A lil update

Im so pleased with how our appt with the primary went today I went prepared and said this is what is going to happen and laid it all out well the referal for Stanford was being today. I let our doctor know I was tired of my son being put on the back burner. So I should Know something im hoping within the week WOOHOO!!! I know our primary is just that a primary and has no training about AVM however he could have got on the net like I have to get a better understanding of the situation. He was like “I never thought of Stanford and if that was my kid that is where I would take him” Ty you all for being there and helping my son and I God bless

WAY TO GO!

Palo Alto is a neat place to hang out (expensive though). If you are on campus and have some free time, hit the campus book store. Also the campus tour for wanna-bees is fun and informative (also free).

There’s an excellent fish restaurant on El Camino Real (of course I forgot the name)–on west side of street south of campus.

Ron, KS

Dr. Steinberg is among the EXCEPTIONAL doctors specializing in the treatment your son needs. I can’t say enough ‘good’ about this brilliant doctor.
A reasonable place to stay for lodging is @ Pacific Inn, Redwood City and is close to the Univ.
and serves a generous b-fast.

Best wishes,
Patti

U guys are great :slight_smile: I can stay with a friend not to far from there and I will ck into some other housing when needed do you all know if there is a Ronald McDonald house or something similar like that in the area if not i’ll ask them. Cause of my sons age he is in the grey area of being a chilid and adult so there will be some other things we might be able to get. We will make the most of the time we are down there im sure.

Yrs ago no Ron McDon House.

Ask the staff at the neuro clinic to have the social worker / lodging person (I’m not sure what his/her title is) contact you. They have access to a condo unit just off campus west about 1-2 blocks, well within walking distance of the hospital. It’s a furnished 1 or 2 bedroom apartment, with underground parking.

When we were there, it was some fee, like maybe $50 per night, but that was still cheap then. Space available is the first criteria, and if you will be in the area longer is another. Of about 6 times we were there, we were able to stay in the condo once time for about 3 weeks.

Long term transplant patients stay there, but it’s a great place to stay if you can get in.

Ron, KS

Sarah,
That’s great you have a friend to stay with. Don’t know about a Ronald McDonald House, but the surgery scheduler will be able to answer that question and get you info.

Patti :slight_smile:

sarah said:

U guys are great :slight_smile: I can stay with a friend not to far from there and I will ck into some other housing when needed do you all know if there is a Ronald McDonald house or something similar like that in the area if not i’ll ask them. Cause of my sons age he is in the grey area of being a chilid and adult so there will be some other things we might be able to get. We will make the most of the time we are down there im sure.

Best wishes for you and your son.

Take care,

Debbie

Sounds great! I was at Stanford many times as a child (not the neuro dept though) and felt very well taken care of and very much “at home” while there. It’s a great little town and a wonderful place in general.

Glad your appt went so well and that you are moving things along in this journey. I’m sure that appt and the empowerment you asserted will be a huge help for the everything to come. :slight_smile:

Shalon