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.

Almost a Year… 9 months with No Hospital Stay!

Many of you know that we have been at All Children’s Hospital since Monday, as I have been updating on Facebook…but it just occurred to me that some of you are NOT on Facebook…so here is the scoop…

I really do believe that everything will be ok…and I trust that prayers will be answered and that this will get better, but tonight I am giving myself permission to be really really furious with autoimmune, auto-inflammatory, and immunology diseases!  They really do complicate our little guy’s life big time!  And it is totally not an easy road!

Last week Parker shared with us that he has been having some vision issues (he actually was having issues for several weeks but didn’t say anything).  We went to the ophthalmologist and Parker shared that he is having blurriness and  intermittent blindness when he moved his head/neck or changed positions.  He is also having headaches and nausea.  The doc tried to decrease his fright by saying it was likely a med side effect or high blood pressure… until he actually looked in his eyes.  He is having papilledema (swelling on the back of his eye nerves) and several things can cause this.  So he told us we needed to get in to a neurologist.  We tried all week to get a neurology appointment and even the ophthalmologist tried …but before we could get an appointment, Parker’s intermittent vision loss was increasing in frequency and length of time.  It was progressing.  He is also having fevers daily for about a week that come and go.

So after calling both the ophthalmologist and the rheumatologist, we went to the ER.  Rather than going all the way up to Shands Hospital we decided to go to ACH because the ophthalmologist and neurologist were at this hospital.  An MRI was done and ruled out a tumor and MS.  Good news.  But when looking in the eyes, Parker definitely has significant swelling on the back of his eye and it was neither uveitis nor iritis (two eye diseases that sometimes happen in conjunction with JA). 

Parker took this just before his spinal tap.

He was admitted and a spinal tap was done the next day.  The spinal tap confirmed that he had increased pressure.  Although the spinal tap was used for diagnostic purposes, the hope was that it would also relieve some of the pressure, thus the swelling in his brain.  They removed some of the cerebral spinal fluid but as they did, the pressure tried to keep shooting up.  They did remove some and they actually hoped he might continue to leak some from his spinal tap sight…but he didn’t really do this.  The neurologist explained that he is one of the “rare kids” and that this might be a bit challenging with things getting worse before they get better.

He confirmed he does have what is called a pseudo tumor (increased cerebral spinal fluid (CSF) pressure).  When he looked in his eyes today it actually looked worse.  He also said that even though they removed CSF, it was probably already reproducing. 

He pulled the MRI pics up on the computer and gave Parker and me a little tutorial.  He also said there was a small lesion on his frontal lobe, but he is not overly concerned with that at this time.  The plan was that he would be discharged today on Diamox...we even got the A-Okay from rheumatology.  But then we found out, nope…he can’t have it because it is related to sulfa drugs which he is allergic to.  So then they thought of an alternate (less powerful med) to possibly use and then they said no…it can’t be given with one current meds.  We were told at noon today that we were going home, only to find out at 8:00 pm that NOPE…we have to stay and wait to consult with pharmaceutical in the morning.  This may seem like no big deal…but oh my goodness it is such a big deal because if they cannot bring this swelling down then it could cause permanent damage. 

But the even bigger deal is the joy all this stole from Parker this week.  He put money down to reserve the new spiderman game way back in Dec. and it came out the night we were in the ER….Michael promised to take him to get that game.  He was so looking forward to playing his super hero game this week and then when we didn’t get to go home again tonight that was a really hard blow.  I know in the scheme of things this is small…but it is so big too.  And then there is the upcoming walk...it is Saturday!  He sooooo wants to be there.

Everyone is asking why this happened…they don’t know for sure but it was likely the perfect storm of disease, long term steroid use, and weight gain.  This poor kid has not grown in height since 3^rd grade and is now in 9^th.  Yet he has more than doubled in weight on his small frame.  And it doesn’t help that he is still on hydrocortisone for his adrenal issues because that can make the CSF pressure worse. 

