Monday, December 28, 2009


Our Christmas Eve MRI went smoothly.  Gary was a hoot on laughing gas.  The team was very impressed with his cooperation.  They said toddlers can be difficult because they don't like the mask on their faces.  But the mask was attached to a green balloon.  Each breath Gary took it would go up and down.  One inflation of the balloon, he thought that was pretty funny.   That first breath being gas made him want that mask on to make the balloon go up and down.  Giggling commenced.  It was precious.  It wasn't long before the laughing gas turned into the smell of the ocean, as the nurse called it.    My sweet prince was then in a sweet slumber.    We were asked to leave.  So Mom and Dad went up to the hospital cafeteria to grab some Christmas Eve breakfast.   He was returned to our room all hooked up.  He had what looked like a tube but really was just hold him tongue down.  That was hooked up to oxgyen.  The nurse came in and watched him.  As soon as he took a deep breathe she removed all the stuff from his mouth.  He slept for another hour.  We were able to get hisIV out while he was still out of it a bit.  The ride home he was quiet.  We stopped and got him a Christmas Eve Cheeseburger and chocolate shake.  He was quiet the rest of the afternoon.  He did well!

The doctor called 6 that night.  He said overall it looked good.  There are some muscles in his pelvic area that show signs of inflamation.  The doctor says there is no way to tell if its old inflammation or new.  So we were cleared to go down again on his steroid dose, from 4ml to 3ml.  That is a good thing.   Our next infusion is on January 4th of steroids and IVIG.  Then we have an appointment with the dermatologist on the 5th.  Someone actually asked me if he has chicken pox!  I am hoping the dermatologist has answers to what this particular rash is.  The rheumatologists bounce back and forth on whether they think it is from dermatomyositis. 

I have my own frustrations with the doctors.  I know they do the best they can but sometimes I think even they forget they are human.  I was asked, "do you pick out every little thing with him?"    Meaning do I pick out everything I think is wrong with him.   I replied, "why yes I do, wouldn't you if your child had a disease?".  No worries, just weeding thru an ego some young docs tend to pick up.   He had made that comment after I had told him about Gary seemed to be having a little trouble on stairs again.  It was nothing significant but a change.  I would think they want to know every little thing.  I would if I was a doctor. 

Last month they expressed concern over his liver.  The levels for the liver had come back down I guess because it was not even mentioned.  Since we are seeing the dermatologist next week, I will ask what he thinks about that.  I know he is a skin doctor but sometimes when something is off in your body, like the immune system, it can cause a rash. 

I am so excited!  I got my first two sponsors!  Really excited!  I ran 10 miles yesterday and I have to admit, it was a rough ten miles because it included hill training.  I read the Austin Marathon is very hilly.  PRAYERS welcomed!  Thank you to my first 2 sponsors.  It put me in tears this morning.

Wednesday, December 23, 2009

Merry Christmas Eve Eve

Gary is so excited for Christmas.  He keeps hugging and kissing my leg, looking up at me says, "ho ho Mom? Predants Mom?"   He runs away in half dance of cheer.  So precious!  My older two just want to know how many.  They are very concerned with counting.  I refuse to wrap there's though!  Oh the anticipation.  We had a clinic appointment yesterday.  It went fine.  We just did a recap of what is going to happen with the MRI tomorrow morning.  The MRI sounds like no big deal.  Easy for me to say.  I am not getting the MRI, Gary is!  I have read about a few bad experiences but I am sure it will go smooth.  I will definitely bust out the soft Christmas jammies for him to sport tomorrow. 

I suppose it is not official until I am registered but I have every intention of doing so.  I have been running for the past 2 weeks, this is my 3rd week of running and trying to prepare my body for the Austin Marathon to raise money for Cure JM.  If I make it, most fantastic (meaning complete the 26 miles), if I don't, OH the utter humiliation but it was good to give it a go right?  So far I am up to trying to do 8 miles a day.  Yes, I run        ok  jog     is more the word   8 miles a day.  I did try to run yesterday and hit a really big bad wall.  I had nothing left.  Holiday shopping and baking kind of robbed whatever extra I had.  I tried really hard but I did two miles and said hmmmm no way.  I think it is important to listen to my body.  I have tried to up it to 10 but I am not there yet either.  But that was after doing 16 miles in 2 days.   I know, I am I going to do 26 if I can't even do 10!  I still have like 50 days left.  In 19 days I have completed 88 miles.     Oh Good Lord, Heaven help me!  I have pledged to raise 1,000 dollars  : ) . .  Wish me luck and send the power my way.

Wednesday, December 16, 2009

Eye Check

Gary's eyes looked good!  Back in 6 months to keep an "eye" on his vision.  Wink wink, get it?  Eye vision   ok     stop it 

Monday, December 7, 2009

A Christmas Present

We have our MRI scheduled for Thursday, Dec 24th.  It was the soonest they could get him in so I took it.  I figured we will do it early in the morning.  We should be home by noon.  It shouldn't interfer with Christmas Eve festivities.   If it does I know my family will be understanding.  It will be good for Gary to recover around everyone.  They are all loving distractions for him.   

An MRI, with a bow on it for my little man.

Sunday, December 6, 2009

So maybe he needed a pulse of steroid...

