My 21 month old, Malachi, had a major stroke about 3 weeks ago. He is recovering wonderfully but always feel another stroke is looming around the corner. We know he will be needing surgery in june and have been looking into Boston and having Dr. Scott do it. What have been your experiences with him and his team? We live in Illinois and will be miles away from any support...do you know what they offer as far as housing for families? Is there a Ronald McDonald house? We have lots of questions...

Don't worry, Malachi is in the best hands. Dr. Scott and his team are wonderful, as well as ICU personnel and 9th floor. We travelled thousand of milles to go there because we live in Spain; my husband and I were absolutely alone ..., we didn't know anybody, but it was easier than we tought becasue the personnel at hospital was wonderful, and of course, I had also the support of this magnific site during the most difficult moments. Regarding the housing, we rented an apartment for one month because we didn't want to leave the country too soon. Please don't hesitate to ask as so many questions as you may have and try to keep strong. All the best. Paula.   

My daughter had her surgeries with Dr. Scott. I ditto all the wonderful things that Paula said. We traveled from NY, not all that far but far enough that we didn't have frineds and family nearby. We left 2 other children at home with friends also. BUT the staff at Boston were wonderful and caring and made everythign so much easier. There is special housing that area families offer, and they have rooms for families to sleep in the hospital both of which you have to "apply" for ahead of time. There is a hotel right next door to the hospital also. If you go to the webiste for the hospital you can get more information about the housing and a number that you can call to make inquiries.They're very helpful. I stayed right in Kathleen's room 24/7. My husband made use of the sleeping room.
Mary Grace

Dr. Scott and his whole team are wonderful!  You couldn't be in better hands, in my humble opinion.  I was 29 at the time (yes, 29 in a children's hospital!) so my parents stayed at the Best Western across the street.  But, there were time that they had to take me in for emergency CT scans in the middle of the night and they made sure to call my parents right away.  They are very attentive. 

AND, it's awesome when you say "Moyamoya" and they know what you are talking about!

Good luck to Malachi and your whole family.

-Shari

Hi Erinmom2,

Dr. Jodi Smith, Riley Children's Hospital performed two indirect bypass surgeries for my daughter last October.  Dr. Smith is a wonderful pediatric neurosurgeon, and she trained for two years with Dr. Scott in Boston, so I was very confident in her abilities.  She also immediately put me at ease upon our first meeting, both with her vast knowledge of MM as well as her bedside manner.  I cannot say enough wonderful things about her.

I know I'm not exactly answering the question you asked, but Indy is a bit closer to home for you than Boston, and there is RMH on the Riley campus so I thought I'd share the info.

Please let me know if you decide to come to Indy.

Best,

Jenn

Devon Nicole House. It is like a Dorm with food and other things and they just want you to pay what you can afford. If it is nothing they are fine with that. We spent a couple of weeks there on a couple of visits. I understand what you are going through and I do not think there is anything more scarier and more helpless than trying to help your child thru this. But you will. My daughter had her first stroke at 13 months and and another major one after her surgeries, with a few setbacks over the years. Today she is in the first grade and doing well, with a few disabilities, that she will overcome. Dr. Scott performed all the surgeries on our Daughter and was very attentive to all of our needs, and still is. If I email a question, I always have  a response within 24 hours. BCH was completely amazing, the staff became emotionally bonded to our situation and nurses (PICU). would come to see us on thier days off. They have cousenlors come to see you on a regular basis. I am sure every situation is different, but for us it seemed to be the best decision in our circumstance and I am glad we made it.
Cry when you need to cry. Get angry when you need to. Hold them when you can, and try and make them laugh. You and your son will get thru this!

Visit this site often, it helped me tremendously

Megans Daddy