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first day of school (Read 3860 times)
Danielle
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3 year old daughter with
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Michigan
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first day of school
Sep 6th, 2010 at 10:14pm
 
Hello. Just thought I would share with you that Adriana's first day of school is tomorrow. She is going 4 days a week for 3 hours a day. After all she has been through we weren't sure this day would come. Any advice about informing the school about her disease without freaking them out. We have told the staff about MM but not sure they fully understand. Her last MRI showed good blood flow. It is a very exciting time 4 us. Please say a prayer for both her & I. Thank you Danielle
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mg12061
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Re: first day of school
Reply #1 - Sep 7th, 2010 at 2:21pm
 
WOW Waht a big day!! I remember Kathleen's first day back. She was only 5 months post surgery and strokes. I can certainly say that it was much harder for me than it was for her. I did a lot of visiting in the classroom! I'm not sure of your daughter's exact physical state but Kathleen had several strokes. This is what caused most of my concerns and still does. The most important thing I had to be sure they understood was the level of exhaustion that could occure for Kathleen. For the first year(which was kindergarden) she never stayed the entire day. I also made sure they understood the importance of hydration and not to allow hyperventilation. I made sure she had a couple of water bottles and that they would put them in front of ehr not just aske her if she was thirsty ( she would most likely say no to that and never get a drink). I asked that I always be notidied of any injury no matter how slight it seemd to them. The reason for this is if a bruise appeared I would know there was a reason for it( as apposed to being from the asprin) also if she got home and favored anything like her arm or leg I would not jump to the conclusion that it was  TIA or stroke related. For Kathleen her days were not and still are not consistant as far as her work,memory, and stamina. I wanted to be sure they didn't blame anything on a "behavior problem" . I had all of this put in writting
( this was easy because she had an IEP anyway I jsut added it to my parent statement). If there are any concerns similar to these  that may affect her day I would be sure to put it all in writting and make several copies for the teacher,nurse, and anyone else who works with your daughter. I'm not sure about your daughter but Kathleen does not do well in the heat. In her IEP it is stated that she needs a room with air conditioning and if this is not available on any given day durring the warmer months I should be notidied. Her school is air conditioned but it doesn't always work and there were several days that she got to school and it was so hat she didn't make it more than an hour. These are just some things that come to mind that we have had to communicate to the people working with Kathleen. Some kids have no issues after the surgery but since ehr strokes wer so severe she still has some health issues. Good luck, and be sure to let us know how her first day is! Kathleen's first day was today also. and guess what ? I still worry! And miss her tremendously!!
Mary G.
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azhurds
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Re: first day of school
Reply #2 - Sep 7th, 2010 at 11:22pm
 
My daughter who is 3 is on the same school schedule that your daughter does.  I just explained to the teacher what her disease is and what it means "puff of smoke" and why they call it moya-moya and how it effects her.   I then told them what to watch out for.  My daughter always has water with her and on the really hot days/mornings (we live in Arizona) she does not play outside.  My daughter's teacher from last year is know teaching Kindergarten and I saw her today and she asked how is Mattie "puff of smoke" I laughed because it is easier to remember puff of smoke than moya-moya.  Her teacher this year is great and pay attention to her behavior.  She is sleepy or kept looking off into space.  Normally these things don't make a difference but in a child's situation with moya-moya it does.  I hope your daughter had a great first day.

Tish H.
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Danielle
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3 year old daughter with
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Michigan
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Re: first day of school
Reply #3 - Sep 8th, 2010 at 8:39pm
 
Wow thank you moms. What great advice. You both mentioned things I was overlooking. I like the idea about being notified of any injury no matter how slight. Her school is air conditioned 2. Adriana's strokes were quite severe. She is the only one in the class that can not walk. Also with right sided weakness she looses her balance easily while sitting. Her first 2 days went great. She is only there 3 hours but she has not cried or had a tantrum yet. Picture day is tomorrow already. The school called us both days for a dumb question & I thought my husband was going 2 loose it. He was kidding & said they should only call of its an emergency. I want updates though as much as possible. Thanks again, Danielle
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Little Luca
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Whatever it takes

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Re: first day of school
Reply #4 - Sep 9th, 2010 at 6:34am
 
Great thread for us too. Luca starts next year aged 3 and I've been quite concerned about the fact that she can't walk yet.

This is a perfect example of why this site is so fantastic. Just when you think you're the only one in the world experiencing something, another user turns up going through exactly what you are.

Thanks moms from a dad!

Stay strong
Mark
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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!
 
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Danielle
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3 year old daughter with
Moyamoya disease

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Michigan
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Re: first day of school
Reply #5 - Sep 10th, 2010 at 9:37pm
 
Yes I was surprised there has not been much talk on the board about school. I can't wait for conferences. Danielle
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mg12061
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Re: first day of school
Reply #6 - Sep 11th, 2010 at 7:08am
 
I'm so glad it was helpful. Kathleen was not walking when she started Kindergarden. She was in a wheelchair. She also couldn't use her left hand.We made sure she was assigned a TA right away. She still has a TA (teaching assistant). Kathleen was aslo born with down syndrome and has cognitive delays.She gets physical therapy speech therapy and occupational therapy at school. We have an IEP for all of this. Will any of your children need IEP's ? This is where I put everything in writting. Even if the building is air conditioned I make sure they will inform me if it's not working (which seemed to happen a lot last spring and it was very hot). As for the school calling with questions, I give them my phone number and cell. I tell them to call anytime with any question expecially if they're new to Kathleen. I want them to feel confortable asking me anything. I just think I'de rather decide if it's importatn not them. Another thing that I find exremely importatn is a communication notebook. It goes back and forth to school and anyone who works with Kathleen can write in it about her day and I can send anything I need to communicate. ie. how her morning was, did she sleep well,  or any questions I have. Just a few more ideas that came to mind. Kathleen's in 7th grade now so it's been a long road through the different grades and staff at school.
Mary G.
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rgrace5  
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azhurds
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Re: first day of school
Reply #7 - Sep 11th, 2010 at 12:46pm
 
I just wanted to add that my daughter can not walk.  Before she had the stroke she was crawling and pulling to stand.  In April of this year we ordered a kay walker for her and it has done wonders with her mobility.  She also wears a SMO brace that helps her ankles from turning in. She still has some left side weakness from the stroke but the walker has brought a new insight to the world.  Someone made a comment about a IEP.  My daughter has a IEP and included is physical,occupational and speech therapy.
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mg12061
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Re: first day of school
Reply #8 - Sep 11th, 2010 at 4:05pm
 
I agree about the walker. Kathleen was in a wheelchair for about a year (right after ehr worst stroke)and then she progressed to a Rifton Gait Trainer (walker). This helped tremendously because she needed to be weight bearing on her legs to get back on her feet. She's walking and almost running  now with an AFO on her right leg and a KAFO on her left leg.
Mary G.
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