In the midst of all this, we did get some good news…The good news is that he failed his growth hormone tests and he is supposed to start growth hormone soon.

So this is why we drive everyone crazy asking for donations for our JA causes…this is why we walk in the Arthritis Foundation Walk!  This is why we pray so hard and continue to have HOPE!  This disease has such an impact on our family.  We cannot do this alone and we are so glad we don’t have to.  Thank you doesn’t quite seem like enough…we are grateful to each of you and for what you bring to our lives.

Click here for our Walk Team Page:  Parker's Purple Playas and Logan's Dream Team

I Don’t Know How You Do It!...You are So Strong…

I have heard this quite a bit over the last couple of weeks and it has made me really think…  How do I do it?  Because sometimes I don’t “feel” very strong… 

As I reflect over the last several years…hold on a second, let’s be for real here…we are really talking about the last SIX years; I feel a rush of emotions… Some of you will read this all the way through…to understand…but some may not…because it is “just too hard”…but I encourage you to read on… to get a glimpse into “how I do it”…  to understand a mother’s heart while raising a child with chronic illness…

At times, I am angry…my son has been enduring intense daily pain for six long years; my son has missed out on kid stuff (my own mom just reminded me of this yesterday, when she realized, because of an article she read about the hospital Parker is treated at, that my son is being treated right alongside kids with cancer …oh how that got me to thinking)…while other children are going to school, my son is home learning algebra from virtual school…  while his classmates are playing sports, my son is doing physical therapy…while his friends are beginning to “date”, my son is home trying to find a friend who will talk to him on Xbox…  While his friends plan field trips, he plans trips to the blood lab…

And…I am sad…while his peers are going to high school events, my son is doing shots and infusions every week…while his friends are growing taller, my son has not grown since 3^rd grade… while other moms say good night, I am turning on my son’s breathing machine and praying… as kids ride their bikes and skateboards through the neighborhood, my son wheels his wheel chair…  while others are out and about doing “daily life”; we have spent many days at the hospital…

And I am frustrated…while his friends just go to the movies and snack, my son cannot take food into the movies nor eat what is there because of his allergies…while other moms are planning fun outings and events, I am on hold with the insurance company, drug company, medical scheduling…while other kids plan sleep overs, my son plans hospital sleep studies…

And I am exhausted...  my laundry is rarely put away; my medical to-do list grows every time I think I have everything crossed off; surgical appointments keep me awake and I fall asleep just as my 5:00 AM alarm goes off…  And I work, 40 long hours a week all around this crazy schedule…that is exhausting to the max!

So, I ask myself…how do I do it?  I do it because I MUST.  I do it because I love my son so very much.  I do it with faith and hope and because I am scared that if I pause…I just might just break.  But I know I won’t, because I am STRONG!  Even at my weakest…I know that I am strong…

And I am strong... because I have this young boy who is stronger than any “strong” that I could ever know…  He has faced this disease head on…fiercely, endlessly, and has fought with all his might for his life.

And I am joyful…because my son knows how valuable life is…he sees the good in people all around him…he spreads love through his simple bright, never-ending smile… My son, this young old soul has wisdom way beyond his years…  He gives back to so many, without hesitation…  And in those brief moments that he has the physical strength, he lives life to the fullest and seizes those moments with so much passion that he fills me up with his energy making me believe that anything is possible.

I have such a gift…my son is with me.  There are families…families we know…who have lost their battle to this disease… and I will always and forever cherish ever single moment with all my love and might and will never ever give up the fight.  Logan, Michael, and I do it for him and every family who is strong, because they must be!

The Gift of Life, Love, and Purpose

Every single day is a gift!  In the spirit of “Rare Disease Day” (which also happens to be my

grandpa’s birthday); we unwrap every gift before us with new wonder.  

