Insert Primal Scream Here- Prepare for incoherent rant

AHAHHHHhhhhhhhhh!!!!! Really does not cover my frustration today. I spent 2 hours in an IEP getting the reports from several people: autism specialist, OT (occupational therapist), PE Teacher, and some other behavioralist(?). Anyhow. I thought that from these reports would come something concrete about getting Therin an aide for at least part of the day. We all agreed that the teacher is overwhelmed by his behavior I don't see how changing his behavior plan and bringing in YET ANOTHER PERSON is going to help. Isn't it more expensive to be using all these people? Wouldn't it be more cost effective for him to have a shadow, aide, person to whack him upside the head and say YO Quit it that boy doesn't want a hug! He needs all this stuff and I can't be at school to do this for him (and when it comes to PE I rather suck myself. When there are behavior issues and other things going on around here my first instinct is not to teach the boy how to dribble a basketball - that important lesson has slipped through the cracks but no more!). His poor teacher was on the verge of tears. Therin has good weeks and bad weeks and the good ones are pretty good but the bad ones really make her want to tear her hair out. It has been that way for ALL HIS OTHER TEACHERS. I am so not going to give up! No child left behind my ass. He will be left behind if he doesn't have an aide and if he doesn't get an aid sooner rather than later than he will be ostsracized by the kids around him. Although, a blogger I know mentioned that her relative was shunned by many growing up and that it really turned out to be a good thing- he was recently diagnosed as an adult with an ASD. . . BUT I still want to do my part to make sure that he has every advantage I can give him. So I fucked up genetically, I can fix it. Oh, what came out of the IEP is this: Therin will continue to be pulled out of his class 2-3 times for Reading Resource and Social Skills group. He will be pulled out 2 more times for Adaptive PE, and he was going to be pulled out for the OT & autism but we worked it out that the OT will help the autism specialist and that she will come durning a break time to help him interact with other children and work on appropriate playground behaviors and maybe use the appropriate playground behaivors/games to help with his OT issues. For example: He'll be getting help with playing with a ball from PE - at recess he will be shown how to use a ball to interact with other children and when he feels the need for deep pressure stimulation, instead of exuberantly grabbing and hugging another child without permission he will hug the ball instead. Something funny I found out in the IEP is that Therin would prefer to organize his paperwork by lining it up on the floor - poor kid comes by it honestly. Out of sight -out of mind for me too. I try so damn hard to be organized and it really doesn't work very well most of the time. Sigh. I guess the IEP really turned out alright but I was under the impression that this was going to address the need for an aide not drag it out. Too bad education is all about the money instead of all about the kids.

Hey Deetle!

If you get here and read this post. Tell me how you got flickr on your blog. And how do I make a link xenophod.com? You so rock. Too bad you're so far away.
Hugs,
Yer Seestor,
Hammer

After reading a few stories and going in a few chat rooms I know my little girl is so very lucky. DX'd on 8/17/06

1. We caught it before it got too bad and even with the misdiagnosis at the beginning she is still here with us.
2. Her Endo trained at a hospital that started infants and toddlers on the pump right away.
3. Some paperwork fairy in Kaiserland ( probably Nurse J. or her Endo ) got the pump approved and the paperwork on it's way to Animas so fast that . . .
4. Brenna's pump arrived in a few days! (I was told to not expect the pump to arrive for a month)
5. Her Animas rep had her hooked up before the end of September - 6 weeks after diagnosis.

Some parents have had to fight for a pump for their child. I can't imagine life without it. We have given her very few shots since she's been hooked up to the pump but I am positive that I will remember how to use needles correctly for a very, very long time. If, for some reason I forget, look out oranges!

I still feel like I'm fine tuning things with her pump and she gets tested somewhere between 6 & 12 times a day but the more I help her do this the more I learn. The more I learn the better info I can give her when she starts to take over.

So far we own "Pumping Insulin" but any help is welcome and I read just about anything.

You probably should read the post before this one first

Brenna update

Brenna is up and running! The trick now is catching
her. If only I had her energy . . .


We went to an appointment on Monday, September 11th.

After dropping off Rowan at preschool we saw Chris on
his way back from the market. After a little chat &
cheese we were on our way (thanks Chris the cheese came in handy)

The Dr Visit was kind of like being in an IEP meeting
except for the fact that all of the professionals
rotated through the uncomfortable examination room
instead of all surrounding me in the principals office
-- oh, it was longer too. We were there from 10:30 to
12:30. I was so glad my Mom was there to take Brenna
on walks when she started to bounce off the walls.
The Dr. who misdiagnosed her to begin with came into
the room at the same time as her new Encocrinologist
so I bit my tongue. He said felt very bad and yet the
only apology he offered was "sometimes things like
that happen". Luckily (unluckily?) my mother was out
of the room (my poor tongue). Both Doctors cut me off
when I tried to ask why he didn't test her blood. I
bet he can't wait to read my evaluation!*

Good things happening from that visit:
-Brenna gets a pump!!!!! Sometime within a month
This will help so much with insulin doses.
-Dietian says she's eating well
-I keep good records
-Nurse says that she seems to be doing well and that I
have good instincts about her insulin doses.

