I am just getting to updating about the early intervention meeting from Tuesday. It went very well, they will be setting us up with a physical therapist as well as an occupational therapist. They will also be helping us with evaluating and fitting Noah for a stander. Our first evaluation with the PT will be on November the 29th. Today is a busy day...we have an appointment with the pediatrician...and after that we go see the surgeon that did Noah's g-tube surgery....Praying for that because it is looking like there is some granulation tissue forming. (Meaning the hole is trying to close. Possibly can be cauterized but if not another trip to the operating room....oh joy.) Will update on these visits later tonight....
All I really know to say is what a ride this has been. Last night putting Noah in the tiniest wheelchair I have ever seen was a defining moment. It was exciting but just as much as it was exciting, it was a huge slap of reality. Why did this happen??? Why Noah....why our family?? Why anyone?? SMA is a terrible beast. It has ripped apart our dreams and the dreams we had for Noah.....it has crushed our inner beings.
I must admit...I am torn.....I never thought I could love something so much, yet hate it so much at the same exact time. I hate the wheelchair for what it means....but I love it because it gives Noah the independence that he so desperately needs and desires.
I know exactly how you feel about being torn... I feel that way about every orthotic and every piece of equipment we've gotten for Ella. Sending hugs your way!!
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