Friday, October 29, 2010


I have spent the past two days on 1-405.  Every time you make a turn there was an accident.  It was maddening. I had the urge to go on a family road trip.  A get a way with the family of sorts.  We have all been in a bad mood for some reason.  Yeah, well, my urge was cured over these past two days of sitting in the car with Gary.  Screaming and kicking the back of my seat.  I am not a nice person when returning home.  Everyone runs and hides.  When the door swings open to my house and step through the door, light flashes, and thunder rumbles.

The appointment went fine.  The doctor like the drug combination we are on and has a good feeling about it.  I was honest and said I didn't agree just yet.  Gary had fallen asleep on the way there.  He woke up with hot, itchy, red skin.  His cheeks looked like we had just come in from the sun all day.  His finger were red and inflamed.  I was not happy that he was doing that, but glad the doctor could see it first hand.  In the back of my mind I was expecting to fight off more tapering.  Meaning I was waiting for her to say, lets go down on the steroid again.  But she didn't.  I was able to tell her though that is why I called from the infusion center yesterday to have the Rituxan levels checked.  She said it was much too soon. I figured but needed to cover all the bases. Really, Gary isn't doing bad.  BUT its the same old same old.  I can tell his disease is really angry about all this immune suppression and drugs it is trying to be stopped with.  As always, metaphorically speaking, we are throwing dirt on a big bon fire that refuses to go out.  It's smoking and hot in the middle.   When she asked me what I thought, I grabbed my head and said, "you know, I want to give the Tacrolimus more time.  I don't like the fact he is doing what we did in the beginning.  The sudden onset of red, crazy, itchy skin and swelling."   I continued to explain that I know we have come a long way, but I am not sure.  The only time I was so excited was a couple months ago just after he had his first dose of Rituxan.  That was short lived.  But its hard work.  Only time will tell.  It's a fun thing to sit on.

We chatted about Gary's rage.  She said and I quote, "He has been through a whole LOT. A LOT"  She was sympathetic and suggest we get a punching bag to channel his aggression.  Hmmmm.  I like that.  It's worth a try. Gary, your sisters nose, NO, punching bag, yes.  Don't get me wrong.  I don't mean to paint him out to be a monster.  He is very very sweet.  But he is three and has unpredictable actions occasionally.  But Hey, don't we all.  We also talked about the Child Life Specialist.  We are going to try giving him some Adavant for next months infusion.  It helps him chill and will take the edge off.  I don't want to give him another drug of any kind, but I don't want him to be an axe murdererererer either.   So.
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We then talked more about the calcinosis.  The only thing I can do about that is make sure she feels it and is monitoring it.  I told her it is unnerving for me to feel the calcinosis, especially on the inside of his thigh were it is much bigger and feels bigger and meaner than around his chest and throat.  I maintain as long as it stays where it is.

We had a med change.  One for the itchy skin.  Trying a different one to see if it helps.  My favorite was, "itchy can be caused by anything."  TRUE.  But not AS MUCH when you have JDM.

Hook, Jab, Bob.  Keep fighting!

Wednesday, October 27, 2010

October's Infusion

Wow does that four weeks between infusions go fast.  It started yesterday with the Teddy Bear.  I got a call from the Child Life Specialists letting us know she was going to meet us here.  She asked if we had been doing any medical roll play.  Inserting a fake IV into a teddy bear's hand.  I told her no because I don't want to remind Gary until it is necessary.  There is no reason to bring it up mid month.  I mean I could, we just deal with enough with the medicines.  So yesterday we spent the day putting in Teddy's iv.  Did it make a difference.  Not getting here.  It didn't stop the tears.  I practically had to drag him this morning.  My hands are full so it hard because he likes me to carry him.  He gets in front of me and puts his hands up to stop me from walking in.  He stayed outside.  He wouldn't come in.  I dropped everything I was carrying to go out and get him to bring him in.  Big Aligator tears.  Childrens is usually very quick.  Luckily today they were.  I have been practicing distraction technique with him which seems to work very well right now.  A cool toy, fun bubbles, whatever it takes.  It is amazing how many people step in when the IV is about to be inserted.  This time Gary sat on my lap facing me so we were face to face.  It worked very well.  He still cryed but was again distracted with our faces in each others. The Child Life Specialist got his attention a few times with play dough.  Our neighbor (another parent) blew bubbles, those ones that don't pop right away.  He liked those.  So we will keep working the distraction technique. Once he gets bigger I want to get him a pair of those virtual glasses you can play a movie in.  I had posted about those before. 

