Today at the clinic we learned 3 things.
1. Kendall has Dystonia (not Cerebral Palsy. Surprise!)
2. The muscle biopsy should be done because it may mean I need to be followed closely by a Cardiologist. And Kamden would need to know in the future as well. And there are possible vitamin regimens that could slow the progressiveness. Not everyone believes this, as we had 2 other Dr.'s tell us they don't help.
3. The Neurologist has never seen a child with Kendall's tone and movement at the age of two progress to independent sitting. (before you throw tomatoes at him, understand that I asked the question first.)
So that's it. Not the news I wanted to get. But I got it. And now we move forward. As my friend Holly said, "Kendall is still the same Kendall she was yesterday."
There was talk of starting her on medications that could potentially improve her movement disorder, but it would be complicated with the Ketogenic Diet. And being that she is so "medically fragile" we don't need to add any more medications.
I've made the calls to schedule the muscle biopsy surgery as well as her next examination under anesthesia. I feel a little apprehensive still, but am at peace with the decision.
Her AFO's will possibly be replaced with new ones with hinges. That's because hopefully this week we are going to demo a Kidwalk.
So, basically this appointment was pretty cut and dry. I wanted answers, and I left with answers.
Now we can stop getting upset with Kendall's arching and frustrating movements to the side. It isn't something we can change. She's frustrated with her inability to control it too. It's not a game. She can't help it.
We will keep doing what we're doing and meet again one year from now.
How did we get here????
7 hours ago