IVIG Day Four- The Finish Line!

He has made it to day four- hasn't pulled out his IV (they have just wrapped it up every night- we call it his cast), has taken his meds every morning (Tylenol and Benadryl), and has tolerated over thirty blood pressure cuffs.  This kid is rocking this round of IVIG!

At the end of yesterday's infusion, he felt warm to me...the nurse checked his temperature and he was just over 99.  Not usually considered a fever, but my kids all run about 97 on a normal day.  The nurse paged Dr G. who called back immediately- made me feel really good about the quick correspondence.  He wasn't too concerned, but told us to call his office if his temperature went over 100.  He said at that point we would take him to the pediatrician to rule out the flu (side effects and symptoms mirror one another) to determine if we could continue treatment on Thursday. 

When we got home, after resting and pushing the fluids, we were back down to 97.  He was up to almost 99 at bedtime, but mainly slept through the night (got up once to potty and went right back to sleep). It broke my heart yesterday, though, to see him hold his head in his hands.  He never told me he had a headache, but just watching his actions indicated to me that his head was hurting.  He also kept telling me how tired he was and that he needed to take a nap. 

No fever this AM; started his treatment and is happy as can be.

 out my cast!

This is the final day of his first race...1 month down, 2 to go.

When I first started writing, I compared Hunter's diagnosis day to one of my passions, competing in triathlons.  Here's an excerpt:

"In a half-ironman training program, five months of practice and discipline prepare you for the final day.  Race day for Hunter meant his Autism Evaluation.  Just like a triathlon, you picture the race, you rehearse the pep-talk, you envision the end.  However, as many times as I told myself I would hear the words, “Your son has Autism,” it still didn’t quite prepare me like I thought.  Envisioning the end of a race typically involves a celebration of some sort.  That day, there was no celebration.  There was no medal, no group hug, no high fives.

Instead, we were left with the journey....to heal our son."

Today, we do celebrate. 

We celebrate the completion of Heat #1. 
We celebrate the staff who has been supportive and caring.
We celebrate the insurance personnel who have made this race possible.
We celebrate our friends and family who have cheered him on along the way...your love has shown brightly.
We celebrate the sunshine and the indication of brighter days ahead.
We celebrate the glory of God...for with him, "All things are possible."

This morning, as we were pulling into the Children's lot, I asked him, "Hunter, is it a cloudy day or a sunny day?"

"It's a sunny day.  Mommy, is there a rainbow?"

Surprised, I asked him, "What did you say??"

"I asked you if there is a rainbow.  Because after the sun comes out, we see a rainbow."

We do, my love.

We may have a few long weeks in front of us...with the "takeover" that is about to occur in his little body, he is going to have to put up a fight.  Those new antibodies need to dominate, and we could see some negative behaviors emerge during the battle. 

bought me this "Faith over Fear" T-shirt

Our neuroimmunologist told us not to expect results with the first infusion.  That is why he wanted us to be all in for three months, because one month might not be enough to demonstrate a change. 

I can do anything for a month.  I can do anything for three months. 



FAITH OVER FEAR.

We have come this far to not come in second...

We need a check mark in the win column.

Victory sounds so sweet.

First the "rage," fighting face...and a sweet smile before his victory lap this morning.