PHASE 3 IVIG: Round 11
We have a kindergarten graduate! Both Peter and I had many emotions last Friday morning, seeing him off to school on his last day as a kindergartner. What a difference a year makes!
Yesterday, we started IVIG #11, in our third phase. We had to wait on orders for two hours that morning, and even though my little patient and his brother were getting restless, he took his pre-meds with little complaint and the IV insertion was quick and only a slight struggle.
I know this sounds crazy, but I brought home a different child than I had brought in.
Three months is the longest he has gone without IVIG in over a year and a half, and we could see him starting to slip. With the end of the school year and inconsistencies in routines, it was hard to know if it was the lack of IVIG or just the anxiety of the changes that were about to take place. He was a little short-tempered, we had a few instances of door slamming, but then the next day he would wake with a smile and seem back to his old (new) self.
Yesterday afternoon, though, my old (new) Hunter was back- so many smiles, hugs, direct eye contact, intelligent questions and answers. I love this kid no matter what- but the love is so much more amazing when he reciprocates physically and emotionally.
This morning I came back from a quick workout, and I asked Peter how he was doing. "Awesome." The boys had run to the kitchen table and the usual race that turns into a small argument ended with Hunter saying, "Peyton- why don't we turn the light on together?" He wanted to leave for the hospital as soon as I walked in the door- and for a moment I thought, can he tell he feels different?
I listened to Paige and Hunter play on the exercise ball together, laughing, playing pretend doggies...and I couldn't help smiling in thanksgiving.
Paige has her annual soccer swim party tonight, and a friend asked if we were all going this year. I told her it was funny what details a person can recall...last year, at this soccer party, she told me, "Hunter has talked to me more than he ever has and his eye contact is so good!"
We had just finished phase one of IVIG.
And here we are, now in phase three, 8 IVIG's later.
We have kept careful data these last three months. I have a folder created for classwork, fine motor/handwriting samples, and I asked our in home ABA therapists to not increase workload and to avoid any new variables during this three month period. I want to know if we can rely on this spacing, and if we have made progress since the last IVIG treatment.
I'm pretty sure we will have an upward graph, showing not only his improvement and compliance, but our belief in the treatment we have chosen.
On that rising graph, I could also add faith, perseverance, hope, love, unity, and grace.
Pray for our little man this week.
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
 |
| first day of school |
Yesterday, we started IVIG #11, in our third phase. We had to wait on orders for two hours that morning, and even though my little patient and his brother were getting restless, he took his pre-meds with little complaint and the IV insertion was quick and only a slight struggle.
I know this sounds crazy, but I brought home a different child than I had brought in.
Three months is the longest he has gone without IVIG in over a year and a half, and we could see him starting to slip. With the end of the school year and inconsistencies in routines, it was hard to know if it was the lack of IVIG or just the anxiety of the changes that were about to take place. He was a little short-tempered, we had a few instances of door slamming, but then the next day he would wake with a smile and seem back to his old (new) self.
Yesterday afternoon, though, my old (new) Hunter was back- so many smiles, hugs, direct eye contact, intelligent questions and answers. I love this kid no matter what- but the love is so much more amazing when he reciprocates physically and emotionally.
This morning I came back from a quick workout, and I asked Peter how he was doing. "Awesome." The boys had run to the kitchen table and the usual race that turns into a small argument ended with Hunter saying, "Peyton- why don't we turn the light on together?" He wanted to leave for the hospital as soon as I walked in the door- and for a moment I thought, can he tell he feels different?
I listened to Paige and Hunter play on the exercise ball together, laughing, playing pretend doggies...and I couldn't help smiling in thanksgiving.
Paige has her annual soccer swim party tonight, and a friend asked if we were all going this year. I told her it was funny what details a person can recall...last year, at this soccer party, she told me, "Hunter has talked to me more than he ever has and his eye contact is so good!"
We had just finished phase one of IVIG.
And here we are, now in phase three, 8 IVIG's later.
We have kept careful data these last three months. I have a folder created for classwork, fine motor/handwriting samples, and I asked our in home ABA therapists to not increase workload and to avoid any new variables during this three month period. I want to know if we can rely on this spacing, and if we have made progress since the last IVIG treatment.
I'm pretty sure we will have an upward graph, showing not only his improvement and compliance, but our belief in the treatment we have chosen.
On that rising graph, I could also add faith, perseverance, hope, love, unity, and grace.
Pray for our little man this week.
And if you want a good cry, and your kids or grandkids just finished a year of their schooling, listen to the song I heard on the way to work the last day of school for our kids.
Find Your Wings
By Mark Harris
It's only for a moment you are mine to hold
The plans that heaven has for you
Will all too soon unfold
So many different prayers I'll pray
For all that you might do
But most of all I'll want to know
You're walking in the truth
And If I never told you
I want you to know
As I watch you grow
The plans that heaven has for you
Will all too soon unfold
So many different prayers I'll pray
For all that you might do
But most of all I'll want to know
You're walking in the truth
And If I never told you
I want you to know
As I watch you grow
[Chorus]
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
May passion be the wind
That leads you through your days
And may conviction keep you strong
Guide you on your way
May there be many moments
That make your life so sweet
Oh, but more than memories
That leads you through your days
And may conviction keep you strong
Guide you on your way
May there be many moments
That make your life so sweet
Oh, but more than memories
[Chorus]
It's not living if you don't reach for the sky
I'll have tears as you take off
But I'll cheer as you fly
I'll have tears as you take off
But I'll cheer as you fly
[Chorus]
I pray that God would fill your heart with dreams
And that faith gives you the courage
To dare to do great things
I'm here for you whatever this life brings
So let my love give you roots
And help you find your wings
Songwriters: HARRIS, MARK R. / WOOD, TONY W.
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