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Cautious Hope

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 […]

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Nationwide Children’s Hospital

The time finally came. We’ve spent a lot of time after our diagnosis reading up about SMA. What is the science behind it? Can it be treated? If so, how and where? A lot of our research kept leading us to Nationwide Children’s Hospital in Columbus, OH. Wait, Nationwide? The blue squared car insurance company? […]

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The box I didn’t want to open

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 […]

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Specialist appointments and first night away

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 […]

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Going Shopping & Encountering Generousity

We had the opportunity to take Alexander out in his new wheelchair yesterday.  For the first time ever he was able to browse the toy aisle like any other kid his age.  He was picking up toys from the shelf and checking them out.  He was quick to let mommy and daddy know which toys […]

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Lots of updates. Busy week.

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 […]

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Geneticist and a new (to us) adaptive stroller

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. […]

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Manipulating the Eyebrows!

Someone discovered their ability to raise their brows.  We all got a good laugh out of it.

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Super Go Go!

Alexander had the opportunity to try a new power wheelchair during his visit to Camp Gizmo!  He did really well and loved his independence! Here is him getting in it for the first time (with older brothers watching): .. a little later and a little more experienced:

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Manual Wheelchair [VIDEO]

Alexander usually gets around in his standing wheelchair (see below).  It is exhausting for him and puts a lot of pressure on his knees because of the lack of support and the heavy weight of the chair. This one seemed to be more comfortable, but still required a lot of pushing effort and arm strength. […]

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