Just a Bit of How Things Are…

I know we have been quite … Parker has not been feeling well at all.  As a mom, it is incredibly hard to watch your child struggle day after day.  I keep thinking, tomorrow will be better…we are going on two really rough weeks with loads of inflammation and some adrenal issues.  His adrenal insufficiency can be pretty scary and every time this starts up, I feel my heart squeeze so tight it hurts.  We came so close to losing him with one of his adrenal crisis episodes and I tell myself we are better equipped with both knowledge and meds now, but I still get scared. 

Parker is now taking a stress dose for his adrenal insufficiency because he might also be fighting a virus.  And he is also taking meds for his pain and inflammation.  During these last 2 weeks, he has barely been out of bed.  The balance of helping him move so he doesn’t hurt more from being stiff, and the balance of not moving too much that it makes things worse, is quite delicate.  And I admit, I am not sure if we will ever master that.

It’s been hard for me to write blogs lately…I have wanted to allow Parker to tell his own story.  But when Kristen was here for her extended stay, she and Parker told me that a mom’s perspective is also valuable and they encouraged me to blog more.  The thing is, it makes everything so “real”…and I keep thinking and praying that Parker will get better…in some ways he has but in other ways, well… It is just our reality. 

So I cry in private on the really hard days; and I try as hard as I can to be “normal”…going to work, helping others, being as social as I can, and sometimes just being quiet and to myself.  On the “good days”…I just want to do everything we can fit in because I want so badly for Parker to experience JOY.  Of course, there seems to always be a price to pay for joyful interludes. 

Having a child with chronic illness can be quite lonely…because it is chronic, conversations are hard.  Parties are harder… I don’t know if other moms have these moments too…where you stand in the middle of a room full of people in a buzz, usually for a joyful gathering and you feel totally alone.  It is the weirdest thing ever.  I don’t know how to begin conversations anymore.  And I don’t think people know how to converse with me.  And sometimes, I avoid … because it is easier, less exhausting.  It’s like I am holding onto my reserves.  Just this week, someone asked about Parker and when I started explaining his surgery it turned into “oh, I have arthritis too”….and I got to hear all about how this older woman had it so hard.   Then, I felt horrible because I think she has no idea how her comments hurt …but that is just it, so many have no idea.

And let me tell you…all you moms with young ones with severe chronic JA…well, when 18 hits…watch out.  My world is a bit upside down.  18 makes you reassess, plan for the future that you were certainly not prepared for, and oh the paperwork…  I know not all kids are as severe as Parker, but whoa…this 18 years old stuff is something:  Do we do permanent disability?  Then there is Medicaid (or will there be…)?  Will he live on his own; or should we get a home with a separate apartment or mother-in-law suite? How long should I work?  Will he work?  Will I run out of sick leave?  Will we ever take non-arthritis related trips/vacations?  Do we remove his port and put a new one in or not?

And then I remind myself…I can only do what I can do in a day.  So, we do what is needed in the here and now:  Like buying two pairs of shoes, because one foot needs a nine and the other needs an 11 due to the ankle/foot orthotic…Or bringing the puppy up on the bed for some Parker cuddle time and a joyful moment…And making a yummy snack of yogurt, granola, and berries because Parker will eat that.  So I admit, these last 2 weeks have been really hard and we could really use some better days in the near future.

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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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 10^th grade and for him to re-enter school after taking a year off for his health and go back into the 9^th. 

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 10^th and he was in 9^th…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.

Parker Has Incredible Strength Enveloped in Love

I believe that Parker’s life has great purpose.  He has such amazing strength and every opportunity he has, he shares his love and smile with others.  As a mother, this makes me so very proud.  But more than anything in this world, I want to take away his physical and emotional pain.  I want to somehow take away his worry and his fears…the fears that wake him through his tears at night, when his subconscious takes over.  Over these last two days we have been processing a ton.

The photo on the wall looked like this.

