Brody and Gracie both had brain bleeds when they were born. This creates scare tissue in the brain meaning that part of the brain is dead. Brody's was a grade III so there is a lot of scare tissue. Because of this, we see a Neurologist every year to track their progress. Our doctor is a little old man that takes you back to another time. He carries a brief case with him full of charts and information- no computers for him. He has dedicated his life to medicine and has been practicing for over 40 years! He is a very no nonsense type of doctor and doesn't believe in ordering test just to order them. Anyway, I had a list of things I talked to him about. He is so very impressed with Brody. His walking and talking are very unexpected for a child with his history. I asked him about ordering MRI tests for Brody and Gracie since they've not had one since they were born. He was against it. He said it wouldn't tell us anything we don't already know and that he would order the test when they were 4. He did order one test for Brody and that test will see if Brody is having seizures. Brody falls often for no reason and it could be him having a seizure. We will have that test done at the beginning of January.
We left that appointment and our next stop was to have Gracie's blood drawn to check her blood gas levels. I'm still waiting on the results from the Pulmonologist.
We rushed out of Texas Children's and hauled butt across town to pick up Gracie's new leg brace. Once she got it on there were major adjustments that it needed so we have to pick it up next week.
We've made a big change to our schedule in that we've decided to switch Physical Therapist. It was one of the hardest things I've had to do because our PT has been so great to our family but the kids were not really responding to him anymore. They were meeting their goals but for whatever reason were not getting along with the PT. We are so happy that we have another PT starting on Tuesday though. We get so attached to our team because they are our family. We see them twice a week every week for hours each time.
The kids have been accepted into a special program within Texas Children's that will be an all around service coordinator for their care and will follow them for years. We are at the very early stages but I'm very excited for this because it will be another set of eyes besides mine making sure I'm not missing something they need.
It's been a really busy week. We are so exhausted and can't wait to just chill out and catch up on some sleep!
KP
