Benjy's Blog: www.BenjysBlog.com

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. 

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!!

Lazy Weekend

Benjy is enjoying a lazy weekend...making up for all of his hard work during the week!  Can you blame him?  He's continuing to get stronger, little by little each day.  We also haven't been to clinic in 2 weeks now, and this Tuesday Dr. K won't be there so she said unless he's not feeling well, there's no need to bring him by.  All good news of course!  We continue to wean Benjy off of the Topamax, and he continues to be much more alert.  He's moving his arms and legs more...still very little, but for Benjy, it's major movements.  He's gotten really close to smiling now on several occasions...we are waiting patiently for that day to come.  Some families have had to wait 4 years to see their child smile again...we're hoping it will be much sooner, since he's already showing signs.  This morning I leaned Benjy over the exercise ball, like his PT Jamie did in the last posting, and he kept his legs straight (even while I rocked him back and forth) for 12 minutes...and he would have gone longer if I didn't have to answer the door!  In the bath the other night he was moving his legs in the water and that was one of the times that he almost smiled.  He then got to a point where he was breathing hard...it became work at that point, since he's an extremely determined little boy...so we ended bathtime since we want him to continue to enjoy his baths.  Yesterday morning  his massage therapist Bill was leaving and saying "Bye Benjy"...so I picked up his arm to wave goodbye, and don't you know...Benjy very slowly picked up his other arm and moved it back and forth!!  Coincidence or is he starting to put the pieces together?  Of course you know what I think!!  We're starting the search for the perfect team of docs...and as we've said in other postings, that likely will be back in NY.  Dr. K unfortunately doesn't have cooperation from many of her co-workers...some doctors don't believe in what she's doing, and don't believe that what she's doing works...despite some of her success stories.  My brother John told me about a book that I need to read, in which it describes scientists over the years...saying basically that many of the scientists never change their opinions, even when shown things that prove them wrong ...like, yes, the world really is round and not flat.  Anyway, we see the improvement, and Dr. K says there's no signs of disease progression, so we'll just leave it at that.  We know that there are world renowned docs like Dr. K who are interested in Benjy, so we're confident that we'll have the best of neurological care when we return home-home.  Happy birthday greetings go out to Benjy's cousin Victoria, and Benjy's aunt "Nanny", who both are celebrating today and tomorrow.  We also want to send our thoughts and prayers to our good friend Adrienne whose fiance passed away, after a long struggle with various diseases.  We know that Adrienne was the light of Mike's life, she really showed him what living was all about.

A Busy Couple of Weeks...

I apologize to all of Benjy's "regulars" for not posting sooner, but it's been a busy few weeks...and now that I know how to post photos, I feel obligated to do so for each posting...which as you can imagine sets me back a bit since I'm not a techy geek like Josh or my brother John!  Anyway, things are going well with Benjy...the virus is long gone, thankfully.  We've also been weaning him off of one of the anti-seizure medicines, and he's already starting to wake up from his long snooze.  The last EEG still showed signs of seizures, so the plan likely will be to take him off of this one, add a new one and then start weaning him off of one of the others.  He still hasn't been seen by the pediatric neurologist (!!) and he's got an appointment in early April...apparently he's not high on the priority list for this particular neurologist, so we're starting our search for the perfect neurologist(s) ...which likely won't be here in NC.  We're also looking into complementary therapies too...and tomorrow we'll likely start Benjy on an omega 3 supplement.  Funny thing...I spoke to an epilepsy expert who said when medications aren't working on children with seizures, as a "last resort" they try omega 3 oil and in some cases the Atkins diet.  Of course Josh and I thought....why wouldn't they START with something like omega 3 oil if it works so well???  After all, it's got way less side effects than the powerful anti-seizure drugs!  Oh well...at least we found out there are some other options to try.

Part of why it's been so hectic was because I finally made it North....got to meet my "new" cousin Tanner (9 months old already), see my grandmother....and got to meet the newest cutie-pie, my niece Katherine Rose!!  Josh knew the only way I'd take the trip would be if he told me at the last minute, and if he hired our fabulous weekday nurse Margaret to work the night shift over the weekend so somebody would be watching Benjy round the clock.  Benjy's Tante Becky came to visit too, so I really felt like Benjy was in great hands.  This past weekend Benjy's grandmother, "Iggy" as she likes to be called, visited.  We had a great time...and now Iggy is taking on the job of helping us find the perfect neurologist...she's making initial contact with the docs...which will be a huge help since Josh and I just don't have the wherewithal to deal with the initial intro phase...no call backs, lots of questions, blah, blah, blah.

