March 31, 2009 arthrogryposis, clubfoot, Family Stories, misdiagnosed SN, Orthopedic 0 Comments

by Mandi, mom to Mylee from China with a SN or arthrogryposis, originally diagnosed by China as clubfoot

Adoption has always been a dream of mine, specifically China. I don’t have a specific moment or story of when I decided I wanted to adopt, nor did I know how or when I would adopt, I just knew that someday my dream would become a reality. I shared this dream with Matt (my husband) long before we were married. Lucky for me, he has always been open to idea of adopting from China. Matt and I have been married for almost 14 years and have been blessed with three wonderful biological children. Blake is 12, Emma is 7, and Gabe is 4. After each one of our children was born, we would talk about adoption, and even went so far as to call some agencies for more information. And like many couples, as soon as we saw the cost, we ran as far away from the idea as possible. After Gabe was born in 2004, we were content and certain that we were finished building our family. However, as much as I tried to ignore it, there had always been emptiness in my heart. Little did we know that God had different plans for our family.

In July of 2007, I ran into an old neighbor who at the last time I saw her was weeks away from going to China to get her daughter. I had not seen them since we moved five years ago, so it was nice to catch up. She happened to have her Chinese daughter with her and I remember not being able to take my eyes off her (they probably thought I was crazy). When I left them that day, I didn’t think too much about the chance encounter until I happened to run into them two more times that same week. At that point, I was beginning to get the message. So I cam home and brought it up to Matt again. He gave me the okay to contact an agency. That next morning first thing, I was on the phone as well as the internet researching adoptions from China. I contacted several agencies who all sent us some information about international adoption. Again, once we saw the cost we thought there was no way we were going to be able to come up with that kind of money. But this time, something kept telling me not to give up. So, Matt and I talked about the possibility of adopting, and decided that since the wait was at least three years, we could easily come up with the money in that amount of time. Again, He had different plans.

In late July, I set up a meeting with an agency to sign the application and to get the information on getting our dossier together. Our meeting was set up for the evening of August 1, but on July 26, I received a phone call from the agency asking if we would consider a special need child. To be honest, my first reaction was there is no way we can care for a child with medical disabilities, let alone take on that kind of expense. We are your average middle class family. We work hard, live paycheck to paycheck, and spend our free time enjoying our kids. So when I first heard about the “waiting children,” my first reaction was there is no way we can care for a child with a medical disability, nor afford the expense. I just assumed they were children with too many needs for us to handle. Not only would it be asking a lot of Matt and me, but of our other three children as well. Plus, with our busy and hectic lifestyle, we would not have the time, energy, or patience to parent a “special” child. After sharing these concerns with the agency, I quickly learned that these kids are “normal” and in most cases healthy, but may have some type of medically correctable need.

Anyway, I was told over the phone that the little girl was about 18 months old and was born with club feet. I wasn’t all that familiar with club feet, but knew that my mom had been born with club feet as well as one of Matt’s cousins. So, I told them to go ahead and send her file, but NO picture. I wanted to be able to read her file and gather as much information as possible without having an image in my head. That afternoon I was reading through my e-mails and noticed that the file had been sent. I spent most of the afternoon reading through it. It explained about her finding spot, what she was left with, her estimated birth date, along with about three pages of medical information. According to her file, she was born with bilateral club feet but other than that, she seemed to be quite healthy. As a matter of fact, according to her file she had had two successful surgeries to repair her feet. As I am reading this, I kept thinking there had to be something I was missing, because this just seemed too good to be true. By the way, I should probably mention that while I was reading this, Matt was at work and had no idea what he was about to come home to.

After reading her file, I noticed another e-mail that said Yan Zhao Lu’s picture. WHAT? Surely they did not send a picture after I asked them not too. But, as much as I did not want to open that file, something inside me kept telling me to just do it. So, with my hands shaking, and a knot in my stomach, I opened the file. At that moment, my world became very still because in front of me on my laptop screen was the image of the little girl I had been dreaming about for years. I distinctly remember staring into her eyes with tears forming in my eyes and saying “this is my daughter.” I don’t know how, but I just knew it with all of my heart and soul, she was waiting for us to bring her home.

As I said earlier, Matt was in for a real treat when he got home from work. I sat him down on the couch, went through the phone call I received earlier that day, and read him the file that had been e-mailed to me. The entire time I was telling him everything, he did not seem to be as excited as I had hoped he would be. Obviously he had tons of questions, his biggest question being the most realistic. “How in the world are we going to come up with that kind of money in less than a year?” As much as I did not want to hear him say that, I knew he was right. Coming up with the money over three years was asking a lot, I knew there was no way we could do it in less time. But, something told me to show him her picture anyway. As her face filled the screen, I knew at that moment that not only was I looking at our future daughter, so was Matt. So, after deliberating for several days, and contacting medical professionals as well as family who have personally dealt with club feet, we moved forward in faith that this was God’s plan for us and our family.

