November 12th. That was the day of Hannah’s skin biopsy. They said the skin biopsy could take about a month or so to grow out the cells so they could be tested for NPC and the other lysosomal storage diseases on that list. It has now been over 6 weeks since the biopsy, and I’m a bit freaked out. Once the cells get sent off, it will be 2 to 3 weeks before we get those results.
It is like a double-edged sword…I definitely want to know the results of the testing. But I don’t want to know them if she indeed does have Niemann Pick type C or some other terminal disease. I still just can’t believe that she could be that sick, you know?
On a separate note, she has started this, I don’t know what you would call it, but this “sleep crying” during the night now. She will be quietly sleeping, and then she starts this crying look on her face and cries out for about 20 to 30 seconds, sometimes a bit longer. I don’t know if she gets a pain when she sleeps or if she is having a bad dream, but it is happening more and more often now, at least 3 or 4 times a night. It has already happened twice tonight, and it isn’t even 11:00 PM yet. I don’t know if this is something to worry about or not. I’ll bring it up with her pediatrician on the 7th.
6 weeks post biopsy and sleep crying
28 Dec by
Hey, thanks for stopping by my blog. I read up your little cutie Hannah; what a peanut. I pray you have some good news.
You know…. the sleep crying might just be night terrors. Liv went thru stages of that.
You know, the sleep crying might be normal. I recall all three of mine doing that at various stages — I seemed to notice it more when they were first sleeping in their own rooms. I’d hear them cry on the monitor, run in to soothe them and find them sound asleep by the time I got there. Definitely worth asking about though.
Carrie, both Harrison and Isabella did the sleep crying thing, so while I know it is heartbreaking to watch, it seems to be a fairly normal thing.
As always, you guys are in my prayers.
My son was born the same day as your daughter. I sent you a message on cafe mom, but I wanted to tell you that my son does that crying thing, too. For him, I think it is his teeth or growing, because when I notice him doing that alot at night, the next day his pants get shorter!
Hope you will hear some good news soon about your precious girl. May you find the strength to go through all the uncertainties of life.
Hope you will hear some good news soon about your precious girl. May you find the strength to go through all the uncertainties of life.