Slipping...we need you, prayer warriors
I think I started to forget what it was like to have a child with an Autism Spectrum Disorder.
You know, the kiddo who throws tantrums in the middle of the store.
The one who disrespects authority.
The one who wakes at early hours looking for electronics.
The one who screams when you cheer for their siblings at sporting events.
The one who scowls more than he smiles.
Basically, the child who just makes everything complicated.
As much as I love Hunter, life is just plain complicated right now.
We haven't had one "purple" day since coming back from Christmas break, after a virus, strep exposure, and transition from the holiday. You could argue it was the 2 week vacation, he had trouble readjusting...but he ran into school that first day back in January, skipping and smiling. He was excited to be back.
His teachers started to email indicating he had less tolerance for people. He was possessive of the swings on the playground. He hit the computer on multiple occasions when he wasn't allowed to be the first one to use them. He has broken rule number 5 more times than I can count. He is pulling away from peers, and yelling at his only "friends."
He is slipping.
Inflammation is a confusing thing, as I have stated before. Even in the midst of his hardest days, I see glimpses of my sweet boy in there. Last night, as we were debriefing from a very rough day (he had a tantrum at dismissal, threw his backpack, and a poor kindergartner tripped over it and hurt his hand), I told him that I loved him and I forgave him.
"Oh, thank you. Finally!"
It wasn't a storyline, not from a movie...just a normal, funny response created in his little mind. He seemed truly thankful that he could get it off his conscience.
And for the finale of frustration in all of this chaos..
we are still awaiting approval for IVIG #15 that is supposed to occur on Monday morning.
That leaves us two working days for an automatic approval, without sending it to the appeal process.
Nothing short of a miracle.
Despite our advocacy and the start of the process in November, here we sit, Feb. 3rd, with NO approval or denial.
And unfortunately, the majority of IVIV requests go to appeal, due to the cost. So even if we get a decision tomorrow, we will most likely have to wait 30-60 days for it to be potentially overturned.
We met with Dr. G this past Friday, and we gave him detailed emails, notes, and observations from the past few months. I told him I was actually happy that this little regression had taken place, so we could truly see if he comes back from the next IVIG as the Hunter that we had started to recover.
And now we might not be given the chance.
Please, prayer warriors, pray for the medical director reviewing our case to decide with his heart, not his book of procedures. Let him see with all of the medical data and clinical notes that IVIG has essentially saved us from living the life of constant non-compliance. Let him realize that his brain is on fire, and he needs some relief...
for his education.
for his social development.
for his family life.
and for his self-worth.
I asked him the other night if he wanted to go to IVIG. "OH, yes m'amm!"
"Why, Hunter?"
"Because it makes me feel good."
Two years ago, exactly to the date, we received the phone call that his meds were shipping for his first IVIG. I remember sitting on the bench outside his preschool room, as he raged and refused to go into class, sobbing in thanksgiving.
We had been given a chance of a lifetime.
We need that same chance now.
https://youtu.be/9ylnx0NA9X4
"Need You Now (How Many Times)" by Plumb
You know, the kiddo who throws tantrums in the middle of the store.
The one who disrespects authority.
The one who wakes at early hours looking for electronics.
The one who screams when you cheer for their siblings at sporting events.
The one who scowls more than he smiles.
Basically, the child who just makes everything complicated.
As much as I love Hunter, life is just plain complicated right now.
We haven't had one "purple" day since coming back from Christmas break, after a virus, strep exposure, and transition from the holiday. You could argue it was the 2 week vacation, he had trouble readjusting...but he ran into school that first day back in January, skipping and smiling. He was excited to be back.
His teachers started to email indicating he had less tolerance for people. He was possessive of the swings on the playground. He hit the computer on multiple occasions when he wasn't allowed to be the first one to use them. He has broken rule number 5 more times than I can count. He is pulling away from peers, and yelling at his only "friends."
He is slipping.
Inflammation is a confusing thing, as I have stated before. Even in the midst of his hardest days, I see glimpses of my sweet boy in there. Last night, as we were debriefing from a very rough day (he had a tantrum at dismissal, threw his backpack, and a poor kindergartner tripped over it and hurt his hand), I told him that I loved him and I forgave him.
"Oh, thank you. Finally!"
It wasn't a storyline, not from a movie...just a normal, funny response created in his little mind. He seemed truly thankful that he could get it off his conscience.
And for the finale of frustration in all of this chaos..
we are still awaiting approval for IVIG #15 that is supposed to occur on Monday morning.
That leaves us two working days for an automatic approval, without sending it to the appeal process.
Nothing short of a miracle.
Despite our advocacy and the start of the process in November, here we sit, Feb. 3rd, with NO approval or denial.
And unfortunately, the majority of IVIV requests go to appeal, due to the cost. So even if we get a decision tomorrow, we will most likely have to wait 30-60 days for it to be potentially overturned.
We met with Dr. G this past Friday, and we gave him detailed emails, notes, and observations from the past few months. I told him I was actually happy that this little regression had taken place, so we could truly see if he comes back from the next IVIG as the Hunter that we had started to recover.
And now we might not be given the chance.
Please, prayer warriors, pray for the medical director reviewing our case to decide with his heart, not his book of procedures. Let him see with all of the medical data and clinical notes that IVIG has essentially saved us from living the life of constant non-compliance. Let him realize that his brain is on fire, and he needs some relief...
for his education.
for his social development.
for his family life.
and for his self-worth.
I asked him the other night if he wanted to go to IVIG. "OH, yes m'amm!"
"Why, Hunter?"
"Because it makes me feel good."
Two years ago, exactly to the date, we received the phone call that his meds were shipping for his first IVIG. I remember sitting on the bench outside his preschool room, as he raged and refused to go into class, sobbing in thanksgiving.
We had been given a chance of a lifetime.
We need that same chance now.
https://youtu.be/9ylnx0NA9X4
"Need You Now (How Many Times)" by Plumb
Well, everybody's got a story to tell
And everybody's got a wound to be healed
I want to believe there's beauty here
'Cause oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here
And everybody's got a wound to be healed
I want to believe there's beauty here
'Cause oh, I get so tired of holding on
I can't let go, I can't move on
I want to believe there's meaning here
How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
Standing on a road I didn't plan
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise
Wondering how I got to where I am
I'm trying to hear that still small voice
I'm trying to hear above the noise
How many times have you heard me cry out
God please take this?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
God please take this?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
Though I walk,
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take
Though I walk through the shadows
And I, I am so afraid
Please stay, please stay right beside me
With every single step I take
How many times have you heard me cry out?
And how many times have you given me strength?
And how many times have you given me strength?
How many times have you heard me cry out
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
"God please take this"?
How many times have you given me strength to
Just keep breathing?
Oh I need you
God, I need you now.
I need you now
Oh I need you
God, I need you now.
I need you now
I need you now
Oh I need you
God, I need you now.
I need you now
I need you now
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