Tuesday, June 8, 2010

Still here, but waving the white flag of surrender...

This has not been my month. Not a good one for Jaymes, either. I have never been so insanely busy, exhausted, and overwhelmed as I am at the moment.

The unequal pupils thing continues to happen, though it's been seen by a whole bunch of medical folks, which is good. He did it during the EEG (and no, I still have no results from that), during a hearing test, at the pediatricians, at the ER... It totally freaks out my one friend. The doctors have needed poking and prodding to do ANYTHING, which is incredibly frustrating for me. The only docs showing any real concern are Dr. K, who prescribes his meds and who got the call the first time the pupil thing happened, and Dr. A, the pediatrician.

Anyway, Jaymes has appointments for the brain MRI on the 7th of July, and for the neurologist at Duke on the 9th. In August he will see genetics at Duke, on the advice of a friend with a medical background. We really need to find out why he's been like this, and whether there is something bad going on in his sweet little head. Very scary.

I spent a ridiculously long day trying to get meds for my anxiety at the psych place up in Winston. Got there at around 9am, was not seen till almost 1:30. Sierra was with me, she was such a good girl. And thank god for Ipod Touch and Ipod Touch apps- My Little Suitcase saved me a lot of cranky bored 3 year old. Sierra played it over and over and over and over. Totally worth whatever I paid for it- $3.99 maybe? Or it might have been $1.99. I can't remember. Again, totally worth it. Anyway, after an entire day wasted on waiting, still no meds. I do have an appointment though, for the end of July. I was given the option of coming back the next day and waiting for a psych cancellation, but opted not to waste another entire day. That, and the place is kind of scary. Lots of realllllllllly scary looking people in varying levels of insanity. One very tough looking lady kept telling everyone in the room "if they don't see me soon, Ima come through that window."

Yikes. I think I'll wait for my appointment. I'm not as insane as I could be, anyway.

Anyway, school is over, summer vacation is here. Went to Jaymes school picnic thing yesterday, it was really nice. Was great to see how many teachers and staff care about Jaymes. He's a popular little booger.

I found out that Jaymes principal did decide to let him stay back in Kindergarten next year. I cannot describe how happy and relieved I am about that. I admit that for awhile I really did feel like it was a constant battle with the school folks, like they were kind of trying to keep services from Jaymes... But I have come to realize that while sometimes they underestimate Jaymes abilities, for the most part they really are wonderful people who do want the best for him.

His teacher, Mrs. Colditz, turned out to be the best teacher Jaymes has had. She really understood my reasoning for the things I asked the school to provide, and went so far out of her way to do as much as she could to help Jaymes succeed in school. I hope he has her again next year, she really is fantastic. The classroom aids were fantastic too- his favorite, "Miss Tasha" is going to another school, which is sad because we really liked her.

It turns out I totally misjudged the "new" principal, Mrs. Cannon. At the beginning of the year, I really felt like she didn't understand where I was coming from (particularly regarding the school bus stop issue that kept Jaymes out of school for the first couple weeks), but so many people I'd talked to told me that she was wonderful- and they were right. I feel bad for being such a witch all school year about things, it's hard to advocate for your child when you feel horrendously guilty for advocating for your child... I know, pathetic!

Anyway, I sense that my sleepy pills are kicking in, as this is getting more and more rambling and less and less coherent... So to sum things up: Jaymes had/has a great group of people looking out for him- at home, at school, at therapy, and everywhere else. Next school year will be a lot easier than this one, now that I and the school staff know one another a bit better. I was wrong about quite a few of the school people- Cash is a fantastic school with a principal who DOES understand that in some cases (JAYMES) you really do have to think outside the box.

So to any school folks lurking around the blog- thank you.

1 comment:

Melanie said...

Amber, be sure to ask the genetics folks (or any doctor who is willing) to look at his skin with a Woods Lamp. That will show if there are any skin markings for Tuberous Sclerosis, and may at least help the process of elimination for what exactly is going on. Good luck!! And, glad to hear that you got the kindergarten repeat you wanted. It was the best thing in the world for our boy.