Not so good things(not inherently bad either):
-Endocrinologist says I need to do exactly as she says
because we need to do this scientifically (I guess she
doesn't like my instincts)... so I will, when it won't
hurt my daughter
-Went to do more blood tests -- took a nurse to help
me hold her and one to draw blood
-Blood test came back that she has a hypothyroidism
and I need to give her 1 1/2 pills each morning, 1/2
hour before breakfast, on an empty stomach -- tomorrow
is the first day . . . wish me luck.

Life goes on . . . Rowan is doing great in preschool
and I have an IEP at Standiford for Therin. I'm
thinking of starting a blog -- I love reading Coxford
News. It's great to read something so joyful!
Mundane would be nice too. Keep me in the loop. If
you see any interesting email -- send it on to me.

* Kaiser never did send me an evaluation in the mail about that particular visit. I guess I told the story enough while Brenna was in the hospital that my complaints got to somebody.

An email from the DX files

Some of this isn't new as I have already talked the
ears off of some of you -- be careful ears on the
floor may be a tripping hazard in the back room.
Please pass the information along to anyone who wants
to know.

Brenna has been diagnosed with type 1 (insulin
dependent) diabetes. Her pancreas has for an unknown
reason stopped producing insulin (doctors have lots of
theories but they really don't know for sure what
causes this. They say that "envornmental & genetic
factors" play a role but they are still researching).
She will not grow out of it. Right now our focus is
making it a part of our daily lives. We are working on
a routine and once I figure out the carbs for her
regular meals and snacks I'll be able to make a more
regular menu. There is so much to learn. We're
keeping things matter of fact - not fussing over her
after finger pokes or shots - "ouch, that hurt would
you like to color or play with playdough?"

Brenna is such a trooper she already picks a finger
for the glucose test! She still whimpers and squirms
when I give her insulin. When the nurse at the
hospital gave me a shot (with saline in it) it didn't
hurt much but when I let Brenna pick one of my fingers
and used the lanset it hurt for awhile -- I must be
doing something wrong with the shots. For the moment
we're using a sliding scale for insulin doses based on
pre-food glucose.
She has 3 kinds of insulin and I give her between 3 to
5 shots a day- usually 4 or 5 at the moment but her
diabetes nurse tells me that it will change as she
grows.

Thank you for all of your good wishes and support. The
cards were wonderful. I keep them in her diabetes
folder and break them out when ever I need to "hear"
your advice & kind words.

Thank you,
Amber

P.S. If any one knows of any good books about this or
carb counting let me know.

Reaching out

I don't know why but I'm having such a hard time reaching out to the people around me for support. There is this wonderful lady who works for the county and forwards flyers and such for all of the diabetes group things happening around here. So far we haven't been able to make it to a single event. Well, we did make it to the Halloween event at the hospital across the street from us. My daughters Animas pump rep was there to introduce us to a few people. But I didn't see Gina there. I'd love to go to a support group, if nothing else so that Brenna can see other kids with diabetes and I can talk with other people who KNOW.

Everyone at work asks me how my little girl is doing but on those really wierd days when my mom calls with bg concerns or sleepless nights testing because she's having nightmares (ok, is she having nighmares because she's being poked 24/7? or is it high/low blood glucose? is it because she's 2?) Then instead of giving them the "everything is fine" I start speaking "diabetes". I didn't even realize that I spoke a foreign language until my librarian coworkers were asking me for definitions. Oops.

I'm not even talking to my friends very much lately. I need to. They are wonderful people and I miss them so much. They let me talk in diabetes even if they don't understand completely they don't try and fix things they just listen. I sure hope I get to repay them sometime. I really found out who my friends were when Brenna was in the hospital. I had so many messages on my cell phone (I think they have "expired" they weren't in my voice mail last I checked) with messages of hope and support. I listened to them a lot when we were in Santa Clara and even when we got home. But it's hard. I don't want to keep dumping on them so I've withdrawn. Not on purpose. I'm just so tired and I don't feel like I have much energy for anything other than work & pancreas duty. I don't feel like I'm doing that great during diabetes duty. Her numbers are good, until I take over. Or that's what it seems like anyway.

I need somebody to gripe to about this disease. I think blogging & reading other blogs is helping a little bit. It's nice to know somebody else is out there.