No Seizures!

Macayla’s EEG showed no seizures over the 48 hours she was hooked up. This is remarkably different from past EEG’s where we would have 100+ per day. Part of the reason is that so much of the brain has atrophied that there is less brain to cause a seizure. The other part of the equation is that her medications are controlling the generalized seizure activity. The doctor did confirm that she had some focal spikes in the temporal lobes, but overall we are celebrating that Macayla’s day is not broken up with seizures like before. This means that the episodes we have been seeing are either behavioral or pain related. In relation to pain, we will know more when we get the GI problems under control. The MRI has shown some “significant” changes again. This time the doctor said there were some abnormalities in the white matter. We aren’t sure yet what that can mean but we hope to get to view the MRI images sometime this coming week.
Macayla’s feeding is going well and we were able to get 1000 calories in her yesterday for the first time in two weeks. She has had less black or brown blood in her stomach contents over the last couple of days and she has less agitation with feeding. We are not out of the woods yet, but she is definitely on her way. He stomach contents tested positive for blood this past week so we know we have irritation but the new formula and increased protein-pump inhibitor seems to be working.
Unfortunately Macayla has stopped walking with assistance. She normally could bear weight and take steps with full assistance from us, but since we unhooked from the EEG, she stopped bearing weight on her left leg and is really not getting anywhere with it yet. Her PT and OT worked with her on Wednesday, but we did not get any good results yet. We are trying out a stander to see if it is helpful and she seems to like it. This allows her to stand safely and keep blood flow to her legs and gravity certainly helps with GI flow. Stander equals more dirty diapers!