Most importantly and despite all the challenges, we are SUPER happy to have Alice home and to be together again. I truly can't imagine what it might be like if Tyler and I didn't have each other to tackle our daily challenges. Again and always our hearts are turned to YOU who have made our life possible to manage.
Okay, here's what is happening. Alice is getting around much better...up and down stairs, running, playing, wishing to eat and loving being home. She has a VERY long road ahead still. We are finding new challenges as the days pass, also we are overcoming little pebbles along the way which are worth celebrating.
Our major struggle presently continues to be her gut. For unknown reasons her stomach isn't emptying into her small intestine and so forth. We consistently discuss the possibilities and causes but nothing has surfaced, causing us to still question and wonder what to do. The doctors aren't sure, but continue to encourage us with patience and time.
Alice returned to clinic on Thursday Jan. 30th. We learned that she needed blood. This was unexpected, which made the day long. Good News---her CMV reported undetected, labs have been known to be inaccurate in the past so I wasn't going to celebrate...I requested a confirming lab to be drawn. The confirmation lab paralleled the first. YEAH!! The doctors told us to cut back the gangcyclovir infusion to twice a day. This will allow all of us a bit more sleep. Her zoster virus shows a slight detection but nothing to fuse over.
Counts Jan 30th:
Friday Jan. 31st. We called the doctors because Alice will vomit up to 12 times a night and several times throughout the day. Her nausea has always been bad, but this is obviously not right. We requested that we stop the TPN (IV nutrition). Immediately she stopped vomiting all together at nights, once the TPN was eliminated. Alice still vomits during the day on average 2-6 times. It is very tricky getting all her oral medications to stay down between such nausea. Currently she is taking between 10-12 oral medications, in which some are 2-3 times daily.
Clinic on Monday Feb. 3rd. Doctors have gone back to neupogen everyday because her white count dropped. Her liver function labs are elevated...not sure why. Tyler and I think it is due the TPN. All the while she is taking a TPN holiday she is still on IV fluids to keep her hydrated and in balance.
Counts on Feb. 3rd:
Alice will go back to clinic on Thursday Feb. 6th. Hopefully her CMV level will be better. She is such a cute little trooper through all this.
|First time on the ice|
|The mask was her idea of course|
|She ate half a kipper snack in clinic and for the first time in months food stayed in her tummy...looks like kipper snacks are the key.|