The youngest doesn't seem to be bottoming out as deep, but some days are still a struggle.
It shows how tough she is that she gets on the elliptical and does 30 minutes with her heart rate in the working range every day that she does not get any other exercise. She drinks her water, gets her required salt in, and gets to bed on time. Her brain is learning that it is actually a sinking/passing out/vomit feeling and not a stomach ache. She has stopped running for bathroom and has learned to get herself down with her feet up.
Another mom told me that if it was her kid or her, they would just have to give her 'a pill'. Can you guess who that reminded me of immediately? Paula Dean.
SCHOOL:
School staff and students are extremely supportive of her.
I send her teacher updates. For example - "she is having tests at hospital Friday morning, will be in to school as soon as she is done." The tests did not seem to upset her, but if he knows, and she is upset later, he will be able to help her.
I went in to meet with high school principle last week. Youngest will be in his school next fall. I said she has odds and ends of things she asks about and I do not want her to worry for 6 1/2 months.
For example - I explained about her TENS.
I asked if she can have gym last period of her day (so she only has to change once, does not have to rehook her TENS machine, knows she is on the way home if gym was hard on her).
I explained how she has to carry water and drink Gatorade and take salt pills.
I said - if she is not doing well, can't be sent to nurse, needs to get down right where she is and get her feet up immediately.
You might have read that and thought - it is a little early. But actually it is not.
One there is the worry thing. And I do not underrate the worry thing. There is no reason to worry when answers can be found now.
And two, class registration is in a couple weeks. Now I can communicate to registrar that principle has agreed she needs to have gym last period. And it is already in the works that she and I will meet one on one with her teachers before school starts next fall.
CARDIAC TESTS:
Mayo doc and I agreed on two cardiac tests were her next step.
Mayo doc said if I could find a local pediatric cardiologist they could order this set of tests to be done locally (and then the results sent to them). These were simple tests. 12 lead EKG and Echo Cardiogram.
I called the hospital (I like, actually keeps their records/scans) and talked to the person who handles the cardiac testing desk. I asked who the pediatric cardiologists were and who would be best to work with Mayo. There were actually two in town. One does his continuing ed through Mayo in Rochester and was recommended highly by the hospital person. I then called my insurance to see if he was approved/contracted. He was.
I then called this Ped Card's office and talked to office manager. I explained the situation and she said they would be happy to work with Mayo/us. I am not sure we will ever even see this local doctor. So far I just talk to his office staff and things are faxed back and forth between his office and Mayo.
The local office gave me full sets of the orders so if I got to the hospital/testing and there were questions, I had copies. Good thing, because they did want to see the copies.
Youngest did very well with these tests. My mother and husband had both told her to ask them to position the screen so she could not see it and to turn off the volume. Youngest is squeamish. She had her ipod and earphones with her if she needed a distraction. There was a TV so we actually watched CNN and she was fine.
When the tests were done I asked who would get copy of the results. The answer was the local Ped Cardiologist would read the tests/scans himself and compile the report which would then go to her local GP and also to Mayo. I called my GP and left a message for the nurse that when she got that report, I want a full copy. I also had the hospital burn a DVD of the actual ultrasound for me. I left with it in my hand.
I am learning.
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13 comments:
It sounds like youngest is really working at her health issues, and you are being very conscientious about supporting her. I hope all turns out well for her. It seems like there is a lot to be done on a regular basis, but once the habits are formed, it will likely become second nature.
It is Catholic school week (nationwide) this week. I attended an event yesterday to represent youngest's school during this celebration.
(My favorite nun was on one side of me and one of the priests was on the other side. I chatted easily with both of them between speakers for the 2 hour event).
One of youngest teachers was there with me also.
She commented that youngest seems to be doing much better and that she was glad we had taken the step to mayo.
Youngest's homeroom teacher has told her that it is easy to help her because he knows what is going on (he has another kid with a chronic issue and he receives no information from that family and he said that makes it hard).
He then communicates to the other teachers and staff and it is very effective. Youngest does not have to spend her life explaining. She can just be as normal as she can.
you are right on her health issues beautifully! It's easier to deal with these things that are 'out of our control' by taking control of the things you can.
