Tuesday, May 17, 2016

Taking a Leap of Faith, One Step at a Time

Parker is working on a blog post to share with everyone about how he “walked the entire walk” and how thankful we are to all of you…but in the meantime, we wanted to share that he is going through some pretty big stuff right now.  Recently his rheumy shared that she believes that he has an additional overlap disease of ankylosing spondylitis.  As we shared previously, his SI joints are complete inflamed and huge on his MRI.  For the last couple of months, his doc has been trying to get a new biologic shot approved (stelara).  Unfortunately, even with an override request it still wasn’t approved.  So, the next step was to get approval for another biologic (simponi).  The bummer is that this med is an infusion which means we will be traveling back again to the infusion room for treatment. 

Parker is really in some considerable pain from the SI joints, and although we tried the nerve stimulator, it didn’t work and had to be removed.  We are going to stay hopeful that the new biologic will be helpful for his SI joints, along with helping his jaw, shoulders, back, hip, neck, knees, ankles and feet.  But we are seriously taking a huge leap of faith with this new step forward.

The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and internal organs.  This switch is pretty scary for us.  His doc has checked his heart and it is good right now, of course that is our biggest concern.  So concerning that Michael spoke up and asked the doc about it.  And instead of saying “what about his pericardia effusion” he asked “what about his periodic confusion”…I wish you all could have seen her face, the hesitation as she tried to comprehend what he said was hilarious (oh what stress can do to one’s communication)…and she replied, “I don’t know what to do about your periodic confusion, but we can check for pericardia effusion and keep a close eye on him.”  I tell you, there are so many moments that Michael makes me laugh, but boy the moment was priceless…we all started laughing.  And oh how we needed to laugh.

So, as we take this new leap of faith, we will be travelling back to the infusion room starting this week.  Please keep our kiddo in your prayers and thoughts.  Much thanks.

Sunday, April 24, 2016

Our Strong Kid is WALKING!

We are a little overdue for an update.  There has just been so much going on.  I finally have a brief moment to share.  We have INCREDIBLE news for those of you who have not heard yet.  Parker's right foot is stable and he doesn't need the fusion surgery on that side too.  Everything that the docs at the other hospital had concerns about were related to his previous reconstructive surgery.  The heal concern was where the surgeon had rebuilt his heal structure and the place they thought was disintegrating was where a pin had been removed and left an open space (still healing).  This is a huge relief to all of us and especially Parker.

Our Jiffy Popcorn head going into surgery.
Also, last Wednesday, Parker had the spinal nerve stimulator trial surgery.  The surgery went well.  Unfortunately, it doesn't seem to be helping his pain, so we will continue onward.   The doc will remove it this week.  We know that Parker is completely disappointed, as he had hoped that this would be his ticket to get off narcotics.  But patience has definitely become a virtue he possesses and is applying once again.  We will continue to hunt for a pain solution.

Working hard at PT.
In the meantime, we are revving up for the big walk.  Parker is planning on "walking the walk"...this is huge.  He has worked so hard to get those feet, ankles, and legs working again.  He is going to stand tall as the National Walk Honoree this year!  His focus and determination has been remarkable to witness.  And we cannot wait to see all of you who can join us on May 7th and walk beside our kiddo.  There is still time to sign up for our team:  Click here to link to our walk page

And thank you to all who have donated to our team!  We are blown away by the support and it is heartwarming to see such love surrounding us.

Finally, we are counting down the days until Logan comes home for the summer.  He has completed his first year at UF and we are so very proud of his accomplishment.  His JA was a little mean to him in the beginning and with a little med adjustment and balancing of physical activity, he has been doing great!   We can't wait to have both our boys home for the summer.
Parker left this little bit of HOPE in my garden to surprise me!

Wednesday, March 16, 2016

Right Foot, Left Foot..No Good Feet

We have this kid who never gives up no matter what…Parker’s body doesn’t seem to have the same drive as his spirit does.  All my hopes and prayers are for his continued strength and healing.  For the past three weeks it seems that he has been having more and more increased pain in his back, neck, and jaws.  We have adjusted meds but it is not helping.

Tomorrow we are going up to Shands Hospital.  He has a late set of MRIs for his jaw and SI-joints in his lower back.  Back in November his SI joint MRI revealed huge amounts of swelling.  He had them injected with cortisone and has been taking meds that target this area, but the pain is intensifying.  I can’t remember the last time he hasn’t woken in the middle of the night due to pain.

And back in 2011, he had jaw issues and there were some issues on that MRI but the jaw has been fairly quiet until now.  So his doc is concerned that one of his overlapping conditions might be contributing to these flares since it is not common to have SI involvement in kiddos with systemic JA.  I actually giggle when I hear “not common”…like a nervous laugh…because nothing seems common with Parker.

Today a dear friend shared with me that her heart broke seeing Parker struggle through the family walk kick-off last weekend.  He came in his wheelchair and rested his head on the table as he slept through the entire event. Then, he asked to leave without even lunch nor going through the museum.  She said she always sees Parker smiling but he wasn’t last Saturday…and it so choked me up.  He wants to be present and a part of social interactions but he just cannot seem to maintain. 