Last Thursday, we went back to the hospital to see the ophthalmologist to see how his eyes are doing under the pressure of his pseudo tumor.  Unfortunately, they look bad.  The doctor took a picture off of his wall of “inside the eye” and started to explain what was going on with Parker’s eyes.  Parker says, “Hey, since I was two, I thought that picture on the wall was a picture of an orange (because it kind-of looked like one).  I just thought you really loved oranges.”  Of course we all busted out laughing.  It reminded me that children can see things we don’t…

Then, Parker shifted gears and started asking a ton of questions and I could see his mind processing every single word with fright all wrapped up in his incredible strength.  I just let him ask…as I held my breath, not believing what I was hearing and witnessing…that this couldn't actually be happening with my baby.  But it was really happening.  Neither of us shedding a tear…we just listened. 

The doctor explained that because we had to go with a less effective drug (Topamax instead of Diamax), that it may not be very good at treating the pseudo tumor that is causing the papilledema in his eyes.  There is a ton of pressure on the back of his eyes. This is why his vision keeps blacking out.  He said that the back is not concave as it should be…Parker responds with “so it’s convex then?”  The doc said, “Yes, and the optic nerves and vessels are also all swollen.”  Parker then asked, “Could I lose my sight?”  The doc replied, “yes, but we will do everything we can and that is why you are here; so I can keep an eye on them.” 

He then explained that we are just trying to buy time with the Topamax in hopes that it will somehow lessen the pressure.  But …he felt there was a high likelihood that a shunt would need to be put into his brain to drain the cerebral spinal fluid to either the heart or stomach to lessen the pressure.  Parker asked if that would work; would that save his vision?  The doc said it could, but if it didn’t work, there was still one more option of doing surgery on his eye to put in a sheath to act as a protector of the optic nerves.  I know these types of procedures happen with other children but this is MY child… who has both autoimmune issues and immunology issues and any time any surgery or trauma occurs with the body, it is very scary because the body tries to attack.  But of course we will do whatever we must.

As we left, Parker went into his ultimate charmer mode and chatted away with the nurses about how awesome he looks with his purple hair and wishing them all a “happy nurses’ week”.  We proceeded downstairs to records because we ordered all his records from last week’s hospital stay…and again, as we passed the many nurses and staff he celebrated them and thanked them for being nurses.  He gave so many high-5s and cheered on many people; and I am certain he was coping at the same time.

After we got the records, we went to see my mom and grandma to deliver our mother’s day love.  His great gram asked how he was doing, and he busted into tears.  Then, he took a few deep breaths and said, “Give me a minute, and I will explain.”  Then, he proceeded to tell them both all about his doctor visit and smiled and said, I’ll get through this.  It will be ok. 

Laying relieves head pressure.

When I got home, I read the entire stack of medical notes from the hospital stay last week.  It confirmed all that we already knew…but it also had two pieces of info that concern me.  Parker has a lesion on his right frontal lobe…we knew this…but we didn’t know that the radiologist recommended repeating the MRI with triple contrast.  And there is a pars intermedia cyst on his pituitary gland.  They did an extra MRI of his pituitary because he is supposed to get growth hormone.  Endocrine told us that if anything is on the pituitary, then he couldn’t have the growth hormone because the growth hormone causes everything to “grow”.  This additional bad news is very hard to process as the growth hormone was going to hopefully help multiple issues.  I did call the doc about all this but of course we have to “wait the weekend”.

So now, we juggle our schedules so someone is home with Parker because his eyes feel a bit like a ticking time bomb.  He is having more head pressure and nausea.  If he begins puking, we rush to the ER.  We have to trust that things will get better.  We have to have faith that we are moving with tiny steps in the right direction.  We ask that all our friends and family continue to pray and surround us with their loving support.

Yesterday, I was at a “leadership conference” for work and one of the speakers, James Robbins, said something that really hit home for me, “Understand the power of 1,000 tiny steps.”  It reminded me that with every tiny step that we make with regards to Parker’s health, it is an accumulation of steps in the right direction.  But I also couldn't help but think…I also understand that power of the many who rally around our family and help carry us through this journey.  That is powerful love.

Wearing our blue for arthritis awareness month - May.

Friends Forever

Last night Parker decided to write down his thoughts after the JA Family Fun Day and then he asked me to post it on the blog.

