Odds and Ends

I realized that I never updated on how the auction did! We were able to raise $2310 in the end, and had some fun bidding wars! Thank you to everyone who participated and helped us to raise funds to help with Raul's medical expenses!

In other news, Raul is both doing really well, and sort of poorly at the same time. After his last hospital stay something just seemed to click for him, and he really came into our world! He has learned a few new signs, and even signed a two word sentence for us this week! He has also learned how to wheel himself in his manual chair, and does a great job at it. He is pointing with his hand, and imitating all sorts of words and sounds. He knows cow and duck sounds. He has just made so much progress developmentally in the past few weeks!

On the medical front, he hasn't been doing great, but is still home and out of the hospital. Before his last hospital stay he was having very low urine output, which resolved in the hospital with lots of IV fluids, but started again a few days later. Not sure why this is happening. He has also been gagging/retching/choking/coughing a LOT, and spitting up lots of mucous. He was up most of the night multiple nights in a row with these problems. We thought he had a stricture causing him to not be able to swallow, but after a test today we learned that he does not have a stricture but is not swallowing properly and aspirating. During the test the techs gloves sheared a patch of skin off the left side of his jaw, and his hand was blistered due to having to hold him down.

This morning he woke up with not much of a voice, and what was left was very high pitched. This is likely due to inflammation/irritation in the airway, which isn't good. He is being referred to an ENT, but in the meantime we just have to watch him for any signs of respiratory distress. I talked to his team in CO quickly, and it sounds like he may need steroids if it continues. They also said there is a chance he could still have a stricture that was too high up to be seen in the swallow study, or that his throat/esophagous is painfully blistered causing him not to want to swallow. These things could be seen with a scope, so we will find out if that is necessary next week. I am hoping that his CO team will talk to his team here since they are EB specialists.

Hopefully we will get more insight into these issues before we go to Orlando for the EB patient care conference at the end of July! We are excited to meet other families and hear their stories, as well as learn from all the wonderful speakers!