Our Fight against Gaucher's Disease type 2 or 3
Hannah had her sleep-deprived EEG yesterday. Considering she had woken up at 5:30 am on her own (she was hungry) and I had to keep her up until 1:00 pm, she did pretty well. It was much more involved than the EEG she did at the NIH where she slept the entire time, especially when […]
[Continue reading...]We have had great luck with Hannah drinking her Compleat Pediatric formula in her bottle along. The 4-oz formula, 4-oz whole milk or juice, and stage 2 fruit/vegetable combination has been quite successful. Based on this meal plan at 5 bottles a day, we would use about 75 cans a month. Unfortunately, our insurance will […]
[Continue reading...]We have a lot of stuff going on over the next week or so. Thursday: Sleep-deprived EEG, Vision therapy Friday: Hydrotherapy Monday: Cerezyme treatment Wednesday: PT, OT, BAER study Thurday: Abdominal ultrasound, ENT appt, Speech therapy, Vision therapy Friday: Hydrotherapy, Developmental therapy I think out of all the days, next Thursday is going to be […]
[Continue reading...]http://www.the-scientist.com/article/display/57100/ Print Issue: Volume 24 | Issue 2 | Page 18 By Alison McCook A rare chance Over the course of 5 days last summer, an army of researchers and clinicians examined, poked, and prodded 1-year-old Hannah Ostrea at the National Institutes of Health (NIH). Experts in neurology, rehabilitation medicine, physical therapy, speech pathology, and […]
[Continue reading...]We did it! We accomplished our last step in getting Hannah Medicaid and on the Medically Dependent Children’s Program!!! We satisfied our nursing home stay requirement. We left Friday after the kids came home from school. We made sure Hannah had a good nap right before, a full tummy, and was just as happy as […]
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Today was Hannah’s 26th Cerezyme treatment. Every two weeks for the past year, we have made the drive down to Texas Children’s Hospital’s Infusion Center. For 2-1/2 hours, Hannah is cuddled up against me (usually asleep) while she gets her life-prolonging enzyme replacement therapy treatment via an IV in her hand. We have been lucky […]
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