Thursday, May 17, 2012

Can't Keep Him Down

It's hard to keep a five year old down.  I know that is a good thing, but still.

Gary had a quick steroid pulse yesterday.  It was methotrexate day as well.  So instead of an injection, they just put it through his IV to spare a poke.  Whenever they get a good vein, he can taste everything they push through the IV.  We went to the park after the infusion.  (Get him out, change it up, make him feel better).  The whole time he kept gagging.  He'd be playing on the slide, make a random sound like lunch was on its way back up.  I kept asking him if he wanted to go.  NO.  Finally I convinced him by telling him I was going home, he could stay at some random park by himself.   He took a long nap on the way home.  The nap continued to the couch.  He was miserable when he woke up.  He couldn't stand without getting light headed which was making him beyond mad.   I gave him tylenol, zofran, he was out the door.  He was very emotional and not feeling well.  I guess this surprised me because he has felt a lot better getting a lot more and longer of an infusion before.  I was wondering if maybe the methotrexate being put right into his blood stream verses being injected made a difference.

Distraction technique number one:  combining baking soda and vinegar in a bottle which was neat for oh, thirty seconds.  We decided to take him to the lake for a distraction.  The weather has been nice but cool weather was rolling in.  At 8:30 pm, there he was, sitting in the freezing cold water in the lake, refusing to get out.  He cried and said he found a warm spot, it felt so good.  We live in WA,  temps are still very cool, even the air.  I find myself getting frustrated because as a mother, who in there right mind who let there healthy five year old soak in a cold lake as the sun goes down.  Oh but there is me.  I told him FINE, freeze your butt off then!  His color went from wispy cloud to eggshell white.  (Yes, that is the color of wall paints but work with me here, trying to give you a good description).  Don't need to judge.  I am too busy judging myself.

 I do get his elbows and knees are starting to bother him here and there.  The calcium deposits did shrink with recent treatments, but his elbows look larger to me.    It could be from the steroid weight but it doesn't look like it.  They seem more solid.  He has even randomly complained about feeling a pinching.

It is amazing how the steroids work fast.  His walk and strength will quickly improve, even later that day.  We are working hard with physical therapy to try and get him as ready for Kindergarden as we can.  Next week we have our big infusion.  Cytoxan, Pamidronate, steroid pulse, and the return of IVIG.  Should be interesting.  Our physical therapist mention she may try and get him some pool time.  Hopefully we can do this before he is admitted.  He would really love that.  We are under orders to stretch.   Lots of stretching.  She stretched him out on Tuesday.  He was crying it hurt.  But after she was done, there was a difference in his gait.  

I still worry a little.  At the end of the day he will walk in looking as if his body is using everything it has to make those legs go.  We definitely see good days, and we also see days where he acts like he is too tired to talk.  JDM has a war on its hands!   Come on meds, keep punching for him.

1 comment:

  1. Kiddos are so resilent..I think steroids make us with JM/DM even more so! I know it's crazy how fast a steroid pulse will get me wanting to lift the house and clean underneath it if only I had the strength to do so! He is such a trooper, you had me laughing at the whole pond thing, girlie,you ARE A ROCKSTAR MOMMA who will do ANYTHING to make him HAPPY and girlie I would do the same thing...if it would make Kelcee happy and she was sick and wanted to get in that pond then by golly lets swim lol! I'm sorry Gary and you are going through so much, not a day goes by that I don't think of and pray for you guys! YOu have a special place in my heart, not in a wierd way, lol!