Keeping on Despite the Chaos

Just a quick update from our little corner of the world. Chris had his injection on March 2nd. Everything went well with the procedure. Really that feels so long ago since we have been quarantining for what feels like forever now. It is interesting to think how just one month ago, we were at OSU and having great conversations with people (in close proximity) as we were all waiting to get procedures done. That day was full of laughs, stories and updates about how different drug trials were under way for those with SMA.

Then one week later, we start hearing that schools are switching to online classes and preparing for a lockdown. Chris and I decided to keep our appointment for the follow-up at OSU that fell on Friday the 13th. That trip was an interesting one. There was still traffic, but it was nowhere near what we are use to dealing with when we travel to Columbus. While we were there, we learned that OSU had just told students that they had until the 16th to get their stuff out of their dorm rooms. We started to realize that maybe this lockdown situation was getting intense and maybe we should take it a little more seriously.

As far as the injections are concerned, it is hard to say exactly how well they are helping Chris. The tests and surveys he takes during the follow-ups are showing decent improvements with his breathing/lung capacity but everything else is either hard to measure or seeming to be at a plateau.

As I mentioned earlier, there is at least one more treatment that could be possible in the future but we have to wait until the trials are done and they are approved by FDA for adults with SMA. There is another trial in process, or was starting just before the pandemic struck, that is looking into the possibility of upping the dose of Spinraza. Yet at this time, either of these could be on hold and/or take up to 2 years to see if they are possibilities for Chris. So, for now, we continue on the path we are on with Spinraza and physical therapy. Well, we will if we get out of quarantine in time for his next injection.

By the way, we are doing well and are staying home except to go to the grocery store or to pick up some take-out. We are just looking forward to a time when we can get out to see people and go to church onsite again. In the meantime, we will just lean on God and his timing for our future and the eradication of this virus.

God,

We thank you for this drug that has allowed Chris and others like him to stop the progression of their disease. Now our world is dealing with another disease that is affecting so many more people. We ask for your eradication of this virus and healing for those that have contracted it. We also ask that you protect all those in the medical field and those that continue to work (teachers, grocers, custodians, restaurant workers, etc.). Be with us all as we adjust to a slower pace and new routines until this virus is dealt with. Give us the patience and peace that we need in order to get through this. We will keep our focus on you Lord as we navigate these strange times. In Jesus' name, Amen.