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Monday, May 25, 2015

Living in the Moment…

We really try to live in the moment…yes, sounds cliché but it is true.  We’ve learned that living in the here and now is much easier than looking too far into the future of what’s to come.    And we put much faith in believing that we are doing the best we can with each moment…and that is all we can do.

We are rounding up the end of the school year.  Logan has been done for several weeks.  He graduates from high school with an AA because he did early admission into college his senior year.   He received one scholarship and is waiting on several others.  This fall, he will start his junior year at the University of Florida, as he moves towards his dream of becoming a pediatric rheumatologist.    We are incredibly proud of him and we are packing in as much fun as possible, with our grown-up kiddo,this summer.

Parker has missed much school this year because of his chronic illness, the pain it causes, and because of the major reconstructive surgery he endured.  He’s been going back to school part days as much as possible.  He is only two weeks away from the last day of school; and he is still unsure if he will be able to proceed to the 10th grade.  This is causing him much stress even though we are stressing to him that he can only do his very best and we will support him moving forward no matter what happens.  As much as we try to explain to him that his health had to be taken care of first, it is very hard for a 15 year old to watch his peers move forward over and over…often leaving him behind (in many ways).  In the big scheme of life, we all know that his health is his “life”…but oh how it hurts our hearts  to know that he knows that his friends go “out on the town”, have dates, go to all kinds of fun events, play sports, drive cars, and do all kinds of fun “teen things”.

So we try to focus on the JOYS…Yes, Parker went through a very intense surgery on his legs, feet and ankles and it was way tough beyond words…but now he is walking and he is aligned and his pain in his feet and ankles have gone from a daily 10 plus, down to a 6.  And he doesn’t need his wheelchair much at all.  He even walked across the finish line at the walk, only 2 months after surgery.  And…Parker and Logan made their walk fundraising goal and raise over $10,000 with nearly $13,000 raised this year.

Some of you know, Parker has struggled with some heart issues.  His blood pressure is running low and his heart rate is running really high (even when at rest).  We have been working with all many of his specialists, along with is primary doc.  In fact, his primary doc has felt that he is so complicated that she would like him to see someone with more expertise coordinating multiple health issues.  So she has sent all his records to a pediatric critical chronic care specialist at our local hospital and we are waiting to get him in.  We have done our very best to try and get him the help he needs without the trauma of a hospital stay.  And the last month has been way intense with lots of tests and specialty visits. 

We have been working closely with his pediatric cardiologist and he really feels that this last surgery triggered his autonomic system to go haywire.  And although he sees this more often in teen females, he has seen this happen in a few others after surgery on limbs.  He feels that Parker has autonomic dysfunction or POTS.  His heart rate actually went over 200 right in the doctor’s office during his EKG…  The cardiologist said the heart monitor he wore confirmed his concerns and since then, he has worsened.  He is also having some GI issues, trouble swallowing, difficulty urinating, and sweats/chills.  So, we are trying to control the symptoms, while we try to figure out what hospital to take him to.  There are only a few in the US that deal with this. He said the wait time is usually 2-4 months to even get in and he will be there a minimum of 5 days.  Our choices are Mayo Clinic-Rochester, Cleveland Clinic, Children’s Hospital of Philadelphia, and NYU.  Vandy has one too but they really only treat adults.  So in the next 2 weeks, we are trying a few things and researching to figure out, given all his issues, which hospital would be the best.

In addition, we have been working on approval for 2 surgical procedures that he hopes to have this summer so that it doesn’t interfere with school.    One procedure is neck nerve ablations and the other is insertion of a nerve stimulator in his back for a trial.  The cardiologist feels that he can proceed with these procedures, but I have to admit, I do have my reservations.  But Parker has a ton of HOPE with what these procedures could do to alleviate his pain.  He dreams of getting off of pain meds and learning to drive.

On a joyful note, Parker's papallidemia is healed and so no more pressure on his optic nerves and they are almost completely restored.  This also means that the psuedo tumor is likely healed too!  Thank God!

