School meeting and other stuff!

[andromeda31]

Hello!

I had my meeting with the school on monday the 4th....it went great! They wanted to discuss the alternate code status (DNR) form we have for Caitlin and to formulate an official district policy for following them. I (as usual) was right on the dot in getting there...everyone was there already. The director of spec-ed began the mtg and said he hoped I didn't mind that they had 2 lawyers present...I didn't mind at all and actually I knew one of them already! Small world! My friend used to do day care for the one lawyer's children and she (lawyer) also graduated high school with my sister (although they didn't hang out in the same crowd). So that did not intimidate me at all as I felt comfortable with a familiar face. The other lawyer represented the state of wisconsin department of education or something like that. The only other person I did not already know was the school nurse from the middle school, Caitlin will be at elementary for one more year but it was nice to meet her as when C moves up, I'm sure we'll get to know each other fast! LOL! The state lawyer guided the meeting, asking questions, etc. I brought my copy of our form so they made copies for everyone there. State lawyer had many good points, the biggest issue is at what point does custody transfer from school to me...ie, when Caitlin is at school, school is required to protect life. (I figured that and it didn't surprise me) If she were to have a major medical something happen, we determined a procedure to follow where I would be called and when I arrived at the scene, then I would be in control and our form would then be honored, unless ambulance arrives first. Ambulance would also be allowed to honor our form and in fact, state lawyer suggested having a copy of our form on file with the local ambulance dept and also the hospital. I had never thought of that so that was nice. Her ped has a copy as well as the children's hospital but not our local one...better safe and prepared! They were all concerned about my feelings, I said, I am all good...I like knowing all these things are taken care of ahead of time and not during a crisis. Which is why we have the form in the first place! :) State lawyer also discussed at what point would I keep Caitlin home from school....like if she were medically not stable, it would be better to keep her home so that I would have control/custody in case the form would need implementing. Which really is not applicable now, I am currently not fearing such in instance, but I did talk about 2009 when her shunt was failing and how I did keep her home when I felt she was not right. I am good about that though I am sure they need to write it in a way for people who might not be as good about it (does that make sense?).

So that was that! :) It's been a busy few weeks, my kids were done with school the end of may and had a week off before summer school started this week. Hard to keep them all busy and not fighting with each other. Plus I had a rummage sale this past saturday (did great!) and the day after that we had a family party for Tyler's 7th bday. Caitlin starts ESY (extended school year) next week, she got an extra week off as ESY is only 5 weeks so they tried to even out the breaks (a 2wk session, break then 3 wks session). Caitlin is doing ok...not great but could be worse. She is scheduled for long term monitoring in july. I hope they can figure out what is going on in her head. We are hoping to pinpoint if there is one spot or not that the seizures are coming from. I am in favor of surgery, the drugs are not doing it for her. She has been on 6 different ones already and we have almost maxed out now on topamax. (she also takes depakote). Well, getting late here and I have once again avoided working on the katie beckett forms...another thing on my to-do list. Have to get those in by the end of the month but I keep procrastinating...I hate filling that form out every year, it's depressing. I wish I could just write "no change". It is the same revision as last year (so nice that they have the rev date in the corner) so at least I can just copy what I put last year but still. I'm sure y'all can relate.

Lisa O.

[Donna Thomson]

Hi Lisa! Thank you so much for the update - I can really relate to everything you say. We had a DNR in place for Nick too - and basically for us, it said do everything except chest compressions (CPR), that would do him more harm because of his brittle bones. We lived across the street from the school, so they said they would just bring him home if anything ever happened (thank goodness we never had to face that). It was a Catholic School. Anyway, glad your meeting went well and it sounds like you have a good and supportive team. I hear you about the 'progress' forms. Have a great weekend, and hope you get lots of workouts in! xDonna

[Paul from Australia]

Hi Llisa.

Very good decision to have every thing in place if there ever was a major emergency. With miss Caitlin, we pray of course that there never will be that type of emergency. It sounds as though you had not only a lot of support at the meeting but also a lot of compassionate people, which is really great.

Caitlin will have a cool time at extended year newt next week. She will have a lot of fun .

We are very sorry to hear that the meds are not really kicking in as they should. Seizure control with some kiddos can be so difficult to control.

We hope that the long term monitoring will have many answers for your.

Please give miss Caitlin a very gentle down under hug from us.

God bless and seeya,

Paul, Alison and Grant the champ.

[Earth Mother 2 Angels]

((((((Lisa))))))

Congratulations on a successful meeting! You did a fantastic job, and I know that they all learned a great deal from you! Having a protocol in place really helps in a crisis. Your contribution to this protocol's development will be invaluable to parents, who may be faced with such a crisis in the future. Way to go!

I will pray that the long term monitoring in July will reveal the focal point of Caitlin's seizures, and that a plan of treatment will be evident then. I do understand so well your frustration over seizure meds and their lack of effectiveness. We tried so many on Michael, until I finally decided that he couldn't handle any more of them. But surgery was never explored for him. We found a tremendous lack of interest among the numerous neurologists we consulted.

And, yes, I can relate to forms. I could probably fill a Costco to the rafters with all of the forms I've filled out in 42 years. It's astonishing how it adds up. You have my empathy there!

Hope the summer goes well for all of you.

Love & Light,

Rose

[grace]

sounds like you were well organized and made it simple for them to know what you want. I'm not always clear on what I am asking for. Glad they were agreeable and the outcome pleased you.
Enjoy your summer.
and thanks for updating.
lucinda