Sunday, December 15, 2013

High-5 to Parker and Sadie for Starting High-5-Club!

Parker is now 14 years old.  At 8 years old, systemic on-set juvenile arthritis settled in his body and changed his life forever.  During these past six long years of blood labs, scans, tests, procedures, surgeries, 12 specialists, infusions, therapies, counseling, research studies, medications, acupuncture, educational plans, shots, orthopedics, hospital stays, equipment, and more, (whew…that’s a lot) we have been on quite the journey.  We appreciate our many blessings, our huge accomplishments, many new-found friendships, family togetherness, and life just a little bit more intensely than before JA.  On this journey, we have encountered kindness, strength, love, and incredible little people who challenge this disease each and every day.  But Parker met one very special “little person”, Sadie, and they are now forever friends.

Parker met Sadie in the infusion room where both endured many days together getting treatment.  They quickly became great pals because they understand each other.  They cry together, laugh at things that only children with chronic illness would find funny, and continually uplift and encourage each other.  They quickly recognized they were not alone in this journey.  So, they decided to help all kids battling chronic illness know that they, too, are not alone.  So four years ago, they began helping uplift other kids.  They celebrated their birthdays together by collecting treasures for the infusion room in lieu of birthday gifts. Then, they collected food and gift cards for families in need, but they wanted to do more.  So they officially started their non-profit called “High-5-Club”, a 501(c)(3) #23-3186664.
Why High-5-Club?  Well, they joined a sort of “JA Club” when they got diagnosed and yet, good can come from difficult situations….So, High-5s are a fun, quick and easy way to encourage other kids and their families.  Families enduring chronic illness are on a constant, chronic journey filled with unknowns and heartache.  Parker and Sadie have great big hearts and they want to encourage and recognize that all kids are incredible and deserve tons of love and great big high-fives!  So, Parker and Sadie began working on their “High-5-Club” (www.high-5-club.org), with a little help from us moms, and launched it to the world this month. 
What is High-5-Planning to do?  Our first High-5 goal is to boost the morale of families dealing with chronic disease by teaming with hospitals to distribute “High-5 Care Kits”.  These kits include pre-paid food and gas gift cards to help offset the cost of getting to and from medical appointments and treatment. After surveying families, approximately $150 on average are spent for each visit for medical treatment.  Medical treatments occur anywhere from every two weeks to 3 months, with many families going to monthly appointments.  And the more medical specialists a child has on his/her team, the more out-of-pocket costs add up.
As funding support grows, Parker and Sadie have four additional goals for High-5-Club:  The “Up High! ” Campaign (children encouraging other children), Social-Emotional Support (a webpage with resources and materials), Micro-Grants for Alternative Treatment, and Pediatric Fellowships.  These goals were chosen because we are trying to fill a gap in funding to meet needs of children with chronic illness and their families.  Parker and Sadie are kids on a mission and are very excited to share their joy with all of you.  
Many of you have already begun to ask about High-5-Club and how you can support Parker and Sadie.  There are several quick and easy ways you reach out and give “High-5s”. 
·   One, you can go to our Facebook page (Click here to go to our Facebook Page) and “like” High-5-Club; so you will get updates on what is happening and to reach out and give children virtual High-5s for the amazing things that they do. 
·  Two, you can make a High-5 donation by going to our secure website at www.high-5-club.org or by sending a check to High-5-Club, P.O. Box 621044, Oviedo, Florida 32766. 
·  Three, you can let us know about a company or program that might want to partner with us or match funds we raise. 
·  Four, you can share this information with your friends and family to spread the word and help us raise awareness that all kids need “high-fives”. 
·  And five, you can post High-5s to other children by using our “high-five” pictures on our Facebook Page, or by sending a High-5 encouragement card (on website soon) and let them know how amazing you think they are and why.

High-5 to Parker and Sadie!  We love you!

 

Sunday, November 3, 2013

An Update on the JA Journey…

Update on Parker…  last Friday, Michael took him to his rheumy appointment as I was told I really shouldn’t travel due to my Grave’s Disease.  His doc is about 2.5 hours away.   I phone conferenced in.  The good news is that his joints looked less swollen and his hands had better color.  Parker shared that he is working hard with the physical therapist and that he also thinks that the acupuncture is bringing some relief.

