Ah yes, another one of those! I have been cooped up in my room all day because of the snow, unable to go see Abby because of the slick roads and my uneasiness about driving in the city in the snow. I have been quite productive today though, which is a plus. There was lots of researching about nursing care and medical equipment going on! Lots of phone calls were made, several thank you cards were written, some cleaning was done, and a few forms were completed. I discovered that I can in no way make snowflakes. After three botched attempts, I labeled myself a failure and moved on. I'm good at lots of things, but snowflake creativity is not one of them. I'm getting to know a few other lovely people who will be here for a while as well. It's rather sad when so many people come and go and you're still staying. We've been here for eight weeks. One of these days, it will be us packing up our car and turning in our key!!! Matt and I were discussing whether we would stay at RMH for the night after our discharge. My feeling is that unless we are discharged really late, I want to go home. I love RMH and will always hold it near and dear to my heart, but I've been away from familiarity for waaaaaay too long. It's just pitiful when you walk in your house and don't feel like it's yours. I do want the staff members to be able to meet the special girl they've heard so much about, so we may stop by and pick up our last minute stuff before we head home. We'll just have to see how it goes. I drank a cup of hot chocolate today with marshmallows and it fit the weather perfectly. I sipped it while I was editing the beautiful photographs we received from the photographer that took pictures while Abby was in the NICU. In our mailbox today, Caleb got two stuffed toys and three goody bags. I swear (except I don't) that this boy is going to have major RMH withdrawal when he gets home and realizes that there won't be huge breakfasts, or constant gifts, or treats, or activities every night, or an awesome playground. I have a feeling there will be a big reality check here--especially since we had a conversation yesterday in the car where he told me that Abby wouldn't have tubes and wires when she came home. Despite my best efforts to [gently] set him straight, I don't think he truly understands that Abby won't be coming home "free." And so as I look out my window at the snow-covered roads that haven't even been touched by a plow, I hope that tomorrow I'll be able to wake up bright and early and head out to see my best girl!
If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS. If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan. The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google. My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!! (a combination of all 3 is great too!) :) Notice that it's not to get famous and it ...
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