Benjy's Blog: www.BenjysBlog.com

Aetna, are you listening?

Well, we've been "stranded" on Long Island since early July....hoping that Aetna would come to their senses and continue paying for Benjy's therapy and nursing.  So far, despite the letter writing campaign and now an appeal to the press, they've only come back (after 18 days of our waiting) with an agreement to pay for 10 hours of nursing for the next 90 days...no therapy.  So, Benjy continues to go without his much needed therapy..."thanks" to Aetna.  We really appreciate all of the letters that have been written, and now appeal to you to keep on writing!!  Please check out www.dearaetna.org for the latest info.  We're pretty hopeful that there will be some major press coverage, hopefully that will change their minds!  In the meantime, we have applied for NY's Early Intervention and a special Medicaid program that is supposed to help children with special needs...and we'll likely be accepted in both programs, but of course there's a wait! 

And, we want to give a HUGE THANK YOU to all of Benjy's "angels" who have sent much needed donations to Benjy to help us get over this hurdle.  Our friends and family from all over the world...including Moscow,  Alexandria, Houston, Atlanta the UK...and of course New York -- Long Island, Brooklyn, Upper NYC and midtown have been very generous with gifts for Benjy.   Even our friends from our neighborhood in NY took up a collection for Benjy's therapies.  We truly have been touched by all of your support and generosity.

We had hoped that in this posting I would have been able to say, "Aetna changed their mind!" but alas, that's obviously still not the case.  Please keep us in your thoughts and prayers and pass along Benjy's message to everyone you know.  The fact that an insurance company is dictating the health of our child...overruling what his doctors, nurses and therapists have indicated...is appalling. 

Now, for your viewing pleasure, here's a very contented, relaxed Benjy at Gramille and Grandpa's house.  While we're thrilled that he's enjoying himself, we really are hoping to start him working again, very soon.  Thanks for all of your support!

Donations: Please help

A lot of folks have asked how they can help Benjy, Elizabeth and Josh with the mountain of medical-related expenses they're facing.   The answer -- click below, and make a donation.   We can accept credit cards, and will process them using PayPal (a fully secure system, used by eBay, Amazon, and all the biggest web sites).

Just click here to be taken to a secure donation page:

If you can donate, please do.  Every dollar helps. 

please note: donations are not tax deductible.

Yank that Line!

After close to 14 months of having a central line hanging off his chest Benjy is now line-free!  For the parents of the children who have gone through this process, you know what a relief that is!  For those of you who don't know, that means no more dressing changes, line flushes, possible line infections, blood draws.  In addition, you can't get it wet, so that meant mostly sponge baths this past year...certainly no pool. So, we waited a day after the line was yanked and then took Benjy into the pool for the first time in well over a year.  He definitely seemed to enjoy it, even moved his legs and arms a bit...and gave us his attempt at giggling!  The smiles and giggles are becoming more frequent now, still not like the old days, but we've been told that a lot of muscle work goes into one little smile...so it will take time to gain back that strength completely.  Benjy's cortisol levels are normal, they actually have been normal for a while now, but now it's "official"...Benjy is starting to be weaned off the hydrocortisone which is basically the last of the transplant medicines.  He's still on the seizure meds and his supplements, but that's fine with us!  Benjy continues to amaze us.  While his PT Jamie  was on vacation, he surprised our substitute PT, Leslie, with strength we haven't seen before...he actually was standing with very little support!  Take a look....                                                           

      We were all pretty shocked, he did most of the work, and looked like he was putting out very little effort. 

This week, thanks to the generosity of our good friend Chris and Kelsey and Lexi...we'll be going for session one of the ABR therapy that we've hoped to participate in. It's in Norwalk, CT, so we'll be staying with Gramille and Grandpa on Long Island...depending on how Benjy's doing, we'll stay there for the week...and hopefully I can sneak in to cousin Anthony and Jenny's wedding!  Congrats also goes out to Nancy and Kulbir who are getting married in Chicago...wish we could be there!

We also would like to send special thoughts and prayers to two beautiful little girls and their families.  They both have Tay Sachs, one was too far advanced to go through the transplant and the other family is struggling with the decision of whether to put their child through the grueling process.  Our thoughts and prayers go out to you all.

                                                                             

Here's Benjy and Papa, on the first of many excursions to the pool!!  Exciting!!

AETNA ALERT - WATCH THIS SPACE - We are appealing to Aetna's CEO, hoping they will overturn their decisions to cut out Benjy's life saving nursing and therapies.  We are planning to put together a grassroots email campaign...and we'll need your help so check back soon!

THANKS!!!  New York here we come!!!