Just letting everyone know , Josh will be admitted on Monday the 23 of November and he will have his surgery on the 24 th , i will keep everyone updated , and once again thank you to all for your kind words , encouragement , advice and knowledge in helping me understand this rare disease, Mich and Josh

That's great news.  I am sure you are both relieved.  Keep us posted!

Please don't think I am trying to be negative.  I wish someone had told me that after the surgery and the "physical" part of the Moyamoya is taken care of you have to be prepared for the emotional.  If I remember correctly Josh is 13?  I have been talking quite a bit with another parent of a teen with that had her surgery a year before my daughter and she agrees that it would have been helpful if someone had told her to be prepared for the emotional and school issues that teens have to deal with.  Because of their age they are with other kids that can be very supportive or not!  Even the teachers don't always "get it".  I just want to let you know to be prepared if you notice Josh getting out of sorts after the surgery.  We all thought Destin would be thrilled that it was over and she would be relatively healthy but they do have issues socially and academically after the surgery for a while.  Just be prepared and understanding  and don't get too scared when it happens.

Hey Mich

Josh will be top of my mind over the next few days, best of luck.

Stay strong and keep us updated
Mark (Luca's Dad)

P.S. I still can't help feeling that these moyamoya youngsters (teenagers) would benefit from communicating with each other

You & Josh have been on my heart & in my prayers every day, but I'll be saying extra prayers for you both tomorrow.  Stay strong!

Jenn

best of luck tomorrow. It will be one LONG and EMOTIONAL day. My prayers are with you.

Wishing Destin good luck tomorrow , Josh and i are in the teen lounge he is playing wi with another young boy , he is all hooked up to his iv and good to go , hopefully we both can get some sleep tonight, his doc and the team have been in to see him and all is good!!!! will update when i can , thank you all for your kind words and prayers!!!!!

Yes, it is a long day for you, the kind of day I wish no parent had to ever go through.  We're with you in spirit, hoping and praying that all goes well and that the news at the end of the day is good!

Warmly,
Jill

Many thoughts and Prayers are with your family, Josh and his surgeon today.

Atta boy for Joshua!  That's great news, and I know from experience the huge sigh of relief you've had.  Hopefully everything continues to go smoothly.  Try to get some rest for yourself - trust me, initially you'll rest LESS once he's home!  I remember many nights of sneaking in to my daughter's room, just to watch her breathe.  Scary stuff for a parent, but it does get better with time.  Hang in there!

Jill

Josh is still in ccu, the swelling sure is scarey , but i know to be expected , should be going upstairs to neursurgery ward this afternoon (fingers crossed), he had a good night !!!! Sleep is hard to come by and i finally ate something today for breakfast after speaking with docs , thanks again !!

Hi Mich,
sorry I have not been in touch.
I am very happy to hear that Josh had his first surgery. Thats is great news.
Do not worry swelling is very normal it will disappear in few days.
Take care and keep us posted about you little worrier, please.
Entesar 

Hi Mich,

It's a great new that you finally go home, Josh will recover more easy at home!! We are one os those who travelled to another continent (from Europe to America), but you can believe me, although we were alone, we felt that a lot of beatiful people was pending on us and supporting (everyone: doctors, nurses, even another fathers at the hospital, were very comprehensive about our situation, and gave us as much support as they could). We found amazing people in USA that we'll never forget ....