Benjy's Blog: www.BenjysBlog.com

A Time for Reflection...

As we celebrated Easter and Passover this year we couldn't help remembering last year.  It was last Easter Sunday when the partner of my OB/GYN went into the office to pull our file to see if we were tested for Tay Sachs as part of the amnio procedure...and he said "I have no idea why we didn't test you."  It was then that we packed up our lives and headed down to NC for Benjy's life saving experimental cord blood transplant.  Last year we celebrated Passover in NC, with our families who had come down to support us and meet with Dr. K to hear all the pros and cons of the transplant process...and of course we all knew that there was no question...we had to proceed since there were no other options.

This year we've come a LONG way.  Unfortunately, however, this Easter brought us some very sad news.  My Aunt Mary, my father's sister, passed away.  My father always referred to her as a "saint on earth".  She had gotten sick when she was a young woman and devoted her life to helping take care of others, never wanted to be a burden on anyone.  My fondest memories were of the times I spent with my brothers and cousins on our Aunt Nanny's farm, when my Aunt Mary would insist that we should never go to sleep on an empty stomach....and she would make sure we had ice cream...with wheat germ on it!  Try it sometime...it makes you feel less guilty about the ice cream!  Anyway, we will miss Aunt Mary.

In Benjy news...well let's just say he continues to get stronger.  Gramille and Grandpa have been visiting, and can't believe how much he's improved since their last visit.  Uncle Mike, Aunt Wendy and cousin Alisha came down for a visit (loaded with yummy goodies I might add!) and while they said Benjy looked MUCH better, he chose to sleep through their visit!  It wasn't until they left that he got in his stander and started moving his arms and head so much that after a 2 1/2 hour stint in the stander I had to force him out of it, he was enjoying it so much but at the same time was falling asleep as he still was trying to move.  Yesterday while he was sitting next to me on the couch (something he had not been able to do for more than a year) he looked at me and my father and I could swear that he puckered up and blew a kiss.  He did it several times, so even if it wasn't a kiss, it was obvious that he's continuing to gain strength.

Here are some pictures....

Benjy on Easter, sitting on the couch with his stuffed animal that Aunt Mabel gave him last Easter....

Down by the pool with Gramille and Grandpa....

horrible picture  of Mama, but check out Benjy's hand movement....

Escape from Durham...

at least temporarily.  Unfortunately Josh and Benjy weren't able to join me, but I was able to go to DC for not only my first out of town business trip in well over a year, but even more importantly, to see my little cute-as-a-button niece Kate...oh and John and Leigh too!  It was really nice to be able to get away and do something normal again, but the best part was coming back and finding out that despite the fact that our nurse Margaret had to call in sick while I was out due to her mother being admitted to the hospital (Josh didn't tell me until I was ready to get on the plane and head back home), I came home to find a little boy who had been in his stander twice that day, had massage and speech therapy, had his dressing changed...even went out for a walk with his Papa...AND sounded clearer than I've heard in a while!!  The laundry was done, the house was straightened up...so I've decided to leave town more!!  I do hope that we will feel comfortable enough taking Benjy on the next trip.  Oh, and did I mention that Josh also managed to, on his own, take Benjy to the pediatric neurologist (FINALLY!) ...even had to wait 2 hours.  Good news is that Josh was impressed with the doc.  Dr. K had started Benjy on a new anti-seizure drug, Lamictil, so now he's back on three.  The neurologist is leaning towards taking him off the Klonopin which is great news, because we all think it's adding to his secretions and his sleepiness.  He also explained to Josh that there is no conclusive evidence that the seizures Benjy is having cause damage...some neurologists think they might, some don't think so...and there's just no evidence to support the theory that they do.  That can explain why some docs think we should overmedicate Benjy while others say to take him off of all of the meds.  He also was fine with our giving Benjy omega 3 oil...he said that it does help to eliminate seizures in some people...and it's so good for us that everyone should be taking it.  We've got him on a high grade of it, so it doesn't have toxins or mercury like some might...but of course that means that it's 10 times more expensive than the cheapo brands!  All worth it of course.  We're also hoping to start Benjy on neurofeedback, if finances and schedules allow for it.  Neurofeedback also has been shown to help seizure control, and a bunch of other things too, and it doesn't have any negative side effects.  We've also started looking into a children's hospital in Westchester, NY...Dr. K is very excited about what they have to offer...it's a hospital, day clinic, pre-school...there's even a public school k - 12 attached to it...and everyone is positive and upbeat, and of course tops in their fields.  My folks went to see it along with my aunt and uncle and they were all really impressed too.  The only catch is...in order for Benjy to go to the pre-school, we have to be residents of Westchester...so if anyone has any suggestions on how to find affordable housing in that county, please let us know!!  :)   

Through a combined effort of several people down here who really care about Benjy and his progress, we've put together a low-tech contraption that we hope will replicate an anti-gravity state and enable Benjy to start moving his arms more easily. 

As you can hopefully see, Benjy was sleeping peacefully in his stander, and what you can't see is the fact that yes, indeed, Benjy was moving his arm while he was sleeping!  So, we've got to keep on being creative and resourceful!!!

Thanks for stopping by to read about our hero Benjy!!