn an encore song. :) Grammy was also amazed by how much Isaac has changed since the beginning of our trip. He is extremely close to sitting unsupported and one of his favorite things is jumping.
Alex loves getting her hands on the camera! Here are a couple pictures she took:
And a really sweet video of Isaac practicing his sitting: Isaac Sitting Video
Thursday, May 23, 2013
First time side stepping
This was Alex's first attempt at side-stepping post-surgery. Historically, side-stepping has been very hard for Alex because the muscles in her hips are really weak. She actually did a pretty good job here her first time trying it. Alex's PTs at home had made an effort to really focus on strengthening this area before surgery and it looks like we are getting some benefit from that.
Tuesday, May 21, 2013
Visit with Uncle Dave and Maureen!
We had a really nice weekend. Alex got the clear from the PTs and OTs to do as much floor-play as she wants. She has been having a lot of fun playing in the lobby play area with Isaac. And as a special treat, Uncle Dave and Maureen drove up from Wisconsin for a visit on Sunday! Alex really enjoyed seeing them, and especially loved taking them on a tour of the hospital and showing them all the toys in the play area. It was a fun distraction for all of us.
Alex took this picture of Uncle Dave and Isaac.
Alex and Uncle Dave had a lot of fun playing "Wheely Races" here is a video:
Monday, May 20, 2013
Level 3 bridging!
Both the PTs and OTs have really been stressing the bridging exercise for the past 3 weeks. They were quite hard for Alex starting out, but she has been getting stronger and stronger with all the practice. This is the first time we saw this particular PT, but she was really good at pushing Alex on this last Friday. She called Level 1 bridging when you have your arms at your side and push into the floor. That was easy, so she pushed Alex to do Level 2 bridging which was crossing her arms on her chest while she bridged. That was easy, so she pushed Alex to do Level 3 bridging and hold it in the air for 5 seconds. She then had Alex do a bonus move where she kept her knees together by sqeezing the therapist's hand. Next step will be a bridge for 5 seconds keeping her knees together totally by herself, without even squeezing a therapist's hand. We had a new PT who tried that on Saturday, and Alex wasn't quite there just yet. But I imagine she will be there in not too long!
Friday, May 17, 2013
The Stander Dance
Alex absolutely loves her stander and has invented her own "stander dance." She was practicing while waiting for therapy the other day and I got a video: Alex's stander dance
Tuesday, May 14, 2013
Something for the therapists
In these videos, Alex is practicing holding the "half-kneel" position, which is how typical people usually stand up from the floor using a table or something for support. It may not look all that difficult, but therapists who've worked with her as well as others who've worked closely with CP kids know just how difficult this position is due to the spasticity and muscle weakness. So Alex usually "muscles up", using mainly her arms and both legs at the same time when she stands up from the floor at a table. She may always do this, but it would be pretty cool if she could get strong enough and learn how to do it through half-kneel--it is better on the joints and helps build strength and all kinds of good stuff. This is one of the first times she has attempted this position post-surgery, and she did really, really well. Even before surgery, she rarely held this position without at least some support from the therapist, so I was absolutely thrilled to see her do so well in it already. The therapist in the video is very pleased, and offers hope that because she is doing so well already that maybe she can learn to get into the position on her own and use it in her daily life on her own. I am excited that it seems to me that it suggests that spasticity was a bigger limiter than we realized and that Alex does have at least some underlying muscle strength. And it is fun to be starting to work toward being in more and more upright positions. Jim and I are really looking forward to standing practice and taking steps with her walker, parallel bars, etc.
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