Since I haven't figured out how to add photo albums to the website, and Uncle John...now known as Daddy to little Katherine Rose...is just a little busy now and probably won't get to add Katherine's album to our site anytime soon, I invite you to check out her website at http://actforlove.typepad.com/katherinerose/

Here's Benjy with his physical therapist Jamie.  You'll notice he's wearing his new "theratogs" which are helping him already!  This photo is particularly significant because he's weight bearing on his legs...without Jamie holding on.  He was able to keep his legs straight for at least 5 minutes...even while Jamie shifted his weight back and forth...a definite sign that he's getting stronger...and it gives us hope that he will someday be able to walk.

Benjy with his Iggy...he's a definite handful!!

Welcome Katherine Rose!

We are very happy to report that Benjy's new little cousin, Katherine Rose, was born tonight...and we're told she's a real cutie-pie!!  Little Kate, or K-Ro as her dad calls her, is my brother John and his wife Leigh's first baby...the second grandchild for Benjy's Gramille and Grandpa and the 3rd great grandchild of Benjy's Nana...Rose.  We look forward to seeing photos, and post them for all of Benjy's fans to see!!

We've been keeping busy, Benjy had the "small round virus"...also known as the "winter vomit virus"...and since Benjy can't throw up due to his acid reflux surgery, well let's just say it did come out the "other end"!!  Luckily we're in great hands here, so Benjy was  followed very closely and we went into the clinic for several days in a row so he could get IV fluids, etc....and we're happy to say he's feeling MUCH better!!  Not before I caught it...along with Benjy's nurse Margaret...and even Margaret's boyfriend Freddy!!  Once again, we're very happy that we were able to stay under the watchful eyes of Dr. K and her crew while Benjy's immune system heals.  Hopefully we'll be able to head back north at some point soon, but in the meantime, we're so thankful for the wonderful care, therapists and nurses we have while we're here.  Not to mention the awesome 3 bedroom 2 bathroom cottage that we would never be able to afford in New York!!  Oh well!!  In other news...we're weaning Benjy off of one of the anti-seizure medicines, and he's already starting to wake up more.  They did increase one of the others, and we'll go for another EEG soon, so hopefully the seizure activity will start to decrease.  We haven't seen any outward evidence of seizures, so there's a debate amongst the doctors as to whether or not you treat the EEG or the patient...my guess is that we're falling somewhere in the middle of the two ends of the spectrum. 

Well, I just wanted to give a very quick update, and give a big HAPPY BIRTHDAY to Katherine Rose!!  Also, send out some good thoughts to our cousin Vin who's dealing with painful kidney stones at the moment.  And, thank you to new grandparents Mary Helen and Jim (K-Ro's grandparents -- Leigh's parents) who brought Benjy a very special candle and attended a very special mass with the Pope during their recent trip to Rome. 

2 Years Old...

Our little Benjy isn't a baby anymore...he's officially a toddler...even though he doesn't "toddle" ....yet.  We had a low-key celebration on his actual birthday last week...highlights of the day had to include the chorus of "Happy Birthday" that my co-workers sang....from 3 different locations ...New York, DC and Connecticut!!  We also got to hear the traditional off-key "Happy Birthday" song being belted out by everybody's favorite Aunt Mabel....and Benjy's Tanta Becky serenaded him with her very on-key rendition of the song.  Gramille and Grandpa were here to celebrate too, but on Benjy's actual  birthday he was a little tired, so we held the real celebrating until Uncle Mike and Aunt Wendy came on Friday...and it really turned into an actual celebration!  We had a cake that was made by the 85 year old mother of Benjy's nurse Margaret, so all in all it was a fun day.  We even managed to sneak in a teeny weeny bit of frosting for Benjy to taste...certainly not enough for Dr. K to be worried about!  It's been such a help to have Gramille and Grandpa around...we even convinced them to extend their stay...twice in fact...maybe because of the yummy breakfasts Grandpa made EVERY day??  They also got to see Benjy getting stronger, which was great.  We also had a busy week with Benjy's 6/9 month tests.  Unfortunately during the EEG they still saw seizure activity.  While we don't notice any outward manifestations of the seizures, and in fact Benjy continues to progress slowly but surely, the doctors don't want to give the seizures any opportunity to cause any damage.  So, we had to double his already high dose of one of the medicines, and increase one of the others.  They will do another EEG on Wednesday, and in the meantime I'm busy researching all types of neurologists, and therapies that can help control seizures.  Before increasing the dose, we went a full 2 weeks without using the suction machine!!  Now, unfortunately the little guy is so wiped out, at least until he gets used to the increase, that we have had to pull out the machine again several times over the past few days.  We know it's just a temporary setback, he's shown us all how strong he is and we're hoping it won't take too long before he gets back to his old self.  We'll keep you posted.  In the meantime, thank you for all of your good wishes and presents for Benjy's birthday.  As you can imagine, I'm pretty behind in my thank yous these days, but that doesn't mean we don't truly appreciate the generosity and good wishes and prayers from our friends and family.  We also know that on May 12, we'll be celebrating another birthday...one year post transplant...so from now on Benjy will celebrate 2 birthdays every year!!

Some more pictures from Benjy's birthday....

