When You’re Stuck in a Fish Bowl…Just Keep Swimming

Day 4 in Pediatric ICU and we think Parker is making progress and may move down to main floor soon.  For those of you who have not been following on Facebook…Parker’s head pressure continues to progress.  On Tuesday, we made a trip to see his pediatric rheumatologist (because he missed his regular check-up when in the hospital for his spinal taps).   Parker’s Juvenile Arthritis (JA) is actually doing ok.  He has pain; but swelling is minimal.  Yippee!  However, his pseudo tumor’s head pressure and papilledema continues to progress.  There is much concern, that after 2 spinal taps and taking the Topamax, that this approach is not working.  Parker’s neurologist had recommended we see a pediatric neuro ophthalmologist but those are pretty non-existent in Florida.  There is one down in Miami but is not on our health insurance.  So, his ped rheumatologist sent us over to a pediatric ophthalmologist who teams with her and a ped neurosurgeon that same day.

We saw the pediatric ophthalmologist specialist who ran multiple tests and shared her concerns about his vision and she felt with his high CSF pressure he would need a shunt.  She called the neurosurgeon while we were there; and he agreed to see Parker in the morning.  So we stayed in town overnight and saw the neurosurgeon in the morning.

Parker is not an easy child to medically treat.  There are so many medical issues to consider, but I am so grateful that his pediatric rheumatologist/immunologist took the reins on this to steer us in the right direction and to coordinate with Parker’s docs because I honestly didn’t know what to do for him anymore.  The neurosurgeon agreed with our concerns about his multiple spinal taps and increased cerebral spinal fluid.  After much discussion about the complications of putting in a shunt for a child so immune compromised and a little more fragile than most, the decision was to make a very scary and bold move but under medical observation in the pediatric ICU (intensive care unit).

Topamax was obviously not working.  His vision is so precious; we could not continue down the current path.  Parker’s pressure was increasing even more and his head aches and visual intermittent blindness was increasing.  Originally, his neurologist wanted to use Diamox to treat him, but couldn’t because he has both a sulfa allergy and a corn allergy (corn is a binding agent in many meds).  But because the Topamax was not working his team felt we needed to actually try Diamox even with his previous allergic reaction. 

Parker's doc in PICU first met him at  Camp Boggy;
Nice familiar face!

So, Parker was admitted into the pediatric ICU and that night he was giving Diamox via his port because there is no corn in the intravenous form.  The doctors and nurses all stood in his room, with epinephrine shots, benedryl, and crash cart on stand-by, during the 15 minutes it took to infuse the Diamox into his port.  As a mother, this was incredibly intense…as I am sure it was also intense for Parker.  We distracted him with videos and he actually did awesome while it was going in.  I was so hopeful…then about 10 minutes later, he started turning bright red with hives; and he said his throat was feeling thick like something was stuck in it.  Everyone started to ramp up in the room…benedryl was given, then more benedryl was given, then solumedrol was infused.  He was beginning to breathe easier… and everyone started calming (except my beating heart…).  He WAS breathing and that was good but through that very long sleepless night afterwards, I was on pins and needles.  Thankfully the benedryl helped him sleep.  But with the blood pressure cuff going off every five minutes for two hours and then about every 15 minutes the rest of the night…along with many beeps and alarms on the monitors…I did not sleep at all.  We were told by the night doc that this probably meant we were going to have to do the shunt.

All that night, I was on high alert and trying to prepare for my baby to go into surgery.  By morning, the plan had changed.  His rheumy came to discuss not wanting to give up on the Diamox quite yet, despite his reaction.  I have every bit of trust in her but I was absolutely frightened.  I explained to her that I have gone into anaphylaxis many times and that this was a huge concern.  She too was concerned and she brought an allergist into the mix of docs to discuss this.  She explained his complex medical issues in great detail to the allergist and as I listened and processed, it reminded me how incredibly blessed that this doctor is caring for our child and that she totally has his best interest in mind.  Because he didn’t go into full anaphylaxis, they felt that it was worth a try to desensitize him to this drug under continued observation in the ICU.  This was really hard to share with Parker. The doc did a great job firmly explaining what was going to happen; and that they were going to keep him safe.  Then I watched the doc soften, and share so much love with her eyes and gentle caring touch and Parker seemed to understand and trust her fully.  He then told her that he believed in her because she has already saved his life.  It took every ounce in me not to burst into tears as I watch the doc’s eyes well-up.  I know she understood the enormous trust that we had in her.

Prior to starting the desensitization process, the priest came and we prayed and he anointed him with holy oil and put much hope into the process he was about to endure.  So we started again, but instead of pushing the med through his port, they had him drink it (majorly yucky).  Over the next two days, the Diamox dose was slowly increased all day long.  Parker did amazing!  Yes, he still had hives.  Yes, he still itched like crazy.  Yes, he felt absolutely miserable with fatigue and pain…but he could BREATHE.  This was really remarkable.  I know angels surrounded our child.

Now he is at the full dose and he has maintained it for a day, even under these very uncomfortable and itchy conditions.  We were just moved down to the floor he is usually on for a few days to continue to monitor how he does on the full dose.

Our family wants to express our incredibly deep gratitude to everyone who has been following Parker’s journey and encouraging us.  Systemic juvenile arthritis is a disease that needs more attention and funding and these families who endure what we go through are the most resilient individuals we have ever met.  This week was especially emotionally difficult for me because three individuals passed from this disease.  I feel so fortunate to have our smiley, funny, compassionate Parker in our lives.  We must continue to share our story, as hard as it is, so that others may understand and we can get closer to our much needed cure.

