Tuesday, May 17, 2016

Taking a Leap of Faith, One Step at a Time

Parker is working on a blog post to share with everyone about how he “walked the entire walk” and how thankful we are to all of you…but in the meantime, we wanted to share that he is going through some pretty big stuff right now.  Recently his rheumy shared that she believes that he has an additional overlap disease of ankylosing spondylitis.  As we shared previously, his SI joints are complete inflamed and huge on his MRI.  For the last couple of months, his doc has been trying to get a new biologic shot approved (stelara).  Unfortunately, even with an override request it still wasn’t approved.  So, the next step was to get approval for another biologic (simponi).  The bummer is that this med is an infusion which means we will be traveling back again to the infusion room for treatment. 

Parker is really in some considerable pain from the SI joints, and although we tried the nerve stimulator, it didn’t work and had to be removed.  We are going to stay hopeful that the new biologic will be helpful for his SI joints, along with helping his jaw, shoulders, back, hip, neck, knees, ankles and feet.  But we are seriously taking a huge leap of faith with this new step forward.

The biologic that Parker is currently taking targets his systemic JA issues and this included his rashes, fevers, and internal organs.  This switch is pretty scary for us.  His doc has checked his heart and it is good right now, of course that is our biggest concern.  So concerning that Michael spoke up and asked the doc about it.  And instead of saying “what about his pericardia effusion” he asked “what about his periodic confusion”…I wish you all could have seen her face, the hesitation as she tried to comprehend what he said was hilarious (oh what stress can do to one’s communication)…and she replied, “I don’t know what to do about your periodic confusion, but we can check for pericardia effusion and keep a close eye on him.”  I tell you, there are so many moments that Michael makes me laugh, but boy the moment was priceless…we all started laughing.  And oh how we needed to laugh.


So, as we take this new leap of faith, we will be travelling back to the infusion room starting this week.  Please keep our kiddo in your prayers and thoughts.  Much thanks.

2 comments:

  1. We will keep you all in our prayers. Thank you for sharing your journey!

    ReplyDelete
  2. My name is Laura Oscar from Florida USA. Iam so full of joy writing this testimony to share with the people out there who must have giving up on hope that "there is no cure for HERPES VIRUS". Once, I was a victim to the oppression of HERPES VIRUS, lived with this virus that I almost gave up on fate to die as a victim to the dreaded virus but thank God for directing me to Dr Zuma.I had an encounter with Dr Zuma who became a saviour to me from the dreaded virus through the help of a friend of mine (Mary). Mary gave me a link to Dr Zuma, giving me assurance that he could cure me of my ailment. I did contacted Dr Zuma, i told him everything because by then, I was down trodden and broken hearted. Dr Zuma felt sorry for me and as such, moved to help me. He promised to prepare a herbal drink for me and then send it to me after which when i get it, I should make use of it as requested of me. I did as instructed and beleieve me dearly beloved, it actually worked out for me. It seemed funny to me because I never beleieved there will be a remedy to such affliction. Today, I am doing wonderfully well, hale and hearty and I am never scared of any kind of sickness no more because I strongly believe Dr Zuma got my back, To those of us who must have been suffering and dying silently from diseases, sickness and viruses like HIV,CANCER,DIABETES,ARTHRITIS and the likes, I have good news for you today, Dr Zuma is reliable and capable of handling such afflictions. Why not give him a trial today by contacting him through his email:drzumaherbalhome@outlook.com or drzumaherbalhome@gmail.com, his web/site http://drzumaherbalhome.wix.com/dr-zuma or call/whatsapp him through his mobile number +2348119007839

    ReplyDelete