Tuesday, June 14, 2011

The Big Reveal

Tomorrow is a special day. It would have been Isaiah's 2nd Birthday. Instead of being sad that our sweet babe is not here with us anymore I thought it appropriate to share with you all the hard work that we have been doing to honor our precious Isaiah.

Today, Renzi spoke to the Downtown Rotary and I thought I would copy and paste parts of his speech today to give you a background on what we have been working on.

"From June 15, 2009 until May 17, 2010, Isaiah spent 24 nights in five different hospitals. He saw eight doctors and a small army of nurses and physicians assistants to treat everything from wheezing in the lungs to inflamed adenoids to infected ears to the battling seizures. He rode in ambulances twice...and visited four emergency rooms...in two states...a total of nine times. He was in a medically induced coma once and doctors gave him four times the normal amount of Adavan, an anti-seizure drug, to stop one of his seizures. Isaiah was under anesthesia three times and on a ventilator once. He received no less than 20 IV's on somewhere between 40-50 attempts.


Isaiah failed three epilepsy maintenance drugs that made him everything from cranky and sleepy to hungry and just plain upset, all at the wrong times. He took somewhere around 750 tablets of .125 Clonazapam from November until his death at the rate of between one and five per day.

Isaiah rode on airplanes three times, twice to Houston, TX to be admitted to the Epilepsy Monitoring Unit (EMU) at Texas Children's Hospital and once in Florida on a family vacation. In total Isaiah probably had 25 documented grand mal seizures and likely more than 100 myoclonic, partial consciousness seizures. Isaiah had four brain EEG's, including two that were videotaped in Houston to try to understand the origin of his seizures.

The toll on us was nothing compared to the struggle little Isaiah had, but it was not insignificant either. We met health care deductibles twice, including hitting the 2010's total deductible by January 7 of that year, and called the insurance company at least weekly. We spent a small fortune out of pocket that I estimate to be between $35,000-$50,000. We got up between 5 and 15 times a night to try to help Isaiah go back to sleep due to the myoclonic seizures-miniature ones that would wake him every night. For more than half his life we slept between three and five hours total a night with never more than two hours in a row.

We also learned very quickly that there was not adequate care in Oklahoma. It was difficult getting an appointment. It was difficult finding someone who was a specialist. It was frustrating to understand what the next steps were. Overall the experience was horrible. We ended up eventually finding a pediatric neurologist named Jennifer Norman at Integris. She was one of five statewide and was a God send. Her schedule was packed solid.

When it became evident that our case was unique, she was instrumental in getting us into Texas Children's Hospital Epilepsy Program, also packed and difficult to get into. Even though our outcome was not good, we received excellent care from her.

Here are some facts about neurological disorders and epilepsy in Oklahoma.

-approximately 9000 children have epilepsy in Oklahoma.
-there are currently 5 pediatric neurologists in Oklahoma-only one is an epileptologist
-Oklahoma lacks virtually all tools to treat all but the most common types of seizures
-there are currently no pediatric epileptologist surgeons in Oklahoma or facilities to handle surgery

Initially we were upset at OU Children's for not having care that would help us. But as time has passed, we found our OU family was among the most supportive. They have been wonderful."

After a year of meetings,speeches, and relentless bugging from us :) about the subject, Renzi and I are excited to share with you that this is about to change.

Today, OU is stepping up.

Soon, OU Childrens will announce a commitment to fixing Oklahoma's lack of access to pediatric neurological care.

The Oklahoma pediatric epilepsy and neurology program (OPEN) will add pediatric neurologists, epileptologists, and epilepsy monitoring unit and imaging equipment over the course of the next 5 years with a total investment of $7.5 MM. Isaiah's namesake will be used somewhere in this new facility.

We are so proud to be able to bring this issue to the forefront and to be able to help other families find the help they need. It is heart wrenching when your baby is sick, and even worse when you can't get the care you need for them. We feel certain that this will help ease the worries from parents and help them get the answers they need much quicker.

Renzi, is the true heavy lifter in this story and he has worked so hard outside of his "day job" and duties at home. I am so incredibly proud of him for really pushing for this to happen. He truly is an amazing man.

So, there it is...the big reveal....I couldn't be more proud. I think Isaiah would be too.

-Lee Anne


Danielle (elleinadspir) said...

This is wonderful. Truely great. I would really love to get involved in any way I can. If you have any direction for me, please let me know. This topic is close to our family as well, and I'd love to help if I can.

Haley & Tyler's mommy said...

Oh my gosh, Lee Anne, this brought me to happy tears. What a beautiful birthday gift! WTG all of you for working so hard to get something so important off the ground. Happy Birthday, Isaiah! You've made such a mark, little man.

Kate said...

A MA ZING!! Seriously, I'm speechless! Happy Birthday Isaiah!

Katie Nash said...

That is wonderful! What a beautiful way to honor Isaiah. You guys are amazing. We would love to donate to the project, can you tell us how?? Happy Birthday sweet Isaiah in heaven.

Adrienne said...

What an incredible birthday gift to Isaiah! And what in incredible gift to the tens of thousands of children and their families whose lives will be affected because of sweet Isaiah and the Stone family! Please keep us posted on how we can give to the project and how we can spread the word! Happy Birthday indeed!

Brooke Stone said...

AWESOME! Congrats! Happy Birthday Isaiah! xoxo Auntie Brooke

jlesch said...

That is so amazing, Lee! Your updates always make me cry. Isaiah is still leaving his mark. Giving thanks to God for this remarkable breakthrough!

Anonymous said...

WOW!! This is incredible news, it gives me chills! Happy Birthday Isaiah! kelsey wilson veldstra

Julie said...

How absolutely wonderful! You and Renzi have such amazing strenth and I know Isiah is so proud of you both! I can't imagine how terrible it was for you not to be able to find the care you needed for him close to home. Your determination to push OU forward in this matter is awesome and so many families will benefit from your efforts and love! I am so proud!

Emily said...

Lee Anne, I cried as I read this. When my baby boy, Luke, went through a month of a hard-to-pinpoint illness when he was 6 weeks old, I thought of you often. After a small surgery he was fine and is now healthy, but during those terrifying days, when my heart was sick with fear and not knowing, you came to my mind because of your grace in handling all that happened in Isaiah's life. Your family inspired me, and probably many more than you know. I am so happy for you that you got this incredible news, and so excited for you that you know that your precious boy's legacy is going to give so many families hope!

With love,
Emily (Dennis) Hart

the sharpes said...

this is wonderful! i'm so proud of you all! it's the pain & hard work of some that paves the road for people to have an easier and better experience in the future! what a blessing you all are!

Rita said...

You two? Are amazing.