Monday, April 8, 2019

A One-Month Update

It seems hard to believe that we have already passed the one-month check ins as part of the clinical trial last month.  Some days, it seems like it’s been so long since we have been to New Jersey, and other times, it feels like we just started the trial.

But one month has already come and gone. After the first 30 days, we switched from two tablets twice a day to one tablet three times a day. Grace can’t swallow tablets, so we pierce them and squirt the liquid into her mouth. And I’m happy to report only one injury when Kyle poked himself in the hand trying to get it open. We consider that a win. 

Also part of the clinical trial, we have to make a set of four two-minute videos and submit them to the study. They include feeding, interacting, bathing and sitting/standing/walking. Although it’s kind of a challenge to do the videos, mostly from a logistics point (two-minute videos take up a lot of space on my phone!), I think it will be a great way to track progress in the study.  

Shortly after Grace started taking the study drug, we noticed more vocalizations, more smiles, more alertness and some trying to move her arms. That was very similar to what other families in the study were seeing, and although those are very small things, we consider them big wins in our household, especially the smiles.

But I did notice another improvement when I made one of the one-month check in videos. Although Grace cannot sit, stand or walk on her own, you have to document that in a video. So, I sat her right in the middle of our loveseat, where her back was supported, but not the kind of support she is provided in her wheelchair. We’ve propped her up there in the past for photos, and I honestly expected she would immediately topple over to one side or the other, which is still probably important to document. However, much to my surprise, Grace sat up for the entire two-minute video, moving her arms and her head just a little as well. She tipped over just after the two-minute mark, and I have to say I was completely shocked. It’s nearly impossible to know if that’s an effect of the drug or just a good day for Grace, but I will always take small victories.

We are especially grateful to everyone who has supported us on our journey with the clinical trial this year. From those who have provided financial contributions for travel or other resources in helping us figure out exactly what we are trying to do, we feel truly blessed. You guys make life great on this Grace-Filled Journey, and I can’t wait to see what improvements the next video might show. 

And while we know this isn’t a cure for INAD, and likely won’t restore Grace’s health completely, we have already seen improvements in her quality of life, which is an awesome win for our family in the fight to #BeatINAD.


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