Adopting a Child with Arthrogryposis

From the very first moment I laid eyes on Evan, I knew he was supposed to be our son. I had not read his description, I did not know of his medical condition, I just knew that he was ours. I also knew that, no matter what that description said or what his medical condition was, we would be bringing him home. Impulsive? I'm sure that is sounds that way. In fact, thinking back on that day, that moment, even I am a bit surprised at how easy it was to make that commitment without knowing a single thing about arthrogryposis or what the future would hold for Evan and for our family. I wish that there were words to explain what "knowing" feels like, but I have never truly been able to find words adequate enough to describe that experience. The fact of the matter is, I just "knew" and once you know, you walk the path that is stretched out before you, knowing that Heavenly Father will guide your footsteps every step of the way. . . because He "knows" too!

Our first picture of Evan

Once we had made the official commitment to bring Evan home, I began looking for any and all information about arthrogryposis. What I found was disheartening. Everything I read described a bleak prognosis and poor quality of life. What would Evan's life be like? Would he even live past childhood? If so, what would his quality of life be like? Would he ever be able to live independently? While our commitment to bringing Evan home never wavered, our hearts were heavy.

Shortly after commiting to bring Evan home, Richard and I found ourselves watching "America's Got Talent." It was the first time we had seen the show. Almost immediately after we had tuned into the program we were shocked to hear the word "arthrogryposis" cross the lips of the show's host (prior to commiting to Evan, we had never heard of the condition). We were riveted to the screen as Luca "Lazylegs" Patuelli, a break dancer with arthrogryposis, was introduced. We continued to watch as Luca performed with his group, break dancing with the aid of his forearm crutches. It was one of the most incredible and inspiring things I had ever seen and it was exactly what I needed!

Armed with new motivation, I got back on the internet and began looking for "real people" who were living with or raising children with arthrogryposis. Within the first five minutes of my search I found myself at AMCSupport.org, an organization dedicated to providing support for individuals and families affected by Arthrogryposis Multiplex Congenita (AMC). I did not realize it at the time, but the people I would meet there would become my family. "Real people" living with and/or raising children with arthrogryposis, who would be there to encourage and support me through every step of our journey.

I quickly registered to become a member and made my first post to the forums, introducing myself, my family and explaining that we were just beginning our journey with amc by making Evan a part of our family. Within an hour I was in contact with Tracey, MaryBeth and Michelle, who all lived within an hour of me and who would become my mentors (and some of my greatest friends).

We were completely naive to what it would require to raise a child with arthrogryposis. When we brought Evan home, our triplets were approaching their 3rd birthday. All three of them were healthy (with the exception of eczema and asthma), so raising children with special needs was a completely new experience for our family. We had done our research, but no amount of research or preparation could have really prepared us for what it would be like once Joshua and Evan were home.

When we arrived home with Evan in December 2007 he was 3.5 years old. He had received no medical treatment in Ukraine and had spent those 3.5 years lying in a crib, day in and day out. He was unable to sit unsupported, his feet were severely clubbed, his knees and arms were in flexion contractures (locked in the bent position), his hips were externally rotated and he had no use of his arms and hands. We were overwhelmed by all of the care that he would require, but we still "knew" that he was our son and we knew that our Heavenly Father would provide a way for us to provide for him.

Shortly after returning home with Evan, the initial barrage of medical examinations began. Tests, xrays, and evaluations dominated the first several months home. Physical and occupational therapies were soon a part of our schedule multiple times per week. In April 2008, Evan had surgery to correct his severely clubbed feet. That surgery was not without complications. Two weeks after his initial surgery, it was discovered that the incision on his left foot had become infected and the effected skin had to be removed. He was hospitalized for a week on heavy antibiotics and was on wound vac therapy for over a month.

