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

 

 

Our Son’s Body is Under Attack But He is a Fighter

Michael and I have been processing a lot…should we blog….shouldn’t we blog… We know that people who care about us want to know what is going on with Parker, but we have been processing some hard information lately.  After a family talk, we decided it was time we share…but please know this is hard.  We have been working through a lot and we have been careful with our words because we don’t ever want to over burden or worry our oldest son, Logan, especially since he has been fighting his own battle with vicious migraines.  I am happy to report that these migraines are getting more controllable and along with his medicine and infusions he is now quite good at biofeedback.  His therapist is amazing and we are very impressed with this technique.  Last Saturday he got a migraine, took his meds, and did biofeedback and worked through the migraine and it went away.  This is pretty major and we are so proud of him.

One reason we haven’t blogged lately about Parker is we wanted to first find out how Logan is processing all of this.  He is in a better place now and he wants us to continue to blog.  Then there is Parker, he has been processing some very intense and heavy thoughts because we got some additional scary news about a week and a half ago.  We are quite proud of Parker too.  He processed his concerns aloud with me and his counselor.  He too wants us to share what is going on.  Michael, the boys, and I have prayed and talked and processed and we feel that others need to know because we need support; we want others to learn about the various paths this disease takes; and we need help raising funds so that one day there will be a cure for children with juvenile arthritis.

Parker has complained for quite some time that his chest hurts.  In fact, he has had chest pain throughout this battle against systemic JA.  Several times it has been costocondritis (there are joints in the rib cage and they can become inflamed and painful), other times it has been the pericardial effusion (swelling of the heart lining), and sometimes it was his asthma.  But even after his last round of pericardial effusion he has continued to complain.  And when we were at the rheumatologists this last month he was having the pain again so they ordered a stat echo cardiogram.  It came out fine.  Thank God.  So then we talked about how maybe since we have been trying to decrease the steroids, that maybe it was his bodies way of saying “hold on…I like those steroids…I am use to them…now I have to work harder to breathe…”  So we thought maybe it was causing his asthma to flare because he is so steroid dependent now.  But, he also had been on this dose of steroid for over a month now. 

We decided it was time he see a pulmonologist to get help with decreasing the steroids.  Because Parker’s rheumy is about 2.5 hours away, she suggested we go to our local allergist (who knows Parker very well) and get a referral to a local pulmonologist that she recommends.  So we went and the allergist ran a PFT (pulmonary function test)…he failed…moderate obstruction.  So she increased Parker’s inhalant steroid and sent us to the pulmonologist for consult.  At this point, we were seriously thinking this was just his asthma (please don’t take me wrong…asthma is serious too…but you have to remember we have been dealing with asthma his entire life and we have felt like we totally had that medical issue under control). 

We went to the pulmonologist last Monday…Michael was out of town on business…oh how I wish he would have been home, because I felt like our world had turned upside down just as we had started to roll along a good path.  This newest doctor was such a kind and gentle spirit and I am so incredibly thankful that he had the nurse take Parker out of the room while he first explained to me what his impressions were.  It helped me hold it together better when he later explained to Parker. 

During our visit, Parker did the same pulmonary test again…again obstruction…then they gave Parker a breathing treatment…the doc’s theory was if the test results got better after using the meds then we know it’s just his asthma…if not, then it’s more…  He repeated the regular PFT and once again…obstruction.  This led him to further tests…a more complex PFT.  The spirometer reading was not good…  it showed not only obstruction but also restriction and this means he likely has mixed lung disease. 

So you might be thinking, what in the world does this mean…because I certainly didn’t understand it.  I am still trying to understand it.  Apparently there is no part of the body that is immune to the attack of systemic JA!  When they say it can affect any organ…well, now we really know this.  I mean…yes, it has already attacked so much…but this one organ really hit me hard…The crazy thing is, we have been celebrating because Parker’s blood work has improved so much.  He also had decreased swelling (although we noticed things are starting to swell again…and hurt more…and he is having a few low-grade fevers with rashes), but he has better blood work.  This disease is simply the cruelest thing I have ever witnessed. It teases with your emotions…gives you a false sense of security.   Our understanding is that with mixed lung disease, Parker is having both asthma and interstitial lung disease.  The pulmonologist said that he is like 1% of kids dealing with pulmonary disease.  This explains why his chest has been hurting and burning.  It also explains why he has been sleeping a lot more again.

