Our Fight against Gaucher's Disease type 2 or 3
We had noticed for the past five or six months that Hannah’s mobility and balance had significantly deteriorated to the point where she could no longer crawl, sit, or even roll over onto her stomach (or back). We chalked it up to the progression of the disease. She was spending a lot of time […]
[Continue reading...]The kids have been home for almost two weeks already, and so far, so good. I was really looking forward to the kids being home this summer so they could spend more time with Hannah. Daddy and I felt it would be good for them since she is still very receptive to them and […]
[Continue reading...]Beautiful little Emilka from Poland lost her battle with type 2 Gaucher’s disease. She was just 14 months old. I emailed with her mom a few times. She is an incredible advocate for Emilka. Breaks my heart.
[Continue reading...]We took Hannah to her GI doctor today. Just a follow up, as her stomach issues have been pretty under control for the most part. As he was asking me questions, we did uncover that she has been getting more constipated lately (sometimes going 2 or 3 days between poops) and that her reflux […]
[Continue reading...]Since Hannah is going to be turning THREE years old in a few weeks (end of July), she is going to be aging out of Early Intervention services. I cannot believe how much time has flown! Now the decision has come whether or not to put her into school or have her schooled at […]
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Hannah and I are well on the way to fully recovering from her trachiitis and my viral meningitis/exhaustion. I’m feeling better than I have in months. It helps that I make a point to get at least 6 hours of sleep at one time instead of 2 or 3 2-3 hour naps. Hannah too […]
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