Wednesday March 7, 2012

Hi all, thanks for your patience. I meant to post last Friday when Luke's midline came out.

His last dose through the midline was 3 pm last Friday. The nurse graciously came out at 3:30 to take it out. Luke was really glad he didn't have to wait until Saturday. He couldn't wait to get it out. I wonder if it was just a bad reminder or if it just bugged him being in his right arm...

I filled his prescription at CVS that afternoon. The pharmacist raised her eyebrows on 60 mg of Prednisone in one day for an 80 pound 12 year old. She said it was very aggressive. I agreed and asked her if we could move it down, what would she suggest? She said try 20 mg in the morning and evening, that would be 40 mg.

When I got home, Mark said the 40 mg per day is the highest dose that he ever took with his colitis when he was in flare up... and now I can see the beginnings of the "moon-face" roundness on his face...he just doesn't look like himself...

So much to catch up on...

My mom and dad were here last week. Dad was working on the basement room for the girls. We only have some painting, trim and carpet to finish and they can move in. it has gone fast and we are excited to be this far. And Mom made meals and did 12 loads of wash in one day! Catching up after Luke and I at the hospital so many days...and I had told Luke we wouldn't have maid service at home! We appreciated spending time with both of them and for their labors of love.

Then we left on Sunday for Pokagon Gateway retreat weekend. It was a nice getaway until Tuesday night.

Today Mark & I took Luke to a naturopathic doctor in Spencerville. She identified the trouble areas to be Luke's small and large intestines and his liver. She identified several contributing problems and Luke is beginning a treatment regimen today which over time will include (in my simple understanding): removing the contributing problems, healing the tissues, reprograming the attacking immune system and then building up his immune system again. (Crohn's is an autoimmune disease which means that his immune system is attacking a part of his body--his intestines mostly.)

Part of the treatment includes diet changes--not sure at this point if they are only temporary or will be permanent. They include gluten-free, dairy-free, and low sugar. (One of the findings today was candida, which is systemic yeast overgrowth which feeds on sugar.)

We feel blessed to be able to explore several options and our desire is to get to the root of the problem rather than just attempting to manage the symptoms. So we have an appointment to meet with a pediatrician tomorrow at noon. (We have met with a GI doctor and a surgeon, but we want to be established with a pediatrician who knows Luke and can check his whole body.) We also have a referral into Riley Children's Hospital in Indy. There are only two ped GI doctors in Fort Wayne, and after dealing with one, we asked nurse and doctor friends in this area, and they are all recommending that we get established at Riley and work with GI doctors there if needed.

We so appreciate your continued prayers. We know that whatever any of us decide to pursue for our health, the Great Physician is the one we must ultimately turn to for healing. We continually remind ourselves of this.

We feel your prayers and praise "the God of all Comfort."
Julie