pacrosby
DIS Veteran
- Joined
- Nov 6, 2009
- Messages
- 1,947
Hi Pamela! As another Central MA person, I just wanted to stop in and see how your planning is going. I love all the family fluff - your pics are great! Did Matty have his heart surgery at Children's? Both of my girls are followed by cardiology there, as they both have ASDs. And I love your energy.
How have you found working with the MA MAW chapter? We are just in the very initial stages of planning, though I have been verbally assured that Ali has a wish-qualifying diagnosis. I filled out the online form last week, but I haven't heard anything else yet. Did you start the process with a phonecall? How long did it take from initial referral to approval?
Anyhow, I have subscribed and I look forward to following you through planning and the actual trip!
Kelly
Hey Kelly

Yup, we are a member of the Boston Children's family. Who is your cardiologist? We've been seeing Jaime Levine since that fateful fetal echocardiogram 7 yrs ago. Gotta love her!!!!!!

The MA/RI MAW chapter has been unbelievable!!!! They have really risen above board for us. I will tell you however that originally I made an inquiry online (I think I read that that is what you did) and after not hearing for a week I decided to take matters into my own hands. I was just afraid that perhaps my inquiry would get lost in the shuffle. Once I made contact with someone they took my info and our pc's name and sent off whatever paperwork was necessary. After a number of weeks I got concerned, yet again. When I called to check on the progress I was told that Jaime had yet to send the info back






My suggestion would be to call them and make sure they got the info. You'd hate to just sit around and wait and wait only to find out it got lost in the shuffle. I was especially eager because Matty's wish involved being in WDW for the Xmas festivities. If they hadn't been able to push it through for this year we would likely have waited until next. Did you have a timeline?
Anyway I hope you find some useful information in and amoungst all my idle chatter!! (btw we are in North Grafton; my dh and I are originally from Concord and Lexington respectively)
Pamela
