The more I look at this picture, the more I love it.
Jackson's hair has gotten unruly in the last couple of months. This is the before picture. I took the clippers to his head right after I took this; it looks much better now, but I forgot to take an after shot. I'll try to get that tomorrow.
Coop has not made it into any recent pictures. He's been too busy flying Buzz Lightyear through the air and running outside eating "ice"--read: dirty snow. Pretty much anything he does, he's going 90 miles an hour to do it. So every shot, lately, has been an action shot. Like this one from last month.
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Now for a few updates:
I got the duplex rented this weekend! I showed it six times on Saturday alone, and more than 10-15 times in the last two months, so it's been hard work. It has consumed much of my thoughts too; to have this come to a desirable conclusion, I'm certainly breathing much easier about everything. The renters move in this weekend, which means all of February is not lost and we'll even be making a little rent this month.
Ella is in the process for being evaluated for placement in a full-time early intervention daycare that integrates therapy right into her daily schedule. We've been working on this since December, and I think we are in the final stages of the approval process. We spent the better part of four hours one morning last week getting all the evaluations knocked out.
She already qualifies for PT (since she has documented delays and is already receiving therapy) and has to show deficits in at least one more area in order to be approved. The speech therapist was pretty sure that Ella would qualify for speech, mostly because of her feeding issues--which I think are slowly resolving without any formal intervention--but really didn't think her actual language abilities were truly delayed (which surprised me 'cause she sure is quiet and seems to have no language comprehension at all).
The occupational therapist who saw Ellie said that she was probably just on the line and may not actually qualify for OT. I had told the developmental pediatrician earlier in the morning that I didn't think E could transfer a toy from one hand to the other--which is a benchmark skill for her age and would definitely qualify her, but as I and the OT watched her she managed to do just that. I've since realized that she had been doing it for a while now, and I just hadn't made note of it.
Last year, the company that makes ACTH (the drug that got rid of Ellie's spasms) started an Infantile Spasms Awareness week. I blogged about it here. Feeling rather strongly about helping to get the word out on the importance of early symptom recognition and treatment for IS, I googled around a bit to find the name of the man who was heading up the Week and emailed him. His name is Mark, and he runs a PR company, by the way. He emailed back within a few days and said he'd love to include our family in future events. Much time passed before I heard from him again, to the point that I'd kind of forgotten about it all.
Then Mark called me up last month and asked me to tell him more about our experience with IS. After he listened to me for a while, he mentioned a few opportunities to share our story with others, all of which sounded pretty exciting. With a few more phone calls and emails back and forth and getting the details all lined out, the first opportunity is coming together quite nicely.
Next month, a camera crew is coming to our house for a few hours to interview us and take some pictures of Ella to be included in future events about IS awareness. Not only do I hope to stress the importance of early access to treatment, I also want to share a story that, though still unfolding, has had a good outcome so far. Much of what you find when you research IS on the internet is grim and scary, but I don't think it is very balanced. I always want to leave room for hope.
Now if you'll excuse me, I have some house cleaning to do.
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