Also, we are celebrating that Parker was nominated by his school for the Prudential Presidential Community Service Award and he won this year.  It was a complete surprise and he walked to the stage, in front of his cheering peers, to receive this amazing recognition that only the top 10% in the nation receive for their service.    

He is also thrilled that he got into Camp Boggy Creek for a week at summer camp.  This camp is really special to him and he really feels it is his heaven on earth.  This year, Michael’s work has a promotional fundraiser to send kids to camp too…I just love that they see the benefit of this amazing camp and what it does for kids with serious illness so that they can enjoy some serious fun!  We hope all of you have some serious fun planned this summer.


Wednesday, March 18, 2015

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 .





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Thursday, March 5, 2015

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.

Sunday, February 15, 2015

Parker is Getting Surgery in 2 Weeks

We finally made it to the pediatric orthopedic doc.  Yes…we have been putting it off, only because it didn’t seem to be “the most urgent need”.  We went, thinking that the doc was going to recommend “bracing” Parker’s left ankle.  We were definitely shocked to hear that Parker needs extensive surgery.

As Parker got off of the examining table for the doctor, his right foot hit the floor first and the doc immediately commented “Oh that right foot doesn't look too great”…but when that left one met the ground, he quickly shifted all focus to that left foot and ankle saying, “Oh he definitely needs surgery; this left one is way worse.”  Well, we knew it was worse but …gulp…surgery?!  He then went into great detail to explain that Parker needs surgery and for several reasons:  both ankles are collapsing towards the ground and the ligaments and tendons are not doing a good job holding things in place; his foot/toes are turning along with his tibia bones; and he felt that the issues with his feet, ankles, and legs could be contributing to the extreme pain he is having with his knees, hips, and spine. 

The solution, in two weeks, if all his docs clear him, he will be having surgery on both of his feet, ankles, and legs.  We had several docs recommend the doctor that we saw; and we are very glad that he is also the orthopedic surgeon; so it was a one stop shop.  He will be working on tendons, ligaments, and bones, making cuts in his bones to insert cadaver bones and pins with a goal of aligning both feet and ankles.   
Of course, Parker is not a straight up easy patient…not that this surgery is easy, but there are many things for his surgeon to consider.  The last time he had broken bones, it took 6 months to heal…much longer than usual.  He has full-on osteoporosis and of course juvenile arthritis.


His immune system is compromised due to his meds and also because he has hypogammaglobulinemia.  He has pulmonary obstruction and restriction.  And so, the surgeon is talking to his docs and he is going to use a bone stimulator to help with bone healing.  We are praying hard that his body won’t reject nor attack the foreign objects that they are about to insert to correct his feet, ankles, and legs.

He will have at least three days in the hospital; thank goodness this doctor is local.  He will then need to be out of school for at least a week.  The good news is the surgery is right before spring break…the bad news is recovery is during spring break…  But we are really trying to focus on the fact that he will not lose days at school since he is so close to going over 51% days missed at school.  But Michael, Logan, and I feel so sad for this kid.  It seems that every school break, he is struggling with something big, making it difficult to enjoy time off.  This means that Logan and Michael will be vacationing with our friends without us…so Parker and I welcome visitors to cheer him up.  Of course, call first.

Parker will have the first set of casts that cannot get wet, on both feet/legs for 4 weeks and he cannot bare weight on them either.  Then he will get a second round of casts that he will be able to put small amounts of weight on.  He should be able to return back to school, in a wheelchair, after spring break.

When I think back on last weekend at Camp Boggy Creek and how he danced and kept stopping due to pain, I just cannot imagine how this kid does it.  But he DANCED and he was HAPPY.  We love him so very much.

So here we go... on our newest journey...the journey to maintain walking and hopefully towards less pain.  Then, Parker, you can DANCE your little heart out!

Thursday, February 12, 2015

Yes, We are Blooming with HOPE...


