I've come to realize that one of the hardest things about parenting is that no one can really tell you you're doing it right. People might say you're doing a great job and that you're a great mom or dad, but until your kids are grown and fully functional, you never really know if what you're doing is right. We're in the throes of trying to figure out the best way to discipline/train a bull-headed two year old (that might be redundant). I'm not sure how of all the things that Tera could be age appropriate on, she chose the "typical" characteristics of a two year old, but she seems to be right on track with her peers when it comes to being a pain in the ass at times. Now if you were to ask her grandparents, and maybe even a great-grandma or aunt or two, they would tell you that she's nothing if not sweeter than honey, but Tom and I know better. I wouldn't describe Tera as bad, but she has a devilish streak and is what her speech therapist refers to as "testy" as in, she likes to test her limits. Again, VERY typical of her age, but not quite appreciated by her father and I. I've read over and over how kids with DS are just "so sweet", "docile", and "loving". She can be incredibly sweet and loving, but docile is never a word I would use to describe my daughter. This might be one of those times I wish she fit a little more into that generalization, but alas, Tera is Tera and she is spunky, curious, and even a little spiteful and when she's asleep I can appreciate those qualities a little more than when she's awake.
I've gone through a variety of feelings this particular weekend ranging from self-pity to frustration to happiness to complete and utter head over heels in love with my girl. Right now, after just having rocked her to sleep after she woke up, I can't stand the thought of leaving her tomorrow to go to work. I didn't want to put her down and I'm hoping this doesn't turn into another one of those sleepless Sunday nights/anxiety ridden Monday mornings because of it.
It was a wonderfully low-key weekend in which I actually got a fair amount of sleep, but was not without its hiccups. Our current Tera challenge (besides her two year antics) is poop. To be more exact, a lack of poop. See there are parenting challenges, and then there are parenting a child with DS challenges, and this would be one of them. One of Tera's biggest current health issues is her aspirating. To combat the aspirating (not fix but minimize the side effects) we have to thicken her liquids. There is a corn starch-like additive that we put in her milk and water to help her control it and hopefully help it go to her stomach instead of lungs where it could turn into pneumonia. The other more recent issue is acid reflux which her pulmonologist thinks was being aggravated by one of her nebulizer treatments. She is off that one for now, but to stop her from spitting up regularly she is on Prevacid to help the reflux. She's been on the thickener for about two weeks now and the Prevacid since Monday. The beginning of last week brought a few diaper blow outs and strange diaper rash that eventually cleared up by the end of the week. Then mid week brought the opposite of diaper blowouts culminating in a lack of poop from Thursday morning until this morning.
She had this problem fairly regularly up until last June when she was in the hospital with pneumonia. Coincidence or otherwise, she had little to no problems after that until now. Our best guess is that it is either the thickener or the Prevacid or the combination of both. Unfortunately, we can't take her off either. Tom tried lessening the amount of thickener in her milk on Saturday and she started coughing with the first sip. She also spit up at school on Friday so we are definitely still fighting the reflux situation.
There are few things more frustrating than having a whole new problem present itself as the result of trying to fix two other problems. The best way I can describe the overall situation is this: she aspirates so we thicken her liquids so she doesn't get pneumonia; if she gets a cold or other virus or infection we have to put her on albuterol so we can keep her lungs clear so she doesn't get pneumonia; the albuterol aggravates her acid reflux so we have her on Prevacid, which in combination with the thickener, may or may not be contributing to constipation which can also make acid reflux worse.
She did finally go once this morning, but that is all she's gone and that's all since Thursday morning. Depending on how these next few days go, I may have to call the pulmonologist to see what he says about the combination of things she's on and see if she thinks it's time to call a GI. Not that that will be a difficult appointment to get.
So we currently have a mischievous two year old who can currently breathe pretty well, isn't choking every time she drinks, and isn't spitting up all the time, but who also has only pooped once in four days. Maybe we can find a fix for the constipation that causes pneumonia...