Shortly after we attended our first AMCSupport Convention (July 2008) we made the decision to travel to Shriner's Hospital for Children in Philadelphia, PA (a 10 hour drive) to receive treatment from Dr. Harold Van Bosse, an orthopedic surgeon who specializes in arthrogryposis. Our first visit to Shriner's in Phildelphia in September 2008, was an eye-opening experience. It wasn't until we had seen Dr. Van Bosse that we realized what substandard care Evan had been receiving (while most orthopedic doctors have heard of arthrogryposis, very few of them actually have experience treating it). From September-November 2008, Evan's feet were serial casted to achieve maximum correction (which, unfortunately, had not been achieved by surgery alone). When the serial casting was complete, Evan received his first set of KAFO's (Knee, Ankle, Foot Orthotics) which helped to maintain the correction of his feet and provided support. He was in these KAFO's 23 hours per day (out for bathing and stretching).

In March 2009, Evan had bilateral femoral osteotomies (both femurs were cut and the bones were rotated to face forward and pinned in place).

Evan in the PICU following Bilateral Femoral Osteotomies in March (note the cow cast :-)

Once the bones were healed, Evan went back into KAFO's and began intense physical therapy to get him up on his feet for the first time in his life! By August 2009, Evan was able to stand in his walker unsupported and had taken his first assisted steps.

"Thrilled" to be standing!!

Unfortunately, due to ongoing problems with his KAFO's, Evan's feet began to regress and turn back in, so at the beginning of November we began our second round of serial casting on his feet so he has had to take a short break from "walking."

Evan's 2nd round of serial casting, 3rd set of casts (these are the casts he is currently "sporting"!)

In the past two years, Evan has had 3 surgeries, been in 11 sets of casts, had countless physical and occupational therapy sessions and will be making his 21st trip to Philadelphia next week. He has come from not being able to sit unsupported to being able to stand and walk with support. He still needs complete assistance with many things such as bathing, dressing and using the bathroom, but he is making strides towards independence in all areas every single day and boy does he amaze me with his creativity in doing these things. He is incredibly smart, has the biggest vocabulary of any 5 year-old I have ever met and he makes me laugh every single day. The past two years have been some of the most challenging years of my life, emotionally and physically, but they have also been two of the most amazing years of my life!

Evan is pure sunshine. He lights every corner of our lives and my life is amazing BECAUSE he is in it. If you think that I am biased because I am his mommy, ask anyone who has the privilege of knowing him and they will tell you the same. Evan is truly a gift!

Are you considering adopting a child with arthrogryposis? If so, there are a few things that you should know. First, arthrogryposis is a lifelong condition. It is not reversible (it is also not progressive or degenerative), but it is absolutely treatable. There will be countless therapies, surgeries, and doctors appointments. Your house may closely resemble a warehouse for medical equipment. . .wheelchairs, walkers, gait trainers, AFO's, KAFO's, and other assisted living devices. There will be many sleepless nights and countless tears will be shed. You will have to learn to think outside of the box to help your child achieve their full potential (although, in reality, it will likely be THEM teaching YOU to think outside of the box :-) and you must be prepared to advocate for your child for their entire lives if necessary.

You should also know that your perspective on life will change. You will be inspired every single day. You will smile, you will laugh, you will cry tears of joy and sing, dance and shout in celebration of every accomplishment. Your heart will overflow with gratitude as you witness the ability of your child to change the lives of every single person they meet and you will fall to your knees on a regular basis and thank your Father in Heaven for blessing you with such an incredible and amazing child.

And. . .you will never have to walk this path alone. . . .


Would we do it all over again if we had the chance? Well, we are! In 2010, Evan will welcome home a brother with arthrogryposis (and two sister's with other special needs) and we know that we are blessed to have the opportunity to raise, not one, but two amazing AMCer's!

There are many children with arthrogryposis who are still waiting for forever families to help them achieve their full potentials. Could you be that family?

Aaron- Eastern Europe


Igor- Eastern Europe

Anya- Eastern Europe

Grady- Eastern Europe

Elizaveta- Eastern Europe

Madeline- Eastern Europe

Jordan- Eastern Europe (he reminds me SO much of my Evan!)

Want to know more about Arthrogryposis? Click here or here.

If you are considering adding a child with arthrogryposis to your family please take some time to do the following:

1. Talk to medical professionals who have experience treating children with arthrogryposis. Shriner's Hospital for Children in Philadelphia (Drs. Van Bosse and Kozin) and Dupont Hospital for Children (Dr. Jay) in Delaware both have well established Arthrogryposis Clinics and doctors/therapists who are truly knowledgeable about AMC and didn't just "read about it once" in a textbook in medical school.

