final day of IVIG- let it go, kite runner!
We are nearing the end of round 7. Yesterday, we had two fun visitors stop in Hunter's room.
A little rendition of "Wheels on the Bus" made both boys smile- especially Peyton.
When it was time to stop the infusion and flush the IV, Hunter's anxiety topped the charts and as I held him down to allow the nurse to complete her work, he slapped me (HARD) in the face. The nurse let out a gasp and I knew I was about to lose it. She finished the flush, wrapped up his hand, and we walked out the door. I did not speak to him until I buckled him in the car seat and looked him directly in the eye and told him he was never to hit his mommy again. I showed him my red cheek and told him there were no electronics for the rest of the day.
I turned on my CD from my cousin Anne and tried to block out the negativity, the stinging cheek, and the "slap in the face," that I was holding him down to 'help' him, but he saw it as hurting him.
I just prayed that someday he would understand that I never, ever have intended to hurt him- all of the therapy hours and needle pokes and procedures were done with his best intention at heart.
I thought it had gotten a little quiet, and when we pulled in the driveway, I turned around and saw this:
Out. Exhausted from the defiance and the 3:40AM wake-up call.
Last night, all kids were in bed by 7:30 and Hunter woke at 4, but then fell back asleep until I woke him at 7:15 AM to get ready to leave for the hospital.
He was super happy on the drive, talkative, answered all my questions on the first try, and told the nurse, "I am going to take my medicine nice today!"
Thumbs up for the final day.
We have been working with our new insurance company to get a pre-approval for IVIG, since it is a new policy. We have been on COBRA for the past few months so we could continue his therapies and medical treatment. This morning, I received a call and you guessed it: DENIED.
So once again, I explained to this nice employee how frustrating it is to be denied for a medically proven-effective medication. She also said that ABA therapy would not be covered for the 2015 year. The statement that upset me the most, after I asked her about contacting the HR department, or appealing that decision, was that she said multiple families had asked, and they had already made the decision that ABA would not be covered.
The one therapy that is proven effective for children with Autism will not be covered...even though Medicaid is now being required to cover ABA services.
Again, we must fight for coverage. I know that the immunoglobulin that is dripping right now is the price of a small used car. I get that the $200/hour for ABA services could pay mortgages and many trips to the grocery store.
But I also know that we have come from 25 hours/week of ABA therapy to 3-6 hours/week. I know that Hunter is able to maintain composure in a regular education classroom for fifty-six hours per week with limited assistance. I know that his face, once completely discolored from his Vitiligo, is repigmenting. I know that yesterday, he wanted to get out of the car to pick up Paige so that he could say hi to his teacher and show a friend his new "neon" lightning McQueen. He told me, "I want to show Ethan my car- come with me mommy!" We walked over to him and he had a complete conversation with a little boy who isn't even in his class- but he told me he plays with him on the playground. Little friends gathered around Hunter and touched his "cast," asked him if he was OK, waved and said hi....as a parent of a child with a social communication disorder, I was actually astounded by the "normal" interactions that were occurring...
...and completely grateful.
Today we complete round 7. We watched "Frozen" this morning, and 'Let it Go' is resounding in my head.
Time to let go of the worries, the stress, the battles and realize that above all else, this child is recovering and THAT needs to be celebrated.
The kites outside the hospital today reminded me of the quote my friend Brynn shared with me that I referenced a few weeks ago:
"I see children as kites. You spend a lifetime to get them off the ground. You run with them until you are both breathless. They crash and you add a longer tail. You patch and you concept. Adjust and teach. You watch them lifted by the wind and assure them that someday they will fly."
We are continuously patching...
lifting him up after he crashes...
and running alongside of Hunter to get him to fly. But we aren't alone.
He is there as well.
