Yesterday Tracy and I took Abram to his one-year appointment with his new Pediatrician. His exam was longer and more thorough than all of our previous pediatrician's exams altogether. In fact, if it weren't for us meeting his new Pediatrician via a life-changing happenstance of a walk-in clinic, our son would not be on the road to getting the help he needs as he was the man who referred us to a Neurologist the first time he laid eyes on Abram and asked immediately "what's wrong with his eyes" the moment he walked in the door. This was especially impressive considering Abram's old doctor never noticed any of the issues that seemed to be quite obvious to everyone but him!
We didn't get any new mind-blowing crushing news yesterday so that was quite wonderful and our new Pediatrician is even referring us to Orthopedics to see if they can be of any assistance with Abram's Hypotonia issues. He seemed to think that the Neurologist could guide us on the Hypotonia but he had previously stated (as did the brain surgeon) that there was nothing in there to indicate that the brain was causing it, so I don't quite know where we go from here to figure out that part of the puzzle. I have since joined a Support Group for Parents of Kids with Hypotonia and the consensus seemed to be that most parents have no clue why their kids have it and a lot of them have put their kids through muscle biopsies, spinal taps and genetic testing. However, it seemed that regardless of the outcome that the answer was Therapy so I am hoping that Abram can work himself out of it to at least be able to walk before he turns two. Abram was also just fitted for foot braces this week as well. We picked him out some super cute Dinosaur foot braces with black straps and he will get a sweet pair of New Balances as well so that's cool. He'll have to wear certain kinds of footwear to allow for the brace to fit into the shoes. I'm a little nervous about forcing a kid with SPD issues to wear socks, foot braces and shoes all the time because as of right now, Abram can't even handle wearing socks! Hopefully we can work through it or he can get used to it, I hope? So yes, that is where we are for now. Still waiting on Approval for our High Contrast MRI which will tell us if his cyst is benign or not. The Brain Surgeon we sought consult from stated that it was just a cyst and that he could tell from his scans but the local doctors feel confident that a second MRI will give us more answers so we are going to try to go ahead with that as long as Medicaid approve it before the dump us on August 1st! |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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