2. Join AMCSupport.org . The best way to learn about what it is like to live with AMC or to raise a child with AMC is to talk to those who are doing it. Here you will meet real people and families who live with AMC every day.

3. If you are interested in learning more about any of the children pictured above, please visit Reece's Rainbow.

A new ride

A few months ago, Joshua's physical therapist with Help Me Grow filed an application with AmTryke for an adaptive tricycle for Joshua. A week ago I got the call that it was ready and today his physical therapist came by the house to drop it off.

Joshua LOVES it. It took him less than two seconds to figure out how to use it and I have a strong suspicion that he would've been content to sleep on it tonight had we not gotten him off!

We are so thrilled to have this bike and would like to extend a HUGE thank you to Ambucs, our local chapter, Greenebucs, and all of those who donate to this organization and make it possible for our special kids to have a set of wheels too!

Anxious to try out his new ride

"You want me to WHAT!? Get off?? NO WAY!"

In other news, Evan had his second post operative follow up two weeks ago. His legs are doing wonderfully, despite some headaches with his braces (let's just say that, after being in casts off and on for an entire year, the skin on his feet is very thin and isn't tolerating the constant pressure from the braces very well). I made the trip to Philadelphia with all 5 kids in tow and we had a great time. Since Joshua was along for the ride, he and Evan were both able to be screened for wheelchairs. They will have the official evaluations at the end of June and hopefully we will have some chairs for them later this year. Joshua will be getting a manual chair that is low to the ground so that he can get in and out easily on his own. The purpose of his chair is to give him more independence when we are out and about so that he is able to be up off the ground without exhausting himself (the walker is fantastic, but it only takes about 5 minutes to completely wear him out). We are hoping to get Evan into a power chair so that he can be independently mobile while we are working on getting him up on his feet. Having a power chair is going to open up a whole new world to him and we are excited to get him in it!

Exciting things are happening for my amazing little boys! It is such an incredible thing to watch them soar!

The results are in. . .

. . .and Evan's legs look AMAZING! Evan and I traveled to Philadelphia on Thursday and, after another x-ray to confirm that the bones had healed properly and completely, the casts came off on Friday morning! My jaw hit the floor as soon as the casts were off. I could not believe how good his legs looked. Not only were they rotated to face forward, but his left leg (that had been contracted at 50 degrees prior to surgery) was almost straight (he is now at 20 degrees on the left and 40 on the right (the right was previously at 60). AND, he can still floor sit (this had been a concern of mine prior to surgery since his legs are no longer able to rotate outward).

Before and After: The first picture was taken in March 2008 prior to Evan's bilateral clubbed foot repair, serial casting and bilateral femoral osteotomies. The second picture was taken on Friday (4/10/09). Amazing, no!? (PS- The mark on Evan's left leg is a smiley face, drawn by his doctor prior to his surgery. . .we both got a good chuckle out of seeing it smiling up at us when the casts came off.)

"Look Mommy! I can still sit!"

Once the casts were off, we began the process of adjusting his braces. Prior to surgery his braces were in need of some major overhauling, and I knew our orthotist was going to have a lot of work ahead of him. Once the braces were adjusted, on they went and we waited to ensure that no "angry red marks" appeared. Once we were confident that the fit was good, we packed up the car and headed for home. The adjustment period for "new" braces is always difficult and the ride home was tough, but with a little pain medication, Evan was able to get some rest and we arrived home around 1:30 am, ready for a nice, relaxing, Easter weekend.

He has amazed me once again with how quickly he has bounced back. His first item of business this morning was to get down on the floor and play with his cars (something he hasn't really been able to do with his casts on). He later showed us all just how resilient he is by standing (with support) and taking some steps (assisted). I just cannot believe how well he is doing. Look out world. . .I have a feeling that Evan is going to be on the move VERY soon!

Finally able to play with his cars again!

Enjoying the beautiful weather (and SO happy to be wearing pants and shoes again!)

