Tuesday, September 21, 2010

Thank you for your input

Thank you to Summer and Kalee for giving me your advice.  I didn't much feedback else where but that is ok. I would have the same reaction.  "I'm suppose to tell you what your kid should take? No thanks!".

Summer, thank you for your recommendation on the Enbrel injections.  You had me change my mind for awhile there.  I know we all can only give advice or at least tell others what we have been through.  I humbly thank you for stepping up and helping me decide.  So glad I have you.  I will pray the insurance company helps you get going on the Rituxan.  Keeps us posted.

I read up on it and did a little research.  I think however, I am going to go with Tacrolimus.  It is what my gut says to do.  It is a little hard to start him on new medicine because he has since recovered from his flare.  He seems to feeling good and his energy is back.  However, the calcinosis is increasing  what seems like by the day.  A few have increased in size.  It also seems that if you can't feel it in a particular spot, keep going and you'll run into.  The inside thigh one's are the largest so far.  The folds of his arms seem to be getting a little on the active side.  They do not bother him.  He has no pain unless you grab him a certain way.  It's the whole, "you don't look sick" thing that really comes into play.  I have called in to order the prescription.  Looks like this Friday we will be starting it.  They want to take a baseline for labs.  We will have to start to labs again, it sounds, like on more than a monthly basis.

Our next infusion for IVIG is Sept 28th.  That's not far off :

star-anim.gif twinkling stars image by GeminiFerrieMake-A-Wish Foundation star-anim.gif twinkling stars image by GeminiFerrie

Base Sunshine Castle Package IV
Gary was granted a wish months ago.  It has been an ongoing project.  He wished for a Rainbow Play System.  I wished it was protected from the sun so he could play without worry. Our wish was granted.  Just before we decided break ground someone utter the word permit.   Eeeeekkkkkksss.  Scccreeeacccchhhhhh was more like.  It brought everything to a halt .  We now need permits to install this awesome sun cover that is being donated by a company in Ohio.  I mentioned it on Facebook a little.  So we have to cover the cost of the permits.  Make A Wish made it crystal clear from the beginning that they cannot be involved in any way with building permits.  Not even on a monetary level.   We are working on it.  We asked the city we lived in if they would considered waiving the fee's given the nature of the situation.  They kindly considered it, but informed us they did not have the authority to waive it.  But God is good.  It will work out ; )!

Like the great Jimmy the Cricket sings,

"When you wish upon a star, makes no difference who you are, anything your hearts desire will come to you. If your heart is in your dreams, no request is to extreme."
Through his eyes!  He is excited for his wish.
Gary in the background as the architect goes over the plans
for the sun protected cover.

star-anim.gif twinkling stars image by GeminiFerriestar-anim.gif twinkling stars image by GeminiFerriestar-anim.gif twinkling stars image by GeminiFerrie

1 comment:

  1. Ericka,
    I am glad you went with your gut and decided on the medicine you were leaning towards in the beginning!! You are his mommy and you know what is best for him and his situation! All of us with this disease is different and what works for one of us might not work for the other!! Enbrel worked well on my for awhile and now it just won't hold because my disease is blazing! I am starting Rituxan Infusion sometime in October or when the Insurance company gives the ok Ugggggggggg!! I by any means didn't wanna persuay you in either direction with the meds I was just wanting to let you know about Enbrel since I took it in case you decided to go that route! I know it always helps me to know if someone else has taken the medicine and are ok with it just like it helps me to know little Gary is on Rituxan and is doing ok with it!! I was a little apprehensive in commenting about it because I didn't want you to think by any means was I trying to persuay you in any direction I was just wanting to let ya know that the one I new about because I have taken it!

    I am so glad that you decided and I will keep him in my prayers when he starts it! New meds are always a bit scary at first believe me I know!!

    Uggg about the permit situation, I will pray about it as well and hope he will get his playset up before to long

    Summer ;)