Last year, after the JA Conference, I visited the botanical gardens, and I saw this quote that spoke deeply to me…

“A flower does not compare to the flowers around it; it simply blossoms and blooms where it is planted. “

It is very hard not to compare…As parents, we see our children alongside their peers and friends.  We watch them grow together.  As a parent of children who both have juvenile arthritis, we can see differences in our kids' development when "comparing" them with children their same age.  We have seen them grow at different rates both physically and cognitively and in some ways through their social-emotional well being.  It is really difficult to observe the struggles that our children have to endure, but I do believe that it gives them a very unique perspective on live and has caused them to be in full bloom.

This life with JA is where our family was planted…this is where our family will bloom.  And with each new blossom we celebrate our Yeses…
Yes…After 2.5 years of hospital homebound, Parker is back in school.
Yes…Logan’s JA is under control and so are his migraines
Yes…Parker is walking more and using his wheelchair less
Yes…Logan is getting ready for college
Yes…Parker’s vision is restoring
Yes…Logan won the pinewood derby at the St. Louis JA Conference
Yes…Parker has friends who love him for him
Yes…Logan is an amazing guitar player
Yes…Parker is a great photographer
Yes…Michael and I are proud parents whose family has bloomed and grown to include many families impacted by JA.
Our JA family is one big beautiful bouquet.

I am getting so excited about this year’s Juvenile Arthritis Conference...There are many dedicated volunteers and AF staff working hard to make this annual event full of networking, education, and fun.  But as we worked hard this past week planning the schedule, I was reminded that there is nothing like the relationships that are built through these connections.   These people are giving, passionate, loving, and dedicated to working together to support families. 

And I adore the theme "HOPE Grows Here"...As we teamed together, it felt a little like we were tossing the weeds, planting the seeds, and nourishing our souls; so that we could watch our great big JA Family blossom and grow even more together. 

JA has a way of showing us what really matters.  It has taken a long time to truly feel like I have some deep roots, outstretching branches, and a good strong footing.  You see, JA is like that big storm that bashes at one’s heart. The STORM reminds us of our reality…but with each new family I meet and with every story shared, we not only share tears of sadness, but tears full of laughter and joy.  

That balance gives us that strong footing to grow stronger, love deeper, laugh harder.  YES…it is possible to find the joy in life and to choose to celebrate our victories great and small. For it is HOPE that makes it feel like YES is possible …for with each small victory we share we grow a little taller and stronger.

First we have to have HOPE, then we can champion our yeses.

Monday, December 29, 2014

A Balance of Hope and Love

Some days, LOVE takes my breath away…We feel deeply grateful to have love in our lives. Somehow, I feel living with chronic illness makes love oh so much richer.  I have not written much lately, I have been deep in reflection and realization…living life and appreciating its gifts.

Our family lives in constant hope.  Hope that we will see gains and improvement.  In many ways we are constantly pushing forward with hope as our shield.  And when we dare to lower that shield, we still hold hope in our hearts; because with hope, we grow with the possibilities.  If we didn’t believe in possibilities, how could we endure?

And yet, I must acknowledge our reality…everything we do, we plan, we celebrate…we do with much balance; for we know that there is a cost.  I think this is the most remarkable strength that Parker has, but with that balancing act, he has to decide what to say yes to and what he will do to make his “yes” a reality.  Let me give you a for instance…Parker wanted nothing more than to spend time with one of his cousins who was home for the holidays.  But in order to do so, he literally slept all day so that he could see him in the evening.  He has to bank his energy, power up in a sense, so that he can sit up in the evening to play games at a table.  He knows his capacity and he must allow for it accordingly. 

Much has happened since I last updated and once again, we are processing our choices and next steps.  The pseudo tumor and papilledema is still there but improved and holding stable.  He is still getting treatment.  We are hopeful because his vision is better. 

JA has been unkind to Parker's mouth...he had the last of 8 baby teeth extracted.  Now we wait for them to start coming in before going back to the orthodontist.  I am a little afraid to see the next bill with invisaline.

