Sorry...it's been a while since we posted, but somehow the camera software "fell off" my computer, now we have to download it again...and of course it's stuck somewhere in the storage unit! Luckily my phone takes photos, so I do have a few to share! First, Happy New Year to our Jewish friends and family and Happy Birthday to our sexy Aunt Mabel who just celebrated her 93rd birthday yesterday!! Also, please say prayers for our little friend Madison who has Tay Sachs and is going through the transplant now.
So, what's been going on with Benjy? Well, Josh has been busy trying to get Early Intervention and Medicaid in order...I'll spare you the details, but it's been a full time job. It's great that these services are available, but the hoops they make you jump through are ridiculous!! We're "told" that Early Intervention should finally kick in next week, so in the meantime, thank you to the generosity of so many of our friends and family, we've been able to start Benjy on physical therapy. And, we found a real magician of a therapist...he does a special kind of therapy called Medek or CME, developed by someone in South America in the 70s. There are very few therapists in the US who are trained in this method, so we were very lucky to find Jake. Luckily, he will be able to continue the therapy under Early Intervention...we only wish he had 7 days a week free to give us!! We have already noticed a lot of changes in just 7 sessions. We couldn't be happier!! He also teaches us things to practice at home...and Benjy really seems to love it. He works extremely hard at it, but I think he's starting to feel stronger and that makes him happy. He's even starting to focus more too, so keep your fingers crossed that he continues to do well and progress. Here are some photos ...
Here's Josh performing one of the "magic tricks"...not an easy task...but look at the results!! Pretty amazing stuff...with very little support Benjy is able to almost stand....
Here's Jake showing us how to do a sitting exercise with the added bonus of improving head and neck control.
We still are "in between homes"...Benjy and I stay mostly with my folks while Josh goes back and forth between here and our old apartment where his dad is staying. We did get a treat this week...we got to stay at the "W" hotel in Union Square where I had a work event. Benjy really seemed to like the change of pace and NY excitement. And, it was obvious that he was seeing, when he checked out our celebrity spokesperson, Jean Smart...it was kind of funny...he's got eyes for the pretty ladies!! Oh, that reminds me, make sure you get your flu shots this year!! Benjy already got his!! If you want to find out where, you can go to the Lung Association's website at www.lungusa.org and type in your zipcode under the flu clinic locator. We heard some very sad stories about people who didn't get their shots, so don't take a chance!!
Wow - it's been almost a year since Benjy was discharged from Duke and the changes are quite remarkable. I remember how thrilled we were when Benjy picked up his head for the first time, now it happens every day. He now has a wonderful therapist, Jake, and he's making up for lost time (no therapy at all for more than two months). Again, thanks to our wonderful family and friends who have made generous donations, sent gifts, emails, phone calls and prayers. Many of our friends and family stop in to visit Benjy and we welcome all positive, upbeat visits. Although we will desperately miss Benjy and Beth when they find a suitable apartment, they should all be together. If anyone knows of an apartment in the Bayside area (at least 2 bedrooms), please let us know.
We ask that you please continue to pray for Benjy and his mom and dad.
We are very grateful to all of you. God bless!
Posted by: Gramille and Grandpa | September 24, 2006 at 04:14 PM
Hi, all! Just wanted to pop in and say "hi" and wish Benjy a happy fall day. It's beautiful here in CT, so I can only imagine you're enjoying the same cool sunny weather we are. :)
Hope all is well. Hugs, Love & Prayers across the miles!
Cynthia Frank & Frankie
Posted by: the dematteis family | October 16, 2006 at 01:01 PM