This morning I woke up in a ton of pain. It wasn’t a surprise because I have been hurting really bad. But today I had to push through it because it was the family beach day thing. I slept the whole way there and really didn’t want to go. When we got there I still wanted to go home. But I started hanging out with my friends and things started to get better. There was one specific friend that I really connect with. And the whole day was ok when I was hanging out with her and my other friends. The best part of the day was that I won the best-dressed contest. I also got second place in a watermelon-eating contest. I ended up doing sooooooo much and now I’m in even more pain. After the fun though I still feel terrible. But remember your friends make everything better.

Cards for a Cause!

There are really amazing big-hearted people in this world!  I have been blessed to meet one such person, Helene Graziano.  Helene heard about Parker through a friend of mine who was sharing to raise awareness about juvenile arthritis.  My friend, Denise, told Helene about Parker’s giving heart and how another mom, Dawn Veselka, and I had started a non-profit to benefit children with chronic illness like Parker and Sadie (Dawn’s daughter).

www.helenespapercrafting.com
 

Helene and her daughter

Helene was very excited to hear about this because she has a business called Helene’s Papercrafting with “Stampin’ Up”.  Their new theme is “Making the Difference”.  Well, this new theme lead her to recruit her family’s help and set up a weekend card crafting marathon to benefit our non-profit, the High-5-Club.  Helene wanted to make a difference for children with chronic illness like Parker and their families.

Rochelle giving Helene a
High-Five

Now, what you need to understand is that Dawn and I have been working hard just to jump start High-5-Club and we only have a Facebook page, https://www.facebook.com/high5cluborg?fref=ts,  and a website landing page, www.high-5-club.com, so far.  We are a brand new non-profit with a 501c3.  We are still just trying to get everything lined up and along comes Helene who made High-5-Club her first official benefit event!  I just couldn’t believe it!

I went to the final of four card making sessions that she hosted.  As soon as I entered, I could feel the warmth of her heart.  Helene and her daughter greeted us all and guided us through such fun card crafts.  I knew I was there because of the benefit, but what I didn’t know was what fun it would be.  It was like I was transported away from my stress and I found myself relaxing, giggling, teasing, and conversing with an amazing group of women who were all there, not only to learn and craft, but to also give back to their community and make a difference.  I am thankful to each and every one of them.

At one point, Helene shared why she went into this business and she shared that she was drawn to it because she was a social worker; and what she liked about paper crafting was that it allowed for her to build relationships.  Her words resonated with me a great deal and as she spoke about how impressed she was with children like Parker; she took my breath away.  She was incredibly genuine and in that moment I was thinking how we are all interconnected and the relationships we build are the greatest gifts in this world.  The human spirit…the love we share…this is what pushes us on.

Helene donated $600 to the High-5-Club.  A huge “high five” goes out to her for our official first benefit and first donation. Yet, Helene has given much more through her kindness.  We are so very thankful.

 

Love Connects Us

Epcot Perry
Scavenger Hunt

Logan and Dad at Concert

Raising a child with chronic illness has taught us much.  We have learned how to reflect on our family strengths and weaknesses.  Ironically, I have learned that my biggest weakness is also my strength.  Sometimes I “care” too much.  Caring leaves me vulnerable, but it also makes me human. 

I care about all children, all families, people, my family, my children…  Caring has made me who I am and who I will become.  I am thankful that I care, but caring means we open ourselves up to multiple emotions and that can include not only joy and love, but also hurt and sadness. 

Recently, I have been deeply hurt.  I have learned that there are some, who we thought cared about our brave children, but have acted with cruelty.  A small group has been bullying and making fun of parents and their children with JA.  The sadder realization was to learn they too have children with JA.  I have to admit, this really shocked me and it absolutely choked me up as I held back tears…tears for every family and for the poor mom who witnessed meanness against her own child.  My instant reaction was to break away from all social media and groups and focus only on myself, my husband, and my children.  For several weeks I couldn’t even post, blog, or communicate with others about this because I “care”…I have always cared what others think, feel.

I choose to be open to my emotions…feelings drive me forward and push me to be determined to overcome.  The depth of my emotions continue to teach me many lessons:  judgment is inevitable; challenges present themselves; and we will fall, but we can pick ourselves up.  As I ponder these lessons and as our family faces our challenges, we allow ourselves to feel and then let go…moving through these emotions brings a sense of peace.  Our peace fills us with strength and our love propels us forward.  And as long as we act with love in our heart, it may leave us vulnerable, but at least we are being true.

