Updates

Well, there are a lot of things I have been remiss about updating.

First, the EEG. It came back with abnormal brain activity. While there was no evidence of seizure activity, there were several spikes which indicated that she is still in danger of having seizures, and will need to remain on her meds. THis is not a big surprise...it is what we expected. So, that is all fine. We did lower her dose, though, due to the concerns we were having with the sleepiness. So that is good. But going to bed at night is a little more challenging!!

Equipment: We tried out a new walker. It is a fancier version, with more options, to give her more trunck support, and better posture while walking. So we are ordering one of those and hoping insurance will pay. We tried out a "sit to stand" chair and desk. It gives her a seat to sit in, and a desk that goes with it, that she can pull up on for standing. IT is cute, and she liked it when she could do it successfully. We want one, but with insurance issues we aren't ordering that right away. We will order it eventually. We are also looking into a bath seat, so she can have seat to go into the tub that is bigger than infant size. This will mean graduating from the infant tub (at age 2!). That would be a relief to be able to bathe her in the bathtub.

I am not sure I wrote about the soft knee braces that she is supposed to wear when sleeping. She has soft braces that go over her whole leg and they keep her from bending her knees, to help stretch her hamstrings. Well, she did okay the first few days, but then it seemed to interrupt sleep, so we stopped them for now. We have to get back into breaking them in...at least at nap time. It is a big project to keep hamstrings stretched out! But sleeping is most important! We also got casts made for her new AFO's (ankle-foot orthotics). Those should be in in a couple weeks. She is supposed to wear those WITH The knee braces for sleeping...I am not optimistic about that!

We ordered her some "theratogs" which is a suit made of a soft material that provides input to her muscles to get them working. It goes under her clothes. It also has straps that allow you to focus on specific muscle groups. Hopefully those are coming soon. So in the end she will have a complete "exosceleton" as I like to say. Poor thing. but hopefully it will all help.

AND, yes there is more...I found a hospital in MI that does intensive PT for kids with CP (cerebral palsy) that we are going to try to do next summer (they are booked this year). The sessions are 1-4 weeks, depending on what we can afford. They do PT 4 hours a day. And the benefits to many kids are amazing to hear aobut. It is run by a doctor, and so insurance might cover it. Let's hope. They also give a home plan to follow for maintaining progress. So, that would be cool to do. We shall see.

In the mean time we are trying to enjoy summer. Sam is doing well with her walking. today she took smoe of her best steps yet in her walker. She had GREAT posture for about 7 steps. It was amazing. She was concentrating so hard. I wish I got video of it. Dad and Grampy put in A/C in her room today, so that is good. Just in time for the heat wave that is upon us!

Not much else, except when I was doing some reading on the internet I found this quote about the prognosis for kids with CP:

"Individuals who have cerebral palsy and their family or caregivers are also key members of the treatment team, and they should be intimately involved in all steps of planning, making decisions, and applying treatments. Studies have shown that family support and personal determination are two of the most important predictors of which individuals who have cerebral palsy will achieve long- term goals. "

So if that is true, Sam is in great shape!!

Well, off to do some chores!