On August 1, 2007 we signed our application with Hand In Hand as well as our Letter of Intent for Yan Zhao Lu. On May 12, 2008 our dream finally became a reality when a tiny little girl was placed in my arms for the first time. She is known to us as Mylee Zhao Lu-Ann. She is beautiful, smart, spunky, stubborn, happy, loving, caring, strong, carefree, and so much more. But more importantly, she is a daughter, a sister, a granddaughter, a niece, a cousin, a friend. She is with her forever family, right where she belongs.

I think at this time it is important to mention that Mylee may have been misdiagnosed. Before we even left China I was questioning to myself if she truly had club feet. Although she has the widest feet I have ever seen, they did not turn in or under like club feet do. As a matter of fact, Mylee has no problems walking on her feet. However, her knees and ankles do not bend when she w

alks therefore, when she walks, she is very stiff and wobbly. Soon after being home, we took her to our Pediatrician and he agreed with me that she probably did not have club feet, but maybe dislocated hips. He suggested we take her to a Pediatric Orthopedic surgeon at Riley Children’s Hospital in Indianapolis. Lucky for us, it is only about 2 ½ hours away. So, we took her to see a fabulous doctor that after several x-rays and a MRI, he too is concluding that she did not have club feet but possibly hyper extended knees. In other words, instead of her knees bending, they are bowed back and her muscles in her knees and ankles are so tight, they do not bend. He suggested we not do surgery and instead do a series of castings to force her muscles and knees to stretch. Over the course of six weeks, we drove Mylee down to Indianapolis every week so she could have a new cast put on. The old one was taken off, and as the doctor manually stretched and bent her knees and ankles, they were casted in that position. Mylee had a total of six casts over the summer and by her sixth one, her doctor was very pleased that she was almost at a 90 degree bend. So, once the last cast was removed, we were able to start with physical therapy three times a week. This has gone on since September and once a month we take Mylee back down for a check up. Unfortunately at her January checkup, we did not get the news we were hoping for. Mylee has not made anymore progress with the degree of her bend since November. So, at that point, it was determined that the only way to really be able to get her knees to bend would be to try surgery.

In February of 2009, Mylee had surgery on both of her legs. Her doctor cut both heel cord tendons, stretched them and sewed them back together. He did the same thing to the main muscles in her knees as well. After the surgery she was put back in casts for six weeks. Two weeks after her surgery, she had to go back to the hospital to have the casts taken off so the doctor could stretch her muscles some more. This was all done while she was sedated because of the amount of pain that would be involved. She was able to leave the hospital the same day and has since been doing very well. She is currently in straight legs casts and is encouraged to walk which she is having no problems with.

I would like to mention that after Mylee’s surgery, her doctor came out to give us an update. He started off by saying that everything went really well, but that Mylee has “the weirdest anatomy he has ever seen.” Apparently she is missing muscles in her legs, and where she does have some muscles, they are in the wrong place or have drooped. He said that he has never seen anything like it before and that if he had to giver her a diagnosis, he would say that she had a very rare form of Arthrogryposis. But even then, he is not 100% sure that is what she has. He did say that it was something she was born with and that during the time that her muscles should have formed, for whatever reason, hers did not.

Soon after returning home from the hospital, I was looking around on the No Hands But Our site and came across some information on Arthrogryposis and was certain that this is in fact what Mylee has. Her doctor is very optimistic in that Mylee will continue to walk, she just may not walk “normal.” The important thing is that she WILL walk, she WILL dance, and she WILL run, and she WILL do everything that any other child is doing, she will just learn to do it in her own way. With all of that being said, Mylee’s orthopedic issues are a little more than we thought we could handle, but I am a firm believer in we are only given what we can handle.

Mylee has only been with us for about ten months, and in that time she has gone through more changes than most people go through in a lifetime. She has left the only place she has ever known, traveled half way around the world, learned a new language, became part of a family, and endured many medical procedures. She has had x-rays, an MRI (sedated), nine or ten sets of casts, therapy, and surgery. Mylee has blossomed and thrived through every obstacle she has tackled. And she has done so with such a brave spirit. I pray that the Lord will continue to allow her to thrive. We are blessed beyond measure to have Mylee as our daughter and sister. I thank God every day for entrusting her to our family.

We did not set out on this journey as a rescue mission. However, that is exactly what we have done. We have rescued a beautiful little girl from the possibility of growing up in an institution without ever truly knowing what love is. Yes, there is the possibility that she may not walk “normal,” or that she may need more surgeries and therapy, but the important thing is that she will grow up with the love and safety of a family. I also hope that our other children learn that every child regardless of medical disabilities, or special needs are just as deserving of love as a “normal” child. I look at this journey as us not choosing her, but God having enough faith and assurance in us, that He chose us to be her “forever family.”

We have been asked several times if we would suggest special needs adoption, or if it is something we would consider doing again. To answer the first part, yes, we would definitely suggest special needs adoption. As for adopting again from the special needs program, you will have to follow our blog for more on that….

Our family blog is here.

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