I am breaking my own golden rule to not blog at midnight and not eat M&M's because, really, the sugar makes me cranky and then just adds layers to the already cushioned cushion upon which I sit. But...there are days when a few M&M's and a few minutes of writing are just needed. Tonight, I deem that as one of those times.
So to update...Will is still 14 and Caroline is now 9. Oh, not the update you wanted. Well...here goes...
Will is pretty much the same. He's still fighting this crazy infected toe, and it's the only thing I can find that is keeping him a little off kilter. He's getting fluids pretty much every other day. The L-carnitine is making a huge difference, but he's just not holding more than a couple of days between infusions. Is this progression? I don't know. The stress on his body could be growth, infection, allergic reaction to the pollen, or just overall fatigue.
Caroline is currently a mystery. She no longer writhes on the floor complaining of abdominal pain. However, her hair is...odd. I know it sounds weird, but her hair has become very thin and frail. When I put her hair into a ponytail, you can actually see scalp in the back. And there's little volume. Her hair has always been wispy, but it's just...thin. She's also needing to be awakened out of a deep sleep for school, so there are concerns. I called her GI doc and we will see him on Thursday morning. It could be an absorption issue or an endocrine issue or I could just be crazy. If crazy wins, does this mean I get a vacation at the beach with which to recover my sanity? :)
I went to the pharmacy to pick up medications this evening and received the, "Oh, you don't owe anything" comment. Ha! Oh, but I do. We officially have met the $10,000 out of pocket in medical bills jackpot. I knew that the admission last month at MCV would put us at that magical number, but apparently the claim has been fully processed.
Some days this can be so daunting. But then there are days when you realize that your perspective is forever altered and, to be honest, altered for the better. When faced with the challenges of a chronically ill child, you realize that some things are just so not important. We may not be able to order pizza very often or even go to Carl's, but I can make pizza and spend the evening playing buttons with my family. At the end of the day, when sleep the night before was an enigma and all you want is to get them to bed so you can crawl into your own but you are instead sitting at a computer eating M&M's and trying to help people know how to pray, well, that is when you are grateful for M&M's and for the fact that your family is still intact and you are indeed blessed...The laundry and the cleaning and the schoolwork will wait for tomorrow. Today is indeed a gift.