Medical Update

Crewe grows stronger and more stable every day. As long as he has the trach he will never fully be out of the woods when it comes to risk of infection, but we feel like his most delicate stage has passed. Here's the latest:

1. Speaking Valve. The valve arrived a couple of weeks ago and we work with Crewe daily on it. It's much more difficult than we imagined. It's just not a natural feeling for Crewe to exhale out of his mouth and nose instead of the trach. As a result, he swallows the air and that leads to some serious coughing and burps (Cal thinks the burps are SO funny; he's such a boy!).

2. Milk Allergy. Last weekend we accidently fed Crewe baby food with milk in it. Who knew that the Beechnut brand of Sweet Potatoes and Turkey would contain heavy cream? Yeah, in a food that is labeled for babies 6 months old! The company is going to get an ear full from me. His response was immediate and very scary. Let's just say we are glad he had the trach because we could have easily had a serious airway problem and amubulance ride to the hospital. A visit with two of his doctors and a steriod got the problem under control. It's soy all the way for the near future.

3. Therapy. Crewe has four therapy sessions every week: two speech, one physical, and one occupational. We are really getting see positive results from the weekly sessions. Physical therapy has helped Crewe to sit up straight and better control his neck and breathing. He LOVES the exercise ball.

4. Sclerotherapy. There are no sclerotherapy sessions planned for the near future. The MRI he had in February indicated that most of the cysts have been addressed and the remaining swelling is due to abnormal tissue. We're in a wait and see phase right now.