We thank all of you for your ongoing love, prayers, and donations.  We had several friends and family make High-$5 donations in Parker’s name and this has really made Parker smile huge.  When you don’t have much control over what is happening to your body, doing something positive and good makes all the difference.  Parker is thrilled to be able to help other families who have children with chronic illness through High-5-Club. (Click here:  www.High-5-Club.org) 

We are thrilled to be able to leave our “Fish Bowl” room in the ICU (pun intended) and  we will “just keep swimming”…And with every stroke, Parker gets a little stronger.  We love you all!

Brave Parker’s Second Spinal Tap

As I look for the words to explain what is happening with Parker, I want to impress upon everyone who reads this that Parker is such an incredibly strong youngster dealing with way more than his fair share, yet he is enduring all of this like a champion.  He persists…pushes himself…encourages Michael, Logan and I in such a way that I cannot find the words to match the enormous gift he is to our family.  Logan, Michael, and I have a front row seat to witness his passion for life and his appreciation for the love that surrounds him.  He is so thankful for all who are praying and encouraging him.  And so are we…

On Monday, we went to see the neurologist for a follow-up appointment.  Parker explained to the doctor that he felt he was getting worse.  He told him that his eyes were now blurry all the time and the episodes of intermittent blindness have tripled.  He also explained how his ears feel like a thunder storm and ring and it is hard to hear.  And his head had more pressure and his whole body was now in tremendous pain (surely a JA flare).  And his tongue tremors when he sticks it out… 

The doc examined the inside of his eyes and Parker asked, “How does it look in there?”  The doc replied, “Let’s just say, I wouldn’t want this in my eyes.”  Then, he turned to Michael and me and said we needed to do a direct admission now and plan on another spinal tap in the morning.  He explained that if his pressure was ok, then his increased pain may just be because we stopped the doxepin.  But if it was the same or even higher then we needed to talk about next steps which might include a shunt.  So we prepared for admission…by going to get food, because he would be on a drip until his spinal tap with no food or drinks.  And Michael went home to pack us a bag and get meds.

Last bit of lovin' prior to spinal tap.

I tried to keep Parker busy until we had to go for the spinal tap at noon the next day.  He knew exactly what would happen, since we had only been here 2 ½ weeks prior.  The surgical staff was welcoming and he cut jokes, re-introduced them to Igi and talked about how Igi has been through everything with him…he then explained the whole procedure to the surgeon and anesthesiologist.  Then, he kept telling me that I was a wonderful mom.  And of course, we took a picture together…again.

As I sat alone and waited and prayed for my sweet boy, the surgeon came in and sat on the couch next to me.  There is something about the doc taking a seat next to you to talk.  He started with how incredibly remarkable Parker is and that he is so smart and kind and that he chatted with him prior to the procedure.  He felt that Parker was handling all this better than most adults. He said that he really thought he would be better this round…he was not.  Parker’s pressure had increased in the last two weeks even more and was now at 42.  He said he took off enough fluid to get him down to 20 but he was certain, this time, the post headache was going to be worse; and that we should really just let him sleep through the first two hours of not moving.  He then went on to explain that he was most concerned about his vision.  As I sat staring at him with tears welling up in his eyes, I began to cry.  I asked about my biggest fear…could he go blind?  The answer…yes. He then said that he felt that doing a shunt in his head is quite complicated with his medical issues and that he felt that they were more likely to do a shunt in his spine or put a bolt in his head to periodically tap it and drain fluid as pressure builds.  I then said, “no, he can’t lose his vision, he has lost too much and this cannot happen to him.”  After he left, I sobbed…both his pseudo tumor and the papilledema had gotten worse.

Once I gathered my composure, I went to Parker and held his hand over the next hour and until we went back up to the room.  Well…..the plan had changed while I was downstairs with Parker.  The neurologist had talked to the neurosurgeons and they didn’t feel comfortable doing surgery until there were no other options…so they decided to increase his Topamax and send us home.  I asked why because it obviously was not working for him…but he was firm that this had to be done first.  So then I asked if that meant that he would need another spinal tap.  He just said we would cross that bridge when we get there.  He then advised us to find a neuro-ophthalmologist who could put in a sheath in his eye to protect his vision because if this pressure on his eyes continues for another 4 months (6 months total), then it could cause permanent blindness.  Unfortunately the neuro- ophthalmologist at this hospital was in the process of relocating and the next closest doc that he knew of who does this surgery is down in Miami.  So, we packed up and went home that evening to explain to Logan what was happening to his brother, to rest, and to come up with a plan. 

Yesterday, I called Parker’s rheumatologist/immunologist and explained what was happening.  They too would recommend Miami but that they also have neuro-ophthalmologist at their hospital.  So, now they are trying to get Parker in by Tuesday (since we will be there anyway).   Today, I spoke with Parker’s insurance case manager and the Miami docs are not in network.  So, if we have to go that route, we will have to get special permission.

Hospital art made with surgical instruments.

We thank everyone for giving us some space to be a family, to process all this, and to move into our next steps.  Of course, we are clearly not done with this newest battle and we appreciate every single sentiment, words of encouragement and your ongoing endless prayers for Parker.  Much love and hope.

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!”