Thursday, September 11, 2014

Meanwhile...

So yes. We had a baby. And he's so so cute. We adore him, one and all. 

But we've been doing other things as well. For instance, we moved. While we are grateful to be in the city, closer to all the many many things, we miss Midway. And I don't recommend moving at 7 months pregnant. You would think I would remember that from when we moved when I was 7 months pregnant with Max. Nope. Moving is terrible. We are grateful to be settled.

In other news, my kids started back to school at real, public, brick and mortar schools this fall. 
There are many reasons why we made the switch, but mostly it was because the girls wanted to, and we decided they should have some say in their schooling. Max and Ashlynn were accepted to a fantastic charter school, and Abby goes half-day to the middle school that's in walking distance and comes home at lunch so she still has time for practicing, homework, and having a life. They are busy and happy. I am spending much time dropping off, picking up, and negotiating homework with the 12 year old, 11 year old, and the 5 year old. Yesterday, I had to bribe Max with an m&m for every row of cursive practice he completed. (Cursive in kindergarten. Yes. I don't know that I get it either.) But we got through it in record time, so that's something.

But whoever said that public school is easier than homeschool must have been crazy, because the busy, runaround life we normally lead has multiplied exponentially. My color-coded google calendar and I have become best friends, and I'm trying my hardest to keep all the balls in the air. So far, I'm averaging about one epic meltdown a week, so that's better than it could be. And that's one epic meltdown for me, not to be confused with the epic 3-year old tantrums, or the semi-regular implosions from the 5, 11, or 12 year olds, for that matter.

And I might be certifiably crazy, because this week, Max had his first cello lesson, and I've started teaching Ian little daily violin lessons.

 So that makes four kids playing five instruments, (Ashlynn is playing flute in the 6th grade band...) three different music teachers, and lots and lots and lots of practicing. But the little boys love it, and due to being surrounded by it constantly, assume it's perfectly normal to practice itty-bitty violins and cellos every day.

What else? We blessed Charlie a few weeks ago, and by happy scheduling coincidence, both my sister and brother and their families were in town for the blessing. It was very fun to have everyone together, even only briefly.



And it's starting to look more and more like little Charlie may also be dealing with metopic craniosynostosis. For all those that say cranio isn't genetic, I don't believe you for a second. I started noticing Charlie's forehead ridge a few weeks ago, and kept telling myself I was crazy and blowing things out of proportion, but then my husband noticed it and I knew we were in for a ride.

We're currently watching and waiting, because although he's showing all the signs of metopic cranio- ridge down the forehead, a developing triangular forehead shape (trigonocephaly), pinching at his temples and close-set eyes, the suture still shows open on a CT scan. (As a side note, you know you're a mom of a cranio kid when they put your baby in the CT scanner and you're tempted to take a picture, because you know, baby's first CT scan...) No one can explain it, so we're currently watching and waiting. Things are changing with his headshape rapidly though, and not for the better.  In my gut, I'm pretty convinced we're headed for surgery with this little one too.

The "fortunate" thing about catching this early is that we have the option of a less invasive, endoscopic surgery if his metopic suture is indeed fused. The surgery would be shorter, less risky, and be followed by few months of helmet therapy to help his head retain its corrected shape. So we'll see if that's an option.  In the meantime, I'm trying not to think about it every hour of every day.

So while I'm frustrated and angry and all those other things about facing the hell that is craniosynostosis AGAIN, especially since it wasn't all that easy the first and second go rounds, I'm grateful that at least we know what it is, and we know how to treat it. We know who the doctors are and how to navigate Primary Children's Hospital, and that there is life after surgery. Doesn't mean I don't wish we'd never heard of craniosynostosis in the first place.


3 comments:

  1. Stacy....
    A belated congrats for the birth of sweet Charlie!! He. Is. Adorable!! Charlie might have metopic craniosynostosis?! Oh, I am so very sorry that you may have to go through that hell.... Again. I am so very sorry that he might need his skull cut open and reconstructed.... Just like Max did. I am so very sorry that Charlie might have been born with craniosynostosis--my birth defect--that I would obviously never wish upon any baby. I am so very sorry.... I want to protest that, no, his head looks fine, and he doesn't have craniosynostosis, but I'm not a doctor. All I can do is pray. For you. For Charlie. Because if he does, in fact, have craniosynostosis, then please know that I will support you with tons of prayer. {As will my Mom, because I told her!!} While I do not know about craniosynostosis being genetic, it can, I'm afraid, occur more than once in the same family. I have read stories. You may have already experienced this neurological birth defect. But nobody, nobody, nobody would ever want to do it again. Knowing what to expect only makes matters worse, huh? Because handing your baby over to some neurosurgeon? It never becomes easy. I get it. More than I probably should. I can sense your thoughts/feelings/emotions. Please keep us updated on the results of Charlie having craniosynostosis. Diagnosis.... Operation.... Helmets.... I would appreciate it!! ;)
    Hugs!!
    Love you later, Raelyn


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  2. Stacy lovely, it cracks me up that we've switched places with school. Several keep telling me there is a season and window to homeschool...I love reading about the music with all your darling kids...oh the beauty that must be ringing through the house. And hugs for Charlie's head no matter what you discover. You are loved beautiful friend.

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