Today was infusion day again. Every two weeks sure comes up quick! I took this photo today, as Hannah laid on a pillow on my lap. During the 2-1/2 hour process, she fell asleep about 10 minutes into the infusion, and she woke up 5 minutes before the saline flush was done. I try to […]
[Continue reading...]Feeding issues…still…is there any hope for a real meal anytime soon?
18 Sep by
Outside Hannah’s vocal cord weakness and laryngomalacia, our biggest issue for her is feeding-related issues. I have to tell you. Trying to feed Hannah by spoon each day, few times a day, is my biggest disappointment. It is still an incredible fight to get her to eat by spoon, and she will still only eat […]
[Continue reading...]Sept 20, Neuronopathic Gaucher Fundraiser – Virginia!
17 Sep by
For anyone around the Fisherville, Virginia, area, please consider participating in this event. This event will DIRECTLY help children like Addison (for whom the walk is named), Hannah, and all the other children diagnosed with Gaucher’s disease, types 2 and 3. You can find complete details here, but are some of the details… Amanda Bower […]
[Continue reading...]Keep trudging along
16 Sep by
I ended up spending the night in Hannah’s room last night. I wanted to be closer to her if she had any more choking spasms in the night plus I wanted to give my husband a break and get some sleep. Little did I know that he kept the monitor on anyway just in case […]
[Continue reading...]Here’s to hoping it’s just a baby thing!
15 Sep by
We saw Dr. B. this afternoon. After checking out her lungs, throat, ears, etc., he found nothing more than a dull ear infection. However, she did have enough nasal drainage to replenish a river! Since she never turned blue during these night episodes, it is very likely it is her choking on the drainage (being […]
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