Hannah is still well on her way on the road to recovery. Feeding-wise, we have finally got her feeds up to 170 mL/hour (a bit less than 6 ounces). She was at 200 mL/hour before her bout with the rotavirus, but we ended up having to go back to 40 mL/hour continuous feeds just […]
[Continue reading...]“Amazing!”
28 Jul by
That was the term Hannah’s neurologist used when saw what a change Hannah has had in her neurologic issues, chorea movements, and physical demeanor in the two weeks since we had seen her. We had thought she had improved quite a bit in the past couple of weeks, but hearing a medical professional, especially […]
[Continue reading...]Venturing out
26 Jul by
Today was a good day. Not only was it Hannah’s birthday, but it was also the birthday party of her cousin who lives here in Las Vegas. Originally the plan was to just let my inlaws take the kids to my nephew’s party, and we would stay home with Hannah and the nurse. Hannah had […]
[Continue reading...]Happy 2nd Birthday, Hannah!
25 Jul by
My dearest Hannah, Today, July 25th, we celebrate an amazing milestone, your second birthday. From the moment we got your diagnosis at 5 months old, we were told our time with you was going to be very limited. We were told that you possibly would never see your second birthday because rarely does a child […]
[Continue reading...]Real signs of recovery
24 Jul by
Hannah has been a much different baby in the past few days. Maybe it is because she is finally off all the sedatives and only on her movement disorder and seizure meds (Keppra, Klonopin, and Haloperidol). Maybe it is because she is finally feeling better overall. Maybe it is because her movement disorder seems to […]
[Continue reading...]Where did Mic-Key go??
22 Jul by
Hannah still does not have a normal night schedule yet. It is getting better now that she is weaned off her sedations (as of a few days now), but she still wakes up around 2 am to 3 am every night and is awake for a couple of hours before one of us bring her […]
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