Hello, Everyone! It seems like a lot has happened since my last post. Abram had his high contrast MRI (for which we are still waiting on the results), he got his first pair of foot braces (AKA as "AFOs) and his first pair of glasses came in. It seemed like a lot for the little kiddo to take in so we're weaning him onto both slowly and never at the same time! This morning, I took him outside for the first time with his new glasses and instead of repeatedly trying to rip said glasses off of his face he actually took the world in with amazement and it involved a lot of crazy cackling! I think it overwhelmed him though and he soon got grumpy, did a crazy cry I have never heard before and he is currently down for a nap! It was just so cool to see that the glasses made such an improvement in the way he can see the world. It is so obvious by the way he is in awe that it truly did make a difference and I am hoping that maybe with the improvement in his vision that perhaps his fine motor skills will improve and hopefully it will help with his sensory issues too! This poor kiddo is terrified of anything squishy, slimy or rubbery and can't even bring himself to touch a banana although he loves to eat them. Ironically, a taste of a chocolate chip cook made him drool it all out in disgust and gag so that was pretty weird considering I love all things sweet and tasty and my boy loves his veggies - which is AWESOME! He wouldn't even eat his cupcake on his Birthday! Anyhow, the glasses have amazed me and I can't wait for when he gets used to them enough that he's not constantly trying to tear them off between moments of having his mind blown about how awesome things are now that he can actually see them! I am so glad that the Opthamalogist decided to put him into glasses earlier than we had planned! You can see a video of his first time outside with his glasses by clicking here! In addition to his new world-view, his AFO's have also been a pretty huge eye-opener for me! As most of you know, Abram also has hypotonia as well which has resulted in extremely low muscle tone in his legs and arms. He receives Physical Therapy and Occupational Therapy for that but it really seems like these little foot braces will really be making a huge difference in his mobility. When we went to go pick them up and the Orthotic Doctor put Abram in his AFOs and his sweet red and black New Balance sneakers he asked for me to have Abram stand, to which I replied that he can't bear weight on his legs. He asked "Can't or won't" and I tried to explain to him how he never has, how he always bends in half and cries as if it hurts him. However, as I was saying this, I felt Abram's feet hit the ground for the first time and his knees didn't buckle and he did not bend in half! Then, he actually bent at the knees and straightened his legs again as if finally feeling what the ground is supposed to feel like for the first time.... and all of the hair on my arms stood up at once and I had tears rolling down my cheeks! He collapsed in half immediately after but I felt my son feeling his own power for the first time and it was unbelievable. I cannot wait to see where this child is going to be in the next few months. They don't think that he'll walk until he's about two (and that is okay)! It's just such a thrill to see him blossoming and getting that sense of self! This little boy blows my mind every single day. |
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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