The not so good news is that he is living with a chronic illness and it is by definition, chronic.  It is a daily battle.  The doc paid some extra attention to his left ankle and foot and even called over their PT to look at it too.  She believes that he needs to now see a podiatrist because his ankle has turned in so very much that it is almost hitting the floor and his foot turns out.  It makes me so very mad that no matter how hard we continue to fight that this disease rears its ugly head.
We do believe, however, that we have slowed it down.  The doc said that his blood work looked ok.  Only his vitamin D is still very low (this can cause pain in itself…the symptom is feeling like bones are breaking and anyone who has broken a bone, I am sure you can relate).  So we are doubling his D.  His pancreas is not processing correctly and his insulin is high, most likely due to long term steroid use.  But his other organs seem to be doing ok.  We are thrilled that this disease is not attacking his heart or lungs anymore.  And because the combination of Hizentra (IVIG), Prograf, and Rilonacept are likely the reason for this (in addition to so many positive vibes, prayers, and hard work on Parker’s part) we are not willing to stop Rilonacept yet…it is not stopping the disease but it is doing the best yet as slowing it down.  So Parker’s doc is going to work on the “over-ride”, once again, to get this drug approved for him.  We love her for persisting for him.  He is the only kid in Florida being treated with this drug for systemic on-set juvenile arthritis.  Thank God it has been approved for him.

So, now that he is officially out of school, we are working hard on focusing on what he needs.  This is quite the balance between our work schedules and medical appointments.  But we feel strongly that we must focus on Parker’s health…and we will never give up.
So, the new game plan is to up his physical therapy to three times a week, continue acupuncture, add massage therapy, get new orthotics to help his ankle/foot, increase vitamin D, continue to work with his ten amazing docs, get his wheelchair adjusted, and work with a new pediatric pain management doctor to try and continue to decrease his pain meds.  He is almost off of his tramadol…what a huge step… and he is down to 3 mg of predinose.  We are so thankful for the baby steps forward that he is making.

Michael and I are aware that this disease is going to be a lifelong journey.  We discussed this a bit with his doctor.  And we are all truly happy for his bit of progress.  She is now trying to get him into the National Institute for Health (NIH).  We are fortunate that she knows the lead doctor there and she is personally calling him.  She will be the doctor continuing his treatment but NIH may help lead us in needed directions through genetic testing; again, another huge blessing for our purple playa.
I know this is Parker’s blog for updating…but we are now watching Logan’s JA progress a bit.  It seems that if he does a lot on his feet then his ankles swell.  He is also getting more migraines and the rheumy thinks that it might be one of his meds; so we are making a switch.  We are hoping that the switch helps with not only his migraines, but his swelling as well.  He has needed two infusions these last two weeks.

So it’s a balance…between both our children’s medical needs, along with my own.  My husband is an amazing individual and helps us all.  I love him dearly for that.  So our hope is that NIH may not only help Parker, but our whole family because we have such a mix of autoimmune issues.  Thank you to each of you who continue to check in on us and support us through this journey!
Much Love!

Friday, October 11, 2013

Choices That No Child Should Ever Have to Make

I will sleep good tonight…what a week.  I could barely drag myself through work this afternoon…and before I retire for the evening I just want to update everyone on our Purple Playa.  He is the strongest individual I know.  He has endured so much in his 14 years and I marvel every day at his ability to push, encourage others, and show so much love.

He is once again faced with such challenges and difficult choices.  Today, we officially withdrew him from school.  After having a conversation with his doctor, we felt that this was the best decision for where he is at and he is going to concentrate on his health.  This was as much his decision as it was ours and the doctor’s.  But even though this was the choice he made…it doesn’t make it easy.  He is, of course, keenly aware that he will not graduate with his classmates and will be re-entering the ninth grade next year.  He tried with all his might to go back to school this year, but his systemic disease has just been too hard on him and once again he is absent more than he is present.

