HOME

We are home.  We came home last night at about ten.  Sooner than expected.  I believe the nurse did not properly calculate the IVIG rate.  So they dumped it in him in a matter of 4 hours.  It usually takes more like six.  I could be wrong.  My judgement is off due to fatigue.   I started to feel like a three year old myself.  Nurses have such hard jobs.  Dealing with irrational families LOL.  After Gary started feeling better, they infused him with methopred (steroid).  He did not tolerate this well.  He was screaming and twisting.  We turned it off to give him some more ibuprofen thru his IV.  They had run the usual benadryl with it but the steroid did not get started until almost an hour later.  They couldn't find a pump ect,.  He was hypersensitive to everything.  Words, food, light, dark, noise, quiet, ME.   Thank you Lord for blessing me with sisters and their husbands.  Uncle Ray and Aunt Amy sat there with us for two days.  Bringing presents and junk food.  Uncle Bill and Auntie Lyssa stayed back and took care of the kids as always.  They are always so willing.  Things just get taken care of without saying.  They are all amazing.  I do not take them for granted.  Uncle Bill even dappled in some hair styling the morning of school.  Uncle Ray was dedicated to playing jets, legos, and cars to keep him distracted from his discomfort.  It worked well.  Gary was done with Mom.  If I talked wrong it sent him into rage.  No offense taken little man.  Whatever you need to do.  Children's was very quiet this time around.  Which is nice.  We had a corner suite to ourselves.  It just makes a world of difference.

Official Diagnosis
His official diagnosis was a JDM flare.  The calcinosis that was coming thru caused his body to react in a violent way.  Here is a story to share for you that proves God orchestrates our lives.  We originally went into the ER because I thought he had a broken collar bone.  Within an hour he spiked a fever and became violently ill in the ER.  God knew where I needed to be and what was coming. He led us to the best place to be.  So beautiful.  Good plan God.

MEDICALLY SPEAKING
So the plan is to stop his lansoprozal which is what they give when you are on steroid.  It prevents any damage or ulcers from forming in the the tummy.  Gary is back up to 1ml everyday now which is still so little.  So much for The Great Taper.  : (  But I think they want to keep rocken it ever so gently.  Since the lansoprozal is going to be stopped, they are hoping he will absorb the medicine better.  A lot alarms of course go off in my head.  One of the signature complications of a JDM patient is they don't absorb the medicine because of blood vessel damage in the lining of there stomach.  It will all be a matter of finding the right medicine cocktail.  Can I put my pom-pom's down now?  They are getting heavy.  Over the next couple weeks the doctors will meet and decide which medications we are going to try.   In the running: Cyclosporin 
They are talking about replacing methotrexate I think.  Sure!  Why not.  I mean its fun to try all the malignant warning medications.  NOT.  Depending on what the calcinosis does, they may start something to help with that.  They will also consider Pamidronate .  


TO GARY WHEN YOUR AN ADULT
Dear Gary,
If you are reading this as a adult, I wanted to say sorry.  I am sorry if you are having any trouble with side effects of these medications.  I need you to know that I was only trying to keep you healthy.  It was very hard to see you has a little guy going thru all this.  If you battle continues in your adult life, know that I was only trying to do what was best for you.  I was only trying to get you to this point in your life now.  I have no doubt you have  an incredible amount of courage just with everything you have been thru at age 2 and 3.  A lot people have said it is good that you are so young because you won't remember.  I know in my heart at this point you will no doubt remember.  So if any of these medicines cause future problems, hit them head on son.  We have come to far.  I love you.  Be the best you can be.
Love, 
MOM


PICTURES
I wanted to post more pictures from whatever day it was.  I don't even know what day it is.  These are from Tuesday.  I don't post these for attention.  I don't post these for sympathy.  I don't post these to expose my child or exploit him.  I post these for the families that are going thru similar experiences.  Especially with JDM.  I find myself wanting to know what others have been thru.  What medicines they used.  So I feel it is my duty to help other families by having the information of our experience available to them.

Calcinosis on chest area.

Calcinosis around his hip and groin area causing discomfort.

Calcinosis coming in on top of ribs and hip area.

All the redness has now subsided with the help of IV steroids, and IV ibuprofen.  His discomfort is also much much better.  Now we are dealing with the CRAZIES from the steroids.  Screaming, extreme sensitivity.  

ANGEL

I decided to feature my angels once a week.  Anyone who supports our family and is there blessing us.  There are so many so I am going to pick one and feature them!  So today's is my angel, Michelle Pritchow.   Michelle constantly supports us and our cause.  She blessed us with a visit in the hospital.  Her presence is soothing and delightful.  I am so lucky to have her as a friend.  She brought Gary a book and color crayons and other goodies.  She brought ME a running magazine!  A girl magazine!  I was very happy.  I had a lot of fun reading running facts.  She even drew a picture of Sponge Bob while Gary had his IV done.  Drawing it upside down.  LOL  Michelle has three children of her own that she does a wonderful job of taking care of.  So when a busy Mom takes time out and comes all the way down to Seattle to see my child.  Well, then.  That's pretty special.  It means that much more.  So thank you my friend.  I could go on and on with her blessings.  Offering to go get groceries ect,. ect,. ect,.  Not to mention always plugging CURE JM and raising awareness.  So thank you my friend.

I know its hard to believe but I have more to talk about LOL.

To be continued............