Life can sail along quite predictably and the sun is shining, the sky is blue, the clouds that come along once in a while never really blot out the sun and they pass quickly and life is good... You've known the rains would come but you've been enjoying the dance in the sunshine, perhaps all the more because of the knowledge that the rains WILL come, hopefully without wind, but likely at least with a breeze now and then. And all of a sudden you come to the realization that the clouds have become more frequent, and larger, and the sun only peeks through now and then, changing your weather forecast to "mostly cloudy" instead of "partly cloudy." With dismay, you realize that there is even a chance of rain...with the possibility growing ever larger. And then you notice it's overcast, with no sun showing at all and you have to learn a new dance...the dance in the rain.
This week has been like that... As I mentioned in the last post, Allison started a new medication, Naltrexone. Unfortunately, this one is not compounded to make it child friendly and that creates a new challenge. She has bravely taken "yucky" medicine for a very long time, but this stuff really trumps it all. It's meant to be taken as 1 pill, swallowed whole, and definitely NOT meant to be tasted! (I taste all her medicines, just to see what she has to put up with.) Because of her smallishness, she is to take 1/4 of a pill, which exposes all of its wicked flavor...and I mean evil! If you could taste evil, this would be the flavor, I'm convinced. Think of the bitterest cucumber you've ever encountered and MAYBE this X50 would come close to how nasty this stuff is...more like the stuff you use to get your child to stop sucking their thumb X10... Idk, but it's AWFUL. And she has to EAT this every night before bed! We try to disguise it every way we know how, but the poor child fights and refuses every time, until she finally works up her nerve, shudders, and puts it down. I won't even tell you what it looked like last night, but it was heart-breaking. This is one of the medicines we will be DELIGHTED to throw IN THE TRASH and say good-bye to after transplant!
I realize how tough these little sweethearts are, who have to suffer. I would be a complete wimp. Alli cruises around, most days, playing with the children and acting like nothing is wrong. This last week has been a little different story... She simply is not feeling as well, and it's becoming impossible for her to override. She has become a little slow to respond - as if she's in a bit of a fog. (Was that in the forecast? I missed it...) She has spent a lot of time lying on the floor with her blanket, looking like she is tired but saying she doesn't want to take a nap. When I rock her, she just sits and stares - tired but not sleepy. In a few minutes she wants to get down and play, but before long she's back on the floor. It's the cycle of her day. She doesn't eat much at all any more (didn't know LESS was possible, but I guess it is) and we have doctored up so much of her food that she has no clue what normal food tastes like. So...I backed off a bit. And she has picked up eating a little more, not enough, but every bite counts. We sneak in the additives when we can, and if we can't, we shrug and say, "Well, at least she's eating!."
So many little things can eventually break a parent's heart... After her shower the other night, she was distraught over the way her pajama shirt did not fit. Her tummy is finally so large that the shirt simply could not go around it and we had to suggest that she find a different one or even a different style that would work. We dug through the drawer and she wistfully looked at the discarded favorite on the floor before accepting the second selection.
Recently we were at a friend's house with another couple with 2 little girls. They were having a blast sliding down the stairs on their bellies...Alli stood at the top and looked on as they flew down. She finally cried because she wanted to go down too, but she couldn't. She had tried it at home a few days before, after watching Dillon do it, and it hurt. Getting up onto her chair at meal time...hanging over the counter to wash her hands by herself...are a few things that are hardly possible for her. And she's 3 and 1/2 and wants to do it herself if she can! Her belly is tight and huge. She'll tell me sometimes that it "hurts her liver" after she has tried something that ended up being painful to her tummy. Her arms and legs are getting dreadfully skinny, so that we have to be careful how we pick her up. She just doesn't have enough fat on her bones to cushion her much.
Okay, this is a really negative post! I'm sorry! It is overcast, with a chance of rain... But I also believe rain is refreshing, as long as it is just rain and not a thunderstorm in which the lightning starts a fire! I suppose even that can be beneficial, after the devastation is cleaned up. I know there is hope...new life is on the horizon...only 14 days...Lord willing...