I just wanted to put a little medical update here about Abram, so our friends and family can keep up with what is going on. If you read my last blog post, you know how incredibly frustrated I was with the Medical Field and after filing complaints with Patient Relations with both Hospitals I have suddenly gotten the appointments I needed and the time with doctors that we have been needing so terribly. It's sad that in order to get appropriate medical care in this country you have to complain about specific doctors/surgeons in order to get the care you should have had in the first place.
Anyhow, after I complained about the care we have gotten for Abram since Day One, we finally had a Doctor take notice and try to figure things out for us. However, he was already the man we had chosen to rename as our official Pediatrician because he was the only one out of the many that we had met at the Pediatric Clinic that seemed compassionate and caring and actually took the time to listen and interact with me instead of pecking away at a keyboard while I spoke.
So, last Friday, I went in with Abe for his 15 month check-up and ended up being there for an hour and half as he had already heard about my frustrations from above and he had spent his personal time calling all of the specialists, getting copies of reports and had a lot of answers already there for me, which was a nice surprise! He answered all of my questions and we got down to the fact that we need to get into Genetics and to have that second 24-Hour EEG done to rule out seizures.
I also had gotten a phone call back from our Neurologist who confirmed that Melatonin would be something to try to help with Abram's sleep issues, that he had already sent the Geneticist referral in August and that he needs the second EEG. When I told him I hadn't head anything from the Geneticist at all he seemed pretty disgusted that I hadn't gotten a call back. I'm sure he'd be even more annoyed if he knew how horrible his receptionist is and that it took thirteen phone calls and nearly eight weeks for him to give me a return call.
Anyhow....... the point is... after stirring the pot a bit we have some important appointments coming up:
November 2 - he goes to see a Pediatric Neurological Development Specialist, which will be a group session with their Physical, Occupational and Speech Therapists as well as an Audiologist and a few other Specialists if they see fit.
November 27 - he goes in for his two month check-up with his Neurologist here locally
December 2 - he goes in for his 24 hour EEG to rule out seizures
February - he goes to see a Geneticist for the first time - and this is what we've been waiting months to get into to! It took three months just to get a phone call and then another four months of waiting! :( Waiting is the WORST when it comes to your kid!
But.... the good news is the big time specialists are coming up and hopefully we will be closer to having an answer as to what is going on with our poor little man.
In other news.... Abram is getting stronger everyday. He crawls around the house like a maniac and likes to "chase" us as fast as he can. He can get up on to "tall knees" while tormenting the cat or begging for food from visitors and he is really into his new rainstick and weird eyeball bouncy ball that glows green when it bounces. He thinks it is hilarious!
We discovered at his outpatient therapy this week that he does well with a compression vest so we are going to be looking in to either borrowing one or purchasing one as the therapist felt that it would do him some good and possibly help with his sleeping issues since it gives him the deep pressure that he needs. Abram has sensory issues in addition to his Hypotonia so she tried to explain it as.... how we can feel our bodies and feel our arms and legs in space. For Abram... he can't feel all that because his muscle tone is so low but with this thing that squeezes him - it helped him feel more grounded and more calm! So that is on the WISH LIST right now but thanks to a Fundraiser from our friends this weekend - we will be able to afford it if it is something we'll have to pay out of pocket for!!
Sometimes I get stuck on all the things we don't know but I need to remember this:
When we started Physical Therapy in May, Abram could not sit up on his own, he could not crawl, he could not hold his own bottle and he could not feed himself. Now he can do all those things. It is getting better and there are improvements! Life is getting better and easier for him a little (inch)stone at a time!
I just wanted to let everyone know what was up,
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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