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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.

Sunday, November 2, 2014

Logan's Lovin' the Good Life ~By Logan

Everybody wants a good life. This may sound obvious, but it still renders true. So what exactly constitutes what is, and is not considered a good life? Well, this is a very subjective topic, which will surely have many different answers; I think that it all comes down to happiness. In order to have a good life, in my opinion, one must be happy.
            
Of all things, I have found happiness in helping others. When I was in seventh grade, my younger brother was diagnosed with systemic onset juvenile rheumatoid arthritis, a form of arthritis that not only attacks one’s joints, but also their internal organs. When I first learned about the severity of his disease, I was at a loss for words, but from that moment on I knew what I wanted to do; I wanted to become a pediatric rheumatologist. I immediately put this plan into action, by starting to volunteer at the Arthritis Foundation. Though the work may not have seemed like a lot to most, I knew that I was helping the Foundation in a large way. Soon they assigned me a larger task; they saw the leader in me, and asked me to organize an event for families to come together and network. I gladly accepted this task, and when I saw the smiles of the people attending the event I was ecstatic. Knowing that I could help people, and bring them joy made me the happiest person on the planet.

If we fast-forward a few years to the present, I am still helping people, but now on a national level. The arthritis foundation has made me a committee member on the young adult committee for the National Juvenile Arthritis Conference in 2015. Now I am bringing people together from across the country to network and advocate for juvenile arthritis. I feel like I am truly making a difference now, and changing people’s lives, for the better, along the way.

My undergraduate experience, however, will not prepare me for ‘the good life’ because I am already living that. On the other hand, college will prepare me for a better life, by helping me reach my ultimate goal of going into pediatric rheumatology. Once I become a pediatric rheumatologist, I will have a chance to eliminate the pain that hundreds of children suffer from on a daily basis, and that will make me the happiest person on the planet.           

Sunday, September 28, 2014

Challenges, By Parker

One challenge I think I might face in reaching my life goals is surgery. My goal in life is to “make my arthritis hurt less”.  So, one step I might have to take to get there is having ankle surgery. My left ankle was the first part of my body that began to show signs of rheumatoid arthritis. My ankle has been through a lot and I have tried many things to fix it. First, I got better shoes (Asics). Then, I got ankle splints. And now I have custom shoe orthotics. My left ankle is so bad now that when I stand, my foot turns in and now my ankle nearly touches the ground. While “surgery” is a challenge that I have to face, it is also a solution.

Another challenge I might face on my way to reaching my goal is friends. At the time I’m writing this my social life isn’t the greatest, but I fear it will get worse soon if I don’t get a handle on my arthritis. I am scared to go to school in my wheelchair because what people will think of me. I am scared to miss work because people always say I’m lucky; but they don’t get that I still have to make up all the work by myself without a teacher. Worst of all, I’m scared of being absent because when I come back kids say mean things like “you are in this class still” or “why are you here”. And if they don’t do that, they say mean things when I sit down like “you don’t belong here” or “get out of my seat”.  That kind of stuff really gets to me, because I just want to make friends. And what really sucks is that I can’t do anything about this.

The third and final thing I will talk about is myself. Yes I said myself. I think I’m my own biggest challenge/obstacle. Every day I wake up not wanting to go on, not wanting to fight the arthritis any more. Every single day I am in pain. Every day I’m fatigued and just don’t want to do anything. But I have one solution, one reason to keep on fighting, and that is my family. I have an amazing brother who cares about me and loves me. I have an amazing dad who plays with me and 
watches TV with me. 
And I have the most wonderful mom in the world. My mom comes to every doctor’s appointment, every surgery, every infusion. My awesome mom even learned to use my port, give me shots, and even set up my infusion so that I can do it at home instead of always going to the hospital. Without them I don’t know what I’d do. I love my family with all of my heart, ALL OF IT.