So, yes, our son’s body is attacking itself!  And we are obviously all concerned about this.  The docs are working together…they are checking his meds, trying to figure out to what extent damage has taken place; we have more tests in the near future; and we are all arming up in our battle gear to fight alongside this JA warrior and win with PURPLE Parker Power.  Parker is strong-willed and we are so very glad that he is because he is fighting for his life and we love him dearly.

From the Voices of CHILDREN with Juvenile Arthritis

Families with children who are journeying with Juvenile Arthritis are some of the strongest people we know.  Many of these amazing families shared with us what their children have to say about JA and gave us permission to post their words on our blog.  Thank you to each and every one of you for opening your heart so others may better understand what you go through.  Names have been removed to protect privacy. 

These children’s voices speak volumes…

·         Some days you ache really bad and some days you feel great.
·         Some kids have really bad arthritis all the time and we need to help them.
·         When you have arthritis, you get to go to a bunch of events that are only for kids who have it. You also get to meet a bunch of different doctors and nurses who are really nice. You can make different friends than you would make if you didn't have arthritis.
·         I like to go to the children's hospital, because I can have sushi for lunch.
·         I want more people to know that a lot of kids get it and it's not JUST arthritis. It is more serious than people think. Not that most people realize that kids get it.
·         The BEST thing about JIA is Camp Boggy Creek.
·         I really wish people could understand the amount of pain some kids suffer.
·         People seem to think that because we are children that our pain isn't as bad as it is.
·         The best part about JA is my JA Friends; they are like brothers and sisters who really "get" me.
·         It hurts and I feel yucky.
·         I gets a lollipop after my needle bag (infusion) and Santa comes to the hospital because I is special.
·         It is cool to go to Camp Boggy.
·         I want others to know that just because we have this disease, it doesn't make us WHO we are, it's just a part of us and something we deal with every day. Don't look at us differently or treat us differently because of this. We are people with our own personalities and we are fighters. We are in pain every day and we still get up, put a smile on our face and go and do things that "normal" kids do.
·         We can laugh, joke and have fun just like the rest of you so don't ignore us or make fun of us because you think we are different. Talk to us and be our friend and you might find that you just found the best friend you'll ever have...
·         And the Best thing about it.... As we get older and start accepting that we have this disease and gain a little more confidence, we find that we can do things we never thought possible, we meet people with the same disease or something similar and find that we aren't alone and eventually realize there is a purpose for us and when we find that purpose, you feel really good about yourself whether it is helping people, raising awareness or just making someone smile because you are smiling despite the pain and agony you are feeling.
·         I love going to her eye Dr. because I like to read the letters.
·         I hate shots; it’s the worst.
·         We talk about all the other kids who have arthritis and pray that they all feel better!!!
·         I miss school.
·         Sports hurt now.
·         JA kids are compassionate, sweet and caring!
·         Even though there is a smile on my face, I'm in a lot of pain.
·         It's hard when I can't keep up with my friends.
·         The best things about JA are new friends who also have JA at Camp Boggy.
·         You get to skip PE.
·         People shouldn't just think you can't do anything just because sometimes you are in pain, 'cause sometimes you are not.
·         You can go to fun places like Boggy Creek and if you are in your wheelchair you get to go to the front of the line at the parks. (Disney, Legoland, etc.)
·         I wish others knew the reality of JA and just how greatly it can impact the lives of those who battle it daily... Just getting up and out of bed can prove to be an arduous task.
·         And I think the best things about JA are derived from what we learn from coping with it... Tenacity and empathy are two of the most glorious gifts adversity can offer.
·         Arthritis took away my high jumps and fast running.
·         Shots on Thursday.
·         Cookie.  Juice. J
·         There is no magic cure, drink, or food that CURES this disease and even the medicines our doctors give us is not a cure it is a treatment.
·         The BEST thing about JA is how it has shaped and changed my life and myself. I would not be who I am today if not for my arthritis, and I like myself.
·         Arthritis is a disease that does not care what age you are... anyone from an infant to an elderly person can get this disease.
·         The best thing about having JA is going to conference and meeting other kids who also have this condition.