Out early for good behavior. . .

I know, I know. I have done a terrible job updating. And I can't even blame it on being busy providing for of all of Evan's wants and needs because, quite frankly, this surgery and recovery has been, (dare I say it), a breeze! Going into this surgery I was a wreck. After the experience we had with his bilateral clubbed foot repair last April, I was sure that this experience would be no different. I had braced myself for the sleepless nights, possible complications and the unimaginable pain, but those things never came. This experience has been light night and day.

Less than a week following his surgery, Evan was already begging me to go back to school. Although I did not feel comfortable sending him back so soon (regardless of how good he seemed to be feeling, his body needed time to rest and recover), we did make a trip over to his school the Tuesday following his surgery to celebrate the birthday of one of his best friends. It was to be her birthday surprise. As I wheeled Evan down the hall towards his classroom I saw his teacher gathering all of the children at the door with the birthday girl in front, her eyes closed. We stopped in front of the door and the birthday girl opened her eyes to see Evan standing right in front of her. The smile on her face was priceless. I don't think we could've given her a better birthday present! All of the kids were so excited to see Evan. They swarmed around his chair and covered him in hugs and kisses. They ooohed and aaaahed over his cow casts and they told him about all of the things they had been doing while he was away. Once again, it was amazing to witness just how much he was loved and missed.

Evan with the birthday girl

While he was recovering he also had the chance to go to his first college basketball game, the NCAA play-in game between Morehead State and Alabama. He had such a great time! He also got to go out to lunch with his great-grandma and spent lots of quality time with his aunts, uncles and grandparents.

Last week, Evan, Joshua, Jacob and I made the 10-hour drive back to Philadelphia for Evan's first follow-up appointment. I wasn't really sure what to expect. He seemed to be doing so well and I hoped and prayed that would be reflected in his xrays. After the doctor had looked at his films he came in to give us the good news. Evan's bone were healing beautifully and. . .the best news of all. . . he wanted us to come back in two weeks for cast removal! He is getting out early for good behavior! I could not believe my ears! Prior to surgery we had been told to expect 6-8 weeks in the casts. He will be getting them off just 5.5 weeks following surgery!

So, we will be heading back to Philadelphia next week to get his casts off! From there he will go back into his braces (KAFO's) and we will really start working on getting him up on his feet. He still has a few surgeries to go (we will be doing external fixators to straighten his knees), but he will have to wait at least another 6-8 months before we are able to begin that process (I am sure that Evan will not object!).

King of the Castle (Philadelphia Ronald McDonald House)

Evan was able to go back to school this week and was so excited to see all of his teachers, bus drivers, therapists and friends. He even got to go on his first field trip (they walked down the street to Ms. Jackie's house to have their pictures taken with her GIANT (and I am not kidding when I say GIANT) easter basket and bunny) and got to participate in the preschool Easter egg hunt!

Needless to say, things have been going so smoothly and there is not a doubt in our minds that the hand of the Lord has been guiding this process. We are so grateful to each and every one of you who has remembered Evan and our family in your thoughts and prayers!

Fire Chief Evan (my hero in more ways than one!)

Amazing really. . .

Evan is recovering beautifully from his surgery. I am actually quite amazed at how quickly he has bounced back.

As previously mentioned, his surgery went without a hitch. He spent Tuesday night in the PICU for pain management and was transferred to the floor on Wednesday morning on a morphine drip and Valium (while primarily used to treat anxiety, it is also great for muscle spasms). He spent the majority of Wednesday and Thursday sound asleep.

(He had to have blood drawn from a vein in his head because his arms and hands were not cooperating. His lab work came back showing that his blood count was very low. Thankfully it started coming back up on its own and we didn't have to transfuse.)

On Thursday afternoon he was removed from the morphine drip and began oral pain meds (tylenol with codeine). Physical therapy also stopped by with a wheelchair on Thursday and we were able to get Evan out of bed for awhile. He loved the change of scenery.

