July 14th was my 6yr old daughter, Cara's first surgery on her right side.  Took them longer to bring Cara back to her ICU room as she was having trouble with her right arm, hand, leg....meaning she had a TIA or even a mild stroke on the left side (unoperated side)...she's been in physical therapy, occupational therapy ever since...slowly improving..using her right hand more (yes she is right hand) but also talking in one words....now is repeating one words as if she's learning them.  She was going to start 1st grade but we have decided to have her go to Kindergarten again as her 2nd surgery will be August 23rd and we have no idea how much further she'd be set back.   While she knows answers to alot of direct questions but she cannot bring herself to find words to ask questions herself yet ("word finding" problem common in stroke patients)  I researched "stroke victims"... and one question was when you asked a victim "What color is the ball?" they'd have to fight to figure the word...but if you say give me the green one....they'd pick the green one.  So I asked Cara.   What color is mommy's pants?  She said blue (I went whew)...so I guess there is variation in level of damage from stroke.....praying that she comes back....and finding myself research deeper and deeper into the subject of MoyaMoya and strokes.  I have never seen her actually having the "TIA's"....just the after effect damage...with the "flying hand and arm" and dragging of the leg on the side of the flying hand and arm.  Cara now "holds" that hand to prevent it from going off.  it has ceased to "fly"....The therapy center that is helping Cara had never heard of MoyaMoya...they had kids of all kinds of problems but none with what Cara has...but they were interested in getting information on it....I forgot to ask you DJ for your persmission to make a print of the "What is Moya Moya?"   I made a print for them to read and put in Cara's file.  And the same thing for Cara's elementary school principal, school nurse, school speech therapist (which Cara is going to go to), her two teachers.  All want to help out and get her all the needed help once she gets over the second surgery.  August 23rd will be here before we know it...I'm bit scared this time around but know this is the only way to go, too.  I had no computer access while in Rochester, Minnesota...so will wait until I get back to Arizona to let you know how it goes.  I may be on few more times before we take off.
Thanks for listening.....tight hugs to all, cara's mom,   carol

Thank you Sue...for your msg.  Always helps....my influence was mainly set on the struggles my 3 teenage boys have had...they are 16, 14.5 and 14.5....the 16yr old and one of the twins have ADD....and didn't have stroke either.... all four of my kids were adopted , too.  And knowing what the boys went through at a younger age (Cara's age)...they didn't even have speech problems...so I could only imagine, vision Cara's future much more difficult had she been moved on to first grade.     At the open house on Friday the 6th (school starts this tuesday the 10th)...her Kindergarten teacher from last year expressed concerns of keeping Cara back when she heard the other Kindergarten teacher was getting Cara....worrying about Cara not being with her friends and not being challenged.   I finally said the most important thing is to "get Cara well" than worry about academics.  Plus she currently does not have the "emotions" that would make her upset not being with her friends either...very neutral.  Thank you for sharing your story, too.

Hugs,  cara'smom

   I felt the same way about Kahtleen and school, my main concern was to help Kahtleen recover.There was plenty of time to catch up with academics.She didn't moind at staying in Kind a second yr.She ended up with so many friend some who were in 1st grade and the new ones in kind.Her old friends would always say HI to her in the halls,on the playground, and in the lunch room.It was pretty coll to have "older" friends. We requested that Kahtleen have the same teacher for her second yr. of Kind.She was wonderful and grew to love Kahtleen and she did an awesome job with her.I don't think I mentioned to you Kahtleen was born with Down Syndrome also. Things would have been a little more difficult without the strokes.But I have to say this past year she is amazing everyone. She is reading at grade level and her speech is growing more everyday.Kathleen had strokes on both side so her right hand(she is right handed) is very weak still.This has made writting difficult,she can write all her letters but it's a bit sloppy and takes soooo long. I asked that she learn the computer keyboard and that they purchase a Big Keys keyboard for the classroom. She is doing awesome with it and does all her written work on the comp.This year they will have a scanner and scan all work sheets or book work so it can all be done on the comp.She can type almost as good as me (and she does it with one hand).Sorry for going on and on......
Mary Grace

Tyler had been held back in 3rd grade because he was finally catching up, he has a reading disability. He had his stroke Dec in 4th grade. The extra year had him to just a year behind in his reading, however the stroke took that from him and put him behind in math also. I believe the extra year helped him alot, because he is still better than if he had not had it.

I am a strong believer that if the parent feels a child needs an extra year, and it's not because the child "isn't getting it", then by all means give the child the time. I do also believe that the extra year will only benefit the child if it is before 5th grade, after that the child is more worried about what their peers think and will feel bad about not doing well enough in school.

As has already been pointed out, under 5th grade the kids don't know the extra year can be seen as bad. They just make more friends and "keep truckin'" so to speak. So Carol, giving Cara the extra year will only benefit her, because you are doing it for the right reason and she is young enough to roll with it.

I hope all goes well with the second surgery and will keep you all in my prayers.

Rena