Friday evening the 28th of February Alice came home from the hospital. She was there only three days, which was a nice surprise. We weren't sure what to expect with her and the Croup. Thankfully she recovered well and quickly with little intervention.
|A regular position for Alice.|
|Ready to go home...thanks Emily for sending us on our way.|
It's been a long rough recovery...her tummy is trying so hard, but struggling. She sometimes poops a dozen times a day, and vomits plenty. At one point we decided to just simplify things and remove her diaper, put her on the little potty and move her around the house as needed. She could "go" whenever and give her little bum a break from diapers and increased rashes. The picture below might be a little too much but someday it will be appreciated for what it's worth. The hard part was trying to eat a decent meal while her business was going on next to us. It didn't take long before it made us all giggle at the reality of the situation. I will admit it did require a little focus on my part to pretend the smell wasn't affecting my appetite. The kids cherish dinner time, as they each take a chance to tell about their day. Don't be mistaken, eating around the dinner table doesn't happen every night, as often as possible though.
March 4th, Natalie had a 4 hour long psychology review in Salt Lake through the neurology departments psychologist Dr. Burr. We hope to learn and understand more as to how her brain processes information. Long day for Natalie. I was thankful that Tyler took her, I wasn't feeling up to it.
Clinic today (March 6th) went well, no infusions required...just the typical labs and medication review. Tomorrow we will learn if her CMV levels are finally low enough to take her off the IV ganciclovir, which contributes to her suppressed counts. Crossing our fingers! If not, she will go another week on ganciclovir before we check her CMV level again.
Good news...liver function tests have continued to improve. We know it's because of the TPN (IVnutrition), why they had been so high; glad we are past that point and pray that we can continue to avoid TPN.
|Clinic days...this is my version of a time laps :) I know it's boring!|
Alice keeps asking us, "What's wrong with my tummy?" and "When am I going to get better?" I can't imagine being nauseous all day for months on end. I was explaining to her that her food and drink needs to learn how to leave the stomach and go to the intestine, it has forgotten and needs a little help. She said, "I know what's wrong....it can't see where it's going, maybe if my stomach had a light the food could see where to go." Later I found her with a flashlight, shinning it down her mouth. Oh Alice, I want to make this all go away.
We have been working hard to make homemade bone broths and all kinds of foods that help the gut heal. It seems to be helping! We saved out one of the wish bones for the kids to enjoy breaking. Matthew and Blair claimed the wish bone. I told them to think of their wish but not to tell. Matthew ended up with the bigger half and of course they told me their wishes. Matthew wished for Alice to be all better and sweet Blair had secretly wished that Matthew could have any wish he ever wanted. So for Alice, not only are WE earnestly wishing you well, but many many others who know you or know of you are too. It will happen....it will happen!