On Friday he was a new man, awake, alert, laughing, chatting with the nurses and constantly asking me if he could get up and go play. To say that I was stunned would be an understatement. Richard flew back into Philadelphia on Saturday afternoon (he had gone home to take care of the other kids on Wednesday morning) and Evan was discharged from the hospital. Grandmom and Grandad drove up from Northern Virginia to visit with Evan and we spent a quiet evening at the Ronald McDonald House.

We woke early on Sunday morning to begin the trek home. I was a little nervous about how Evan would hold up on such a long drive, but once again, he shocked me with how well he did. We arrived home around 7 pm Sunday night.

(Happy to be going home.)

Evan has only complained of pain twice since his surgery (and usually it is only when I change his diaper. . .I am still perfecting my technique). The difference between this surgery and his bilateral club foot repair last April is like night and day. There is so much to be said for good pain management and rest (the two things that were lacking the last time around).

(Mommy's little hero enjoying the beautiful weather yesterday)

Evan has a follow-up appointment at the end of the month to ensure that the bones are healing properly and, if all goes well, he should be out of his casts by mid to late April.

For your viewing pleasure, here is a video of Evan on Friday evening. He was in such good spirits (I am sure the pain meds helped) that I wanted to capture it on video (this one is for you Tracey!):

Home

We are home. Evan is doing wonderfully. Will post all of the details once we've gotten a good night's sleep.

Success

After a restless sleep, we arrived at the hospital this morning at 7 am. Evan was admitted and we spent the majority of the morning talking to doctors, nurses and the anesthesiologist, having xrays done and watching the Disney channel (a rare treat for those of us with digital converter boxes and rabbit ears). At 1 pm, we went down to the PACU to prepare Evan for surgery. Once he had been given versed, he was taken back to the OR. He was out like a light in just 30 seconds!

The surgery lasted four hours. Richard and I spent the majority of the time in the waiting room with Tracey and her mom. We were so grateful for their company and the distraction! At 5:45, Dr. VanBosse joined us in the waiting room to report that the surgery was a success and that Evan had come through with flying colors. He was given a caudal block for pain and will be spending the night in the PICU to ensure that his pain management is closely monitored. He has been asleep for most of the evening, but every now and then he wakes up long enough to tell us that he feels great (I bet)!

He is in a petrie cast (long-leg casts with a stabilizing bar between) complete with cow print! His doctor certainly knows him well. We are not certain of his release date at this point, but believe that he will most likely be discharged on Saturday morning. We will spend the night in Philadelphia and then make the trek home on Sunday.

We extend our gratitude to all of you who have kept Evan and our family in your thoughts and prayers. We appreciate each and every one of you!

We have arrived!

Richard, Evan and I arrived in Philadelphia yesterday evening. The drive was uneventful and Evan, as always, was the perfect traveler. He talked, he sang, he laughed and ate cookies. He never slept of course (he never does when we are traveling. . .too much to take in), but we enjoyed having the opportunity to spend some good quality time together with just the three of us.

We arrived in Philadelphia around 7 pm and checked into the Ronald McDonald House. We normally stay at the house in Camden, New Jersey, but were able to get into the Philly house (just a mile away from Shriners) this time around. This house is fairly new with sleep number beds in all of the guest rooms as well as TV/DVD players. It even has a "mini movie theater" which Evan thinks is pretty neat. It is nicer than most hotels I have stayed in. You could say that we are living the life here in Philly!

We went to bed last night with news of a Nor'easter (big storm) heading our way. The projected snowfall for this area was 6-10 inches. We were very grateful that the storm was coming from the south and that we didn't have to drive through any of it. We woke this morning to 2-3 inches of snow and a windy and frigid day.

After breakfast, we headed over to Shriners for some preop. testing. The labtechs had not made it into work yet by the time we arrived so we headed upstairs to visit with our friend Tracey. Tracey was the first person with arthrogryposis that I talked to after we made the decision to bring Evan into our family. She was (and continues to be) a wonderful source of information and support. She has been through so much in her 21 years of life, but she always has a smile on her face and words of encouragement for any and all who need them. She and Evan have the same wonderful doctor (and of course, she was the one to point us in his direction) and she is currently being treated at Shriners for limb lengthening and clubbed foot (using an external fixator). She has been in the hospital for months and is such a trooper. We love visitng with her whenever we are here.

