Lets start with the first topic I mentioned- LOVE. What a powerful word. I'm not sure I truly knew what love meant until I met the man I call my husband. Sure, we have days that both of us want to tell each other to take a hike, but most days our life is filled with laughter (a lot of laughter), joy and love. There are days that I look at Matt and wonder what I did for God to choose me for him. I can't believe how lucky I got. Matt is involved in all of the topics I will write about- why wouldn't he be, right? What some don't know is he is the focal point of a lot of the above topics. We will get to that later.
The person I will focus on in the coming weeks is Kadi. Our most intriguing child. The one that people immediately ask about when they come up to me at church, the grocery store, family functions etc...Here is her story:
Kaydence Jenae "Kadi" was born on June 10th, 2004 at 6:56PM. I was 18 years old. I had NO clue what I was doing. I thought I was a good mom, but I'm pretty sure that was just my mom feeding me a line of bull because she was there every time I turned around. My mom would come over to my house every other day to give Kadi a bath because I was terrified I would drop her. I guess those are the things that make the difference between a teen mom and a "normal aged mom". Kadi's birth dad has never met her. He doesn't want to meet her. In fact, when it came time to sign rights over, my lawyer said he had never gotten papers back so quickly. She will never know him. Does that bother me- not at all. She has a Dad.
I met Matt when Kadi was 17 months old. I was terrified of him meeting her in case something between us didn't work out, but he eventually did. I still have the sized 18mo outfit he brought her all wrapped up the night he met her.
From the time she was born every time we would go somewhere, people would comment on how tiny she was. She was born at 7lbs 3oz. Most would think that is an average sized baby. For some reason that girl couldn't work herself out of preemie clothes for three months though. I would take her to her well child check ups and the Dr. would always say "She is small, but she is growing, that's what matters."
Everything changed in May 2013. We went on a two week family vacation with my family. It was probably the most memorable vacation for Kadi since we went to Disney World when she was 3. She had a list of everything she wanted to do in those two weeks and we did EVERYTHING! When we weren't out on excursions like bay fishing or a dolphin tour, Kadi and Jersi were swimming in the pool at our vacation house. They swam and swam and swam. At the end of the two weeks, I think Kadi was the only one not ready to come home. She was what society would refer to as a "normal child".
When we came home, our world as we knew it stopped. No more fun, no more social activities, no more friends....nothing. Kadi went to bed one night as her normal, fun self. The next morning she wouldn't go outside. Anxiety took over her life in 12 hours. It came out as a fear of bugs. We aren't talking about the I see a bee and run 5 feet away from it kind- (because I do that! You do too- admit it.) We are talking the kind of fear that ruins your life. We were driving home from my parents house one night (25 miles) and Kadi saw a fly in the van. She unbuckled her seat belt, started hyper-ventilating and trying to jump out the back window, going 70mph down the interstate. All danger from surroundings became oblivious to her. She would run in front of a moving car if it meant getting away from a gnat!
We spent the whole summer visiting psychiatrists, psychologists, therapists etc... If there was someone referred to us, we went! Of course getting Kadi from the house to the car in the garage at 7-8 months pregnant was a job on its own. All anyone wanted to do was shove medication down her throat. I was desperate and didn't know any different, so I let them. Kadi slowly started going outside right before the start of 3rd grade. She was good for about 9 months. In spring 2014, when she started wearing shorts again I saw she had itty bitty bruises all over her legs. She would also disappear into the bathroom for long periods of time. I caught her picking at her skin so bad it would bruise. She had picked all of the hair on her legs out. I set out for help again. I was told by her psychiatrist that it means her anxiety is flaring up and she needs more medication. I didn't have a good feeling and set out for a different opinion. We wen't to a mental health PA instead. She is WONDERFUL! She backed Kadi off of all her anxiety meds except one small dose. Her bug fear was gone, her picking was gone. Things were good!
Yeah right- Here comes summer. Kadi quits eating. Out of no where. Just stops. Eats nothing. Not even one bite. She loses 3lbs in one month and falls off the charts. We head back to specialists. Her GI Dr. guesses its because she feels terrible when she eats so he puts her through multiple procedures testing for Celiac, Chrones, Ulcerative Colitis etc... Nothing. Everything looks great. Of course it does, why would this be easy!? More testing. He puts her on a high fat/calorie diet that included 8 slices of bacon a day, ice cream after every single meal and 2 bottles of Pediasure a day. We come back a month later and she has only gained ounces. Something is wrong. He continues the diet and bumps it up to 4 Pediasure's a day. A month later she gains a couple pounds. Everyone is thrilled. He removes her from the high fat diet because who are we kidding- no one can eat like that for long. The next month- she lost all the weight she gained. He of course, refers us on.
We go to Iowa City in Decemeber of 2014. They are WONDERFUL!! I can't say enough about how well we were treated. They do a complete makeup of Kadi's genetics. We received the results 6 weeks later that she has one tiny deletion on Chromosome #1's long arm. Unfortunately, it means nothing. There are no side effects from the small imperfection. They did take a screening for growth hormone levels which came back low. They refer us on and tell us to be prepared to hear that it's nothing again because a screening doesn't mean her levels are low all the time. Matt and I prayed and had the discussion that we were going to meet with the Endocrinologist and have her growth hormone tested. If it came back normal, we both agreed we were done and were just going to trust that God would guide us in the right direction. We both would walk to the end of the world for her but when you see your child constantly poked and prodded, it wears on you that you're the one choosing to have this done to them. The results came back extremely low- we were praising Him for this news! Could we actually have found something!? Kadi had to go through a difficult 5 hour infusion so they could see how her body produces Growth Hormones. Less than a week later the results are in- SHE DOESN'T! At some point (my guess is when she quit eating) her pituitary gland decided that it wanted to shut off that little part and not produce.It was an answer to many prayers! She will have to have one growth hormone shot a day until she is roughly 18. We can handle that! She went through an MRI (AWAKE!) to rule out a brain tumor and then she would receive her shots! Wrong. Insurance denied her claim due to 4.8cm of growth in the last two years. It doesn't take a rocket scientist to know that's not normal! We fought Wellmark and submitted an appeal. We were told it would take up to a year because the doctors that review the case usually have their client's (Wellmark) best interest and not some case number kid on a piece of paper. Once again, we turned to prayer. We asked God that the Dr's would see Kadi as a real, 10 year old girl instead of a statistic. It worked! On Friday- May 22nd, 2015- TWO years after this journey started, her case is approved and she is getting her shots! We go in to Blank for training on how to give them to her next Tuesday. Stay tuned for updates!
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