This past month has been full of appointments … we have only had 1 weekend where we were actually in our beds at home for the entire weekend.
Ari had an inpatient EEG which indicated that he continues to have abnormal brain waves, but no true seizure activity. This is a relief!! The abnormal waves could turn into true seizures at any time, but currently they have not. We were provided with a rescue medication – meaning if he were to have a seizure we would give this medicine to stop it – but no daily Med is needed at this time.
The next week we had follow-up appointments in Dallas. We received some slightly conflicting opinions from 2 surgeons that we had previously seen, so we’re going to be getting a second opinion in Memphis in July.
The next week we had our yearly well child visit with our pediatrician. We were referred to a local ENT due to his continued ear infections. I am hopeful to find someone local because the drive to Dallas for just ENT isn’t worth it in my book.
During all this busy time, Ari started playing baseball with Miracle League. We have only been able to make it to 2 games so far, but he seems to enjoy it!!
Currently we are in Kansas City, where he gets his Botox injections to help his muscles relax. He gets sedated for this and should be done here soon and then we will head home.
We do see many different specialists and none of them are in our immediate vicinity. I know this causes more anxiety on my part and missing more work, but I have to believe that seeking out the better physicians in their given field is worth the time and trouble. I strive to give him the best opportunities to achieve the highest levels of success he can possibly get … unfortunately for this Momma heart, it often means he has to endure pain or discomfort before getting to the good.
I’m so thankful that he is here and sometimes I still can’t believe I get to be his Mom!!