You couldn't wipe the smile off my face after our last Neuro appt. Janna appears to be spasm free after we endured a 3 week hospitalization for ACTH treatment of her Spasms.
I knew that we were seeing good things result from the ACTH, she was making more noises, she was fixing her gaze on things again, she was trying to get her hands up to her mouth all good things but I wouldn't have dared to dream we'd be spasm free. Even our Neurologist was surprised, he didn't think we'd necessarily see that kind of benefit from the ACTH due to the extent of Janna's birth injury. I'm not sure we're completely seizure free but I can live with a few seizures as long as the spasms do not come back.
So now we're working on a very slow wean of the Steriod/Hormone and she's on a vast cocktail of meds still; Nitrazepam, Vigabatrin, Pregnisone, Amlodipine, Lansoprazole but we'll be slowly weaning the Pregnisone and then the Amlodipine and then the Vigabatrin. Hopefully she continues to do well and we can get away with only the Nitrazepam and Lansoprazole going forward.
Our next hospital visit will be for her G-tube in mid April and then at the same time we have clinic appointments with Neuro and Ortho. She's now in a Pavlik harness for Developmental Hip Dysplasia and we'll be stuck with it for 23 hrs per day until May (Although I'm sure it will be necessary to give her a break from it during her surgery and recovery. I'll be discussing this with our orthopedic surgeon when we have our clinic appointment.)
So we get to chill out at home for awhile with only pediatric appointments each week until mid April (Yeah!)
