My daughter was diagnosed with moyamoya & Chorea on July 10th.  She has had 4 strokes & we have chosen to go to Boston (we live in New Orleans, La.) for her surgery & are currently waiting for them to call us back with the date. Dr. Scott is going out of town for 2 weeks and would  like to try & get us up there in early September. She will be having both sides done at the same time because she does have blockages on both sides.   My daughter starts 1st grade tomorrow and I am a nervous wreck!!  Can anyone else please tell me how you handled your child with school before they had their surgery? 

It's been almost a month since we found this out, so it's still so new for us and any advice or information would be greatly appreciated!



Michelle
(Haleigh's mom)

Michelle,
I am sure you must be really scared.  I cannot help you with the school question, my son was only 3 when he had the surgery (he will be 5 in October).  But, we did let him go to his preschool from the time we got the DX until we were able to get to Boston for surgery (we live in Atlanta, GA). If you are like me, you just want to watch your child all the time to make sure he/she is OK.  Having said that, I think letting her start school would be a good thing. It gives you all something else to think about.  Best of luck to you.  Dr. Scott is great and the staff at hospital know a lot about moyamoya, which was comforting to us. 
Kelley (mom of Gray)

Michelle
I do not know about elementry but I waited a year before I restarted collage agian but I had to wait for the next semester to start.

I would talk to Haleigh's teacher and let them know what is going on and maybe she could start out slow and go 1/2 days untill Haleigh let you know she wants to go more.

Becky

Our son was 7 when he had his stroke and diagnosis.  He was in first grade.  Our first grade teacher spent time learning about his disease and wouldn't follow normal protocol if she thought he was having a problem.  She would call me directly to talk about things happening.  Sometimes he went for half days or full days.  Our son went back to school 2 weeks after surgery for an hour or so.  Then to  half days until he was ready for full days.  There really is no firm answer, but what you are comfortable with.

Hi Michelle,

My son Christopher suffered a stroke last April and spent a week in the hospital. The stroke effected his right side, especially his face and hand. He had his surgery done in Boston on May 31st of last year.

After he came home from the hospital, he did stay home a couple of days then went back to school the following week. His school would not let him comeback without a letter from his doctor. I also went to the school to talk to the teacher, nurse and staff. I am not far from my sons school so I can get there in 5 min if needed. I told them if something happened to Christopher while in school, and they felt it was an emergency to immediately call an ambulance then call me right away. If it wasn't an emergency, just call me right away and I will come directly to school to check him out. I was going to start him out with a few hrs a day, but he didn't want to come home, he wanted to stay the whole day!

Thankfully, nothing happened during this time at school and Christopher was happy to go back (he loves school!) I was a nervous wreck and still am even a yr after his surgery! I think you should do what you feel most comfortable with.

Karen

I can't tell you how much everyone's responses have helped ease my mind.  Although we know we aren't alone in this, not knowing anyone else going through this has made us feel somewhat at a loss. 

Haleigh had a GREAT day at school yesterday, while my stomach was in knots the entire day!  I cried the entire way to work.  Her teacher does happen to be a good friend of mine and I have spoken to the principal, so they are all working with us and helping to accommodate to whatever Haleigh needs.  Instead of going to recess, I brought a bag from home with a few of her toys, (i.e. coloring books, games, dolls) and she will pick a different friend each day to play with her during that time.  They only have PE twice a week, so during that time she will help out in the office which is great because she loves playing school. 

Thanks again for all of the advice!!!  If there is anything other advice you can offer please do so!  My sister-in-law found this site for us and I am very thankful to her for that. We don't feel so alone now!!!!