Thursday, June 23, 2011

Evals and Updates This Week! (6/23)

Last Friday we had C's appointment with the sleep specialist. Very nice doctor (the first "official" to say Sensory Integration Dysfunction and that sleep issues are often seen in children with it- that moment felt so BIG!). C was officially diagnosed with insomnia and restless leg syndrome. The insomnia is being treated with Melatonin. He's been taking the highest dose (3ml) from the get go, Friday night being the first. Straight off the bat we saw improvement right away- he fell asleep within minutes and slept peacefully through the night. The next days nap was his normal 4 hours (yes you read that right- 4 hours and most days we'd have to wake him). Next night it was the same but the nap was shorter just an hour and a half. Sunday night we noticed he sleep cried/whimpered the whole night (he's cried/whimpered while sleeping before but just a moment or two.) long. And he woke earlier Monday morning, up by 6am (normally more like 7). He napped for two hours that day, waking on his own. I learned from my DH today that the past 2 nights C's woken and stayed awake for at least and hour each time, and not settling fully back down and awake for the day at 6am. He napped for 3 hours today before I went and woke him. I'm not sure what exactly to do, I am going to try calling the Dr. tomorrow and see if we should try lowering the dosage. But we are seeing results.

C's 1st OT appointment with the therapist from EI (early intervention) on Tuesday was canceled because the paper work (on their side) wasn't complete but I did get a phone call from her today and we have rescheduled for next Tuesday and she's bringing the paperwork to sign. His "teacher" will also be attending- both are new to us.

And finally on C, I got a phone call on Tuesday saying there were openings for his evaluation and we scheduled for today. Off we went, just C and I, taking 2 buses each way, really it's not that far from our house though- about a mile and a half! Haha. But he did gain two new words on our trip, the first being bus (but pronounced besh) and the second pizza (we walked past a pizza place with the most wonderful smell leaking out the door. Being a child that loves to smell things he immediately said "ummm" and I replied "Do you smell the pizza?" "Pizza!" he said with such clarity.) He was so excited to be on the city bus he was shaking and almost biting his fingers! But on our last bus home all he wanted to do was go explore the bus and a meltdown (a mild one) ensued complete with him throwing himself backward and hitting his head on the bar of the seat in front! Ahh the looks I got but really it didn't matter we were blocks from our stop and I knew he was hungry, tired and done. And his curls and smile make up for it all!

But the appointment... went very well. I love the therapist- he'll be working with, L, and she's so good with him already. She worked with him in ways that encouraged him to stay on task with rewards and gentle reminders. (Unlike the EI ST who did the eval a few weeks earlier who seemed to want to make him do it her way and would take everything away from him that kept his interest longer than she wanted. I'm unsure if she'll be his ST this summer or if she was just for the eval. We'll see how it goes with time. She was kind just a little "stuck" herself.) She suggested an OT eval, something no one else has, and helped us get on the waiting list for that (it's a few months wait!). He'll have ST (speech therapy) once a week, starting next week. And she, like the EI's ST, agrees his receptive skills are good but he's behind in expressive. She's writing out her official report and getting it out to us in the next few days.

Our ducks are in order. He'll continue to receive help with EI until he turns 3, at which time I believe he'll be re-evaluated for continued services. As far as the private sector, through our hospital/clinic he's eligible but our state government may be shutting down (much like what happened with the federal government a few months ago) and we may loose our insurance (through the state) for a time. I'm trying to see it as a "short" break and hoping it'll last less than a month- if the Governor doesn't decide to by-pass it all and keep assistance programs going (that's a hope to!). I'm not scheduling any appointments for July, just in case. And am talking to all our providers about the situation. I hope we don't loose any slots while waiting.

And moving on to O- I am in email contact with his teacher about the "lost" paper work she has to complete for the third time and we should have those on Monday. I tried setting up an appointment with his Dev. Ped . today but the only openings he had were in July so I'm waiting...again. I'm calling our regular Ped. to ask her about an OT eval

So there's the last weeks update. 2 therapies scheduled for next week- one through EI and one private, for C. And O graduates from Kindergarten (there will be pics next Friday!)- in August he'll be attending school all day! Wow!

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