Yesterday Gary was feeling much better.  So much better that the pesky rash around his mouth and eyes is a lot better.  It looks like it has faded.  This is so great, and not so great in my mind.  It is great it's better, but it is not so great that he actually needed it.   I was really hoping he wouldn't.  I am sure we will find out next week if he will continue to need pulses?  He also didn't do any itching last night.   He slept a bit better than usual last night.  The night before was hard but he wasn't sleeping because of itching.  He needed to hold his balloon.  Every time the balloon slipped out of his hand, he woke back up freaking out for me to get the balloon.  Steroids can make kids a little crazy.  He is so cute.  We were watching Calliou for the millionth time, but a new episode.  This episode was about Calliou going to school.  Calliou hugs his Mom good bye and goes to school.  Gary turns around to mimic what he had just seen.  Then BURSTS out crying at the thought of having to leave his Mommie.   I had been entertaining the idea of getting a part time job again like I had before when Gary got sick.  To help out with finances.   Guess that won't be happening any time soon.   I couldn't bare to put him through anything like that right now.  He has to go thru enough. 

Summer, thank you for your comments.  I really love getting your point of view on everything.  You are wonderful.  I hope you feel better soon.

Friday, December 4, 2009

Rocky Road, Not the Ice Cream

Today we had our IVIG infusion.  All did not go as planned.  The infusion center has never been a picnic.  We try and make it one, but it never turns out that way.  I was 15 minutes late due to lovely traffic.  I never worry though.  People of Seattle just understand sometimes.  No one said a word about it.  As we settle in our nurse handed me the list of medications he would be receiving that day and what he takes at home.  They do this for verfication to make sure everyone is one the same page.  A lot times old med's are on the list or the wrong doses just because certain departments didn't do updating, no big deal.   So going over the list today it didn't strike me twice when I saw methopred (IV steroids) on this list.   I of course said oh we are not getting pulsed.  We are here for IVIG only.  He said really?   That is what they have ordered.  I said well get on the phone and call someone because that is not what I was told.  Definitely not what I expected.  So they paged the doctors.  The doctor gets on the phone with me.  He explains that something about missing a meeting so he doesn't know the explanation.  I couldn't understand his accent over the phone so I just agreed.  I knew that the nurse would help me understand and get it straight.  At that point we were definitely on for IVIG.  We numbed his hands up with the numbing cream and wrapped him up in warm blankets.  The IV team came.  Gary screamed and protested of course but it was good because he was distracted.  Calliou was on the television so he would do little spurt crys.  Distraction, numbing cream, and heat are the name of the game.  He did end up getting poked twice though.  I knew something was up when they took a lot more blood then they usually do.  We had just been in 1 week ago for labs.  A little bell went off in my head.  I paid no attention to it.  In the mean time the doctor had called me back to explain why they were pulsing him.  I got on the phone with him.  I could not understand a word because poor Gary was screaming.  I handed it back. I told the nurse to get the explanation.   We would go from there.  They explained that he needed the boost since coming of the cytoxan and starting the cell cept.  I felt frustrated (not at the doctors), let down, confused, and almost defeated.  We are down to 4ml on his home steroids.  I thought this was the beginning of the great taper.  I did not want him pulsed.   I want the effects of this drug to go away.  Life saving, yes.  Damaging, yes.   He has begun to slim down.  He has been having a much easier time getting around.  I can tell he is more comfortable.  UUUuugghghhh.  Not what  I expected.  So I settle into the idea.  It is what is best.  He needs it, he needs it.  It is hard when you think you are headed in one direction then suddenly go in another. This was only confirmed when my senior doc came down to the infusion center for a little chat.  She sat in front of me with a huff.  "I want to talk to you about were we are heading."   She told me his labs are ok,  not good, just ok and she is feeling frustrated.  During the past couple months Garys has showed signs of disease activity with a rash.  More than one rash in fact.  Gary's labs have been bouncing around, up and down.  Months ago I express concern about it.   She was great.  She did not want to go chasing a rash with harsh drugs.  It doesn't seem to be panning out though.  You know when you are baking something in the oven?  You open the door to check on the progress of your dish.  A blast of heat comes out when you first open it.  You stand back for a moment so you don't catch it in the face.  Yeah, well this conversation was like forgetting to stand back and taking the flash of heat in your face. 

Where We Go From Here
Gary still has good energy and strength.  His skin, not the greatest.  Levels, could be better.  Next week they want to put him under and give him a MRI to check for muscle inflammation.  After that we will be doing an ultra sound of his liver.  The rash that doesn't seem to be related to JDM could be a result of his liver throwing off irritation.   Since he did have liver level that was elevated they want to ultra sound it to make sure it's ok.  If it is irritated, she explained we would need to get him off the steroids as soon as we can.  This is where it gets interesting. 

Finishing the day out went a little rocky.  We ended up not finishing the IVIG.  He woke up from a nap.  He began having some kind of reaction.  His arm was red, and itching.  He was complaining of pain.  Flipping himself everywhere.  They paged rheumatology over.  They ran another round of intravenious benadryl.  Gary was very spacey walking out of the hospital today.  On top of that they gave him the HINI vaccine. 
Shewwww.  What a day.

Already the effect of the steroid pulse is turning the house upside down.  Please don't talk to the two year old.  He may spit on you in addition to kick, hitting, or biting you.

Wednesday, December 2, 2009

Holiday Kick Off

Yeah for it being that time of year again.  Boo for it being that time of year again.  I hope everyone had a wonderful Thanksgiving.  We did!  Lots of family over.  I love being with family.  We even got to meet family I have never met before so it was definitely good conversation. 

We have our IVIG infusion this Friday.  We arrive at 815 in the morning.  I purposely scheduled it early because last time IVIG took eight hours.  Gary rash on his face that I have been waiting patiently to go away on its own has not.  It is looking redder and a bit rougher.    His levels that were low from the cell cept came back up enough for us to increase the dose to max for him.  I told them he still pale.  They said he is anemic so to start him on a multi vitamin with iron.  His LDH level also popped up but we will just have to keep an eye on it.  His strength is excellent.  He has been a bit sluggish but I am sure that is from the anemia.  Time to serve this family up some liver.     Gack!   No way.  We have appointments set for a dermatologist and to have his eyes checked.