finally...IVIG APPROVED!!!!!!!!!!!!
can't believe it. still pinching myself.
three years of fighting, searching, hoping, praying, giving everything to reach this moment...
...and we got the phone call.
Peter's company overrided the insurance protocol to approve IVIG for a three month trial period.
We were on speaker when they told us the news and we both had wet eyes as we heard the words "approval" and "override"...
they said yes.
We just hugged each other tight as we hung up the phone, and I sobbed tears of joy, relief, disbelief...so many times throughout this journey I have wanted someone to tell us a simple "yes."
One word that can ultimately change his life and give him the second chance at a carefree childhood.
They said yes.
Before I turn my thoughts to the actual procedure and the risks/worries involved with IVIG, I have to live in the moment and know that this is His plan.
As Peter and I sat on the bed, those thoughts came spilling out of my mouth. What is this isn't what we are supposed to do? What if he has a reaction? What if it doesn't work?? What if???
I dried my eyes and walked out of the room to Paige, who handed me a drawing. "Mommy, I drew this for you while you were on the phone."
Of course, it's an Arch. A beautiful, reassuring Arch (for those of you not familiar with previous posts, my husband lost his best friend a few years ago, and we called him "Arch." He has been our guardian angel throughout this journey). My mom had sent me a reply text just a moment before that said, "Sometimes you just have to ride out the storm...before the solution appears."
That rainbow, the same arch that has come out time and time again when I am questioning the path we are walking, was right there in front of me...telling me the storm has passed and it is time to enjoy the sunshine.
An Arch to remind us of our many blessings and reassurance of brighter days ahead.
If we needed another sign, Peter pulled over the next morning and texted me a picture of his odometer-
It's not a picture to show you how old our car is...Our friend, Arch, ,always said "One" or "one love."....and here are enough ones to tell us everything is going to be ok.
*******************************
Fast forward to today, Thursday. I wrote the above exactly a week ago today. I couldn't post it until I knew every decision was finalized. This morning, our therapist was running late due to snow in the area. I had to wait until she arrived, for Hunter had such a bad day yesterday at school. I watched him play with the toys in the class, do independent work with his teacher, and he saw me sitting in the hallway. He walked over to me and said, "Mommy, why are you still here?" He went right back
in, sat down, and completed his work. As I sat there watching him, smiling at this animated, loving little boy, the pharmacy and insurance company called me and told me they were going to ship his medication out today, after they received my approval for the co-pay. One more phone call from the pharmacist herself and everything would be finalized.
His therapist arrived and I left, crying tears of joy, relief, anxiety, any emotion that we have encountered on the roller coaster over the past few years.
I started to drive in the snow, and made a gut decision to turn around after seeing spin outs ahead of me. I came home and spoke with the hospital and confirmed his appointments for next week, starting Monday at 8:30.
I then received the final phone call from the pharmacist, verifying drug allergies, height and weight. "OK! We will ship this medication immediately!"
I couldn't have worked this morning. I wouldn't have been able to leave my sessions to answer several phone calls and complete the final round of details. But of course, God had other plans. The snow that was supposed to start at 4 AM started late, and has continued longer than expected. I look outside at this beautiful blanket of white snow and realize...
everything has a plan, a purpose, and above all...
a reason.
I want to believe that we have been down this road for a much bigger reason...and I can't explain how hard I am praying right now that this is our answer to recovery .
We have made it to the moment we have been waiting so long for.
We have had great challenges, but we have had greater faith. We have danced in the rain and even weathered the storm, but now the rain (or snow!) will stop falling and our rainbow will fill the sky.
All morning, this song has been running through my head...one of those times when you can't quite think of the words, but the melody remains...I remembered a few lyrics, and typed it into you tube...
the song running through my head is called, "Healing is in your Hands." Dear God, I have never needed you more than I need you right now. Please give us faith and confidence in our doctors, our decision, and Your word. Heal our son with Your hands.
http://www.youtube.com/watch?v=-qplaJEJJFk
Verse 1:
No mountain, no valley,
no gain or loss we know
could keep us from Your love
No sickness, no secret,
no chain is strong enough
to keep us from Your love
to keep us from Your love
Chorus:
How high, how wide
No matter where I am, healing is in Your hands
How deep, How strong,
And now by Your grace I stand, healing is in Your hands
Verse 2:
Our present, our future, our past is in Your hands
We're covered by Your blood
We're covered by Your blood
Chorus:
How high, How wide
no matter where I am, healing is in Your hands
How deep, How strong
And now by Your grace I stand, healing is in Your hands
Bridge:
In all things, we know that.
