SPINRAZA Q & A

What's the schedule? My goal is to pull out of the drive at 12:30 tomorrow. Colby has been invited to a birthday party, so we'll go there first. Stay about an hour. Party on the way to the hospital, that's how we roll. Then do his IPV and CoughAssist treatments and feed him while there. Load back up in the van and head to Cincy. Staying at the Ronald McDonald House tomorrow night, which is excellent. It's right across the street from the hospital and of course much cheaper than staying at a hotel. So again, I request that when you go through a McDonald's drive-thru, please consider dropping your change into the Ronald McDonald House donation box. It's a wonderful organization and I'm really glad we got a short-term stay room there for not only Colby's first injection, but also his 2^nd injection on Sept. 25^th. His 3^rd injection is in October and his 4^th is in November. The rest of Sunday night will be spent getting unpacked and organized. Hoping to get to bed early. We report to Same Day Surgery at 7:30am Monday morning. Colby's procedure is scheduled for 8:57am.

How long will the injection take? Not sure. Colby needs to have anesthesia, so of course his procedure will take longer than someone who just needs lidocaine and no anesthesia. I'm thinking 45 minutes to an hour, start to finish. Then he'll stay in recovery for at least 2 hours. Maybe more since he's getting anesthesia. Once we're discharged, we're winging it. It's recommended that after receiving the Spinraza injection to lie flat as much as possible for several hours after the injection. We've taken out the front seat in the van so we can lean Colby back in his wheelchair to be flat vs riding sitting up like he usually does. I'll give him some Tylenol and we'll start heading home. If Colby starts to have any issues at all, we'll either turn around and go right back to the hospital, or stop where we are, get a hotel, lie him out flat and stay out of town another night. I don't have any idea how the procedure will go or how Colby will react to the drug and the anesthesia. Uncharted territories.

What results will Spinraza have for Colby? Don't know. Only time will tell. At the least it will hopefully stop the progression of SMA. Yeah, not only does Colby have this hideous disorder, it's progressive, meaning he gets worse and weaker as time goes by. Hopefully this drug will stop SMA from making Colby lose anymore lung function and/or muscle strength and mobility. I've heard wonderful testimonies from many SMA parents who say Spinraza is making their SMA child louder, stronger with better head control and improved muscle movement. Yeah, we'd take any and all of the above. Who knows?!

Heck, the Interventional Radiologist could come out and say sorry, we couldn't find an opening in Colby's spine and weren't able to administer the Spinraza. It could happen. Colby could have zero side effects or migraines, spinal fluid leakage, respiratory issues, and who knows what else. I'm opening my head and heart to any and all possibilities with this drug. I'm praying for the best and preparing for the worst. We didn't have a nurse until 4:00 today, so I spent the morning having a long discussion with Colby. I've tried my best to prepare him, but that's kind of hard since there are so many unknowns at this point.

To everyone who continues to follow, love and pray for us during this SMA journey, thank you so much. Actually I can't thank you enough. I'm not going to lie, I'm scared shitless for Colby. There have been times I'm like wait a minute. I'm agreeing to give my kid a drug that may or may not work, and he may or may not have some pretty severe side effects. Sounds a bit cra-cra really. But overall I truly feel trying Spinraza is the best decision for Colby. We can always stop the injections if necessary I suppose. So away we go. We're Spinraza bound!! No turning back now.