Tuesday, July 26, 2011

Finally some answers!!!

There is no possible way that we can afford Lily's medication. But, really, who can afford $2500/month for medicine? If you can, good for you. But, not us. It's not even an amount we can adjust our budget to fit. It's just impossible.

I was in total despair when I learned about the cost. I remember I cried as I told Carlton, "its just not right....we adopted her...we chose her....and now we can't even afford her medicine." He quickly reminded me of the alternative of her still sitting in that awful, lifeless orphanage....without any hope of ever receiving any medical help. It's true. How stupid of me.

And so we started praying! And not very long after, He heard our prayers.

After several denials, the insurance approved her medicine. Her co-pay is now $150/month. It's still a lot of money for us each month, but we know God is faithful and will supply our every need. What He has called us to, He is faithful to see us through!

The meds are shipped to our front door packed down in ice. I was quite frightened to open the box when it arrived. I felt like there was some kind of nucleur bomb in there just waiting to explode!! They also ship all the supplies to give her the shots each night. She takes the shots 6 days per week.

And my Lily is the bravest girl around. She shed one tear the first night of her shots while we were being guided by a nurse over the phone. This mama(who happens to be extremely phobic of needles and blood), took a deep breath and administered the shot. I am now Nurse Aimee, thank you very much. I am quite good at it. Every night after that, she just smiles and says, "this shot will make me grow!!!" She always reminds us to give her the shot each night. How can this Lily girl be so brave? My little one has been through so, so much.

And can we hear a shout out for Lily growing 1cm. in 10 days??? Yay for Lily!!!

In other news, guess who is turning ONE tomorrow?? Here is a sneak peek of one of the pictures that I took........

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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.

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Thursday, July 7, 2011

A Familiar Place

It took me 20 minutes to type this sentence.

It might take me 2 hours to write this post.

So. DEEP BREATH. Here we go!!!!

Welcome to my blog. My new blog!

Like that title, BEAUTIFUL CHAOS? It's a new title for us...We have been previously known as "A Journey of Hope". Wanna know the story behind our new title?

Back a few weeks ago, when I played with the thought of doing a "public" blog, I asked Carlton, "Hey Babe, if you could give our family a 'title' what would it be? I told him I had a title in mind and we could compare each others and decide on a name. 10 minutes later, I gave him another little nudge and said, "So...you got one? What is it?" He looked at me and said, "OK, I got it. You tell me yours, and I will tell you mine. " And you just won't believe that somehow , someway, we came up with similar titles.

I said, "Organized Chaos." (Cause ya'll all know I like my things in order, including my kids. Hee hee.)

He said, "Beautiful Chaos."

It's very interesting that we both used "chaos" in our titles. But, I love how Carlton sees it as beautiful. Because it is. This sometimes crazy chaotic life is beautiful in so many ways. And that's what I want this blog to reflect...... that amidst the shuffle of this hectic, busy life, underneath lies beauty. Beauty that God has been and IS orchestrating in the Weathers' household!

It has been 2 years and 6 months since my last post on my public blog of the journey with our daughter Sophie Ann. After her passing, I needed time. Alone time. I needed time to just be "still" and reflect on the beauty God was weaving into this tapestry of our life. I needed time to pull my chicks (my kids) in real close and not spend time thinking about what my next blog post would look like. Blogging through my pregnancy with Sophie Ann was extremely exhausting, but I never regret one day of it. Her story touched hundreds of thousands of people in over 26 countries around the world. But, I knew that I was tired and my mind and body needed rest. I decided to take my blog private and do updates less often.

In February of 2009, I journaled publicly about our journey to China to bring home our beautiful daughter, Lily. It was a good thing. I wanted the world to see the need for orphan rescue. It was my hope that it would encourage one family to take a leap of faith and begin the journey of adoption. And it did. Many times over!! But, when we returned home from our trip, I felt like we needed to go private again while we watched God weave even more beauty into our tapestry while we struggled with attachment and other post adoption issues. I opened up our lives for a few readers and it was good. I needed that time. Time to focus on my new little one who needed me more than ever.

So. Here we are. 2011. And our family has grown to 6!! We added a new addition to our crew in July of 2010.....sweet little Hope! We now fill up that swagger wagon we bought a few years back! Life is good. God has been so faithful and gracious to us.

And I am pretty sure I am here to stay....in this world of blogging.

And. I am a little nervous. Because I know that I am ONE. BIG. OPEN. BOOK. And the world is going to get a sneak peak inside our life. Uh...can we say, scary?

I have lots to write about. So many things to say. And I am ready to get this thing started!!

So if you would, go on over to the side bar and become a follower. No need to be a stalker. Don't make me put one of those blog trackers up. K? Thanks.

I will see you again soon....my next several posts will be a very detailed journey of our very recent medical diagnosis for Lily. This is actually one of the very reasons I am starting this blog, in hopes that other moms can find some help through my process of dealing with the medical field/insurance companies etc. It has been a long, long, process and I look forward to connecting with other mothers going through similar circumstances!

Until next time,