He had a friend over this past weekend to play video games (a great pain distraction by the way) and after less than an hour he came out and said he just can’t do it anymore and needed to rest.  It is clear to Michael and I that something is not right and we are so fearful of what the labs and MRI will show.  The doc has said to pack our bags because she will likely need to admit him on Friday. 

The last few rounds of PT have been literally torture for him…and yet he doesn’t give up as tears stream out the corners of his eyes.  The PT checked his right foot (the one that he didn’t have this last surgery on) and he was manipulating it in a way it should not move and then advised me to call the doc because it could mean that the cadaver bone that was put in his foot back in March 2015 may have also been rejected and absorbed into the body because it was feeling like it wasn’t’ there.  It just breaks my heart beyond words at the thought that Parker might have to get his right foot/ankle fused too.  So we asked the doc to also set up an x-ray for tomorrow since we will be at radiology anyway. 

I am literally choking back tears for my kiddo.  I pray for understanding where there is no way I can comprehend what is happening over and over to my sweet kid.  This disease has literally taken his childhood from him and he knows it.  And yet, somehow he carries himself around each day on those horrible feet and ankles sharing his smile with the world and comforting others.

We will continue to fight with all our might for him and for funding for a cure.  We must because it is the one positive thing we can do.  Please know that we so appreciate every text, the sweet cards of encouragement many of you send to Parker, and every single penny donated to his walk team.  There are so many kids that need all of our support.

I will continue to update on Facebook as I can this weekend.  And I will try to update the blog too to keep everyone up to speed.  Just please continue to shower us with prayers, love, hope, and strength.

 And if you want to help, just click on the “want to help” tab at the top of our blog.  Much gratitude and love.

Tuesday, February 9, 2016

The Boggy Creek Boys Spread JOY

It's time to spread a little JOY!  And because of Camp Boggy Creek (one of Paul Newman's Serious Fun Camp, http://www.boggycreek.org/), we said YES to JOY this past weekend.  It was our final Family Retreat Weekend because Parker is 16 and will be aging out.  There is not enough good I can say about the miracle of camp

Of course Parker went out with a bang.  Thanks to these Dads for making his final performance extra special (see video link below). Enjoy the first and final appearance of the Camp Boggy Creek Boys: The Godfather (Michael, Dad), The Enforcer (Brian), The Facilitator (Tony), The Mayor (Parker) and The Heart Throb (Pal Jamar). I laughed so hard my sides hurt. That's one special kind of "YES to JOY". Thank you Camp Boggy staff and volunteers for bringing 20 years of joy to our children.  Watch the video and experience the joy for yourself.

Link to video

Also, here are a few pictures of our fun weekend.

Family Style Meals
Fun in the Gym

Boggy Creek Boys

Thursday, February 4, 2016

Post-Op Report…Back on His Feet

Since November, I have felt like I have been functioning with heartache and moving in slow motion while the world around me whirls on in it's constant motion.  I finally feel strong enough to share this piece of my heart. (If you get sick to your stomach easy, don't read on...but this is what Parker endured and now lives with...it is real and painful.)

Parker has been in such a fight during these past 3 months.  He had his “surgery re-do” on his left foot.  We had no idea how much more extensive this surgery was going to be in comparison to his previous bi-lateral surgery that was done in March.  The surgeon had to restructure and realign his foot, ankle and tibia.  This meant bone turning, ligament and tendon tightening and lengthening, pinning bones once again, and inserting THREE titanium screws to fuse his foot into place.  The medical terminology for his surgery: Subtalar fusion (joint between talus bone and calcaneus bone is removed and joint surfaces are fixed together to decrease pain and improved function) with calcaneal osteotomy (cutting the heel bone and shifting it to correct deformity) He endured a splinted cast (which adhered to his skin due to the blood and took 30 minutes just to remove), then a regular cast, then a boot cast with bone stimulators, and now he has a brace.

Just this last week, he has finally begun taking steps again.  He is so happy to be on his feet again.  Of course, his first few days of being able to stand, he way over did it.  He even danced some.  A tearful moment.  Then he went into a JA flare.  Another tearful moment.

These past three months we have seen him in more pain than I thought possible.  Week three through week eight were the absolute worst.  He is quite glad that now physical therapy (PT) can begin.  He was going to start PT this week, but yesterday we had to take him to the doc and they had us take him to the ER, where we spent the entire day/evening.  There was concern that he had pericardial effusion again.  He was having pain with breathing.  Such intense pain that it woke him that night.  His D-dimer blood labs were elevated which we found out could mean a blood clot.  After many labs, an EKG, x-rays, an echo-cardiogram, and a lung CT… he was cleared to go home to sleep in his own cozy beds.  Thank goodness all the tests were ok.
A few days prior to Parker’s surgery, a film crew came to video his pre-op appointment and our family to honor Parker at the Arthritis Foundation’s Night of Champions.  Logan went to the event in New Orleans to speak on behalf of his brother.  The event was the day after Parker’s surgery. Below you will see the video that the AF made to honor Parker. Parker is forever our champion. 

