Monday, September 10, 2018

Spinraza Day



You may think it odd to see pictures of Caleb in the hospital on a layout with a celebratory feel, but this truly was an amazing day! When Caleb was diagnosed we were told, “No treatment, no cure,” but that is no longer true! On December 23, 2016, the FDA approved the very first SMA drug treatment, known as Spinraza. This drug goes into the spinal column through a lumbar puncture, and although he knew it was going to be an uncomfortable procedure, Caleb couldn’t wait to get the drug!

However, this was not an easy endeavor. Caleb went for his first dose which was scheduled at bedside. Caleb’s scoliosis complicated the procedure. After 90 minutes of attempting to get a needle to enter his spinal column with no success, the doctor sent the medicine back to the pharmacy, and we called it a day. I don’t think I have ever been as disappointed.

 Our next step was to wait for an appointment to do the spinal tap under fluoroscopy, which would mean that an x-ray would guide the needle. On our second attempt we all were holding our breath, but once the procedure got under way it only took 30 minutes before Caleb was being wheeled back to the recovery room! I got to go into the procedure room with him and when the doctor administered Spinraza I cried happy tears. I took that picture of him with a big smile to post on Facebook for everyone who had been praying and waiting for the good news.


I loved Caleb's smile right after his procedure! 

Since Caleb started getting Spinraza we’ve noticed many positive changes. His voice and breath control are stronger. His hands are stronger and he can do more with them before they fatigue. His handwriting is darker and he is able to move his legs a little more. We even took a video of him leaning forward in his wheel chair to pick something up and sit back up! So for all of these reasons, I wanted this page to capture the joy we were feeling as a family.




Scrapbooking Tip:

I used Simple Stories’ Let’s Party paper collection. I liked the bright colors and the banner and streamer stickers.

Once again, I love banner stickers! I overlapped them in the upper left corner. I placed them there because there was so much going on in the bottom right of the page. By having a small embellishment in the opposite corner, it helps balance the page. I added the top banner with dimensional adhesive to create the look of real banners. 



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