There is so much to talk about, but I just don’t have the real desire to do so right now. I will most likely elaborate at a later date, but I want to make sure that I put it here so that I remember to do just that. Audiology appointment yesterday was fine. Hannah’s peripheral […]
[Continue reading...]Vocal Cord Paralysis
7 Jul by
I know, there is so much to update on, but I think I can only handle talking about one thing at a time today. We had Hannah’s followup with her ENT. I shared with her about Hannah’s hyperventilation episode as well as how she gets out of breath when being very active. We also […]
[Continue reading...]Positive thoughts for Gage…
6 Jul by
I met this mom a couple of months ago online. Her son, Gage, suffers from Wolman’s disease, another lysosomal storage disease, that is even more rare than neuronopathic Gaucher’s disease. Gage had a stem cell transplant a few months ago, and he had seemed to be doing well. Unfortunately, he has become very ill, and […]
[Continue reading...]Gearing up for a manic Monday
3 Jul by
Thank goodness Daddy has Monday off because it is going to be a crazy one. Monday morning, Hannah has an appointment with the audiologist and then her ENT doctor, Dr. Larrier. Originally, it was scheduled a couple of months ago just as a follow up for her ear infection, but now it is going to […]
[Continue reading...]Why Hannah?
1 Jul by
There, I said it. I’m not really the pity-party type of person, but today it just all seemed to hit me. I think the combination of seeing how hard Hannah works in the therapy videos I uploaded last night to Facebook plus seeing her chest retractions when she really gets upset and worked up or […]
[Continue reading...]Pop goes the Wiggles and Hannah goes Pop!
1 Jul by
Hannah loves, loves, loves the Wiggles. I mean, Sam Wiggle comes on, and she giggles and smiles like a little schoolgirl! There is one part on her Pop go the Wiggles DVD that she absolutely loves more than any! She gets wildly excited when she sees it. LOL
[Continue reading...]
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