Wednesday, December 30, 2015

JA Lessons Learned

Being a mother is truly a gift.  This statement rings true for many…however, being a mother of a child with a chronic life-threatening illness is a gift that awards me with such deep teachings and gratitude for life and I want to share in my lessons learned.

I enjoy teaching so very much.  During my 10 years in a preschool classroom, teaching young ones with multiple disabilities, I always came home counting my blessings.  I was so grateful that I had two healthy beautiful boys, especially since it was uncertain I could even have children.  Both boys are my little miracles. 

Later, when I started working at that University, I was so wide-eyed and excited that I would be continuing my career as a teacher of teachers.  Daily, I marveled at what amazing teachers exist in this world…yet it was always the children that I learned the most from.  Recently, I have been doing much work coaching in classrooms.  There are so many young children with difficulties and those difficulties are quite the challenge for many adults.  I have been blessed with understanding the perspective of little ones and helping adults see things from their points of view.  But I am just a lens of sorts, bringing clarity …assisting adults to see things that were always there to see…

As an educator, teaching comes naturally …lessons are what we plan…  but as a mother of two children with juvenile arthritis, one with chronic serious issues, I have learned much deeper lessons.  These lessons are certainly not chosen and I most definitely didn’t look for them, but now I can clearly see them.  When Parker was diagnosed, I asked many questions, read many medical journals and even text books (yes, I ordered rheumatology text books…it’s what an “educator” does).  I researched so much that I started to re-read what I had already read…looking for answers and trying to understand as much as I could.  And yes, I learned much…much about treatment, disease, options…  Then, of course, there were some things I read that made me cry to the point of exhaustion.  And on the flip side, I even read about “cures” that made me laugh (…like, did you know gin soaked raisins can cure rheumatoid arthritis and at the car dealership you can get joint juice to ease the pain…); sometimes you have to laugh…

But the real lessons come with experiences.  Some lessons are painful.  JA has taught me who my real friends are and are not…and that in every walk of life there are mean people… and even when you try to do “right”, it can turn very very wrong.  But JA has also taught me that mean people might be processing tough stuff  and to love them through it…and what might feel wrong to some, might be very right for us.  

And my JA lens has shown me and my entire family that prayers full of love, acts filled with kindness, and joyful simplicity are amazing and to receive such gifts is truly life’s lessons.
I know that other mothers and fathers and siblings of children with chronic illness endure incredibly difficult journeys too.  I watch it every single day…  countless hours of worry, reveals faith… endless treatments, needle sticks, procedures, bring hope… pain, shows strength… mysteries, give patience… physical barriers and road blocks show us alternate paths…  but the greatest lesson of all is LOVE. 

I can see the love in doctors’ and nurses’ eyes as they tell us things we certainly don’t want to hear.  I also see love in their eyes when they celebrate the simplest of accomplishments.  I feel love from our friends and family with their notes, encouragement, acts of kindness, and prayers.  But the love between Michael, Logan, Parker and I …as we simply sit together, not saying a word, just being together…well that is true deep love and a lesson I gladly learn.
We are so grateful to Armanis Restaurant at the Tampa Hyatt for doing a wine tree fundraiser for Parker's Purple Playas.  

Tuesday, December 8, 2015

The CURE for Chronic Illnesses...by Logan Lentini

Today, Logan posted this on Facebook and I think it is worthy of a blog post...

Incurable, it’s a word that some of us are far too familiar with, and quite frankly I am tired of hearing it. Obviously there are countless diseases that are incurable; diabetes, arthritis, lupus, fibromyalgia, cystic fibrosis, and many cancers, currently have no cure, just to name a few. For many chronic illnesses, symptoms are manageable, but in other cases the symptoms can be lethal. 

When health professionals verbalize that a disease is incurable it can do one of two things. From a patient’s perspective, hearing that word can potentially eliminate all aspects of normalcy from their life. To a non-patient, hearing that something is incurable can stir up a whirlwind of emotions, especially if the non-patient personally knows a patient battling chronic illness. However, saying that chronic illnesses are incurable is simply false. Though there may not currently be a cure for a specific disease, that doesn’t mean that there is no cure at all. 

This is amazing news; if you think about it, there is, in theory, a cure for every chronic illness known to man. All it takes for a cure to be discovered is the right person conducting the right research. The cure could lie in alternative medicine, or genetics, or somewhere else, but there is a cure. We are on the right track as a society to finding these cures too; many chronic illnesses are now manageable through pharmaceuticals, and various other methods. Knowing how to manage the symptoms of chronic illnesses is the first step to understanding them on a cellular level, which in turn will eventually lead to the discovery of a cure. 

Now I’m not saying that every chronic illness will have a known cure over night, or even over the next ten years, but I do believe that in this century we will find the answers that we are looking for. There is a solution to every problem, and there are cures to chronic illnesses. As long as we stay hopeful, and advocate for ourselves, the right person will eventually come to the table and make the discovery that we have been waiting for; the discovery that will change the world.