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!!!

Comments

[Grandpa and Gramille]

Great posting, great progress, great shots - we can't wait to see you! Sorry we don't have a built-in pool - maybe next year, but in the meantime, we have a nice kiddie pool thanks to Aunt Adrienne.
Drive carefully and we'll see you in a couple of days.
xoxoxoxoxoxoxoxo

[DANYA & ALFRED CROWD]

KEEP ON TRUCKING BENJY

[Nancy and Kulbir]

Sorry we have not written in awhile - we were busy getting married! Thanks for the good wishes; the best news on our wedding day was seeing the picture of Benjy standing so strongly. Keep up the great work, little Benjy! Can you send us an address for donations also rather than online for others whom I might be able to ask for financial support? Lots of love, Nancy and Kulbir

[Kimberly Alston]

Hello all, its been awhile since I posted however I have viewed all the postings to checkin with Superman and his family. I am so very happy to see that he is doing well and that mom and papa are doing well too. I miss Grandpa and Gramille and hope to see you all soon. My prayers are still coming and I wish you all the best. Keep up the good work Benjy.
Kimberly Alston
Hilton Durham employee