This week he started acupuncture.  It was quite painful when the doctor put needles in his ankles and we thought he was going to give it up.  But then Parker suggested to maybe try a different location since his ankles are his worst joints.  The doctor, who is both an acupuncturist and pediatrician, was so thrilled that he was willing to try again.  She then went into his back and also added electric current and heat and he really liked it.  We even noticed that he seemed to have a little more energy that night and next day.  He will continue to get weekly acupuncture and we will see how it goes, be we are hopeful that it will help his pain.

Sometimes, I wonder if the Rilonacept is working well enough anymore, but it has been the best biologic he has tried.  As we are adjusting and reducing some of his meds, it has been quite hard on him.  He has so much pain and is incredibly fatigued.  He is also having his rashes and fevers again, a classic systemic JA symptom.  I just hate how this disease seems to outsmart the drugs.  We have also increased his PT from once a week to twice a week.  And we hope to continue with some auqua therapy, if we can get in a heated pool with the winter months coming up.  We are still researching heating our pool or getting a hot tub.  And he is periodically going to counseling.  The counselor has a gift for helping him process all that he is going through.

We are considering bringing him to NIH (National Institute for Health) in D.C.  We discussed this a bit with his doctor and it feels like this is possibly the next best option.  However, with the government shut down, there is little we can do right now.
 
We are doing the best we can to support our “purple playa” and I know he so appreciates everyone’s encouragement.   Tomorrow is “World Arthritis Day”!  Please share with someone that children endure this disease and for Parker, it is not just in his joints, but it also tries to attack his internal organs.  We continue to pound at JA and we continue to hope that one day, he will be without pain.


Wednesday, October 2, 2013

Birds of a Feather Flock Together

Today I was asked, “How do you handle taking care of a son with chronic illness, while you have chronic autoimmune issues yourself?”  Of course I answered with the courtesy that I can usually muster up for such incredibly difficult questions…”I just try to take it one day at a time…and cherish each and every moment.”  But now as the day is coming to an end…I don’t think I am “handing it” very well.  How does one handle such heartache…besides praying and trying to cherish life.

My body literally tremors these days.   Yesterday, I was told that it is due to my two newest diagnoses.  I have both Graves Disease AND Hashimoto’s Disease.  Of course I asked the endocrinologist how in the world I could have both since they are pretty much opposite of each other…Graves with hyperthyroidism and Hashimoto’s with hypothyroidism.  She said that it happens and the two diseases have probably been battling inside my body for quite some time and Graves is currently in the lead.  No wonder I feel so horrible…now for those of you who have seen me lately, yes, I hide it well…but let me tell you …the way I feel inside is a complete battle.  My heart rate is way rapid and also irregular at times.  I am sweating like crazy.  My hands and legs have been having tremors and now my head also tremors off and on.  I am incredibly fatigued.  It is causing my glucose to be high and I also happen to be anemic.  My eyes have had some issues too with floaters, blurriness, blacking out in one eye, and muscle pain.  Walking has also become more difficult.  My muscles are quite weak.  And I am having trouble swallowing, difficulty breathing at night, and difficulty with projecting my voice and my RA is flaring…likely all due to the battle in my body. 
The doctor spent quite a lot of time with me and my husband explaining that my immune system is very compromised and that I am very likely to have more autoimmune issues down the road; especially since I already have multiple autoimmune diseases (severe allergies, asthma, endometriosis, rheumatoid arthritis, Raynaud’s).  She was concerned but felt that she could help me.  So that was very reassuring.  I am now proceeding with a radioactive thyroid uptake over a 24 hour period.  So I go in for the first scan…then back 2 hours later, then 6 hours later, and again 24 hours later.  The pulmonologist and the endocrinologist both think that my thyroid is now pressing on my esophagus and that could be causing the swallowing and breathing issues.   Once we get results, then we can move forward.

And as I read up on my newest of autoimmune diseases today, I ran across a reference to autoimmune diseases as “birds of a feather flock together”.  I read it out loud to my husband and we both just laughed.  So how do I take care of me….I have tried several times to take time off from work for “me” only to have something come up that needed my immediate attention…and I did’t get that “me” time.  Well, tomorrow is going to finally be my “me” day (after I get more labs in the morning).   And I am looking forward to it!