Couldn't ask for a better running partner.
http://youtu.be/722zPX1npcA
Never Once- Matt Redman
Verse 1
Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Verse 2
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Is Your power in us
Pre-Chorus
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Chorus 1
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Repeat Verse 2
Repeat Pre-Chorus
Chorus 2
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Bridge
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Ending Chorus
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
When it was time to stop the infusion and flush the IV, Hunter's anxiety topped the charts and as I held him down to allow the nurse to complete her work, he slapped me (HARD) in the face. The nurse let out a gasp and I knew I was about to lose it. She finished the flush, wrapped up his hand, and we walked out the door. I did not speak to him until I buckled him in the car seat and looked him directly in the eye and told him he was never to hit his mommy again. I showed him my red cheek and told him there were no electronics for the rest of the day.
I turned on my CD from my cousin Anne and tried to block out the negativity, the stinging cheek, and the "slap in the face," that I was holding him down to 'help' him, but he saw it as hurting him.
I just prayed that someday he would understand that I never, ever have intended to hurt him- all of the therapy hours and needle pokes and procedures were done with his best intention at heart.
I thought it had gotten a little quiet, and when we pulled in the driveway, I turned around and saw this:
Out. Exhausted from the defiance and the 3:40AM wake-up call.
Last night, all kids were in bed by 7:30 and Hunter woke at 4, but then fell back asleep until I woke him at 7:15 AM to get ready to leave for the hospital.
He was super happy on the drive, talkative, answered all my questions on the first try, and told the nurse, "I am going to take my medicine nice today!"
We have been working with our new insurance company to get a pre-approval for IVIG, since it is a new policy. We have been on COBRA for the past few months so we could continue his therapies and medical treatment. This morning, I received a call and you guessed it: DENIED.
So once again, I explained to this nice employee how frustrating it is to be denied for a medically proven-effective medication. She also said that ABA therapy would not be covered for the 2015 year. The statement that upset me the most, after I asked her about contacting the HR department, or appealing that decision, was that she said multiple families had asked, and they had already made the decision that ABA would not be covered.
The one therapy that is proven effective for children with Autism will not be covered...even though Medicaid is now being required to cover ABA services.
Again, we must fight for coverage. I know that the immunoglobulin that is dripping right now is the price of a small used car. I get that the $200/hour for ABA services could pay mortgages and many trips to the grocery store.
But I also know that we have come from 25 hours/week of ABA therapy to 3-6 hours/week. I know that Hunter is able to maintain composure in a regular education classroom for fifty-six hours per week with limited assistance. I know that his face, once completely discolored from his Vitiligo, is repigmenting. I know that yesterday, he wanted to get out of the car to pick up Paige so that he could say hi to his teacher and show a friend his new "neon" lightning McQueen. He told me, "I want to show Ethan my car- come with me mommy!" We walked over to him and he had a complete conversation with a little boy who isn't even in his class- but he told me he plays with him on the playground. Little friends gathered around Hunter and touched his "cast," asked him if he was OK, waved and said hi....as a parent of a child with a social communication disorder, I was actually astounded by the "normal" interactions that were occurring...
...and completely grateful.
Today we complete round 7. We watched "Frozen" this morning, and 'Let it Go' is resounding in my head.
Time to let go of the worries, the stress, the battles and realize that above all else, this child is recovering and THAT needs to be celebrated.
The kites outside the hospital today reminded me of the quote my friend Brynn shared with me that I referenced a few weeks ago:
"I see children as kites. You spend a lifetime to get them off the ground. You run with them until you are both breathless. They crash and you add a longer tail. You patch and you concept. Adjust and teach. You watch them lifted by the wind and assure them that someday they will fly."
lifting him up after he crashes...
and running alongside of Hunter to get him to fly. But we aren't alone.
He is there as well.
Couldn't ask for a better running partner.
http://youtu.be/722zPX1npcA
Never Once- Matt Redman
Verse 1
Standing on this mountaintop
Looking just how far we've come
Knowing that for every step
You were with us
Verse 2
Kneeling on this battle ground
Seeing just how much You've done
Knowing every victory
Is Your power in us
Pre-Chorus
Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say
Chorus 1
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Repeat Verse 2
Repeat Pre-Chorus
Chorus 2
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful
Bridge
Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone
Ending Chorus
Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
Every step we are breathing in Your grace
Evermore we'll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful
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