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!” 

 

So Many Thoughts…

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

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

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

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

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

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

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

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

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

Our Children Are Our Hearts…

Our family is processing a lot this week.  And we know that the love around us will continue to propel us forward.  Michael and I love our boys so very much and we are thankful to have each other.

Parker is making gains.  But I am going to be completely honest here… he has a tough battle that doesn’t seem to end as much as Michael and I want to take it all away for him.  His body did not do so good with the sleep study and they had to put on the mask in the middle of the night.  As a mom, laying in the dark listening to Parker take his breaths, waiting for 2:00 a.m. to pass and hoping it would come and go was heart wrenching…then that door opened and mask and machine went on… my world turned black.  But then a remarkable thing happened, I realized that he was sleeping calmer, deeper and a total peace came over me. 

This child has been struggling for years with his sleep.  We always thought it was due to his intense pain, but his inability to breathe correctly has totally interrupted his sleep and I felt so fortunate that he was alive and breathing.  For the previous month he had been sleeping the entire days away…one of his newer medication was too strong for him (and has since been adjusted)… and this is going to sound “dramatic” but all I could think was that Parker was scared too that past month and he had said to me several times, as he lay with me in bed, that he was scared he would fall asleep and never wake up.  That is a very difficult thing for a child to process and yet, here he was, talking about it and looking for reassurance that of course I gave him.  Many nights last month, I lay awake as he slept…and I just listened to him…making sure he was breathing.

We now know that he needs a bi-pap machine.  It is being delivered Monday.  His breathing was worse than we or the rheumy thought.  He is having difficulty breathing in and out while he sleeps, thus the “bi”-pap need.  We are so glad that we were referred to pulmonology.  He will have pressurized air pumping in so he can get better oxygen and also pressurized air to push the carbon dioxide out.  We are incredibly hopeful about this machine.  Not only will he sleep better but Parker will get the rest that he needs to heal better and have more energy during the day.  This is completely huge!

We also just found out that his vitamin D levels were still too low.  Despite the fact that his rheumy had tested him over a year ago and put him on vitamin D with calcium his body had a mind of its own…he has continued to lose vitamin D.  When levels drop, it has been described as feeling like bones are breaking…feels a bit like this disease has been totally torturing our child…thankfully now he is on even higher doses of D and of calcium.  So this is another step in the right direction.

We also are on the hunt for a PT (he has been back on the “wait list” way too long) and he will be starting aqua therapy.  And yesterday he had his first biofeedback therapy visit.

Finally, we are still thankfully seeing progress with Parker since he has been on rilonacept.  Unfortunately, our “medicine” insurance is now denying it.  His doctor is appealing and even the “health” insurance has now gotten involved to help advocate on his behalf, since they know that if he doesn’t have this med he may regress and land in the hospital…which of course would be a huge medical expense.  We are staying hopeful that in the next couple of days we will hear good news because Parker’s labs have been better than they have ever been and we just cannot imagine them denying this. We are praying hard and hoping big…

So that is “scoop” on our incredible, resilient son, Parker.

Some of you know that Logan, Parker’s brother, has migraines... well his neurologist referred him to Parker’s pediatric rheumatologist to be checked to “rule out JA”.  Last Tuesday was the big day.  Parents know in their gut when something is not quite right, but we were so holding out hope that we just were completely wrong.  Logan has enthesitis-related juvenile arthritis which is considered a spondylopathy.  Click for more information...

This form of JA is less aggressive and dangerous than Parker, but none the less it is yet another autoimmune issue that our family is battling.  Logan also has some other issues…weird eye and skin issues and one side of his back is higher than the other.  The doctor is running many panels of blood to look at other possible autoimmune diseases.  She is also referring him to a pediatric orthopedic doctor for his back.  His right shoulder blade wings out considerably and she said this could be a developmental issue, a form of scoliosis where the spine twists, or some other issue.  Of course we are all thinking:  is this tied to his incredible migraines?  So before he starts PT we are going to get this checked out too.

Our family is working hard to focus on gains, life’s gifts, and our incredible relationships.  If ever there was a time to be thankful, it is certainly now.  Tomorrow is the Arthritis Walk and with every single step we take and every turn of the wheel chair wheels, we will be hoping for a CURE in our near future.  Now for both our boys and me…last night my amazing, funny, loving husband said he wants to sing me a Sesame Street song and he starts singing “One of These Things is Not Like the Others”…Of course I couldn’t help but laugh…so whether we are laughing or crying…I am so glad we are doing it together.

 Walk Page:  Purple Playas