 

Saturday, September 14, 2013

Please Heal My Child…

I sit, praying, hoping, loving, watching…How can this disease steel so much from my child.  I find myself looking for signs of improvement…only to find that he still has signs throughout his skin and his actions.  Parker is currently in adrenal failure…barely traces of cortisol in his blood.  I watch him sleep, for his stomach to rise up and down as the bi-pap machine pressing air in and out of his lungs.  Sometimes the movement is so subtle that I feel I have to lay my hand on him…just to check, as I hold my own breath until I feel the soft rise and fall.

I look at his hand and feet…full of swelling with a mixture of red, purple, blue, grey, and white.  His vessels thick and at the surface, as if they will bust out of his skin.  Tiny bruises trickle across his neck and shoulder.  His face…beat red in one moment and pale grey in the next. 

He doesn’t really want to talk…he just wants to be left alone…to sleep and distract himself with videos.  As his Hizentra infusion flows in him, I pray that it boosts him enough to heal.
Lily (our dog) is right by his side…she knows….dogs always know.

Why does this disease try to overcome our child…he is incredibly strong, completely determined to ride through this…always hoping that JA will stop hurting. 
Today he is really dizzy.  He is still having sweats and chills.  

The emotion is in the silence… with love in my heart, please heal my child.
 

Sunday, September 8, 2013

When I Was a 6th Grader...I Hated JA!


 Parker was cleaning up his laptop for high school and he came across these thoughts he wrote in 6th grade...  From the perspective of his 6th grade mind, here were some of his thoughts...
 My life with arthritis is very hard:  Living with pain every day, having to take lots different medications every day that sometimes don't even do anything. These are all things I have to deal with all day everyday living with arthritis.  Arthritis affects my life a lot… like sports.  I used to play sports every day but now i can barely ride a longboard.  Every day after school i used go to North Lakes Park to wait for my parents to pick me up.  I went there from kindergarten to 5th grade.  It’s a rec. center so it’s mainly outdoor fun but they also had a game room, a big room, and an arts and crafts room. I used to love it because it was the only place i could just run around and play.  But as I got to 4th grade and i started to get Arthritis i became less fond of the park. Ya they had the other rooms but 90% of the time they have you playing outside. Sometimes i felt good and wanted to play but as my arthritis got worse i didn't want to play because it hurt.  But the coaches sometimes force you to participate but when I'm hurting i can't play. 

So as i went on to 5th grade i had to totally stop sports due to my arthritis and i still don't play them now.  I mean every once in a while i ride my longboard and that’s the most exercise i ever get science my arthritis.  So now i mainly watch baseball on TV with my dad or watch my brother Logan longboard. 

Arthritis also affects my school life a lot.  Mainly because I'm in a WHEELCHAIR school is hard.  Its not that kids make fun of me (but some do) it’s that they think since I'm in a wheelchair i can’t walk.  So when i do walk they act like it’s a miracle.  Then when i in it they all want to push me like it’s the coolest thing in the world.  The worst part is that everybody says I'm lucky that i get pushed around in a wheelchair when there the lucky ones.  First of all the wheelchair is the most uncomfortable thing ever and you never get to control where you get to go because someone else is controlling you.  Then secondly the price i pay to even be in the wheelchair in the first place is horrible!!  (Arthritis) Now that’s just the wheelchair situation there’s lots more troubles with arthritis and school.  Like the work.  Middle school is hard enough.  Lucky for me i go to a gifted school with all advanced classes.  Then on top of that i have the arthritis.  Doing the work i can do... turning it in on time not so much.  Then add in missing 173 days in the year you wonder if I'm cheating while getting straight A's but then you realize there is nobody to cheat off if you are not in school. 

But we have found some solutions... like having an IEP. An IEP is like an agreement with your school that lets me do things that other kids don't get to do… Like turning work in late; going to the clinic to take a nap; extended time on tests and quizzes; and even having someone come to the house to tutor me.  School has been very hard and we don't know what this year holds. on all my meds i can get sick very easily so i might have to wear a mask to school.  So there’s another thing that arthritis does to affect my life.  Then you have the MILLIONS of meds i have to take, some daily, some weekly and so on and so forth.  I have so many meds that i have meds for my meds and sometimes meds for those meds.  In the morning i take 7-8 pills 1 inhaler 2 nasal sprays and liquid.  At night i take 6-7 pills i inhaler and 2 nasal sprays.  Then every 3 days i get a patch on my back changed.  Every week i get a methotrexate shot.  Last but not least i drive up to Gainesville to get a bi weekly infusion called actemera.  It is a fairly new drug made for people with systemic arthritis.  Gosh I HATE meds!

