Friday, September 16, 2011

"I'm not sick"

"I feel fine Mom.  I don wanna go to get pokies.  Tell dem Mom.  Tell dem I all done now."
"Da evereebodee get pokies Mom?"
"I all done with this. I not sick"

Someone is getting older.  I see retaliation in my future.  I sure hope the disease is done because Gary has inside information that his 2 and 3 year old mind could not grasp.  The good news is his labs were beautiful yesterday.  No signs of anything, well besides calcinosis and few cuticles that look grubby.  We have had a few things I was keeping an eye on.  A few spots in his arm pits were looking vasculitis.  But hasn't done anything so I felt better.  Calcium deposits have not increased, no new ones, so that is good.  All in all I love the trend we are on.  I am really looking forward to our clinic appointment in two weeks.  Which med gets lowered first? : D

I so look forward to the day when he doesn't have to take any of this.

Our infusion went great.  Nice and smooth.  I gave him his sedation.  No vomiting, just heavy tears for the IV start.  I gave the nurse the honor of starting his IV.  I told her he is not a hard poke anymore.  He once was because of the steroids but he rarely gets poked more than once.  She did it.  IV team has been doing it every time for 2 plus years.  I heard her celebrating at her desk with the other nurses that she did it!  Giggles.  She did a great job too.   A little to much tape but she put a big IV in since we were going to be there all day.

Gary had the whole boat this time.  Methoprednisone, Pamidronate, IVIG, Methotrexate, Enbrel, benadryl, tylenol.  It made for a long ten hours in the infusion clinic.  As much as he is started to grasp the concept of all this, he still doesn't.  He sleeps through the infusion, not by his choice.  Once he wakes up, the game has started. Instead of saying, "I don't feel good",  he just screams.  Cries and screams about everything.  The ride home was like a violent sea for him.  I constantly was instructed to roll the windows up and down.  He tried to sleep.  He tried to stay awake.  When we arrived home, he just wanted to play.  I think instinct drives him to do the normal thing.  He just wants to not acknowledge however it is he is feeling by playing.  But even a glimmer of stimulus like throwing the ball wrong to him and he goes into hysterics.  I try to get him to come inside lay down.  Makes things worse.  He doesn't care if the sun is doing down.  He needs to play.  My friend Summer gets the medicines that Gary gets.  A doctor recently told her the medication she gets "isn't that bad".   I beg to differ.  I want to slap in one in the face with my "differ".  My son is not this child after getting these drugs.  He is a much kinder, fun-loving boy.  He goes away when the medications that keep him healthy enter his vein.  He screams and hurls insults, in the same sentence breaks, then screams he sorry and he loves us under sobbing tears, then back to the threats and pain.  So yes, these medicines may not be the worst, but they are that bad.

A friend wrote me how great Gary looks.  I couldn't agree more : ).  We have been here before, when things seem to turn a corner.  He gets this angelic appearance.   Still with all the stuff he is on, preschool will have to be at home.  We did have a run to the pediatrician 2 weeks ago because he was having trouble going number one.  All was clear though.  Just irritation.

*Other Children.  School is in session.  They fell back into there routine nicely.  Gary misses them.  Our family eats dinner after 830pm almost every night.  Trying to keep the siblings active and heathly while juggling all the rest like running (which I haven't done in 3 days now), house keeping, working, cheer leading, not paying bills (lol), and tracking school progress, I feel like just staring at the wall for awhile.   Like that song says, "I don't feel like doing anything".  Oh but putting on my chemical suit and cleaning the bathrooms in this house.  Yucky.


  1. Iam so glad to hear that the meds are working. I will pray that they continue to work and Gary will not have break downs.

    This is a hard journey and it is so tough to see your child change so quickly.

    Praying and praying,

  2. Zoe gets pokies too, not fun! We have good days and days where she cries about having to get another shot. At least 4 a day whether she wants them or not or she can't eat!

    I can relate with the mood swings. When Zoe's blood sugar is high, she is a totally different person. SO cranky and sassy. When we are public we get "the look" from other parents... the "oh my gosh what is wrong with you and why aren't you doing anything" looks... all I can do is let her know I am sorry she feels bad. Try to make her be respectful but understand her crankiness is because she feels sick to her stomach, crampy, tired. I guess people don't know what they don't know. But still sometimes is it okay to want to give them a lecture about not being judgemental and that my kid has a chronic disease??? : /