Quick Update

Hello all! Just wanted to give a quick update on Chris and all that is going on.

A couple of weeks ago we went to Columbus for Chris’ eleventh maintenance dose of Spinraza. There was a little bit of pain during the procedure and a little neck soreness for a day or so after it. We have been back to Columbus since for a basic clinical visit. Chris is maintaining his strength, which is good considering in the years prior to Spinraza, he was continually losing his strength. There was a bit of information that was gathered that shows his breathing was 1% better than last year’s information. Yay!

On the chair front, we are still working on getting it ordered. We had hoped it would be here for the summer so that we could spend time outside getting use to it, but that doesn’t seem to be the case. Maybe it is a good thing since we want to do a little bit of traveling this summer. It might have been harder to travel and get use to a new chair.

As far as traveling goes, we are testing something soon to see how it works for sleeping in a hotel. We’ll update if it works and maybe a travel blog/vlog will be next for us. 😊

Well, that’s all folks. We hope and pray you all are doing well and would love to hear from you. Send us a message. Matter of fact, if you have any questions about this adventure we are on with Spinraza and/or SMA, leave a comment on the site or on the post we share it on. We’ll get back with you or maybe we’ll write about it in our next post. Hope to hear from you soon!