Michelle over at 5 Minutes for Special Needs wrote this great article, and even though Hannah isn’t considered “medically fragile,” there were some very good tips for us in there since her diagnosis is so rare and most doctors don’t know what to expect with it. Also, worst-case scenario, she may need a trach to breathe. I […]
[Continue reading...]Are we being irresponsible parents?
7 Mar by
At the fundraising meeting a couple of nights ago, a good friend brought up that they were worried about us financially, and they felt that the fundraiser should be focused on Hannah and not on raising funds for research. They also felt that people would be more willing to donate to a family instead of […]
[Continue reading...]Gaucher Disease swallowing problems or texture issues?
7 Mar by
When Hannah’s OT suggested a swallow study, it didn’t make me nervous at all. Because of everything else she was doing okay, I really felt that it was likely just another “Hannah” issue and not GD23 related. I mean, they were concerned that her laryngomalacia (poor throat tone) was GD-related, but it turned out to […]
[Continue reading...]Swallow Study and Occupational Therapy
6 Mar by
Today, Hannah had her occupational therapist come to visit to work on her solids eating, as we have made very little progress in that area. It worked out perfectly, as Hannah was fed 3-1/2 hours earlier and JUST woke up from an hour-long nap. After M’s last visit at our house (Hannah would have nothing […]
[Continue reading...]National Gaucher Foundation, thank you!
6 Mar by
Even though the National Gaucher Foundation‘s focus on awareness and fundraising is for type 1 (the foundation was created by a mom of a type 1 child), they have gone above and way beyond anything I could have ever hoped for in terms of trying to create awareness. I had just asked if they would […]
[Continue reading...]Our first fundraising meeting!
6 Mar by
I’m so grateful for such wonderful neighbors, I tell ya. We had an informal meeting tonight (6 of us) to talk about putting together a fundraiser for Hannah. I will admit, I felt overwhelmed and incredibly humbled with all of these amazing ideas they were coming up with and willing to do for us. They came […]
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