It's been awhile since I've shared the latest and the greatest of this crazy disease. Sometimes I need time to process, accept and find the strength to push forward and continue to find JOY in our lives. Other times, I think why share? But I do understand by me sharing our experiences, it has helped many families along the way who are also faced with making similar treatment decisions for their child and trying to understand this crazy disease.
Last year, I traveled 9,866 miles on the highways for medical treatments for Jake and Hannah. There isn't a place on this Earth I wouldn't travel to IF it could take away their pain and allow them to simply be a child. We have been fortunate to have excellent team of specialists and we trust they are doing anything and everything possible. The disease simply has a mind of its own and I have learned to simply find JOY everyday and count my Blessings. We have had many great outcomes and healthy reports throughout the past several months and we are ever so grateful. ( Healthy eyes, weight gain and continual growth, healthy heart reports, fewer fevers, healing broken bones, skin infections resolved, good labs and much happier days) In between those happy days, we certainly continue to be reminded of this monstrous disease it affects our family.
Jake doubled his periactin immediately and did everything to stop weight loss and increase po intake. The worse part of it all- these injections barely brought any relief for Jake and insurance left us with a BIG $bill$.
The news that I have had lots of time to process is that Hannah has now been classified and re-diagnosed to Juvenile Ankylosing Spondylitis. This should not of been a surprise to me, but just not what I wanted to hear. Hannah has had new areas of pain and includes involvement of her tendons and ligaments. It doesn't change treatment plan, just added new areas of concern. Nothing good to say here-- we just continue to hope for better days and that God will hear our prayers. Every prayer spoken, every penny we toss, every wish we make....... We always have that one wish!
Within the next several weeks, we are having to say our good byes to many friends and medical staff, and even horses who have been such a significant part of our lives. Last weekend, our family was able to spend one last weekend at Camp Boggy Creek with many of our JA Families. I'm trying to remember what they say, " We Don't Say Good Byes , We Say See You Later". As we transition to TN, I know there is JOY awaiting for my family, new friendships will be made and these relationships with Arthritis Foundation, JA Families and medical staff throughout FL will always be cherished. For all our friends, family and JA supporters, we'll see you later.
|Everyday, I remind myself to choose JOY!|