The results of Benjy's immune studies are in and yes, our little Superman is officially at 100%! Now we'll start the vaccine process since his vaccines were wiped out as part of the transplant process. He'll have an MRI within the next couple of weeks and if all goes well then we get to yank out his central line!! We're pretty anxious to do that because we think Benjy will really enjoy going into the pool, it will make moving a lot easier and we hope to incorporate daily aqua therapy into his routine as soon as possible. Benjy continues to amaze us. He prefers sleeping on his stomach now, which means just about every night Josh and I get to view Benjy's middle-of-the-night show...he continues to push himself up! The exciting news is that when he pushes up now it's "normal" muscle tone as opposed to abnormal muscle tone that was more of a reflex reaction in the past. He's also moving his legs more and more and this morning while he was on his swing, with just the slight touch of the occupational therapist, Benjy started to move his own legs...even alternating a pumping movement much to the delight of his OT Ellie!
The past couple of weeks have been a bit stressful. Josh's dad had a heart attack and then underwent bypass surgery...but I'm happy to say that he's doing really well now. Josh has been back and forth to NY through it all and on this trip his dad is determined to get Josh to walk with him as he tries to hit a mile marker...pretty amazing after all he's been through! In other news, my aunt "Nanny" was diagnosed with Myasthenia Gravis, so we've all been frantically trying to learn everything we can about it. I've found out that the omega 3 oil, glyconutrients, even the turmeric that Benjy is taking also are good for MG interestingly enough. If anyone has information they'd like to share, please email me at ehlinko@aol.com or post it directly on Benjy's site.
On the good news front, my brother George and his girlfriend Nicole got engaged...yay! Josh's cousin Leah and her fiance Brian are getting married this weekend...yay! My adorable niece and god daughter Kate was christened last weekend...my little cousin Tanner turned one last weekend...and my brother John gave an amazing speech at a conference on stem cells this past weekend! Check out the new photos on Benjy's site, they're of cousin Kate...finally! Also, to find out more about what John is up to, check out Benjy-inspired Stempac.org.
Now for those families who have gone through what we're going through you know how financially devastating it can be. We obviously are determined to do everything we can for our precious Benjy, no matter what the cost. However, we're really starting to run out of resources at a point in which Benjy is really starting to progress. We're very anxious to start him on a new form of cutting edge therapy in early July, but that will cost us $8,000 a year, in addition to all of the other expenses. If you know of any organizations that offer grants and financial assistance to families in our situation I would greatly appreciate hearing from you! Please email me or post it on the site.
Thank you so much! Now for your viewing pleasure, here are some more photos of Benjy "in action"!!
Here's Benjy in his "batting cage" again. This time notice how he straightened his legs out too...basically in a push-up position!
Benjy still loves his swing!!
Thank you again everyone for your continued support, prayers and good wishes...for Benjy and for our friends and family who are in need of good thoughts.
So glad he's flying under his own power atta boy BENJY SUPERBABY!!!!!!!!!!!!!!!!!!!!!!! Look up in the Sky.
It's a BIRD.
It's a Plane.
NO!
It's SUPER BENJY!!!!!!!!!!!!!
Now all you need is the phone booth.
I KEEP HIM IN MY PRAYERS. He is truly a visual example of the LORDS love.
Posted by: DANYA & ALFRED CROWD | June 15, 2006 at 05:40 PM
Yay!!!! Great news about Benjy in so many different areas! I'm so happy for you all.
As far as the medical expenses, we were able to raise over 40K by starting our own foundation, with the help of friends and family who sponsored fundraising events while we were at Duke. It is monitored by The National Heritage Foundation. There's nothing like media coverage to get your story out to your community in your local newspaper and on local TV news channels too. I hope you can get the best care available for Benjy!
Email me if you want more info,
Lisa
Posted by: Lisa Tatem | June 17, 2006 at 01:27 PM
Benjy!
Congratulations on the 100% immune system! You're awesome!
I hope we get to see you in August! Frankie's going to get his lumen removed July 13. Maybe we'll hit the pool! :)
Hugs & Prayers,
Cynthia Frank & Frankie
Posted by: cynthia dematteis | June 29, 2006 at 03:05 PM
Having just learned all of the details regarding Benjy and his 1+ first year we will do what ever is possible to help keeping your "Superman" moving in the correct direction.
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Posted by: Zeta Beta Epsilon | June 30, 2006 at 10:41 AM