We also had the chance to see our friends, the Eberhards, also from Ohio. Their son Gabe also has arthrogryposis. He had the same surgery that Evan is having tomorrow at this time last year. He also had severe flexion contractures in his knees. Since late July, Gabe has been in external fixators (large metal frames) to straighten his legs (Evan will be doing this proceedure later this year or early next year as well). His second fixator was finally removed several weeks ago and he was there to get his cast off this morning. His legs are straight and look amazing. He got his new KAFO's today and will be getting his first pair of shoes (he is 3) this afternoon! After Evan had his blood drawn we were visiting with the Eberhards in their treatment room when the orthotist walked in with a 3rd brace. When she walked in, Gabe, who already had a brace on each leg looked at her and said, in his sweet little voice, "But I don't have another leg!" Gabe is our hero and we think it is such a blessing for Evan to have so many friends who are just like him to help him get through the tough times.

Evan had his blood drawn. He cried while they were taking the blood and was very happy when they were done, but he did great and we told him that he was very brave. He was also measured for a new wheelchair to use after the surgery.

Once we were done at Shriners we headed back to the Ronald McDonald House for lunch and some brownie and ice cream sundaes, then headed downstairs to the "movie theater" to watch Rudolph the Red-nosed Reindeer. It has been a wonderfully relaxing day and we are grateful for this calm before the storm.

Evan needs to be at the hospital by 7 am tomorrow morning. He will be admitted at that time and will be hooked up to his IV. His sugery (bilateral femoral osteotomy- they will be cutting through the tops of his femurs, rotating them and securing them with metal plates) is scheduled for 1 pm and should take between 4-6 hours. He will likely spend the first several days of his hospital stay in the PICU where he will be on a morphine drip for pain. He will be in a petrie cast (long leg casts with a stablizing bar between them) for 6-8 weeks following the surgery. His projected discharge date is Saturday (this will depend on how well he is tolerating pain) and we hope to drive home on Sunday.

We greatly appreciate the outpouring of help, support and prayers that we have received from so many. We are especially grateful to those who are caring for our other children while we are gone (Nana, Big Dawg, Keenan, Chris and Haley, Dave and Stacey Kirchner, and Grandma DD), for those who are providing meals for the kids while we are gone, and for those who have remembered Evan and our family in prayer. We also wanted to extend a special thank you to Michelle and Kayla (Kayla is Evan's best friend). Kayla came to visit on Saturday and brought gifts (stuffed animals) for ALL of our children. It brought tears to my eyes that they remembered each of the kids because they are all effected during times such as these. It really meant a lot of all of us.

We appreciate your continued prayers and promise to update as soon as Evan is out of surgery and settled tomorrow evening.

You are loved

Dear Evan,

I can still remember the first time I saw your face. It was like I had just found the final piece of a complicated puzzle. You were no stranger to me. My spirit knew yours and I knew that you were meant to be my son. I could not wait to hold you in my arms and tell you how much I already loved you.

Some people said that you were lucky to have us. But I knew, from the very first moment that I met you, that they had it backwards. WE were lucky to have you. You see, you have changed our lives and our hearts completely. You have given us new perspective. You have filled our days with joy and sunshine. You have made us want to be the best that we can be every single day. Your courage, determination and resilience has shown us that there are no limits to the things that WE can do. Your smile, your laughter and your zest for life, lights every corner of our lives and we are forever changed.

Yesterday, as I walked you out to the bus, I realized that it was not only our lives that you had touched, but the lives of everyone who has the privilege of knowing you. You see, Ms. Bonnie (even though she has not been able to drive her bus this week because of a hurt ankle) followed the bus to your stop today so that she could give you a gift and a hug before you leave for surgery next week. Ms. Lana was there too and she and Ms. Bonnie brought you this gift together. When you came home from school, your wheelchair was weighed down with more gifts and well wishes from your teachers, your aides, your therapists, your bus drivers, and your friends.

