Benjy's Blog: www.BenjysBlog.com

Look at me Papa!!

FINALLY....after seeing Benjy struggling to pick his head up on his own a number of times, Josh got to witness Benjy effortlessly lifting his head up on his own and looking around.  It happened at around 5:30 this morning.  Benjy continues to get stronger, and as you can see from the attached photo...while I helped him slightly, Benjy picked his head up and held it up while in the "batting cage".  He also is showing more interest in his surroundings...here he's not only working hard to keep his head up, but looking at some of the toys that we have hanging in front of him...

Go Benjy Go!!!  Also great news...the EEG that Benjy had to go through as part of his 1 year studies showed NO ACTIVE SEIZURE activity!!!  YAY!!!!  He's been on Lamictal, but still a low dose and he's not nearly at therapeutic levels yet...so is it the low dose that's helping...or the pharmaceutical grade omega 3 oil???  Hmmmm....whatever it is, we'll take it!!

Benjy's cousin Marie and some of her friends came by to visit Benjy last night...Marie just graduated college...CONGRATS!!!  Ahhh...I remember playing "dress up" with her when she was just a little girl!!!  Happy Birthday Uncle John who is celebrating a birthday today...not quite the "big one" but getting REAL close!!  Here are some more pictures of Benjy...one in his new swing that Gramille and Grandpa got for him...good news is it's just a plain old "normal" Little Tikes swing on a hammock chair swing stand...not a "special needs" swing...so keep your fingers crossed that Benjy continues to progress nicely!!  There's also a picture of Benjy relaxing to some nice music...we're trying to expose him to more music, we think music therapy will be a very good therapy for him too.  Thanks again for all of your good wishes, thoughts and prayers.  And we're really happy that our friends Frankie and Cooper are out of the hospital and doing well...send some good thoughts their way.

HAPPY FIRST RE-BIRTHDAY BENJY!!!

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!!!

Where's the Camera????

That's what we were all saying as Benjy lifted his head on his own for the first time since he was around 7 months old!!  He even held it up close to a minute, but that wasn't long enough for us to get out of shock and find the camera!!  Benjy has been on his stomach more, spending more time in his "batting cage" and we think that's helping to build up his arm and neck muscles, among other things.  I did see Benjy lift his head up again a few days after the first miraculous event, he was in bed with me while Josh was visiting his family, and at around 4:00 in the morning I looked over and he effortlessly lifted his head and looked around.  He's gotten really close since then, so now we've got the video camera set up all the time, and cameras within grasp!  Benjy's also been focusing more, and last night he seemed to have another kissing session!  Gramille was here to keep us company while Josh was away, it was a huge help, and lots of fun.  She couldn't get enough of Benjy hugs!!  Benjy's latest EEG showed improvement, hallelujah!!  So, it looks like the Lamictal might be starting to do the trick.  We finally have an appointment on Monday for Benjy to start the VItal Stim therapy which we hope will strenghten his swallow muscles even more....we've been talking about it for at least 6 months now and FINALLY found someone who is expertise in using the machine on children....phew!!!  Although Dr. K still thinks it's "unusual", we are all now starting to think that Benjy is starting to develop allergies....poor little stuffy nose!!  The pollen here in NC is THE WORST, and allergies run in both of our families, so I'm pretty much convinced.  It's unusual since allergies develop when your immune system is strong and usually at this point in the process the kids don't have such developed immune systems...but remember, at his 6 month evaluation his system was already at 80% as opposed to 30 - 40%, so it's possible!  May 12 is Benjy's official one year post transplant anniversary....my what a difference a year makes!!!  We'll be starting his one year evaluations in the next couple of weeks, so please keep Benjy in your thoughts and prayers....we'd like to prove medically what we're seeing visually....that he has beaten the Tay Sachs and will continue to progress nicely!!  For your viewing pleasure, here are some photos we've taken recently....

Benjy in his "batting cage" before we decorated it...

Now it's more visually pleasing....and apparently very comfortable since Benjy loves to fall asleep in it!!!

Benjy looking very "Joe Cool" in his shades and his "Benjy" mickey mouse ears from our good friend Danya....thanks Danya, and thanks for the other goodies...including our favorite...the "Icky Sticky Frog" book!! 

Gramille and her little pookie!!  Here's an early Happy Birthday to Gramille who will be celebrating a BIG birthday on Tuesday!!  Also, belated birthday wishes go out to Grandpa and also Tanta Becky....

Thanks for checking in!!  Now I must get back to a nasty letter I need to send to Aetna...they don't want to pay for Benjy's therapy anymore and they don't think he needs nurse care...so we're in the midst of appealing the appeal.  Ugh.