Pulling into the parking garage at Nationwide Children’s hospital, I noticed a beautiful little girl clutching a bear as she waited near the elevators with her family. The presence of the stuffed toy and absence of hair made it evident to me that she was sick. In that moment I was sad, thinking how unfair Read more about July MDA/SMA Clinic Visit Recap[…]
Frustration doesn’t even come close to describing the level of emotion I have been feeling lately. The journey to getting Alexander treated has tested our patience, wrecked our emotions, and induced anger towards an overly complicated and cruel process. We were elated to find out the FDA approved Spinraza for the treatment of SMA shortly Read more about Frustration[…]
A lot of exciting things have been going on since our last post. Two days before Christmas, we were on our way to pick up Alexander’s new companion dog, a dog we hope will be a great service dog for him, when we received the amazing news that Nusinersin (now being marketed as Spinraza) was Read more about Cautious Hope[…]
This box arrived Thursday afternoon. I couldn’t bring myself to open it and go through its contents. I knew it was arriving, as I had received a call the day before that they were overnighting it to us. This is our first (of many to come) real piece of medical equipment. Eventually I Read more about The box I didn’t want to open[…]
The Trip Alexander had two specialist appointments on Monday in Morgantown, WV. Morgantown is a 4 hour drive from our home and we drove there on Sunday night so the kids wouldn’t be tired and cranky during the appointments. Riding in the car for extended periods of time is hard on Alexander, as he can’t Read more about Specialist appointments and first night away[…]
I updated our facebook page with exciting news a couple of days ago, but neglected to post a blog about it. For starters, UPS dropped off this big brown box a couple of days ago. What was in this large box??? One of the items we have been fundraising for is the Panthera ultralight micro Read more about Lots of updates. Busy week.[…]
We had an appointment with the geneticist for all three of our boys. At our last meeting with the genetics doctor we had yet to get a diagnosis for Alexander. Once Alexander was found to have SMA, our pediatrician referred all of our children to her. I was very nervous leading up to this appointment. Read more about Geneticist and a new (to us) adaptive stroller[…]
We tried out the new swings installed at the Rec center today! I’m glad to see this push to include children with disabilities into the recreational facilities. Alex had a blast!