*Thank you to the nurse who suggested he be Buzz Light Year for halloween.  It worked well, it really did.  but I don't have Buzz Light Year in my arsenal of costumes.  LOL  I looked at her and in a joking manner said, "what do you think your doing".  We laughed.  Such wonderful people.

So the IV is in and he is sleeping.  I asked about running labs to see if his body is making the b-cells that are responsible for inflammation that were killed by the Rituxan.  I asked for this because of the intense itching and skin activity.  The nurse was awesome about it.  She got Rheumatology on the phone.  Of course I got the new fellow.  He asked what was going on.  He is very sympathetic and said sorry we were still having trouble.  I told him my concerns were minor but warranted.  It was very nice because the last fellow was very non chalant about my concerns which got to be frustrating.  I can tell this one is knew but at least he talks it out with me all the while keeping in mind I am a Mommie.  I am not sure he fully understood what I was asking for.  I am sure he understood but he needed to hear himself talk it out.  Today labs came back pretty darn good.  But the one thing I have learned from the past is that labs don't always follow what Gary has going on.  Overall Gary is good.  Small things bother me.  Very irritable and itchy evidence of vasculitis. Tomorrow we come back for a clinic appointment to discuss.  I venture to guess we will sit on this and give the tacrolimus more time to work.
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Thursday, October 14, 2010

Hi Ya!

Just wanted to pop in on Gary's blog and update.
Gary is doing good.  We take it day by day.  Gary is getting taller.  He is growing into a boy.  He is getting funnier and funnier as his vocabulary improves.  We have a power struggle going on in the house.  Gary verses the rest of the family.  His siblings have been getting frustrated with the little man getting his own way on just about anything.   Hmmmm.  Working on it.

Big brother McGuire heads off to camp tomorrow.  I am a little nervous but have so much going on right now I am sorting thru the wonderful emotions of life right now.  I went to my running coach certification class this weekend.  I felt like a big girl!  Back in college, on my own.  It was fun.  My wonderful, marvelous, incredible, amazing sister and her husband took the kids for the weekend.  Daddy had to work.  I left at 430 on Friday morning.  Gary had been tossing and turning all night.  He kept doing this weird swallowing thing.  He had been doing it on Thursday as well.  A few times I accused him of stealing candy!   That he was sucking on it and swallowing, trying to pry it out of his mouth.  Nothing.    Wooopsss.  Mom of the Year right here!  I woke my sister up to let her know to keep an eye on him (we were at her house).  She text me a thought on my way out.  The text said, "don't respond to this, don't text and drive, but we had a thought about the swallowing.  Calcinosis in his throat triggering his swallow reflex."   Uggghhhh.  It is completely possible.  He has an abundance of calcinosis in his neck.  Months in, when he was first diagnosed, swallowing and the muscles involved with swallowing were weakened requiring an NG tube.  After muscles have been weakened and damaged, it is thought that calcinosis is what happens in place of that damage.  That is how I understand it.  So it is very possible.  The other possibility, he has a  little post nasal drip that I can't see.  So keeping an eye on it is what is best.  If he shows any signs of distress then I will have it checked out.  He has been great since then.  But I really thought of turning that car around, and blowing off my class, because my kids come first.  During class, we discussed a lot the process of exercise and how our muscle kick out lactate ect,.  It actually made me teary eyed hearing and reviewing how our bodies work.  I had to do my best to not dwell on the fact that my sons body does this on it own to damage his muscle in an unnatural fashion.  It was ridiculous.  I had to bite my lip a couple times and tell myself to focus.  I wasn't going to let this disease in on my passion.  My passion for running and helping people with running.  It is funny how my precious sons disease can walk up from behind me as if on a sneak attack and shove me down like a bully on the playground.