Friday, May 3, 2013

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




  1. My heart hurts for your family. I wondered if there could be a connection for Logan with the migraines, but I was hoping not. I am so sad that he has now been diagnosed. And Parker! I am glad that you have some idea of what is happening with his sleeping. While it is just one more thing that you don't really need right now, at least you have answers. I pray that this works well for him, and maybe even helps him to start to recover a bit, since lack of sleep increases inflammation levels! Always praying for you all!

  2. I so wish I could make this better for you all. i am praying for more answers and continued healing, especially now that rest is possible. We will see you tomorrow with our PURPLE and positive vibes!
    We Love You.