Thursday, August 8, 2013

Juvenile Rheumatoid Arthritis Advocacy (by Logan)


(Logan wrote this paper for his college English class and wanted to share it.)

           The average teenage boy is filled with energy and feels like he can take on the world. However, I am most certainly not your average teenage boy; every morning it takes me a good twenty minutes to get moving. My joints creak as I step out of bed. My body requires a “break in” period every day. My hands hurt so bad on occasion that I am incapable of doing the one thing I love, playing guitar. I live with a form of juvenile arthritis known as spondyloarthropathy, which mainly affects the tendons and ligaments. Many people however live with much more severe forms of rheumatoid arthritis that are potentially life threatening. By definition, juvenile rheumatoid arthritis, or JRA, is an autoimmune condition that can affect virtually any part of the body, including the skin, eyes, and vital organs. Because arthritis is perceived as an “old persons’” disease, many people disregard how dangerous it can be and who it effects. In actuality, arthritis can hit anyone, at any age; over 300,000 children suffer from various forms of juvenile arthritis in the United States, yet nobody knows about it (Advocating for Kids With Arthritis). Awareness needs to be raised for this overlooked diseased and advocates are desperately needed.

          The vast majority of people view arthritis as an old person’s disease that is solely related to joint pain. Because of what is assumed, people think that living with arthritis are easily treated and cured. Despite this assumption, there are actually over one hundred different forms of arthritis (AFPacificRegion). Many patients suffer from various symptoms. This is known as overlap syndrome. As a result of various symptoms, many children are on a series of different medications. Usually patients are on medications to counteract side effects caused by other medications. For instance, many children must take Zofran with their Methotrexate injections, in order to prevent extreme nausea.  For children with oligoarticular arthritis, which affects four or less joints (Dunkin, Mary Anne), doctors may prescribe corticosteroid injections, which are applied to the joints. Polyarticular arthritis on the other hand, pertains to five or more affected joints. Because of the numerous joints affected, steroid injections may be difficult, so many children are prescribed with methotrexate, a chemotherapy used as an anti rheumatic drug (Dunkin, Mary Anne). Though methotrexate is used for polyarticular arthritis, it is commonly used among the various forms of JRA. Patients with JRA who haven’t experienced success with methotrexate are usually prescribed biologics, such as Enbrel and Remicade, which are created biologically as opposed to chemically and act as a buffer to the patient’s compromised immune system. These drugs are generally administered through either IV-infusions, which push the medications into your bloodstream at a slow pace, or injections. Systemic onset JRA is a completely different beast; this form of JRA is associated with both systemic and joint diseases, making treatment more complicated. Because of the double-edged sword that is systemic JRA, treatment may involve a cocktail of narcotics, anti inflammatories. biologics and steroids. Though this has only scraped the surface of JRA treatment, nearly all treatments of juvenile rheumatoid arthritis take on the same goal, to achieve remission, something that can only be reached with patience and at times, proper funding.

          Over 300,000 children are diagnosed with some form of juvenile rheumatoid arthritis in the United States alone (Advocating for Kids With Arthritis). All of these children face adversity daily, and are forced to go to great lengths in order to get the treatment that they deserve. Caitlin Ryan, age fifteen, was diagnosed with JRA at the age of three. She doesn’t “remember life without pain” and has to find alternative ways in order to accomplish average tasks. By the age of twelve, Caitlin had both of her hips replaced due to this disease and is still fighting (Caitlin Ryan). Danielle Guth has had JRA since she was four years old and is now going into her senior year of high school. Doctors, medications, and pain have become a norm in her life, making it hard for her to participate in her school’s sports. Due to her arthritis, Danielle has gone through extraneous pain, surgeries and has suffered from alopecia, an autoimmune condition that causes one’s hair to fall out (Danielle Guth). For Kristen McAllister, her JRA journey began at eight years old. At first it was thought that her pain was due to her gymnastics, but when she had the swollen joints examined, doctors discovered that they were rheumatoid nodules. Kristen says that juvenile rheumatoid arthritis has been “destroying my joints, muscles, vital organs, and eyes.” Shortly after her diagnosis of JRA, she also discovered that the arthritis has been affecting her eyes in the form of inflammation known as uveitis. In conjunction with JRA, uveitis is a painless swelling of the eyes that can only be diagnosed when the eyes are examined under a microscope. If not treated promptly and properly, uveitis has the potential to take its victim’s vision, either partially or completely. As a result, she was put on two weekly injections of Humira and methotrexate yet she didn’t respond, so she is now on a monthly IV-infusion of Remicade, solumedrol, and IVIG (Kristen McAllister).

