As usual, a lot to report since my last entry. Abram is finally pulling up to stand and "cruising" along furniture! It was such a huge deal to us and it made me cry to see how proud he was to be doing that!! The cat however, seems a bit disgusted that he's got a broader reach!
His Physical Therapist also got him to walk across our (yes, tiny) living room but the fact that she got him to 1) touch the rubbery handles and 2) "walk" using his posture trainer (picture a backward adult/elderly walker) in shiny gold! He screamed the entire time but he did it with the help Physical Therapy twice a week since last summer! I'd like to honestly have him "walk" into that Orthopaedic Surgeon's office and have him kick the guy in the shins for telling us that we could do PT until we were blue in the face and it wouldn't do a thing! We showed him! Go, Abe, Go!!
I'd also like to send a HUGE THANK YOU to the Rock Island District of the Army Corps of Engineers - where my father retired from and whose former co-workers were kind enough to send us a great donation that enabled us to pay for Abram's new glasses (coming soon!) and new shoes! Thank you so much for your kindness and generosity and for thinking of my son! It was so kind of you!
I'd also like to say thank you to the people who sent my family kind words after my Grandfather's passing. Lyle Fluckey was a great man and he will be missed by many. I'm just so glad that I got to give him a proper goodbye and he got to see Abram stand before he left this world! Such a great honor to have the chance to tell someone you love them one last time!
The Opthamalogist that we switched to turned out to be a great decision. Abram's old glasses had a prescription that was incorrect (too strong) and they check him and he does not have FEVR, which was a relief. His right eye is turning in but they feel that these glasses will help correct it and they gave us drops to put into his eyes so that they dilate enough to blur his vision so that he'll WANT to wear his glasses. I'm hoping that method works! With his Sensory issues, he tends to be very head/face sensitive and can't stand anything on his head! Drops however, are a much better suggestion that the suggestion that we got from our old Doctor who told us to duct tape magazines around his arms to restrict his movement! Um, no!!!
In addition - Abram's soft spot still has not closed up and is considered to be an "abnormal fontanelle" so on the recommendation of our PT we are going to see a cranio facial doctor next week to see if they can give us any suggestions as to why it isn't closed, if it ever will close and to get a second opinion as to whether or not putting a helmet on him to protect him would be a good idea as suggested by our Neurologist.
I think that about sums that stuff up!! Lots of appointments coming up/waiting to get scheduled and as per usual, I will update here when I can! Thanks for reading and thanks for caring. We love you!
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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