Our Fight against Gaucher's Disease type 2 or 3
I have met so many wonderful families with children diagnosed with Gaucher’s disease types 2 and 3. Some children that we have lost like Ethan, Kyle, and Niama who have never left my heart, and then there are others still fighting like Addy and Olivia who I have become so attached to that I […]
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After many months of waiting, Hannah’s stroller-wheelchair is finally here! It is the Otto Bock Kimba Spring, and it is a work horse! It offers her so much support and comfort that she was able to sit in it and play for two hours collectively on the second day we had it! Definitely […]
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Huge, huge milestone birthday today. Number three!!!! Hannah had a really rough night of sleep (or lack there of, I should say), so I was able to be the first person to sing her Happy Birthday…about 40 times! Hannah, my beautiful little girl, you are my heart, my soul, and have given me more gifts […]
[Continue reading...]We have been slowly decreasing Hannah’s Klonopin for the past few months, since the beginning of May I think it was. We dropped down to 1.5 mL three times a day earlier this week which was about a .5 mL per day drop. Coincidence or direct result, we don’t know, but we have seen some […]
[Continue reading...]As I am watching Hannah sleep in her bed next to mine, with her humidified trach collar going full force, I am in love with my little amazing fighter. It was last July 18th, 2010, that Hannah was released from the hospital for the last time. With the exception of ER visits for multiple […]
[Continue reading...]We just got back from Hannah’s neurologist follow up appointment. It was our first appointment with him since we started decreasing the Klonopin in May. He was very happy with seeing the change in Hannah’s attitude, balance, and her regaining of some of the skills she has lost (such as rolling over, trying to […]
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