          Despite the idea of finding a cure for this autoimmune disease being unlikely within our lifetime, there are ways that we can make these kids’ lives more bearable. Through advocacy and raising awareness, we can spread the word about how dangerous, and unbearable juvenile arthritis is. As previously stated, 300,000 children in the United States have been diagnosed with some form of juvenile arthritis (AFPacificRegion). Even though these children make up a vast majority of children with diseases in America, there are less than 250 pediatric rheumatologists nation-wide; 


to add to that miniscule number, 90% of these pediatric rheumatologists are clustered in major cities (Advocating for Kids With Arthritis), making it nearly impossible for many families to find a doctor that they like within a few hundred miles. Every major city has at least one Arthritis walk a year, but this isn’t enough; we need to openly talk about it with others for them to understand, and show them how it affects these children daily. Without starting a conversation about it, juvenile arthritis will never gain the same awareness that pediatric cancer, or juvenile diabetes gets. In the pediatric infusion room at some hospitals, cancer patients often receive "rewards", care packages, and/or gifts from donors. These donations are specifically labeled for the cancer patients, even though the patients with JRA are in the same room as them, and most likely receiving similar treatments. To add to that, every time a cancer patient is cured in many pediatric infusions rooms, a bell goes off. The bell signifies final day in infusion room.  There is a cure for many childhood cancers, due to their funding, but there is no cure for JRA. These children who have JRA may never get to hear that bell ringing for them, but they get to sit and watch countless cancer patients be cured throughout their lifetime. People don’t understand the disease, or don’t even know about it, but it is our job to spread the word. Just like Kristen said, “By advocating and spreading awareness, you are doing your part in turning that misunderstanding and ignorance into understanding and support” (Kristen McAllister).

          On a national level, juvenile rheumatoid arthritis has gained little to no attention amongst the people. Here in Florida, there is even less awareness. My brother and I will walk around pushing an empty wheelchair, getting strange looks form people; when they ask why we are pushing the chair, we say that we have arthritis and that we are feeling good enough to walk. After hearing that, many will walk away with a look of doubt that we have arthritis.  Sometimes teenagers will make fun of us, by calling us cripples, mocking the way we walk, laughing at us when we are in wheelchairs, and even by doubting our physical abilities. On top of that, people who are elderly will try to relate because they think they know the pain that we go though. What these people refuse to comprehend is that there are over one hundred forms of arthritis; and we are not equivalent to the elderly. The only people who truly understand what my brother and I have are our friends, because they care enough to learn and understand. Me and my brother don’t even have the same forms of arthritis.  I have spondyloarthropathy, which is essentially a permanent form of tendonitis; while my brother has systemic onset juvenile rheumatoid arthritis, meaning that his entire body is affected, including his vital organs. Because of our various diagnoses, we are able to better educate people who care enough to ask what we have. This year, our walk team was the highest fundraising team in not only the state, but also the entire region, raising a total of $16,622 (Parker’s Purple Playas). Not only does this give perspective on where juvenile arthritis stands with the nation, but also in the state of Florida, where many elderly couples who are arthritic live in the suburbs. Not only is JRA overlooked in Florida, but so is the typical form of arthritis that impacts the elderly, which is called osteoarthritis.

