Our Fight against Gaucher's Disease type 2 or 3
We are in Vegas, baby!! When the TCH transport crew came to pick us up at 7:30 am, I had the biggest grin on my face! I was so excited to see them that I think I was talking much faster than normal and could not stop smiling. They loaded Hannah up on the stretcher, […]
[Continue reading...]It is now 5 am on Saturday morning. Hannah fell asleep (as did I) at around 9 pm, and she woke up at midnight. Her nurse and I got her back to sleep a couple of times, but that lasted only 10 to 15 minutes. I have been up since midnight. Barring any emergencies […]
[Continue reading...]Yes, we are still in Texas. Why you ask? Because the plane had to be taken in for maintenance today, so therefore we are “scheduled” for tomorrow (Saturday) to be transferred to Vegas. I say “scheduled” loosely because I got my hopes up to be leaving this morning, and found out about noon yesterday that […]
[Continue reading...]Hannah got a decent night sleep last night, finally! She fell asleep at 5:30 pm (as did I), and she slept off and on for about 8 hours within a 10-hour period! That is the best sleep she has gotten since we have been starting to get her off sedation! And even right now, […]
[Continue reading...]Lots of phone calls were made back and forth between the Vegas hospital and TCH. How do I know this? Because all conversations seem to take place at the nurses desk outside Hannah’s window! Unfortunately, I couldn’t make out details of what was being said, but it was definitely about the transfer. I’m hoping Thursday […]
[Continue reading...]It is almost 10 pm here, and Hannah has been asleep for 4 hours – hallelujah! That has been her average amount of sleep for the past few nights, even with the addition of benadryl (which we are stopping because apparently that causes urinary retention when used with other certain meds). It is such […]
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