Monday, March 14, 2011

Wednesday Clinic Appointment

We have an appointment this Wednesday.  Gary is doing really good.  The Rituxan treatment he had in December seems to be kicking in nicely.  I assume this Wednesday we will try and continue the steroid taper.  We are only on 1ml as it is but I approve tapering completely off.  Gary's toes are still crossing but we will have that checked out on Wednesday.  He constantly complains of his ankle hurting.  However, he runs, jumps, and plays on it with no problem, except for "owe" my ankle hurts.  Dr. Mom, (thats me) is a little suspicious with the crossing toes and ankle pain.  He also has the occasional knee pain.  As far as disease activity, I am pleased.  But I think the pain, funny looking toes, funny looking ankles and knees make me think calcinosis.  I am hoping it is not played off or ignored on Wednesday.  I need to be on my Mom game.  I would like him to be evaluated for............ummmm.......I DONT KNOW JUST FIX IT.   Ha ha  think I have been feeling that way for almost 2 years now.  If it is calcinosis in his joints, I am not sure they can do anything for him.  I just hope it doesn't get debilitating effecting the way he walks.  At this point we are far from that.  He runs runs and runs just fine.  It's mostly when he is standing and goes to make a small shift in weight he says, "owe my ankle".  The other day he came over to me and said, "pop! and pointed to his ankle."    It could be something is tight, and alls we need is a little physical therapy.  Hopefully we will get answers or recommendations on Wednesday.  I made sure as soon as pay day hit,  we went right to Nordstroms and bought him a pair on good shoes.  I didn't care how much they were going to be.  I have always been fond of the Stride Rites for toddlers so we got him a pair of those.  They have plenty of room in toe box.

Good news I think in that part of his world.  It has not increased in size.  He did get a few new ones in his bottom area and on the back of his knees, but other than that the other sites of calcinosis have not changed.  They one on his arm has significantly decreased in sized and the inflammation around it is gone.  I was very happy about that.  I thought for sure that it was going to burst through is skin.  It's encouraging.

So he does have a few cavities : (  But they are shallow.  He did an excellent job at the dentist.  Surprisingly cooperative!  They are going to fill the cavities at the end of the month.  Give him a little gas and see if we can take care of those without having to drill to deep.


It's happening.  It's finally happening.  Our family is so excited.  Gary is so excited.  In a few short weeks, Gary will be happily playing on his sun safe Rainbow Play System!  I will be inviting the world to his dedication party in April!   The volunteers are amazing!  They worked all Saturday in the rain.  Our Make-A-Wish Go-To Gal was there the entire day.  She brought donuts and sandwhiches, even fed our family.  I pray God Blesses these people 10 fold!  They deserve it.  I will keep everyone posted.  We have to pass a few inspections this week.  Then they are going to pour cement.  My backyard is a crazy muddy mess right now, but it is all good.  : )  No complaints here.
Gary was woken up early to find something magical happening in his backyard!

Make a wish my baby!

Gary has a birthday coming up.  March 21, he will be four.  Wooops, I think I accidentally BLINKED!  He already received a gift.  His Uncle Ray and Aunt Amy signed him up for is first ever T-Ball Baseball team.  He literally glows from the inside when it is mentioned.  You can actually see heavens light surround his body in excitement when he says, "my team Mom?".   Absolute beauty!  In honor of baseball season I changed his blog to baseball.  His big brother McGuire is also playing on the team his Daddy is coaching.  Elexis will be doing cheer leading as well.  Single income.  Gulp.  God is good and he knows what we need : ).   . .   .

1 comment:

  1. Oh Ericka I am crying tears of joy that finally the wish is set and coming true!! This is awesome, I love the pic of little Gary running towards that bobcat in the backyard! He is so deserving of this and I can't think of anyone that deserves this more and to think he will be able to play like a normal kid without the sun on him makes me cry tears of joy! I hate this disease so much and to see good come out of it and to hear he is doing well makes me all warm and fuzzy inside! I am having such a hard time with this disease right now it is going blazing crazy but I hope how soon they can get it under control.

    My foot often hurts from DM and I got a really good pair of shoes and it does help, you know that popping sound he mentioned could be the joint popping mine does that and you can actually hear it it's from the disease so maybe that is what he is talking about.

    I hope they give you some answers from his toes it is so frustrating when they buzz passed it when you want them to fix it....uggggg I feel ya on that one...hey you are already on your mommy game you are the bestest at it....

    I love the baseball theme, yay for baseball, I just signed Kelcee back up for soccer today which is so exciting to us!!

    Love ya girl