Please be praying for Miss Ella. She’s been acting strange– anxious, moody, restless, agitated– ever since she woke up from her nap. When I came in to get her I suspected she’d had one of her episodes because she was a little disoriented and crying that weird cry. But instead of going right back to normal afterward, she cried and cried for a long, loud time.
She’s not a crybaby at all, normally. On the contrary, she’s little miss sturdy and unflappable most of the time. But today, even after she quit crying she never quite went back to normal. I had this uneasy feeling like I was babysitting someone else’s kid all evening. Hopefully it’s something normal like a cold coming on, or a new tooth, but I’m scared it might be related to all the other odd issues she’s been dealing with.
Anyway, the EEG is this Friday. We head down the night before so that I can keep her awake all morning before the test. We’re praying that we can miraculously get an appointment with the neurologist that afternoon or the next business day (which would mean another trip after the weekend was over). Otherwise it’s a two month wait.
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That’s how old this baby is today:
Except that now she doesn’t seem like such a baby. Even though she’s been walking for five months now, I never really thought of her as a toddler, until recently. Now she’s trying to copy everything we say, and isn’t relying on signs so much to communicate, and is asking to explore and ‘help’ and climb and play. So I think we’ve kind of transitioned into full-fledged toddlerhood.
Not that it’s a bad thing. Not that she hasn’t been trying to be too big since the day she was born. Darn it.
So today we went outside and took pictures of Ella in all her toddler-ness.
These eyes of hers are still blue. I think they came from Grandmommy.
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“Okay, I’ll just tell you. Daddy, I’m in love with you. It’s because you’re so big and strong and smart. . . and handsome.”
– Naiah, age 4
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The 10K was lots of fun. Small group, quiet morning, cool breezes. It was much more laid-back than the 5K. I don’t even think they timed us. I ran it in this weird empty space between the really fast people and the really slow people, so for the most part, it was like I was running alone! Afterward there were way too many doorprizes and lots of food and music, and we all just kind of hung out and chatted and ate together. A few people asked me about my shirt and why I was running alone, so I got to talk about Micah and the march I missed in Ojai and SMA. Jason and the kids stayed back at the hotel all morning, and it was nice to take my time and mingle a little bit.
The only drawback was that 1/2 mile of the marina stretch was covered with water and slick as ice. We had to run that stretch twice, and it caused me a lot of leg pain afterwards. So much, in fact, that I was walking like I was nine months pregnant with twins by the time we got to the pumpkin patch that afternoon. (And believe me, I know how it feels to be nine months pregnant with twins and trying to walk! Not fun!) So this was the first year that, instead of traipsing out into the far-flung fields at Wemple’s to hunt down our pumpkins, we shamelessly pilfered them from the decorative wagons and hay bales in front of the office. The kids didn’t mind, because they got to play on the hay maze like always. I say “ON” the hay maze, because they never actually touch the ground. The fun is jumping bale to bale over toddler heads and crashing into one another. None of the other kids were behaving this way when we arrived, but by the time we left, they all were. You’re welcome, fellow pumpkin-patch-goers.
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This is Mr. Micah Marshall.
He was born two months before Ella, to our good friends Don and Chelsea, and their three-year-old Joe. Last November, we were on our way to see them and all our family and friends in Ojai for Thanksgiving, when we got the news that Micah’s lung had collapsed, and that he had been diagnosed with Spinal Muscular Atrophy (SMA). The doctors told them that kids with SMA rarely live past 18 months. It’s the number one genetic killer of young children, but research for a cure is grossly underfunded compared to more publicized genetic diseases like Parkinson’s.
Last month all the people we love in Ojai, plus a lot of very cool community members who don’t even know the Marshall’s, walked the bike trail with Micah. Their goal was to raise $5000 for SMA research. So far the total is over $12,000 and still climbing!
Since I missed out on the fun, I’m running my 10K in Sparks this weekend in honor of Micah man. I’m going to try to make a Micah shirt and everything, but since I’ve never tried this iron-on print-out thing, we’ll just have to wait and see how that goes! We’ll be donating to the search for a cure through FSMA.org, and YOU CAN TOO!! Just click through to this donation page. You can mark your donation in honor of Micah Marshall, and in the additional info box, please specify that your donation is “not for stem cell research”, to fund research that doesn’t utilize embryonic stem cells.
Or if you’d like to help the Marshall’s with the mounting bills they’re facing for all of Micah’s equipment and hospital visits, an account has been set up for them by the name of “The Parents of Micah Marshall”. You can donate at any WAMU branch or mail a check made out to The Parents of Micah Marshall, to PO Box 1154, Oakview, CA 93022.
And most of all, be praying for Mister Micah and his awesome family. They’ve all been a huge blessing in my life since we moved to Ojai in 1990, and we’re praying that God blesses them with miraculous healing and miraculous peace.
Wish me luck this weekend. I’ve never run a 10K!
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We have an EEG appointment, November 13, 1:00 p.m., Sac!
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I found these on Sarah’s math lesson today. She wasn’t aware she had written anything amusing. Surely the text writers could be a bit more specific for the poor, literal-minded children of the world!
Saxon Math 3: Jim had five dimes. His sister gave him two more dimes. Write a question.
Sarah: Why do I have to write a question?
Saxon Math 3: Today’s number is nine. Write a number sentence.
Sarah: 16 + 18 = 34
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