Sunday, October 10, 2010

Behind

So, what happens is this:

We have a few busy days -- lots of appointments, phone calls, new developments -- and either I'm exhausted or processing or whathaveyou, so I put off posting about it. But then another few days just like the first few happen and by that point, even if I'm not exhausted, I'm overwhelmed by how much I have to explain, so I put it off some more. And weeks go by and I have people contacting me asking if something's wrong.

In lieu of a detailed explanation, allow me to sum up and get us more or less caught up.

1. Sleep: Collin has started oxygen at night and during his naps if we're at home. It seems to have made a pretty big difference in his sleep overall, though it still takes him quite a while to get to sleep most nights. We had a debacle involving Dr. Snarky wanting to put Collin on caffeine citrate for his periodic breathing. It definitely fixed the issue, but it did it by never letting him fall asleep. As in, all night. Imagine a 19-month old on a double shot espresso. It took us three days to get him back to normal. Next step is to do another sleep study in a couple of weeks. Gag.

2. Ketones: We wrestled with Collin's ketones for weeks, sometimes having to bring them down with juice three times a day to get him to snap out of his high-ketone daze. Finally, after calls and emails to 2 neurologists, 3 dieticians, and numerous other keto parents, we pieced together bits of information and cut his carnitine in half for a few days and everything righted itself. And I will take this opportunity to quietly point out that I KNEW IT. The spreadsheet doesn't lie, people. (I really will remember to post on Collin's massive health spreadsheet one of these days.)

3. Michelle P Help: Our two Michelle P helpers have been working for 3 weeks now and we're all getting more used to the arrangement. They are both so wonderful with Collin and love him. Collin gets to go through his NACD program even more than normal and I am feeling less like I'm fighting a losing battle against paperwork and our house.

4. Development: This section is also known as the land of capital letters. COLLIN PICKED UP HIS HEAD WHILE LAYING ON HIS TUMMY FOR THE FIRST TIME. COLLIN TOUCHED SOMEONE'S FACE ON COMAND TWICE. COLLIN IS SOMEWHAT CONSISTENTLY LOOKING FOR KYLE AND I WHEN WE SPEAK. COLLIN IS MAKING NEW SOUNDS. COLLIN IS STARTING TO PLAY WITH TOYS WHEN SUPPORTED IN HIS NEW CHAIR.

And that pretty much brings us up to date. I will try my darnedest not to let it get to this point again. I have also jumped back on the Twitter wagon to take off some of the pressure to do an entire post for every new thing.

5 comments:

  1. I will forgive you for the lack of posting if and when I get videos and/or pictures regarding #4.

    I feel I am being very sensible.

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  2. Hurray, Hurray, HURRAY!!! Good for you Collin!! Can you hear us all cheering for you back here on the farm? Love you guys!!!

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  3. If that is just the short version, I'm exhausted for you! And YEAH for all of those capital letters!

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  4. like a TALL glass of ice water on a hot day ... thanks for coming back. It's great to have something to cheer about!

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  5. So, so, so incredible. The presence and power of God confirmed once more. Go, Collin, go! (Go, Annie, go -- on some videos of these accomplishments!) :)

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