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 good news. Many prayers for a successful surery and quick recovery.Keep us postd when you can.
Mary Grace

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

Thank you all , as this mama bear is up at the crack of dawn , unable to sleep, but i know once everything is all done , there will be no more worries!

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.

Thank you for your advice , luckily enough the school , his friends everyone there is right behind him , everyone at school have been wearing braclets that say'' The Joshua Circle" his teacher is going to meet me at the hospital and stay with me thru the day , i think because he is in a small school it will help , there is only 240 kids in the school , also with Josh also having nf1 and being in the same school since kindergarden the kids are sadly to say used to him going back and forth to the hospital , thank you thou , as he will be admitted tomorrow and surgery on Tuesday , i will post something as soon as i can , Josh just turned 12 , please think of him on Tuesday morning !!!!!

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

Thank you Mark , and i must say i couldnt agree with you more!!!! About the pre teens and teens being able to communicate , i know my lil man didnt want to ask me aome questions because he was worried about me , go figure!!!!! I think they would benefit with being able to bounce things of 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 wishes for little Josh! I'll pray for him during the holiday.

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

Destin will be in the hospital tomorrow too.  We'll be thinking of you.  she is getting her angiogram tomorrow to see if her indirect bypass worked well and is growing lot's of new blood vessels...also will be checking the status on the side that didn't have the surgery.  I'll be watching for a status report on Josh.

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!!!!!

Big day for young Josh. Lots and lots of positive energy coming your way. Mich, it's going to be a long day; hang in there.

Mark (Luca's Dad)

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

Good news for Destin.  The surgery on the right side did it's job and she has lot's of nice fresh blood flowing through it.  The left still has a good blood supply as well.  She has very minor signs of the Moyamoya on the left so we will be monitoring it closely from now on but for now life is good!

Hope to hear good news from Josh very soon.  I know it will have been a very long day for you.  Update us when you can.

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

Thanks all , Joshuas surgery went well yesterday , he was joking around with the nurses in ccu , thats my lil man , lol , he had a ct scan today i havent seen the doc yet , he is still in ccu as his blood pressure is on the low side , but he is talking normally and still joking with nurses when he is awake, once they get his blood preesure up a bit more he should  be moved back to the neurosurgery ward!!! Thank you all for your kind words and prayers , i totally believe a knowledagablE (sp) doc with mm experience makes a world of difference as does many prayers !!!!!! luckily enough my lil man had both !!!!!! This mama bear very tired but will be relieved when he is able to go to a regular room ....will update later

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!

[smiley=hug.gif] Jill

Well done Josh and well done to the surgeons. The swelling can be quite frightening but will subside in a few days.

Stay strong
Mark (Luca's Dad)

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 !!

Did his eye swell up?  I am glad to hear he is doing so well.  Did he have the direct?  So sorry I can't remember.

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  :)

Its monday and we were set to go home today he is still a lil shakey being up right , so 1 more day !! we get to go home tomorrow!!! I am so happy i was ablwe to stay here to have his surgery done the Doc is amazing and did a great job , incision looks beautiful , to all of you that have to travel out of State and even from another Country my heart is with you , i know if i did not have the support we had here i would of lost my mind , at first when we thought we were going to have to go to California i was a lil relieved and afraid at the same time but i now know  nthat having support and family by your side is a huge step towards the recovery and healing aspect of this disease . thanks again everyone for all the support , Mich and Josh

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 ....

We are home !!!! WOOT WOOT !! He is eating and up and about but tires quickly , i know that is normal , the first thing he did was get in the bath , he says the water at the hospital was not hot enough, lol , he is still a little shakey when up and about but doing amazingly well , and will do much better at home , to those of you i missed wishing you well with everything going on with yourself and your munchkins sorry but i was there with you guys in thought!!!!!

AWESOME news!!!! It's always great to get home.Praying for continued recovery.
Mary Grace

Thanks all , recovery is slow but steady , he is getting some therapy at home because his balance is a little out of whack , but all is good! I seen a posting about aspirin earlier , Josh also has been having problems wiyj the aspirin he takes prevacid to help coat his tummy , it has helped!!

Am glad Josh is doing well. I also have to take aspirin325mg. since my surgery and am on prevacid. It has helped me so much.
Sharon

Hi all , its been just over a month since Josh had his surgery indirect route on the left side , he is doing amazing , he is still getting some therapy(OT) for his balance but doing great , since his surgery he has only had 1 headache which is great , he was suffering with them almost every day before the surgery , now just trying to get him back on a some what normal routine to get him ready to go back to school in Jan, i hope everyones holidays were good , ours were fairly quiet !!! Take care