Hannah’s swallow study at the NIH at 11 months old Today was Hannah’s 5th swallow study.  The first three swallow studies she had passed.  The fourth one, which was done just 2 weeks after being trached, she failed.  Because the choreathetoid movements were so involved and intense, she had no suck or swallow capability. We […]

This trachiitis has really done a number on Hannah.   We are about 4 days into the Cipro, and it has definitely started knocking out the infection.  She is a lot less junky, and she is sleeping through the night much better now.  Last night, the earliest she woke up was 3:30 am (instead of […]

We had a fantastic visit with the developmental pediatrician.  I was incredibly impressed that she had thoroughly researched Gaucher’s disease beforehand and that she asked tons of questions, some that no one else has asked of us before!    We were with her for almost an hour as we discussed almost every aspect of Hannah’s health […]