Thursday, July 10, 2008

Is this a sign?

Phoenix has always had low, low fasting (morning) blood sugars - generally around 50. Then, during the day it's around 140-160 after meals. it's not uncommon to see up to 200. And then, once in a while, we'll see above 200. It's rare, but it does happen, when his bg is above 300. But, since he has these low-lows his readings average out on his A1C to be just slightly above normal - hence the "pre"-diabetes. 
Well, yesterday Beeb's fasting bg was 117. A fluke I tell you - he must have got food without me seeing it. Nope. Today it was 97. Could this be a sign of what's to come? We'll be taking note of it and keeping an eye on things, like usual, and wait until our next pedi endo appt on Sept. 1st.

Tuesday, July 1, 2008

School District evals are pointless - sometimes, occasionally, once in a while

Someone please tell me how having a mom fill out yes, no, maybe questions will determine if the child needs to be in any kind of special preschool.
Today Phoenix had "his" evaluation with the Kent School District, in preparation for the three and up program. There were no toys, no questions directed at Phoenix and the Occupational Therapist left after about 5 mins stating that she has seen all she needs to see. She colored with him - that's it. She said that kids with real sensory issues would walk in and scream. Yeah, in the right situation, my child would do that too. She also wrote his name on a piece of paper and asked him what it said. "Me-nix" he replied. She said that he was "just fine." BS lady - write your name and tell him to read it. Chuckling because she thought I was joking when I said "it was a good guess, he'll say his name for anything", she wrote Scarlett which Phoenix read as... "Me-nix" what do you know? She still left to go get her lunch though. If you are going to schedule my eval at noon the least you could do is stay with me to complete it. 
Normally, the person conduction the eval will, with the parent, go through question by question and ask for examples of those behaviors. Clarifying things as you go. But instead, I sat at a table and filled out 50 pages of yes, no, maybe questions. When I asked if I am supposed to score him based on his personality at home or play group or a new situation, I was told "good question" though no one could answer it for me. I also asked how am I supposed to rate certain questions - seldom, sometimes, frequently, occasionally, etc. Phoenix throws tantrums 3 times a day so I put "sometimes" but to some that would be "frequent" and other that is "seldom" - how do I answer that? Also, the mom in me wants to down play and mark things as "seldom" when they might actually be "sometimes" and never wants to mark "frequent" knowing that it could be a lot worse.
No one wanted to hear more about him, no one asked me about specific situations. Nothing. I could see how a child with very sever difficulties would qualify based on this but tell me, a high functioning child? What happens when I drop him off at the first day of main stream preschool and he throws a fit and hurts himself or the teach. Or he's so quiet sitting in the corner by himself that, when he leaves, no one notices. Or that when a kid is picking on him and he can't say anything back because he's so shy that he withdraws even more? I also felt like I was being judged. It wasn't friendly to me. They acted like I was wasting their time.
This eval with the biggest joke ever and I'm ticked about it. To top it off, I don't even get to know any results until the 24th. Thanks for wasting my whole afternoon Kent School District - I could have done this at home. Yet again, Kent School District and the Public School System has failed my family.

Friday, June 27, 2008

Sorry, I've been away.

I haven't been updating - just too busy. 
Phoenix's scar is healing well but it is very visible. If he's anything like me, it'll always be there. Oh well, it's something to be remembered. A reminder of how lucky we are.
We've been controlling his blood sugar well but I haven't been testing like I should. I try to but I just forget. We've seen a few readings well over 200 but, normally one hour after a meal his blood glucose is around 160-180. He gets his A1C retested on Sept. 1st. 
He has his evaluation for the 3-5 program next Tuesday. As much as I'd like him to not qualify because he is "just fine" I know that is not reality, so I hope he qualifies. He has his Autism Screening on August 25th and I'm super nervous for that. 
We are headed to my mom's today because it's going to be hot, so I'll take pictures and post a few next time I update.

Wednesday, May 28, 2008

There's Nothing But Blue Sky.

Phoenix's scar is looking great. He's doing really well too. His blood sugars have been fantastic and his sensory problems seems to be shifting. He's actually becoming more outgoing, though it's only with a parent or grandparent around, and it's becoming harder for him to sit still. He's constantly wiggling and moving. He falls off a chairs all the time because of it. He's also chewing a lot. This is all normal sensory things though. 
Last night we started swim lessons and he did fantastic. The hardest part was getting him to lay on his back. I got him to rest his head on my shoulder and sit up a bit and he'd be on his back. Also, he was really fearful of not feeling supported, like we were going to drop him. No tears though and he loved it. We go back tomorrow. 

Monday, May 26, 2008

The Healing has Begun

We went in for his follow up on Friday. All the tests were back and they showed nothing wrong - the doctor was very relieved but sort of confused. He said he wouldn't have been surprised if the tests had shown cancer since the appearance of the nodes was cancer to a "T". So, it's nothing and we probably don't need to ever worry about it again but that, if he ever has more lumps, we do need to get them checked out. 
Then we had to remove the stitches. And, let me tell you, it is not an easy task for a sensory child. One of his most difficult things is laying down on his back. So, we had to pin him down to keep him still. If he would have relaxed it wouldn't have taken half as long but it was a screaming battle so it took a while. 
The stitches were removed but, unfortunately, there seemed to be a small pocket that formed when the stitches were in place (like a purse) so an infection formed and we had no idea. There was no sign of an infection at all but, when he took out the stitches, the wound popped open and puss and blood came out of a hole in the wound. I didn't see it since I was on the other side but Ethan told me. 
Phoenix is now on antibiotics and we have to use antibiotic cream and a bandage. And the scar will probably be much larger now. But just 24 hours later it was looking so much better. It looked pretty bad the day of. We've kept it covered with a special bandage for several days now that you don't remove so, I haven't seen it since then. 

Wednesday, May 21, 2008


It's benign! The doctor said he'd tell us more on friday but it was benign lymph nodes!

Tuesday, May 20, 2008

Not today.

Hopefully tomorrow we'll know something?