Listening to my little man singing in his bed. Dark, clouded, winter day. Another day watching out for my kin. I spent the morning with Jack mixing up some
scrumptious dark chocolate gluten free cupcakes to freeze, so that Parker continues to have ready, fresh cupcakes on hand for parties at school when everyone else is having cake, cookie cake or cupcakes. It has been the best idea and work I've ever put forth! This batch turned out even better than last batch!
I'm thankful I have this time at home to squeeze in a batch or 2 of something (of course while messing with Jack..or
more so..he messing with me!). I realize my time at home will come to an end and I too will be back at work. Just trying to savor what I have for the time being and enjoy my extra snuggles with Mr. Jack. He follows me around with those big, brown eyes, and
wisps of baby hair that tag around his ears...most adorable. Most of the time, stuffed animal in arm of some sort.
I've spent so much mental energy recently, researching, combing through facts, updated information, trying to piece all of this
celiac puzzle together on Parker. His sleep has been so
erratic and disturbed, disturbing all of our sleep and we are tired. I am weary of reading every single label on everything I buy and missing just being able to throw anything in my cart without a care. I shouldn't have to worry about buying basil and it containing gluten for crying out loud! But there, on the label of a certain brand-
Walmart- you are a crazy of a store! says, processed with wheat.
Parker's been climbing the walls at bedtime literally and I am left trying to figure out what the problem is. So much new research is still coming in with the link of severe restless leg
syndrome and
celiac. Finally, I find research linking the 2 together and most importantly, that super low
ferritin level again.
I finally get some resolve, after talking with our awesome sleep Dr. at Cardinal
Glennon's nurse. We are on the right track, although it feels like we have had a set back. She explains that since he is eating gluten free, his body is going through a growth spurt** yeah!** and is starting to use all of those nutrients that weren't absorbing before. So, he is not absorbing the iron we are giving him as he should, resulting in a fall back with the restless legs again. I did notice the hemline on the pants shrinking up a bit, and he seems taller, leaner. So he IS growing, which is great. More time, patience, we shall prevail. So much to do, worry about, keep track of. The most difficult thing about the restless leg syndrome "attacks" is the backlash from so much disturbed sleep and lack of ability to nap is the erratic behavior that comes along with it. Tim and I refer to it as "crazy Parker visiting." Sounds funny, and it is, but not in the moment. Imagine a little 5 year old gremlin who flies into crazy talk at the drop of a hat...;) that's what we're dealing with, and have been dealing with for the last 3 or more years. I look forward to the next few months when more improvement comes along as he continues to heal in his small intestine. What a journey. I love my Parker so much.
