Things were beginning to get a bit scary right before Gary’s most recent Vyvgart treatment. We were seeing symptoms we hadn’t seen since diagnosis: difficulty holding his head up and eyes open, very tired, difficulty thinking and processing information, chewing and swallowing issues. In fact, the night of the 5th he almost bit his tongue in two trying to eat dinner. Looked like a murder scene! Thank goodness June 6th arrived and he received his first of four doses. This will be his second series. So far his ADL score has improved from a 17 to a 10 which indicates improvement. We are looking forward to seeing that number continue to go down as he receives the next 3 doses.
We are currently looking to find an infusion center that is not only closer to our home but also has the ability to get Gary in quicker for treatment when needed. We knew when this journey began, the only way to successfully get through the ride was to have God as our pilot. He has lead us in all the right directions…doctors, education, and treatments, and I have no doubt he will open the right doors for this.
As I have mentioned before, Gary takes a multitude of medications. He has two holders for these medications…one for morning/night doses and one for what we call his every 3 hour pills. I will include a picture of the second one as it has made life much simpler.
Heading to the “beach house” this weekend. Am sure card game cheating will take place along with golf cart rides! Life is good, and as Gary always reminds us…
He….is…blessed
i am blessed 
So very thankful for all of the positives that have brought y’all to this point, even the simple things like medication organizers that help make it just a bit easier to manage. Praying hard for the continued successes, for being led to where you need to be, for strength on the days it gets overwhelming, and always always for the ability to find your happy in the midst of the storms.
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