I was watching a show on TLC about lottery winners. It put me into a dream state wondering what I would do if I suddenly had millions of dollars. What would I do? By a decent-size house with decent-sized rooms for the kids, a loaded therapy room for Hannah, an office for me […]
[Continue reading...]Ramping up on therapy
20 Mar by
After our meeting with Dr. Raja, Hannah’s new neuro, we feel really motivated to start ramping up on Hannah’s therapies. Even more so Friday after our quarterly visit with our early intervention physical therapist. Right now, Hannah only has PT out of the house. We had discontinued OT because for 8 weeks straight, […]
[Continue reading...]Knight Rider Festival Fun!
19 Mar by
Friday evening, our family was invited to join in the fun at the kick-off at the Knight Rider Festival here in Las Vegas this weekend. We were thrilled to support this fundraiser, as we have directly benefited from the Children’s Miracle Network. The festival was produced by the husband of an amazing mom I […]
[Continue reading...]Sharing and teaching
19 Mar by
On Thursday, I was invited by the Patient Advocacy team at Genzyme to share Hannah’s story with all of their case managers and patient liaison representatives. I was incredibly honored that they felt so strongly that more recognition and differentiation needs to be made for families with children with Gaucher’s type 2 and type 3 […]
[Continue reading...]Faces of Gaucher’s Disease
15 Mar by
When I started Hannah’s blog back in 2008, this was the only blog or updated site regarding neuronopathic Gaucher’s disease. Since then, and thanks to the popularity of Facebook causes, more and more family’s are sharing their fight against nGD. I want to invite everyone to visit their sites, see their beautiful faces, and join […]
[Continue reading...]Simple touch
15 Mar by
She lies next to me in bed. Sound asleep. I’m on “night duty.” I have spent hundreds of hours just gazing at her while she sleeps, holding her hand, caressing her face, kissing her. I love the way that she grasps my hand even when she is asleep. She is having some mild seizure activity […]
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