          Juvenile rheumatoid arthritis is hands down, the most overlooked childhood disease in America. In addition, when not promptly and properly treated, it can be an extremely dangerous disease. It’s an invisible disease, meaning that you can’t tell if someone has it, unlike the "bald head" associated with cancer.  There is not the level of awareness to back JRA like juvenile diabetes. However, with advocacy comes better funding for medical fellowships, more doctors, medical research and advancements, and most importantly, a chance of remission. Advocating is as simple as showing a video to a friend, or telling them how arthritis affects children. But without voices, the message won’t be heard, and a lack of progress is just as bad as digressing. It just takes one conversation to gain someone’s support.
Works Cited

1. “Advocating for Kids With Arthritis.” Kidsgetarthritistoo.org. Arthritis Foundation. 23 July 2013. <http://www.kidsgetarthritistoo.org/who-we-are/advocating-for-kids.php>.

2. AFPacificRegion. “Faces of Arthritis.” YouTube.com. Arthritis foundation. 29 Oct 2012. 23 July 2013. <http://www.youtube.com/watch?v=8zd3xXabGZ8>

3. Dunkin, Mary Anne. “Understanding How Doctors Treat JIA.” Kidsgetarthritistoo.org. Arthritis Foundation. 23 July 2013. <http://www.kidsgetarthritistoo.org/living-with-ja/medical-care/treatment/jia-treatment-guidelines.php>.

4. Guth, Danielle. “JA Awareness.” Personal story emailed. 24 July 2013. 24 July 2013.

5. McAllister, Kristen. “Juvenile Arthritis.” Personal story emailed. 24 July 2013. 24 July 2013.

6. “Parker’s Purple Playas.” Arthritis Walk. Arthritis Foundation. 5 Aug 2013. <http://sacarthritiswalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1042465&team=5311275>.

7. Ryan, Caitlin. “My Personal Story.” Personal story emailed. 24 July 2013. 24 July 2013.

 

Monday, July 29, 2013

Summer Snapshots

For the first time ever, Parker has gone 3 months between rheumy visits.  This is pretty amazing.  It is so wonderful that we are able to do his shots and infusions at home now.  He and his brother, Logan, go back to the rheumatologist in a couple of weeks.  And after going to the Juvenile Arthritis Conference last week, we have questions regarding both the boys.

So it is a very good thing that we have the blessing of a 3 month span because we have been very busy with both boys at various medical specialists and therapies.  Sometimes I find it so very interesting how one thing gives, so that we can deal with something else. 

OT
For instance, Parker has graduated from OT.  We are so incredibly thankful to his occupational therapist, Jackie!  We will certainly miss her…and just as OT has ended, Parker AND Logan have started up with PT (well, second round for Parker).  We found a wonderful PT just about 2 miles from our house.  And I have a feeling that I am going to need to start up PT soon too; and they see both adults and children. With our very busy lives and school starting back up soon, this too is a huge blessing. 

Parker is now doing auqua therapy and biofeedback.  We are happy with the progress thus far.  Our main goal for him and for himself is to help him building his “coping skills” and also strength, since we know this disease is not going away.  He is slowly gaining strength and using his chair less and less…but it seems to come at a cost and that truly is completely discouraging at times.  But he knows that his choices have consequences and he is willing to endure in order to experience fun.

Parker got to experience Camp Boggy Creek!  And even though he was in bed for 4 days after, he said that it was totally worth it.  The joy that this camp experience brings him is so profound.  With a childhood full of medical stuff, this is one place he can concentrate on “just being a kid” and we know he will be ok.  Camp Boggy Creek is equipped with medical equipment, nurses and doctors…along with a wood workshop, lake, fishing/boating, horseback riding, a theater, pool, basketball court, archery, swimming, crafts, cooking, a talent show, chants, friendships,  a dance, and much much more!  They accommodate all his needs, including food allergies.  If he needs an emergency infusion, they are equipped for that too.  Camp Boggy Creek is one of Paul Newman’s Hole in the Wall “Serious Fun” camps.  Check out their website:  http://www.boggycreek.org/   We are so thankful that the Arthritis Foundation’s Florida Chapter sends children to camp every summer and also funds Family Retreat weekends.







