We wanted to provide an update on our most recent appointments at Ruby Memorial hospital.
Alexander was scheduled for his first swallow study. His doctor wants to make sure that he is swallowing effectively and not leaking, or aspirating, into his lungs when he eats. It also provides us with a baseline to compare any future tests with.
The swallow study was done as a modified barium swallow. We fed him cookies and pudding, as well as a drink, all mixed with an agent that shows up on X-ray. As he chewed and then swallowed, she watched the food move along on the X-ray. It was a bit of a struggle to get Mr. Alex to eat while sitting in the machine. He still has high anxiety in hospitals and it took him a few moments to calm down enough to eat.
We were relieved to discover that he was swallowing correctly and there wasn’t any evidence of food entering his wind pipe or pooling in his throat. We know that Alexander’s disease is degenerative, so those muscles and nerves will be affected eventually. When we notice him choking or having chest infections, we will go back for another swallow study.
We also met with the Gastroenterologist to follow-up on Alexander’s weight. At our last visit in September of 2016, Alex’s weight was below normal. While his lean muscles will ultimately make him weigh less, he was still a little too lean for the Doctor. At this visit, we were excited to find out that he has gained a good amount of weight. Enough to put him in the bottom end of normal for his age/height.
We were thrilled with Thursday’s findings and hold out hope that he can stay strong until we can get access to this new medicine, Spinraza!