After winter break, we need to set up an appointment with the orthopedic doc to talk about what we are going to do about Parker’s left ankle.  And recently, his pulmonology test showed that he needs a bit more pressure to help him breathe at night but that was easily amended on his bi-pap machine.  Finally, he is going to need to start gait training in physical therapy.  However, now that he is “aware” that his walking is out of whack, he is paying more attention to walking.

On most days, Parker is walking better and his doc would be so happy to see him swinging his arms in the halls of his school.  See he had to learn to “walk correctly”.  He is making school about 50-60% of the week and we are so grateful that his teachers are working with him.  This is the hugest success ever for him and incredibly draining.  He is beginning to make new friends at school.  For Michael and I, this is the most joyful thing we have experienced in a very long time.  It was so incredibly hard to see his friends continue on to the 10th grade and for him to re-enter school after taking a year off for his health and go back into the 9th. 

The coolest thing happened last week.  Parker had one of his friends over for a few of hours.  That alone was the highlight of his break…but when the mom came to pick him up, she looked at Parker and noticed how much shorter he was than her son.  She asked if they were in the same grade.  Of course, they were not anymore because his friend went on to 10th and he was in 9th…I said it was due to medical that he was held back  but they are the same age, thinking she must know about Parker’s JA…but she looked confused.  I said, oh, I am sure your son can catch you up to speed when you get home.  But in that moment, I was completely overjoyed…I wanted to yell…”Do you know you have the coolest son ever!  Do you know that he is the definition of a true friend?  Do you know that he sees my son for the cool kid that he is and the fact that you don’t even know that my son has major health issues is the best gift I could have received this year?!”  I knew that this friend of Parker’s was pretty amazing…but I love this mom for raising her boy to see “people”.



So we did try the growth hormone for Parker.  It was a daily shot and with each day he injected it, the worse and worse his JA got.  He got rashes, swelling, fever, and intense pain.  By day six, it was so incredible that we were advised to stop it.  Many asked if he really needed it anyway…well, yes…yes he does…his labs show he is not making growth hormone and he is not going into puberty.  His levels are whacked.  So yes, he needs it.  We never make medication decisions lightly.  We weigh the pros and cons and then try to make the best choices with much prayer for where he is at in this moment in time.  We have suspended the growth hormone and had to take Parker in for an infusion and even that was tricky because we didn’t want to make his pseudo tumor and papilledema worsen.  Also, with this last flare, his adrenal glands went wacky again.  So, once again, we had to increase the hydrocortisone.  I am happy to report, that after 3 weeks of intense pain, Parker seems to be on the down-side of the flare.  Now he seems to have picked up a bit of a cold though…he got his infusion of his immunoglobulin today and so we are hoping that helps. 

The pain management doc didn’t really like this last flare at all.  He is pushing us a bit to proceed with the nerve ablations that we have been putting off in his neck.  We decided to wait because Parker needed a true “winter break” with NO medical appointments.  The doc also talked to us about a new procedure that he really thinks will help Parker.  It involves a remote control battery that can be up to 3 feet away that Parker would use when in pain.  We are still processing that option, however, Parker is quite intrigued.

We had special guests for Christmas this year.  Michael’s cousin and her husband came to Naples for the month of December, so we had them over for Christmas. This was our first time meeting.  It was so fun to listen to them reminiscing about their childhood.  She even made some of grandma’s cookies.  It was all very sweet to witness.  But the most incredible thing happened…her husband shared that he works for a very large pharmaceutical company as a biochemical researcher.  Here I was meeting this delightful man who was super sweet AND an incredible wealth of information.  We had quite the conversation about biologic drugs, immunology and autoimmune diseases.  I got such an education and he knew all the drugs that Parker has been on and how they work.  It was such a great discussion because this is so hard to explain to others who are not immersed in this vocabulary.  I was so thankful to have time with him and his brilliant mind.  He also talked quite a bit to Logan about going into medicine.  It was one of those moments in time when I felt like all was right…in balance…and we were all exactly where we were supposed to be.

This life we lead is with much balance, hope, and prayer.  We never know what is around the corner.  We can only live in today’s moments and be joyful for the gift of love that surrounds us.