She has to go ser her neurologist, pulmonologist, cardiologist, and orthopedic docs. I get all worked up and stressed. I have to watch them poke and prod and mess with her. Take notes. And then smile and pretend I'm not upset.
Then I have to listen to the. Tell me in words she can't understand to what degree she has worsened :( sigh
If you have time could you send a prayer or two her way. Shes only 8 and she deserves it.
First off thanks so much mommas for the prayers. I think they were heard today. :) our appt went well. We had her echo and ekg done first. They didn't call in the dr in right away.but we will know for sure tomorrow.
Then we saw the neuro. She replaced our ikd neurologist. I really liked her. She wants a nee sleep study and nap study done due to the fatigue. Also wants my dd put back on breathing meds for lung weakness.
Then we saw the pt and ot (physical and occupational therapist) and they said she needs new leg braces and physical therapy for her muscles tightening.
Worst part of the day is the neuro wants to put my dd on add meds to stop the fatigue :( I hate putting my sweet baby on meds. I hate the breathing meds lets alone uppers :( sigh. But the fatigue is impacting her learning. :(
But the mda social workers are pulling her iep for mw and helping rewrite it for me.
Thanks again for your thoughts a d prayers :)