A very cold, fatigued kiddo
during walk kick-off
Walk Team Page:  Join Parker's Team (click here)

This week was way busy with much reflection; and we feel certain that we are blessed with Parker’s very wise, compassionate doctors.   And this week we had discussions with 4 of his docs.  We feel like we are on a good path and that Parker has a voice in making decisions.  Needless to say, the decisions continue to be difficult and choices no child should ever have to ever consider.  And yet, Parker does …and he weighs it all out with more wisdom than many adults.

We had our walk kick-off this week and one of Parker’s docs spoke.  Her presentation sparked many thoughts for us.  She spent some time chatting with me after the presentation and helped explain some pieces of the “Parker puzzle” that we never quite fit together.  One of Parker’s meds, methotrexate (a chemo drug), was discontinued during a hospital stay a little less than a year ago.  He was switched to prograf, a drug usually prescribed to help the body not reject organ transplants.  We haven’t heard of any other children on this drug; and we are pretty connected in the “JA world”. 

So, I inquired why this drug is being given to Parker.  She said that it was because he was in MAS at the time.  For those of you not aware of what MAS is…it is pretty much every family’s nightmare that has a child with systemic on-set juvenile arthritis.  We knew that Parker was on the verge of MAS a couple of past hospital stays but we didn't know that he was fully in it and that was why prograf was chosen…and if we were told at that time, MAS was not the word used.  However, thinking back on that hospital stay, it definitely was an intense stay and he was very sick and they did explain the reasoning behind using prograf.  And I think that the doc was probably trying to keep me calm and protect my momma heart.  I definitely was hearing white noise and felt like I was in a fog as I tried hard to focus on her words and focus on my reaction and stay calm.  This is when trust is the up-most importance, because your child is witnessing so very much alongside of you and prayers become your constant inner voice.  For those of you who don’t know what MAS is, it stands for macrophage activation syndrome.  It is severe, dangerous, and life threatening.  It is the number one cause of death in kids with systemic JA.  Here are some links about MAS:

lhttp://www.the-rheumatologist.org/details/article/2041587/Systemic_Juvenile_Idiopathic_Arthritis.html

http://www.the-rheumatologist.org/details/article/973181/Macrophage_Activation_Syndrome.html

http://emedicine.medscape.com/article/1380671-overview

In addition to our walk kick-off, Parker endured two rounds of sacral nerve ablations.  He has two more rounds next week to complete the series of 6 for the sacral area.  This last round was pretty tough on him.  He is a strong little tough warrior.  He was then going to move on to the lumbar region; but we need to stop for a period of time to deal with some endocrine issues first.

The endocrinologist called and his labs and bone-age scans showed that he needs further testing.  So, we are scheduling a day long test day at the hospital to proceed with testing for possible growth hormones.  The “good news” is because he has not yet hit puberty and his bone age is “younger” than it should be, then he could potentially get growth and puberty hormone with good results.  So we are actually hoping he “fails” the day long tests, so that he can get help.  Yes, you read that right.

At first I was upset to hear about another round of “bad labs” but after seeing the rheumatologist Thursday, she explained things in a way we could better understand and that this could really help him.  So, we are going to stay in that mindset and hope for the worst to get the BEST!

Michael and I are pretty exhausted these days.  We are just trying to keep all the balls in the air and if one drops…we hope it is one that we can just do without and let roll away.  So much that is happening is movement in the right direction, it is just constant.  And there seems to be a domino effect.  And then there are my health issues and Logan’s health issues that also need attending to; we must remind ourselves over and over that we can only do what we can do in a day.

WWW.HIGH-5-CLUB.ORG

And we also must remember those precious gifts:  Parker is off of prednisone after 4.5 years and he is off of morphine after 3.5 years (one of his narcotics).  Parker re-started an on-line virtual class yesterday; and he is determined to not look back and to continue moving forward…wherever it takes him.  He is pushing through his pain and walking more and using his wheelchair less.  He is excited about his and Sadie’s High-5-Club; and they

Sadie and Parker deliver High-5 Care Kits

delivered their first set of High-5 care kits this week and can’t wait to do more!  Our family and friends’ encouragement and love continue to lift us up and power us on.  Our lives have purpose.  We have faith in what is meant to be will be… and it gives us peace and hope for the future.

