Monday, July 18, 2011

Just what is the problem, Doc?

We asked for a child with special needs.

In China, you can request special needs or non special needs. When we began the journey of adoption in May of 2007, we requested a non-special needs child. Looking back, I think we were so overwhelmed with the whole adoption "process", that it basically just freaked us out at the thought of traveling to the other side of the world and adopting a child with medical "issues". The unknown can be quite frightening.

Shortly after we started the adoption process, I found out that I was pregnant with Sophie Ann. Who knew that 3 months later we would learn that our Sophie Ann was a special needs child. Her needs were so great, that they took her life.

It put so much in perspective.

After some time in prayer, we called our adoption agency. We told them, "Change our form. We want a child with special needs. In fact, we ONLY want a child with special needs."

We saw Lily's face in late August of 2008.

I remember that day like it was yesterday! My hands were shaking as I took the paper off the fax machine at Acker Electric. Carlton and I had already committed to accept the file on the drive up to the office. We knew she was the one. I took one look at her and fell to my knees! She was just as I imagined. I stared at her face over and over and over. I was looking at MY daughter, who just happened to be sitting in an orphanage, alone, without a mama to hold her, that was on the other side of this planet! Talk about feeling helpless!!! That was the worst feeling!!! I can only compare it to that feeling you get when you can't find your children in a crowd. You know that feeling?? Like you wanna puke? Yep. That's how I felt. Nervous, anxious and helpless.

We looked over her medical file and her "major" special need was "missing left hand". Um....OK. Not so major to us. So, she doesn't have a hand. We got this. The only other "small" issue was that she was tiny. Well, aren't all Chinese girls tiny? We didn't give it a second thought. We accepted her file. Honestly, when you know it is the child for you, medical issues just don't matter.

So, began the long journey of "waiting". And you all know the rest of the story.

We blogged about our trip HERE.

When we got back to the States, Lily had a TON, a TON, did I say a TON of medical test run! The doctor at the international adoption clinic mentioned that she was small, but we assumed that some good nutrition would get her growth going. We watched and waited. And waited. And every now and then, she would grow a tad and we would celebrate.

But, mama's gut thought something just wasn't right. We were referred to a pediatric endocrinologist.

We tracked her growth for 2 years. I even made my own spreadsheet to keep up with every little centimeter that she grew.

After 2 years, the doctor said, "Alright Ms. Lily, something is not right. You are not growing like you should. We need to do more tests." So, we scheduled what they call a Stim test. Basically, she was given an IV for 4 hours and pumped with medicines that would stimulate her pituitary gland. She had to fail 2 out of the 7 tests to qualify for growth hormone therapy. I prayed that she would pass with flying colors or fail all 7 tests. I needed confirmation that giving her growth hormones was the way to go.

Lily during her Stim test.

5 days later, while on vacation, Lily's doctor called and told us that she had failed all 7 tests. She said Lily was in desperate need of medication for this. Her doctor has given her the diagnosis of Idiopathic Short Stature We do not know what has caused her body not to produce the growth hormone. Two options could be, trauma to her head during birth, or it could simply just be just one of those rare things that happens. The Doctor has recommended an MRI to rule out anything major which will be done in late August. She also told us that she would be contacting the insurance company. She prepared us for a battle. She told us to expect a denial. Or maybe two. The costs for Growth Hormone Therapy hovers around $2,500 EACH MONTH. I seriously almost choked. I think I did. I do remember the doctor asking me if I was still there.

What? Are you kidding me? I thought if we paid those high premiums each month, we were taken care of? You are gonna deny us , just because? Um....I. Don't. Think. So. Buddy.

Little did our insurance know who they were up against! A mama who would not stop until her baby got the medicine she needed.

And so the battle began.

---Please become a follower if you haven't already!


  1. Wow--we are currently in the process of "tracking" Matthew's growth. Currently he has grown the bare minimum a child can grow without requiring more tests. I have a feeling there is something going on. You know I have heard stories like this from so many adoptive families--sometimes it makes me wonder if the sheer trauma these kids have endured has short-circuited their growth. I'm glad you found out about this with Lily, and I totally understand you wanting her to pass or fail COMPLETELY so that you have an easy decision in deciding what to do!!!!

  2. I think of you often Aimee....praying for your sweet Lily today! You are an amazing mama!

  3. You are one brave girl Lily. I don't know if I could smile during a test like that. ; )