Her EBV (Epstine Bar Virus) levels are up. This is something 90% of adults have by the time they're 40 and in normal people it's usually just a rougher flu and can occassionally lead to mono but in an immunosupressed person there can be more severe complications. Shayna's numbers are in tier II of a four tier system so, while her Predinose was lowered Monday from 7.5mg to 5mg as a natural wean, we lowered it again to 2.5mg on Wednesday (it takes 2 days for the EBV levels to come back) to give her immune system a chance to try to fight the EBV. Right now we wait and see where the levels go over the next few weeks and we'll deal when anything else if and when it happens.
We continue to struggle with normal parenting things like sleep, or lack there of. I finally moved to the master bedroom with Nahum on Monday and enlisted his help with night-time Shayna calming. When she sees me, she expects to nurse for comfort and gets pissed if I don't so if it's been less than 3hrs we now send Nahum in to help her get back to sleep. Last night all three of us finally had a decent night sleep and I got a full 4.5hrs of uninterupted sleep and Nahum only had to calm her once (though it was a rough one). We're also working hard on a strict nap schedule and bedtime routine. So far, she seems to be responding.
Speaking of napping, she just woke and is calling. I'm going to take her swimming today so I better get going so we can work all of our stuff in before nap time #2.
Isn't it sad when you consider only 4.5 hours straight to be part of a good night of sleep??? :)
ReplyDeleteHope the EBV levels go down. We want to see more smiling Shayna pics!
We are hoping the EBV levels come down. You are doing an amazing job trying to balance all the aspects of caring for Shanya. Get some rest!
ReplyDeleteYOU ALL ARE INSPIRATIONAL. lOVE, MELINDA
ReplyDeleteGood to hear Nahum can calm her down. Also good to hear you're getting stretches of a bit of decent sleep. Sleep is just what you need for more normal functioning. Carole
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