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Micah goes in for a PSG (polysomnogram, aka "sleep study") this Sunday night. Ugh. My child, who screams at the sight of a stethoscope or blood pressure cuff, is supposed to allow some techs to stick a bunch of electrodes on his head and body and have him fall asleep with them on and sleep through the night. Yeah, right.
Please pray that he is somewhat calm for this. I almost wonder if it would be better to send Mark with him. It seems that he grumps more for me than for Mark sometimes. Also pray that we will have a definitive answer as to whether or not to remove his tonsils (which are obstructing about 80% of his airway, but he's not showing signs of apnea, other than moaning occasionally overnight and waking fairly early in the morning).
Yes, I have pictures from NDSC and lots of information to share. I hope to post about that soon. In a nutshell, we learned a lot, met some of our wonderful blogging and Facebook friends, caught up with some "old" friends, and enjoyed the Magic Kingdom (well, *some* of us enjoyed Magic Kingdom). Okay, maybe I should post at least a couple of pictures.
This is what Micah thought of Mickey Mouse at Breakfast with Mickey
Maybe next time?...
Yes, we'll be there! Orlando, here we come! I'm really looking forward to meeting some of my blogging friends IRL (in real life). And catching up with the Baeten family (we used to live close to them, and Melanie was a great support for me when we learned of Micah's diagnosis since she had walked the path just eight months before us). Please pray for us on this trip, specifically that Micah would not wig out with all the people and noises... never mind that freakishly large Mouse! We're also looking forward to seeing some dear friends from our days of living in Orlando.
If you've come to the conclusion that no news is good news, then you're right on target. Micah has had a few issues since my last update, but nothing significant. He sees the immunologist today. Please pray that they have a good phlebotomist. Micah is a "tough stick" on a good day (he has rolly polly veins, and once they get a vein, they usually don't get enough blood out of one... it's not fun for anyone). We're hoping that he gets an "all clear" from his septic/toxic shock event from April, i.e. he has no significant immunity issues that would require long-term treatment or mommy paranoia. I don't know how long it takes to get the bloodwork results back.
On a separate note... I am NOT PLEASED with what is going on with Micah's EI (early intervention) services this summer. I like to give people the benefit of the doubt and believe that everyone has his best interest in mind, but that is clearly not the case here. One of the benefits of EI being part of the school systems in the state of Minnesota is that there seems to be a fairly good transition from EI to preschool. But right now we are experiencing one of the detriments to school-based EI; that is, summer schedules. Someone has determined that Micah only gets to see a physical therapist ONCE A MONTH over the summer. Seriously. My two-and-a-half-year-old who doesn't stand on his own or walk only "qualifies" for once a month?
And it doesn't help that Micah's special ed teacher (who coordinates his services) is transitioning out of the birth-to-two responsibilities and will no longer be working with Micah (by the way... Tim is Micah's absolute favorite and he will miss him tremendously). Oh, and his OT has moved on to greener pastures so Micah hasn't seen an OT since the first week of JUNE (except for the private OT who sees him for feeding therapy... I tote him up there twice a week and I'd really rather not go more often to pick up PT and OT, nevermind that we're about out of our 30-visit annual maximum with our insurance company). Rumor has it that someone was quickly hired to take the EI OT's place. But we have not heard from said therapist yet. Nice, huh?
I'm doing my best to be patient, but I'm afraid that after our return from Orlando, I'm going to have to set up a time to meet with the director. This is beyond ridiculous.
And for your viewing enjoyment... a photo of the cheese face!
