Friday, July 23, 2010

Trying to let it not get me.....

It would be the taper. We are in the second week of the Great Taper. We went down from 2.0ml to 1.5ml's today.  Suddenly anxiety is kind of nudging me.  We went to the mall.  Did one lap around.  He asked me to pick him up by the time we got around, which may be normal for any three year old but he isn't all that normal.  He let his body relax as I carried him out to the car.  It didn't feel right to me.  His sudden lack of energy.  I quickly played back in my head the medicine I had given him hours before.  Did a mess up and give him a hydroxzine which is like benadryl.  No.  No, I am positive I didn't do that.  He slept on the way home and is still sleeping.  So we will just wait it out.  I am sure he is fine.  I just don't want to let the possible in.  Now if he keeps me up tonight because of this long nap, well then, it will be a long night.  I never deter naps.  Sleeping is good.  He has been having trouble sleeping lately.  Lack of sleep could be catching him.  He has been a tiny bit redder than last week.

Crossing that bridge over the river of prednisone.
 bigstock_Bridge_1699524rainfores-1.jpg Forest image by PinkMusic16
Holding on tight.


  1. Oh girl crossing that bridge over the river of prednisone is def a crazy ride and you had to hold on tight! It seems once my body gets to a certain level of prednisone during the great taper I start getting weaker, redder, and flare signs but I am an adult and they don't even have me in medical remission body right now isn't able to handle the great taper, although we try and try again, you are a great mom to be keeping a look out for these signs and if they keep up def call the doctor and they may have you go back up on the predizone a little and than try the taper again or it could totally be like you said and Gary just be exhausted....that is great of you to keep such a watchful eye on it....

    Hang in there sweetie and hold on tight....


    P.S. ooooh I never thought about getting an Edward tattoo...hmmmmmmmmmm thats a thought LOL


  2. Oh girl! I am totally praying for you. I think that was the hardest taper we had. I remember Kya being like that. I would even call and tell them. I think we need to check her levels. I can tell by how she is acting that they are going back up. So they would and they would be a little high so they would give her an infusion. They would decrease the orals and increase the frequency of the infusions. But, Kya responded better to the infusions. Gradually they spread them out also. I could see the decrease in energy like before, but her levels wouldn't be up out of the normal range. Elevated a little more than with the frequent infusions but still normal. Gradually we worked through it and it was wonderful. They kind of have that down period while there little bodies have to make the levels on their own. It is so strange. I remember it in Kya very vividly and of course I made them draw blood everytime I could see it happening just to double check! I am sure they ar so ready to get rid of me! They love Kya, but I know they cringe when they see my number pop up on caller ID.

    You are amazing and Gary is a tough little boy. He will do great with the taper. By the way, if he has had the insomnia from the steroids that seems to go away pretty quickly with the taper and they sleep a lot more. Which is very nice, but makes us as moms very nervous since it can be a sign of a flare! That happened with Kya also.

    Hang in there! Go mama tiger!!!

  3. Hi Erika, I just read the last entry and was wondering how little man is doing? Stay strong my friend and may God continue to bless you with the energy you have to fight this disease and get the attention that it needs. Hope the voting is making a difference and I would love to go to your next run. Hugs from MaMa Bear xoxo