It's official!! Today marks one year since Benjy received his life-saving umbilical cord blood transplant. While we've struggled with a lot of things this past year, today the struggle focused on what to call today. One year transplant anniversary? Benjy's Aunt Wendy, Uncle Mike and cousins Alisha and Leah suggested the following ...happy 1st 2nd birthday; happy 1st transplant anniversary; happy 2nd 2nd birthday. I went with the heading "re-birthday" since the transplant actually gave Benjy a second chance on life....a re-birth. We'd love to hear other suggestions since we plan on celebrating "it" for years and years to come!!! Thank you to everyone for all of your thoughts, prayers, good wishes, gifts, etc., etc. over this past year....everything has helped our little miracle boy. Next week we'll start Benjy's one year evaluation studies, and hopefully we'll soon be telling you that his central lines were removed and he's started swimming! And, he's started getting his vaccines so we can go for a visit to NY! Or DC to see his new little cousin! So, keep your fingers crossed that all goes well. We took Benjy for his first Vital Stim session, and believe it or not, he has been less junky since....so it's possible that just one session might have worked a little already. I have to ask you to keep your fingers crossed again that Aetna will approve the sessions, and do it asap, otherwise they are $300 a pop...ouch!! Benjy continued to have a good week, despite the fact that what we think are allergies were acting up...and his ears were red at the clinic this week so he's now on antibiotics...plain old antibiotics, no IV drips, etc. Phew! Despite it all....Benjy gave a real smile last night, still not the open mouth grin of the past, but the closest to it in over a year!! Some kids take 4 years to smile post-transplant, so we're hoping this was the start of something great!!! Here are some pictures...we hooked a bubble maker up to a switch so Benjy can start to try to operate toys with his limited mobility. He is slowly working on it, and today he did manage to hold down the switch with only 2 fingers and lo and behold....bubbles!! He definitely seemed to enjoy himself!!
I was hoping to get a better picture of Benjy's shirt...it says, "They'll make a movie about me someday"....I'm sure they will!!
Happy Mother's Day to everyone!!!
Congratulations to our little hero and happy "1st Re-birthday". I like that title and also love his shirt "Someday They'll Make a Movie About Me", and also a book, and they'll write about him in medical journals. And because Benjy will grow up to help others less fortunate, the angels and saints will also sing his praises. He is an amazing little guy and an inspiration to everyone who sees him. The prayers are working - let's make a special request that Aetna comes to their senses. Keep on going Pookie!
xoxoxoxoxoxoxoxoxoxoxo
Posted by: Grandpa and Gramille | May 12, 2006 at 08:41 PM
Happy First Re-Birthday Benjy!
We are thinking of your family since Courtney shares the same transplant date. What a year!!
We went out to dinner last night and are having a pool party today.
Happy Mother's Day, too!
Posted by: Debbie Vehnekamp | May 13, 2006 at 09:26 AM
A big Happy Mother's Day to my godmother Elizabeth. A true inspiration to mothers everywhere... I'm so lucky to have you as family and a 'spiritual guide.'
And I can't wait to see my cousin - hurry up with those vaccines! ;)
Posted by: Baby Kate | May 13, 2006 at 01:32 PM
We have to second Baby Kate's post to her godmother and add that as a daughter, you were always a joy and you still are!
xoxoxoxoxoxoxoxo
Posted by: Grandpa and Gramille | May 14, 2006 at 08:33 AM
Dear Benji,
You go! I love the bubbles.
Happy 1st Re-birthday to you, Happy 1st Re-birthday to you...
When your Mom figures out what to call it - let me know. With Michael we have 2 transplant events to celebrate. His second one is coming up June 10th and we will be at Duke June 5-7 so we hope to see your happy face at clinic.
Hugs to everyone!
Posted by: Mary, Mark, Michael and Martin | May 19, 2006 at 08:22 AM
Benjy Your friends in London, that never met you, are sad that your little life has passed and proud that your parents and family and many friends have taken a little light from your life to help light the path toward embryonic stem cell research. George and Sandra in the UK
Posted by: George Durazzo | November 30, 2006 at 07:41 AM
Benjy Your friends in London, that never met you, are sad that your little life has passed and proud that your parents and family and many friends have taken a little light from your life to help light the path toward embryonic stem cell research. George and Sandra in the UK
Posted by: George Durazzo | November 30, 2006 at 07:41 AM