Because our family cares so much, we are given the amazing and powerful gift of love.  We love each other dearly, but this love also connects us to others.  It is with others that we can battle this incredibly beastly disease and still enjoy life.  We are so incredibly thankful to the many that have rallied around our family. 

Gaming with Troy during weekly infusioon

I will admit, the beast of JA does try to stop us…and it can feel relentless at times.  But after we move through the appointments, tests, treatments, and therapies we try to insert a little fun.  Sometimes that fun is within the walls of our own home…other times we make an outing of it. We treasure these moments with each other, family, and friends.

I am happy to report that Parker’s labs are much better and overall his strength is getting better and pain is less many days.  We are slowly decreasing some of his meds and increasing his activity level.  We are still battling pulmonary issues and we do have a few set-backs from time-to-time but overall there is improvement and we will continue to support him as he takes baby steps forward so he can begin to run circles again.  He has a goal to go back to school full time next year, as he enters the ninth grade. 

Logan went to the orthopedic doctor and he does have mild scoliosis.  We will monitor it and he is starting PT next week.  Logan has just completed 10^th grade and on Monday he will be a freshman at the community college.  He has chosen to take 2 classes this summer and will continue to be dually enrolled for the rest of high school.  This is something he really wanted to do and he is so thrilled that he went down to the campus today to check it out and find where his class will be.

You are my master,
 I love you so!
SQUIRREL

We are grateful to experience the love we have.  Love is such a gift.  It strengthens us and fuels our dreams and hopes. Love connects us.   I really do believe that together we are better! 

So Many Thoughts…

As a family, we have chosen to openly share our journey with juvenile arthritis.  This was both a difficult decision and an easy decision.  Difficult because in some ways it leaves us vulnerable and somewhat open to “judgments” and “opinions”; however, we know there is a great need for awareness and advocacy.  Many are often shocked when I tell them that I have rheumatoid arthritis because I am “too young”…you can imagine their greater shock when they find out that our children have JA.

Each family that is impacted by JA has their own story, their own coping strategies, their own experiences…but we all have one thing very much in common…we all have a child whose life is impacted by an autoimmune disease.  All of our children are “children first”…they have dreams of children…they want friends; they need their education; they long to play.  As parents we try to provide them with the best opportunities we possibly can between therapies, hospital visits, doctor appointments, procedures, infusions, etc.

Lately, I have been pondering how perceptions are shaped by our experiences.  How we perceive situations based on our “view” will either allow us to take on another’s perspective or not.  There are moments when either my husband or I have been misunderstood; and we have also witness our children being misunderstood.  For instance, during our last hospital stay one might say “Parker was not very nice or he was not coping well” and in that moment probably not.  However, what was not immediately apparent were all the circumstances surrounding that situation.  It takes great skill to look at the bigger picture and try to understand the whole situation and to understand his perspective.  And please don’t misunderstand me…we still asked him to reflect on his actions and apologize.  When others take the time to truly understand, that is when the miracles have the ability to happen.  I do believe that social-emotional support is just as important as the medical treatment.

I know we are not perfect…no one is…I know we are making some mistakes along the way…that is our opportunity to learn.  And I am sure we will continue to make mistakes just as I am sure we will continue to learn.  We are dealing with an autoimmune disease umbrella that has limited answers and much uncertainty.

We have learned many lessons through this disease and our appreciation for life is greater.  We know that simplicity is golden.  We enjoy the breeze in the air a little more.  We feel the depth of love with deeper affection.  We cherish naps full of dreams.  We cuddle just because.  We celebrate laughter often, even when it’s through a few tears.

Do I wish none of this had ever happened?  Sometimes…we have felt and witnessed great anger, sadness, and pain.  But sometimes I think, but then we would not have met some of the most amazing individuals on this planet…who just show love without having to be asked…The human spirit is quite remarkable.

We want to tell everyone thank you for joining us in this journey, for supporting us during our fundraising and walks, for listening, for celebrating with us and for cheering us on.  We advocate for our family and all the children with autoimmune diseases in hopes that a cure will come for each and every child.