80% !!!!

This was a great week.  Benjy's 6 month immune study results came back, finally, and they showed that his immune system has recovered 80% of the way!!  Since the test was taken well over 6 weeks ago, it's possible that it's even higher at this point.  "Normal" for this point in the process is between 30 - 50% ...so you can imagine how thrilled we were!!  Once his immune system is at 100% then he'll start the vaccine process all over again, since all of his vaccines were wiped out when his immune system was wiped out.  Benjy also has been gaining more strength...this week he held his head up several times for at least 30 seconds, one time he even moved it back and forth while holding it up on his own!  He still can't pick it up on his own, but once I help him get to an easier point, he lifts up the rest of the way.  We also set a record...so far we've gone 3 1/2 days without suctioning him.  We started him on Robitusum...and I've started sprinkling turmeric in his pediasure (do a google search on turmeric, it's being studied for cystic fibrosis, Alzheimer's, etc.) and he's been really starting to handle his secretions much better.  His cortisol level also came back normal....which means they will likely take him completely off the hydrocortisone soon.  He's almost completely off the FK506 (the immune suppressant drug that is vital to the transplant process...it helps the body accept the donor cells)...if all continues to go well, he'll completely be off that within the next several weeks.  Benjy's Zeide came to see him for a quick visit, and his Gramille and Grandpa will be in on Wednesday to celebrate Benjy's birthday on Thursday.  Here are some recent photos...

Benjy holding his head up....

Benjy outside one day last week...he didn't even need a sweatshirt...

we still can't figure out how to dress in this NC weather...one minute it's 70 degrees, the next it's 40...obviously this wouldn't do!!  It's okay for the bowery bums, but not our Benjy!  (Note the bottle of Wild Turkey...)  :)

On a serious note...we asked Dr. K if there was a fund for people to donate to that would help children like Benjy.  They are currently working on enzyme replacement therapy, which not only would allow children with these diseases to avoid the horrors of the transplant process, but if Benjy needs it, it likely will help repair damage that might have been caused in his brain.  They are around a year away from clinical trials on children whose diseases were too far along to enable them to be candidates for a transplant, and if all goes well, following those trials, it would be a possible treatment for Benjy, if he needs it.  The information is as follows:

Connie Stephens
Program Administrator
Pediatric Blood and Marrow Transplant Program
Box 3350
Duke University Medical Center
Durham, NC 27710

These donations will be acknowledged by the Duke University Medical Center Gifts Department and will be eligible for tax credits.

Thanks!

Is it REALLY January??

We've been having a couple of days of really nice weather...almost 70 degrees!  Benjy spent a lazy day yesterday sitting outside in the beautiful sunshine....which is something we try to do often.  Remember, he spent 5 months in the hospital, so basically 5 months without fresh air, so there's plenty of lost time to make up for!

This week has been another good week for Benjy...each day he continues to get a little stronger.  Jamie, his physical therapist noticed that his trunk muscles are starting to get stronger.  Ellie, his occupational therapist noticed that his eyes were in mid-line (vs. floating upwards) for most of his sessions...a definite "flip."

It used to be that his eyes would go to midline occasionally, but now that's where she's noticing they are most of the time!  During his session this morning, Benjy continued to hold his head up, after Ellie let go, for several seconds, several times, definitely showing stamina. Benjy's speech therapist, Avani, continues to be pleased with the way he's swallowing, sucking, chewing...and making good facial expressions.  The other day he was mad at her (I think because when she lifted him up, his nose was a little squished) and he let her have it!!!  His nurse Margaret and I had to leave the room, we knew he was mad, but he looked so cute, we didn't want to laugh in front of him! 

Benjy got his new stander this week, a little more "cheery" looking, still, however, looking a bit like a torture chamber!!  Here he is with his toy pig that Christine, Kelsey and Lexi sent...that might be even more annoying than the Elmo (still getting plenty of use...as you'll still see in the background!)  Benjy also enjoys the Christmas tree so much that we will be converting it to a birthday tree, in celebration of his upcoming birthday on the 26th.

CONGRATULATIONS goes out to Benjy's Uncle John who is one of five finalists in PR Week's PR person of the year award.  When Benjy was first diagnosed, John started stempac.org in an effort to convince the political world of the importance of stem cell research, for children like Benjy.  This was done as a sidebar to his fulltime job.  We're proud of you John!!

Finally, please continue sending out good wishes and prayers to Aunt Mary who is still recovering.  Also, our former neighbor at Duke, Michael, has to come back for a visit next week due to some health issues, which hopefully are minor and will resolve quickly...so send him some good vibes too!

Benjy: Web Superstar!

Well, we knew Benjy was popular, but... now we have the numbers to back it up.  Check out these stats, folks:

Total page views since launch:  18,051
Average per day:  64.70
Last 7 days:  238

Wow!  Over 18,000 page views, in just 9 months?  Way to go, Benjy!