We are more than conquerors.
You keep us by your love.
You keep us by your love.
three years of fighting, searching, hoping, praying, giving everything to reach this moment...
...and we got the phone call.
Peter's company overrided the insurance protocol to approve IVIG for a three month trial period.
We were on speaker when they told us the news and we both had wet eyes as we heard the words "approval" and "override"...
they said yes.
We just hugged each other tight as we hung up the phone, and I sobbed tears of joy, relief, disbelief...so many times throughout this journey I have wanted someone to tell us a simple "yes."
One word that can ultimately change his life and give him the second chance at a carefree childhood.
They said yes.
Before I turn my thoughts to the actual procedure and the risks/worries involved with IVIG, I have to live in the moment and know that this is His plan.
As Peter and I sat on the bed, those thoughts came spilling out of my mouth. What is this isn't what we are supposed to do? What if he has a reaction? What if it doesn't work?? What if???
I dried my eyes and walked out of the room to Paige, who handed me a drawing. "Mommy, I drew this for you while you were on the phone."
Of course, it's an Arch. A beautiful, reassuring Arch (for those of you not familiar with previous posts, my husband lost his best friend a few years ago, and we called him "Arch." He has been our guardian angel throughout this journey). My mom had sent me a reply text just a moment before that said, "Sometimes you just have to ride out the storm...before the solution appears."
That rainbow, the same arch that has come out time and time again when I am questioning the path we are walking, was right there in front of me...telling me the storm has passed and it is time to enjoy the sunshine.
An Arch to remind us of our many blessings and reassurance of brighter days ahead.
If we needed another sign, Peter pulled over the next morning and texted me a picture of his odometer-
*******************************
 |
| yes, my child is in shorts...don't call cps on me |
in, sat down, and completed his work. As I sat there watching him, smiling at this animated, loving little boy, the pharmacy and insurance company called me and told me they were going to ship his medication out today, after they received my approval for the co-pay. One more phone call from the pharmacist herself and everything would be finalized.
His therapist arrived and I left, crying tears of joy, relief, anxiety, any emotion that we have encountered on the roller coaster over the past few years.
I started to drive in the snow, and made a gut decision to turn around after seeing spin outs ahead of me. I came home and spoke with the hospital and confirmed his appointments for next week, starting Monday at 8:30.
I then received the final phone call from the pharmacist, verifying drug allergies, height and weight. "OK! We will ship this medication immediately!"
I couldn't have worked this morning. I wouldn't have been able to leave my sessions to answer several phone calls and complete the final round of details. But of course, God had other plans. The snow that was supposed to start at 4 AM started late, and has continued longer than expected. I look outside at this beautiful blanket of white snow and realize...
everything has a plan, a purpose, and above all...
a reason.
I want to believe that we have been down this road for a much bigger reason...and I can't explain how hard I am praying right now that this is our answer to recovery .
We have made it to the moment we have been waiting so long for.
We have had great challenges, but we have had greater faith. We have danced in the rain and even weathered the storm, but now the rain (or snow!) will stop falling and our rainbow will fill the sky.
All morning, this song has been running through my head...one of those times when you can't quite think of the words, but the melody remains...I remembered a few lyrics, and typed it into you tube...
the song running through my head is called, "Healing is in your Hands." Dear God, I have never needed you more than I need you right now. Please give us faith and confidence in our doctors, our decision, and Your word. Heal our son with Your hands.
http://www.youtube.com/watch?v=-qplaJEJJFk
Verse 1:
No mountain, no valley,
no gain or loss we know
could keep us from Your love
No sickness, no secret,
no chain is strong enough
to keep us from Your love
to keep us from Your love
Chorus:
How high, how wide
No matter where I am, healing is in Your hands
How deep, How strong,
And now by Your grace I stand, healing is in Your hands
Verse 2:
Our present, our future, our past is in Your hands
We're covered by Your blood
We're covered by Your blood
Chorus:
How high, How wide
no matter where I am, healing is in Your hands
How deep, How strong
And now by Your grace I stand, healing is in Your hands
Bridge:
In all things, we know that.
We are more than conquerors.
You keep us by your love.
You keep us by your love.
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