Wednesday, December 7, 2011
Callie's big appointment
This is the big appointment we have been waiting for since September...to talk about her feet deforming the way that they are and ways to make it better. This is where we were supposed to talk about why she is so tight, and why we can't seem to get her stretched out. And where we were going to talk about tone and anything that might be able to help hers at the moment.
There were several options on the table, 2 of which that sounded as though they could provide near instant relief and long term benefit.
We started off having a full battery of evals done. No surprises there...everything is exactly where I thought it was. (Cognitive, expressive and receptive language at the top of the chart as a 5 1/2 year old, fine motor skills are about 6 months delayed, and gross motor is about 70% delayed <-- that last one hurt a little to hear, even though I know it to be true! She is very smart, and very talkative, she understands everything people are saying, she just struggles a bit getting her body to move the way she wants it to!)
Next, she got to have a full pt session. They did all sorts of measurements to see where her range of motion is. They tested both her full range (in a stretch) and her functional range (what she can use on her own w/o assistance). They had her do all sorts of activities, like climbing stairs, swinging a bat to hit a ball off a T (this was really hard for her!), throwing a ball into a basketball hoop (she was amazingly good at this one!), and walking between 2 parallel lines (another one that was really tricky for her - but she asked to try it a 2nd time, and did a little better the 2nd time!) They tested her ability to start and stop herself, by asking her to stop at each line before continuing (we have been working on this for awhile now, and while she has gotten much better, she still has a lot of room for improvement!), and had her try to jump without holding onto things. Then they brought out a walker, to see how she looked while using it. (The pt didn't like how she would go really fast, and never let her heels touch the ground. She said in form, her walker is not helping her, but in function, it lets her get around the community with less effort, and helps her keep up with peers and play.)
After that we went to see the doctor. Who looked over her legs, hips, ankles, and feet. She wanted to see her weight bear with and without her orthotics. Had her walk, and dance. By the time we made it here, Callie was D.O.N.E. She was tired. She was hungry. And she wanted to leave.
The doctor was unsure what her hips looked like, so she ordered x-rays of her hips to make sure they are properly in their sockets. (They are.) We were told if Callie was just too tired that we could come back another day, or we could head over there right now...we opted to head over that way, as I really didn't want to have to come back to Children's again for another appointment!
The doctor thought that with as tight as her hamstrings and heel cords are, serial casting (getting a good stretch, then casting it for 3-5 days, cut the cast off, re stretch and recast for 3-5 days, then repeat for 6-8 weeks) might be the best option for her. She said that her tone is not a big deal. She said she didn't think any of the other options would work for Callie because her tone is actually pretty low. She said that she would have to get back to me with the final recommendations later as all 3 of the providers who saw Callie got together in the afternoon to discuss options for her.
In the end, they decided that Callie's range of motion really isn't *that* bad, and within acceptable, tight, but ok parameters on the cp scale. When I spoke with the doctor on the phone today, she kept saying, "Compared to other kids her age with her condition, she looks really good." Average for taking first steps with sdcp is 4-5 years old. Callie did that at just shy of 2 1/2 years.
The problem I have with that statement is that Callie has lost some function. Callie had better form and more endurance before she was as tight as she is now. And regardless of how good she looks now, we want to get her back to where she was...back to HER full potential!
When I expressed this to the doctor, she mentioned that we could do night splinting (something her pt wants to do, too).
I asked about why her feet are just now looking like this. The doctor thinks it has to do with a big growth spurt, and that she is naturally 'loose' (meaning her ligaments and tendons would have made her really flexible if she didn't have cp). I asked what can be done about it, and if keeping her in night splints would help the tendon that is too loose, and allowing her foot to collapse to tighten up. She said no. And that there really isn't anything we can do about it, and she will likely need surgery to re-align her feet in a few years. I asked if using night splints to loosen her hamstrings and heel cords would help at all,and she didn't think it would, because she is in the 'tight but still ok' category.
I don't like our options! I am not even sure I agree with all of them...it seems to me that increasing her range of motion, especially her functional range that she is able to use, WOULD help! We go back to see Miss Jenna on Tuesday, and I look forward to getting her advice on all of this! I really don't like that they are holding her up to the 'standard' for having sdcp, and saying since she is doing better than that, she must be ok.
At least the hospital has some fun things to look at as we had to go back and forth to different areas! (Callie got so tired through the appointment that she had to be put into a wheel chair for the rest of the time going back and forth across the hospital.)