Spinraza Rock Star

Here is a layout that shows just what a rock star my son is! I made it at Caleb's request to "showcase" a major part of his life - medical procedures, and a picture of an xray taken during Caleb's Spinraza injections.  I added a bright yellow arrow to highlight the needle in his back, in between the hardware from his spinal fusion. He was also proud of the toy Yoda one of the staff gave him after his procedure!

I know that many times I talk about scrapbooking techniques, but today I want to share part of Caleb's journey with you. This blog is called Scrapping My Blessings, and the fact there is now a treatment for SMA, is one of the biggest blessings in our family's life. I created this layout to remember that even in the midst of trials we would never choose, God has been faithful 

Caleb was born with Spinal Muscular Atrophy (SMA). He has never walked, and has prolonged muscle weakness throughout his entire body. Every four months we drive to Rochester for Caleb to get intrathecal injections of Spinraza, which is an amazing drug that halts the progression of Caleb's disease. If you are like me, and are not sure what intrathecal means, it's an injection into the spinal canal so drugs can reach the CSF, or cerebrospinal fluid. Think spinal tap . . . 

Caleb is awake for these procedures and is absolutely amazing! While we are in the prep room, the doctor comes in and puts some numbing cream on his back. Thirty minutes later they wheel him to the procedure room and transfer him to a table under fluoroscopy machine, which was described to me as a "x-ray" movie. 

A close up of the X-ray photo I used on this layout

Once positioned, the doctors inject lidocaine into the lumbar area to numb Caleb. Then they try to find what Caleb and I call the "sweet spot" where they can inject the Spinraza. When Caleb had his spinal fusion surgery back in 2017, the surgeon worked with the neurologist and this team to make sure that 3-4 vertebrae in the lumbar area of Caleb's spine were not fused so he could get these treatments. It takes the doctor time and patience, along with the guidance of the x-rays, to get the needle into the correct area.

Because headaches are often a risk of any type of spinal injection, they take out 5 cc's of Caleb's CSF before injecting 5 cc's of Spinraza. From the time they get Caleb on the table, it takes about 10-15 minutes! Caleb always jokes with his doctor to see if he can do it faster than the last time, to which he always replies, "I'm going to take as long as I need to keep you safe."

The whole time this is going on, I am sitting behind a wall, watching through a window and listening. Caleb spends the entire procedure talking about Star Wars and video games with the Child Life Specialist who sits up by his head with an ipad, with the sole purpose to make him feel comfortable and distract him. He hardly says, "Ouch". He might make a noise when they first stick him with the lidocaine, but there have been many procedures where he never even says, "Ow."

This whole experience has taught me so much as a mother, and a Christ follower. First, it proves to me that God does have a sense of humor! I have never been great at medical stuff and have passed out many times in doctor offices (and even once at the dentist). Here I am, suiting up to go into procedure rooms with my son, and watch as they use scary looking needles on my baby and I don't even flinch. 

I've also learned that Caleb is an amazingly strong kid! There were so many emotions when he was first diagnosed, and Dave and I knew that there would be many doctors and procedures in his future, and I cried at the thought of everything he would have to go through. While Caleb doesn't like to have medical treatments, God has blessed him with a maturity beyond his years to understand that the long term benefit outweighs the momentary discomfort. He has complete trust in God that everything will be ok. His faith never wavers. At times he may be sad, or wish things were different, but now that he is older, he's told me with sincere conviction that he knows God has a purpose for his life. 

Finally, the most important life lesson I have learned is to recognize God's peace that transcends all understanding. We ask for lots of prayer on appointment and procedure days, and I can tangibly sense God's presence in these scary, sterile rooms, watching Caleb repeatedly go through painful experiences. I have a calm come over me as I silently pray for the doctors, nurses and technicians who work on Caleb. I ask God to guide their hands, and protect Caleb. And the miraculous thing is, I feel his presence right beside me. I know that he is in that room standing right beside Caleb. I can't describe in words, but there is such a holy presence, more powerful than anything I have experienced, a still voice whispering in my ear, reassuring me, "I am here."