·         We have wonderful friends and are able to help newly diagnosed.
·         It is not just bad to your bones; it affects other organs and your heart.
·         JA can affect any age.
·         Sometimes when you have JA you can also have other autoimmune issues.
·         Kids get arthritis too!
·         I have met a lot of cool people.

 

Living with Chronic Migraines (By Logan Lentini)

When most people hear the term “migraine” they just think of a simple headache; what they don't know is how much they can affect you. Living with chronic migraines is a constant struggle.  Now I'm not referring to those who can take a pill at the onset of the headache and it magically goes away, but rather the people like me who have to endure and attempt to overcome the pain after multiple medical treatments (pills, shots, infusions, and biofeedback). It is these people who are most affected by chronic migraines. Not only do they affect your ability to function, but they also affect your social life and you're disposition on just about everything. I personally was diagnosed with chronic migraine at the age of five years old.  I have been able to manage them fairly well up until the last few years. I am now sixteen years old and these migraines have been becoming harder and harder to manage.  We do not know why I am getting them, but we do know that they are limiting my life immensely.

Hypersensitivity, this word solely explains why functioning with a migraine is such an arduous task. By definition, hypersensitivity is described as being "abnormally or excessively sensitive, either psychologically or in physical response." Though it is difficult for a migraine to cause someone to be psychologically hypersensitive it is possible, and we will get back to this later on, as this concept of hypersensitivity is why migraines are so debilitating. It is this hypersensitive nature that makes every task difficult, due to the fact that every one of your five senses becomes about one thousand times stronger. Take reading for instance, this simple activity becomes harder not only because your eyes hurt to the point of even closing them isn't easy, but also because you need light to read and light can make your migraine even worse. And forget about trying to do something that involves noise because this noise will make your head begin pounding to the point where you can feel your pulse inside your head. On top of that smells can often make a headache worse, and laying your head down may be difficult as well due to the pressure being applied to your skull. Even eating can be unpleasant at times, just because the taste in combination with the smell and the chewing motion your jaw makes could easily elevate you pain.

This hypersensitivity can also dictate your social life. As previously stated, when one has a migraine normal tasks become extremely difficult and not worth doing. Taking this into consideration, you can understand how these migraines can control your social life, especially in my case where they can last months at a time. When I have migraines, the last thing I want is to be around people. I know this sounds bad, but think about it, what if they're wearing really strong perfume or cologne? What if they're excessively loud? Then my migraine will elevate, and potentially put me out of commission for even longer. In addition, social activity is generally in a well-lit setting, where there is noise anyway and various smells in the air, all things that make a headache worse. Due to this, I literally isolate myself in my bedroom where it is pitch black and dead silent. Here I can control all headache-inducing-factors, and potentially relieve my pain. Though this is unlikely under many circumstances, it is still possible.

Here is where the psychological hypersensitivity comes in play.  In my personal situation, where I have these chronic migraines for up to several months, my moral begins to fall. Now I'm generally an optimistic person, I have my bad days just like the rest of us, but I tend to have a very positive outlook. However after having to endure the pain that comes along with migraines for weeks at a time, I become pretty negative. The simplest problems that are easily fixed I might add, set me off. And after a while I just become apathetic; I don't even care anymore and just suffer, trying to accept that it may be a long time before I get to experience a headache free lifestyle. This was when I was at my lowest point though, like I previously said I am a very optimistic person.

The purpose for me writing this is not to ask for your pity, that's the last thing I want. I just want people to understand what I go through and to raise awareness for migraines being what they are, instead of their mislabeled definition as a really bad headache. Migraines are far more than this and that is what I want people to know.