We are thankful that we have a support network that is willing to walk alongside of us…even when we don’t know where we are going.  We appreciate your willingness to simply just “be” with us.  Our family pulls profound inspiration from your support and together we are stronger…

Much love from the Lentini family (A.K.A. The Purple Playas)

Pushing Through Can Bring Happiness…by Parker

Today I woke up and it was just like any other morning. I lay in bed for a while in pain wondering if I could get up. I went to eat breakfast and my teeth and jaw were killing me so I just pushed through it. Then I had to take a shower and the water was cold. Normally when I get out of the shower, I get in the bathtub with Epson salt to relax my body; but this time I couldn’t do it because I had class and I was running late.

After my class, I was too tired for a bath; so I took a nap. Then things got even worse my mom had to wake me up to go to O.T.  When I woke up, I was crying in pain. I walked into O.T. in tears.   My O.T. began to test my range of motion while trying to cheer me up.   

O.T. was hard today but when it was over I felt a little better. When I got home, I had to do math… so I was prepared and tried to get into my virtual school but they updated the software, so I had to reschedule.  I downloaded the software and it took a lot less time than I thought.   I called my virtual teacher back but she was already busy so she told me another assignment I could do independently. I did it and felt really good about myself.

This morning when I woke up I didn’t even want get out of bed but by the end of the day I was happy and feeling O.K.  So do you want to know how I do it?  Well, it’s all because of my mom. If my mom didn’t wake me up and encourage me, I would not have gone to O.T. and wouldn’t be happier. And throughout all this, she was by my side cheering me on.  So my advice to you… never under estimate the power of family and always keep them close to you.

HOME with Happiness in Our Hearts

Ever since Parker’s last hospital stay, his health has been a struggle.  We literally had to call him in sick to hospital/homebound teleclasses for the last month.  Thank goodness they were able to freeze his grades.  For the pass month, he has complained that his bones hurt and it feels like they are going to break and he has slept the days away.  We could barely wake him to take meds and eat.

We kept thinking he would bounce back because we would give him the rilonacept shot each week and he would be a bit better for a day or two…but then it would just continue to get worse and worse.  He was taking daily Epson baths and crawling back into bed.  He wasn’t even up for playing his Xbox (this is huge).

We kept trying to encourage him to get up and succeeded a few times only to see him make it to the couch and fall asleep again.  As I expressed to his doctors, this was really starting to concern me.  As I got to thinking (sometimes thinking is dangerous), I realized that it had been 9 months since he started rilonacept and I began to fear the worst…another biologic failing.  All other biologics that we had tried failed between 6 and 9 months.  And the last time he was on the verge of MAS (macrophage activation syndrome – a very dangerous complication that some kids with systemic on-set JA get), he acted similar.  So as a mom and dad, we were quite concerned about how he was presenting and behaving.  So of course, I contacted his primary pediatric rheumatologist and we were advised to come to the hospital. 

They did blood work, an MRI of his hips/groin, and meds were started.  That first night, I did lots of thinking (this time, not so dangerous…).  I realized that he has gotten worse since adding one of his two newest meds, prograf and baclofen.  So, the next day I asked if flushing and being extremely lethargic were side effects of either of his new meds.  Yes!  Prograf causes flushing and the baclofen could cause lethargy.  Then, while reviewing his labs and MRI results, we got marvelous news.  Our prayers had been answered…the rilonacept and hizentra are definitely working.  All his lab numbers look better…way better and his hips also looked good.  The meds are doing what we had hoped and are stopping this darn JA from progressing!  After further discussion, we also realized that Parker could not handle the baclofen at the dose he was at and also it shouldn’t be given with one of his other meds, which we have since discontinued.  We are already seeing a huge difference.  His is AWAKE, interacting, playing, and chitter chattering up a storm.

His doc also told us that she is re-checking his vitamin D.  Those results should come in tomorrow.  When children have extreme D deficiency it can literally feel like their bones are going to break.  So if that is the case, we simply need to increase his D.  Another great solution!  We are so happy to be home and to see our Parker looking better and feeling more alert.

Now we can focus on getting him better and better, getting back on track with school, having some fun and getting ready for the upcoming walk!  Thank you to all of you who continue to cheer Parker on and who send us positive vibes, prayers, and a giggle from time to time.  We are so fortunate to be surrounded by love.

Link to Parker's Purple Playas Walk Page:  http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=A84F7AF1A0954307A54209E85C953A06&supId=345360575