 

NIH Status and Other Updates

Well, I am just going to be straight forward…there is no NIH (National Institute for Health) in Parker’s near future.  Although his doctor made every effort to get him in and even though she talked to the lead doc there, it seems that because of the 17 week long government shutdown, they are now very backlogged.  They are only taking kids that fit criteria for one of their studies.  She did ask the doc to ask other docs if anyone would be interest in a “very unique” kiddo; so he is posting on their JA doc groups. 

Parker was quite upset with this news; we are, however, please that Parker’s health has had some improvements.  His lungs have improved and pulmonology is happy that capacity is increasing.  And he has not had any other internal organ involvement in quite some time.  For this, we are incredibly thankful.  He is still in incredible pain; having skin issues off and on (minor vasculitis, rashes); fevers come and go but are not as high; and he has some joint swelling, but ankles are not as constantly huge as they use to be.  We do feel that the Rilonacept has slowed the progression of this disease.  And we are pleased with this drug in combination with prograf and his hizentra weekly infusions; it seems to be a pretty decent combo for him.  Of course, we wish it was even better, but we are pretty pleased with the progress because it has kept him out of the hospital and he has had less illness.  This is a huge blessing.

After a mini battle with our health insurance, we got Parker’s foot orthotics approved.  His left ankle has turned down towards the ground quite a bit, despite PT and his current orthotics.  So he is upgrading.  At first, the insurance denied the new orthotics saying that only diabetes patients qualify…but we are so thankful that we were advised years ago to ask for a “case manager nurse” with his insurance.  Plus, I am pretty darn persistent.  So after calling her and pleading, she advocated on his behalf and they were approved.  I advise anyone raising a child with chronic illness to ask if your child can have a case manager nurse.  It really helps to have one individual to talk to at the insurance company who knows Parker’s case.

Parker is now seeing a local pain management doctor (this is doctor number 13…jeeze louise).  He is totally on the same page as us and wants to work on getting Parker off the narcotics and use other routes to help with pain.  He did two rounds of tests with him and it looks like he is a candidate for nerve ablation.  We are seriously considering this for his back.  For the first time, in about 5 years, Parker had zero pain in the area the tests were done and it held for about 4.5 hours.  He told this doctor through tears, "thank you for the best Christmas present ever".  Of course, the doc and I got all teary with him.  We are also going to discuss his ankles further because his rheumy is wondering if botox injections in his ankles would help.  Through PT, he has had much improvement but his range of motion is still quite limited due to the destruction that has already occurred in his ankles and she feels botox might help.

 

As for a quick “Logan update”, his JA (spondy) has progressed some but is still somewhat manageable.  We have not had to add biologics.  He is on Celebrex and after discussion with the rheumy, he has decided to try adding plaquinel.  First, we need to get him in to the eye doc to get a baseline on him and also to look at his eyes because he gets some really bad reddening in them (especially just prior to, and sometimes after, migraines).  We want to get the ophthalmologist’s blessing before starting this new med.  Right now, this kid walks around with salanapas patches on his joints…it is just not cutting it.  The doc feels that he too has some mild vascular stuff going on…and we joked that it seems to just be one of those weird family issues.

So in closing, we are so very proud of our two boys.  Logan continues to push through dual enrollment and loves his college classes.  And Parker is juggling massive amounts of medical appointments…Yesterday, he went to PT even though he felt miserable (a little concerned he might be sick)… On the way home from PT, I think Parker summed it up best when he said “I am who I am, and I am really strong!” 

 

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!

Click here to see Parker's and Sadie's Video!

 

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!