It might be worth while before school is over this year, to ask to have an IEP scheduled for a few weeks before school starts next year. All of her teachers/gym teacher/school nurse/principle will meet with you (and your daughter if you request), so you can all sit down together and go over everything. If they all have questions they can ask, and all can come together as a team to help the both of you. Also if there are problems with any of these teachers in the months to follow, you have the IEP report that they have signed to help 'get things straightend out'.
(IEP=Individual education plan)..schools call them IEP's
We attended an all day music event on saturday - youngest, middle, myself and one of youngest's friends.
We were in bench bleacher seating much of the day.
We were able to find seats where there was no one behind us and no one in front of us and youngest just kept rotating her position all day so she was not sitting with her legs down very much.
She would sit back (where the feet would go in the row behind us) and put her legs up on her own seat, she would sit in her own seat with feet on the seat in front of her, she would sit sideways where her feet should go and stretch her legs out.
When they all went to the restroom I did explain to the people two rows behind us why she was sitting so oddly and moving so often.
Because however she sat, her friend sat that way too in order to keep her company.
(in other words - if I had two 14 year olds apparently fidgeting about as much as they were, two seats in front of me, I would have wondered at their maturity and what their mother was thinking).
People were very sweet.
youngest was fine all day. She had packed her own food, gateraid, water, salt pills, etc. This is something where (in the past) she would have felt terrible by the end of the day.
the principle said we can all meet together, and that is what we night do, but at first glance, I think we will meet one on one.
I have met with every teacher she has ever had about a week before school starts to explain since kindergarten.
I do better one on one.
Academics do not come into this at all because she has no special needs there.
So it is things like - if she doesn't feel well - do NOT send her to the nurse as we are risking head injury on the way there. And she has to carry a backpack (some classrooms do not even allow even a purse) with her stuff. And she has to be allowed to eat or drink as she needs in class. And if she is not doing well, she has to lie down right where she is with her feet up and someone needs to watch her for passing out/vomiting.
We are in slightly different circumstances because these are private schools and because we are well known in a positive way. She is the third of my kids through these schools. Most of the teachers know her name already. There will be other teachers who don't know her name but know what family just by looking at her face. And the fact that we have a very positive reputation helps too.
I did just think of a way academics to come into it - if she is absent she needs homework notes in a very reliable way.
Hopefully we will not be dealing with many absences in high school.
But at the beginning of this year, this was an issue.
We then assigned one homework person and that helped.
And the way I communicated to this new homework person was to drive to her house and show her the poor quality youngest was getting from the other homework person.
When new one saw how bad it was, she did an excellent job from then on.
exactly as you said - controlling what can be fixed so the things that can't be controlled are more manageable. Very empowering.
Youngest would probably not qualify for an IEP, if she doesn't have academic issues or developmental disabilities (which she doesn't). (There is a lengthy testing process to qualify for an IEP.)
The other alternative would be a 504 plan. If you feel that they (school personnel) are not following through consistently, you could ask the principal about developing such a plan. You would meet with the "team" and put together a plan that would outline her needs and who (staff) will be implementing the support. This works quite well for kids. Best to youngest. Good luck with everything!
I don't think she will have any problems next year, sounds like you have all bases covered! And it sounds like she has good friends to help her through this too (so touching that her friend sat like she did so she wouldn't feel out of place :)
I like that you are so pro-active with regards to high school. It will make all the difference, I'm sure!
I think that was a good and proactive way to deal with HS. Lessens the stress, everyone is on the same page and transitioning is smoother.
Ditto that for the medical - top to bottom from finding docs, scheduling, getting copies. Organized and stress reducing. Well done for you and for your daughter. A blessing.
How is she finding the TENS machine?
She uses the TENS every school day.
I help her put it on each morning and she wears it until last period (gym) and then takes it off when she changes into her gym clothes. She is sensitive on one side. If the furthest one on the left is too high, it hits a nerve or something and twitches her.
On the weekends she waits to see how she feels to use the TENS.
But on a school day, it would be a hassle, too time consuming, to have someone put it on at school, so she just puts it on proactively in the morning.
I am not sure if the TENS helps physically or mostly calming, but it does work for her.
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