Kids Get Arthritis Too
A week after Parker returned from camp, our family headed to California for the JA Conference.  Let me tell ya, traveling with medical issues is quite adventurous.  Obviously we took the wheelchair but we also needed a suitcase just for all our meds, the nebulizer, and the bi-pap machine.  Lots of vials with liquid and lots of shots…of course everything needed to be double checked at airport security.  Even the head of security came over to give us tips for travel.  He was super sweet and he looked relieved for us when I told him this was our “one trip” each year.  He said, “Oh good, you’re not frequent flyers…”  In that moment, I definitely concurred.  Remembering to administer all infusions/shots was also a challenge…but we did it.  However, he might be anemic again…he was bruising something horrible on this trip.  We also had to make sure that his vials stayed cold while we traveled and that we got a frig in our room (which we had to have serviced because it wasn’t running cold).  Then there was the “rental car”…it had to be not only big enough for us and our luggage but also the wheel chair, but it cannot be too new that we are allergic to new carpet.  This is why we don’t travel much….

The opening night, Deborah Snyder, one of the Producers of Man of Steel, spoke to the kids about how they are all heroes.  She struck a huge cord with Parker because she too has adult on-set systemic arthritis (also known as Still's Disease).  This is what Parker has.  She took time to meet Parker and talk to him.  That warmed my heart.


 
Every year at conference, we meet new families and our children make new bonds.  This year, Parker became more “independent” which was really something to witness as he and his buddies hung out together.  Logan and I signed up to be AF Ambassadors and he is really excited about this.  I told him if we are going to do this, he would have to be lead.  He can’t wait to get started.  We also tacked on some vacation time after the conference and got to visit with Michael’s cousin.  What a fun day in Hollywood.


Parker, with his bi-pap machine on,
 woke long enough to put his
3 infusion needles into his belly
and start his infusion pump. 
Since returning from our trip, we have adjusted Parker’s bi-pap machine yet again.  We are hoping that he will feel even more rested and build more endurance since in several weeks he is starting high school and is planning on joining his brother at his school.  The boys had both of their ophthalmology appointments and both have clear eyes…we found out today that if the JA attacked Logan’s eyes, he would feel it and his eyes would get red…but he said with Parker it is quite different and it will silently attack with no clues.  That is why Parker’s eyes are checked more often.  We also saw the pediatric endocrinologist.    This visit just reminded us, yet again, how serious Parker’s disease is but we were not shocked by what the doc had to say….drum roll…..he is too short.  Well, when a kid doesn’t grow in 4-5 years, I think we knew this was coming.  But he said that according to his bone age test he would put him at about 5’6” to 6’…with him currently being at 4’9” we are going to put in on the bed each night and Michael will grab his ankles and I will grab his wrists and we are just going to stretch him out…do you think that will work?  But seriously, this does mean more tests and he said it was pretty likely that he would put him on growth hormones.  Some of this “shortness” could be due to his disease but we are sure that the long term steroid use has also contributed considerably.  Parker is taking it in stride…he said that he can be “Chip or Dale” at Disney and maybe even “Mickey” and then he informed me that there is a “payment” that people who are under 5’2” get due to their shortness (I think he is thinking of disability…who knows…and how would he know this).

Every day I marvel at Parker’s strength.  He has faced many challenges and he continues to problem solve, push forward, and plow through it all.  I love that even though his body is “weak”; he is not letting it defeat him.  At the conference this year, the children were asked to dress up like a superhero.  Parker decided he was going to be Professor X from the X-Men.  He had his bald cap, black pants, black shirt, olive green suit jacket, and of course, his wheel chair.  Professor X is the leader of the X-Men and he teaches these “mutants” (as they are called) that although they are different; they have much to offer and each has unique talents that impact this world.  Professor X is also an advocate for equal rights where all could live together in harmony.  Parker even made a poster with favorite quotes from “Professor X” to put on the back of his wheelchair.  But on opening night, he went to put on his Professor X outfit and the pants didn’t fit.  He quickly changed gears (even though we knew he was quite upset about this) and he put on his “Robin” shirt and cape that he had for his day at Magic Mountain.  And he still put the quotes on the back of his wheelchair.  So in “Professor X” style, he went out with his head held high and had fun.
 
 

Sunday, June 30, 2013

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.

Thursday, June 13, 2013

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.

 

Saturday, June 8, 2013

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 10th 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!