Entering Back Into the Real World: A Quick Update on Parker

Since Parker’s surgery, on March 2, on his legs, ankles, and feet, it is officially confirmed that Parker is OUR HERO and absolutely stronger than he ever thought he could be.   Tomorrow will be his first outing out of the house and we will be going to the doc to get his casts on.  Once the casts are on, then he can go back to school.  So, he is going to try go back on Friday to take the state writing test; since the deadline is Friday.

He is progressing but definitely has a very long way to go.  Last night was the first night that he didn't call over the “walkie talkie” for help.  Michael had a meeting with his pain management doctor yesterday morning and conference called me in on the phone and we are adjusting Parker’s meds to hopefully help him out.  The struggle has been the shooting pain, some minor bleeding at the pin-sites, numbness, and muscle cramps.  And even though he had a fever yesterday, we think it was more JA related than surgical…so we are incredibly thankful that there hasn't been infection.

We will try to update more this weekend.  For now, we thank everyone for the out-pour of love and we ask that all of you please either sign-up to walk with us on May 2 (it’s free to register) and/or please consider making a donation in honor of Parker and Logan.  Click here to get to the walk page.  Time has slipped away from us and the walk is just over a month away; so we need to get our team together very soon so we can make our shirt order.  We are forever grateful!

Much love,

The Lentini Family

P.S.  There is one more picture below so if you are skirmish and don't want to see a bruised up foot and a pin poking out, don't scroll down .

.....................................................................................................................................................................................................................................................................................................................................................................................................................................................

Surgery is Done...Now for a Whole New Kind of Torture Full of LOVE

In Pre-Op

Never ever did I imagine my life would take me on this journey…All my life, I have wanted to work with children with disabilities…but never did I think I would have children with disability…I have dreamed of becoming a mother…but never did I believe I would be the mother of two children with chronic illness.  I have hoped to marry a loving, caring husband, but never could I imagine I would partner with the most amazing individual with incredible amounts of love and he shares it all with me and our two beautiful boys; and still he has love to spare.

Some days my brain feels like its on overload.  Today is one of those days.  Mixed feelings fill my heart, giving me a sense of emotions-on-overdrive…I just went from tough mean-mommy, to having a sense of stabbing sadness of what Parker has to endure if he wants to walk, to my heart breaking knowing that he is telling us (PT, nurse and me) the complete truth that he hurts so very bad, to knowing I must muster up that tough love and MAKE him do what he doesn’t want to do because he knows it will cause more and more pain…  I had to make him put those arms with flaring shoulders and wrists down and wiggle and scoot and drag those million-pound legs/feet and lift himself into his wheelchair.  Then the torture continued as we had to then get those legs off that bed and down onto the wheelchair foot rest as tears rolled down his face and “I hate you all” came out of his mouth…But… the one emotion that is emerging more than all the rest is incredible pride in the strength and bravery that Parker is enduring this…because he DID it, he really DID it with splints on his legs/feet, cadaver bones piecing him back together in alignment, and pins criss-crossing through his bones holding it all together and in place.   

I know there are many adults with RA that have had reconstruction…but we only know a few kiddos who have endured some sort of reconstructive surgery.  WOWZERS!  I am so incredibly amazed with each and every one of those kid-heroes.  What they have accomplished is a miracle.  I just watched my kiddo go from hating us to just about doing the entire transfer back into bed, with such determination, that he did most of it with his own strength and not one complaint.  The nurse was shocked!

Gram & Gramp

This hospital does not have pediatric rheumatologist; and so the medical staff rarely work with kids with juvenile arthritis.  So, to have a kid like Parker and all his complexity…well, let’s just say, that all have learned a ton this past week and they have been absolutely open to learning.  I actually really appreciate their interest and questions, verses just pretending that they “know”.  It is very refreshing and Parker feels really smart as he educates them.

So if you are reading all this…YOU are one of those really special people who care a whole lot.  We so appreciate all the out-pour of love, support and prayers we have received this week.  It truly has powered our entire family and we really needed it.  Many of you have asked how you can help…there are two ways you can help both us and children with JA.  One, our whole family is very involved with the National JA Conference this year because it is being hosted in Florida.  If you know a potential donor, in-kind sponsor, or you would like to volunteer with either prep or at the conference event, please contact us or Susan Cuellar (Florida AF office:  813-968-7000 or 1-800-850-9455 x11) and tell her you know us and how you would like to help. And two, as you may know, the walk will be this May and we would love for you to sign-up (it is free) and walk alongside our family on “Parker’s Purple Playas and Logan’s Dream Team”.  (Click here to sign up on our team.)  And of course, we also welcome donations to our walk team, too because we definitely need more research towards a cure, to send kids to camp, and to scholarship families to go to conference.

Like I said, never did I imagine that my life would take me on this journey…but it has and I am proud to say that I have become a nurse, a fundraiser, a conference planner, a JA educator, a counselor, a motivator, but most importantly…I am a wife and a mother who deeply loves my family and am so happy that there are people like you in our lives who love us too.

Parker's first post-op request was to see his brother, Logan.