We met with Dr. Schroeder, Hannah’s new ENT today. I immediately liked his business-like, yet easygoing demeanor. We talked about Hannah’s situation, why she was trached, what happened when the trach came out (breathing wise), etc. We talked about how Gaucher’s disease causes airway issues in many of its type 2 children and some type […]
[Continue reading...]Is Hannah worth a few clicks of your time?
2 Sep by
During the entire month of September, I will dedicate my time to raising awareness for all children who suffer from rare diseases and have no treatments or cures in sight. According to the National Institutes of Health (NIH), there are approximately 7,000 different rare diseases affecting approximately 15 million children in the United States. This statistic […]
[Continue reading...]Needing Hope
1 Sep by
I’ve been feeling a bit down since the meeting with the pulmonologist last week. It was not just that incident, but it was the straw that is starting to break my back. Just a reality check upon reality check upon reality check. Hannah’s disease is progressing. She has developed ‘acquired nystagmus’ (horizontal involuntary […]
[Continue reading...]Horrible appointment today…
26 Aug by
We had our meeting with the pulmonologist today. I knew from Daddy’s meeting with him 6 weeks or so ago that this doctor was going to be very conservative about the talk of getting rid of the trach. So I came into the appointment with the mindset to just have him understand our point […]
[Continue reading...]Oops, she did it again…
25 Aug by
So Hannah was playing with her toys, and her nurse (who we really like) was sitting just about 5 feet away. At some point within a 10-minute period, Hannah completely pulled out her trach again. The nurse didn’t notice because Hannah wasn’t having any breathing difficulties and her back was turned to the nurse. […]
[Continue reading...]The always nagging “trache” question
22 Aug by
It is no surprise to my friends here that I absolutely HATE the fact that Hannah had to be trached after this past hospitalization. We had been able to avoid a trach since she was 8 months old and then she had to be trached, NOT because of her Gaucher’s disease, but because she could […]
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