We met with the ECI speech therapist. Jenny, our developmental therapist and Hannah’s biggest supporter, came to the meeting as well. After Jenny and I answered the STs questions about where Hannah is out now, I realized that she doesn’t have the cognitive skills for real communication yet. She really is only at a 6- […]
[Continue reading...]10/26, Golf Tournament and Auction, San Jose, CA!
16 Oct by
Coldwell Banker Residential Brokerage will hold its 13th annual Gregory Austin Macres Memorial Golf Tournament on Oct. 26 at the Palo Alto Hills Golf & Country Club, 3000 Alexis Drive. Registration is $135 and is open until Monday. A raffle and silent auction will also be held at the event. The event is a fundraiser […]
[Continue reading...]Proof that Cerezyme is working!
15 Oct by
Hannah had her fourth Gaucher marker bloodwork done a few weeks ago before her Cerezyme treatment. We have been seeing definite improvement in her Gaucher biomarkers, and now that we are 9 months into Cerezyme treatments, I got the following email from her genetics doctor: Gaucher monitoring results from Sept 2009 were good and improved […]
[Continue reading...]ASDs, PFOs, and aortic dilation, oh my!
14 Oct by
Hannah did fantastic yesterday during her echocardiogram and EKG. They did end up sedating her using an oral sedation (she did NOT like the syringe in her mouth, my control-freak child). She woke up out of the sedation really well, and she was fine for the rest of the day. They warned us she might […]
[Continue reading...]Time to deal with Cardiology and Hannah’s ASD
13 Oct by
Tomorrow we start Hannah’s workup for her atrial septal defect (hole in the heart) that was discovered when we were at the National Institutes of Health in July. It “most likely” has nothing to do with her Gaucher’s Disease, but we need to deal with it anyway. She is having a sedated echocardiogram tomorrow morning. […]
[Continue reading...]A huge (and messy) step forward!
9 Oct by
I wish this phone pic came in clearer! Hannah has been making such quick and huge strides in terms of her eating issues recently. Actually, it has been progressing over the past few weeks, but tonight was a huge leap forward. We still have made very little progress in the feeding-by-spoon issue after all of […]
[Continue reading...]
Latest Comments