As I looked at all of the gifts that you had been given, as I visually took in just how much you are loved by everyone around you, my heart was filled with joy. My cup runneth over. And as I sat there with tears streaming down my face, I knew that, those who had given those gifts, that all of those who would be praying for you and wishing you well, had been touched just as deeply as I have been, by your presence in their lives. I realized then, that, they too, are forever changed because of the beautiful person that you are.

You are loved, Evan. You are loved.

"Look what I can do!"

Joshua using his walker. Crawling is still his preferred mode of transportation because it is much faster, but now that he has discovered how fun it is to "crash" into things, he is using his walker a lot more!

Evan uses a mouth stick to count and sort and to press buttons on the computer. Here he is counting the teddy grahams for the valentines that he made for his preschool class.

Evan LOVES to play with cars. Occasionally he will sit and use his hands to play, but when he REALLY gets into it, he will lay down and use his mouth. Note how well he uses his mouth to maneuver things. Also note how he uses one hand to move them other when moving the cars into position with his hands. It really is fascinating to watch him!

This is Joshua.

(You want to eat him up, don't you? Don't worry, he has that effect on all of us!)

Joshua was born with multiple limb differences. Doctors have been unable to pinpoint a specific diagnosis for Joshua's condition because the characteristics of his disorder do not fit neatly into any one diagnosis. Several theories include femoral hypoplasia (without unusual facies), proximal focal femoral deficiency, caudal regression, and sacral agenesis/dysgenesis.

His laundry list includes the absence of both femurs as well as the fibula in his left leg, absent hip sockets (his legs are held in place and supported by soft tissue only) a misplaced left scapula, his left arm is 3/4 of an inch shorter than his right, sacral agenesis (partial absence of sacrum (he is completely missing his coccyx also known as the tailbone), and sacral dysgenesis (the part of the sacrum that does exist is malformed). Fortunately, many of the problems that are associated with sacral agenesis/dysgenesis (and/or caudal regression syndrome) such as neurogenic bladder are not currently present (although a urologist monitors him closely). Unfortunately, we have very little history regarding his birth mother, her medical history or her pregnancy and so determining the cause of his condition is almost impossible. Our best guess is that his mother may have had untreated diabetes during her pregnancy which can often cause these types of deformities (there is very little prenatal care in the more remote parts of Uzbekistan, so this theory is probable).


We brought Joshua home from Uzbekistan when he was 10 months old. At the time he could not sit unsupported and would roll to get where he wanted to go. He now sits completely unsupported (he does not even use his hand(s) to balance), can crawl at lightening speeds, can climb up and down stairs and can walk with assistance.

Five months ago he was fitted for a prosthesis for his left leg (which consists of a tibia, ankle and foot). The prosthesis slides on over his existing leg, held in place by a strap that wraps around his waist. This prosthesis evens out his left and right legs making it possible for him to stand, cruise and walk. With the aide of a miniature walker (or mommy), Joshua is also able to walk.

Quite frankly, the only special need Joshua really has is that he is shorter than your average two year-old. I have found that this isn't necessarily a bad thing. For example, while he may be able to throw things into the toilet (a favorite pasttimes of his), he is not tall enough to reach the handle to flush, thus saving me many a phone call to the plumber!

Truthfully, there is nothing that Joshua cannot do. He is possibly the most stubborn and determined child I have ever met and because of that, I am excited to have a front row seat to all of the amazing things he will do in life!

(If you are wondering why I don't have as many pictures of Joshua. . .it's because he never sits still!)

This is Evan.

Evan was born with a condition known as Arthrogryposis Multiplex Congenita. The word "arthrogryposis" comes from the Greek derived "arthro" (joint) and "gryposis" (crooking). The terms "multiplex" (multiple or many) and "congenita" (existing from birth) are Latin derived. Losely translated, the term Arthrogryposis Multiplex Congenita means "many crooked joints at birth."

Arthrogryposis occurs in 1 out of every 3,000 births and and is a term used to describe more than 150 different syndromes and conditions. The most common form of arthrogryposis is amyoplasia (this is the form of AMC that Evan was born with). Amyoplasia is a generalized lack of muscular growth and development.

Arthrogryposis effects each individual differently. Joint contractures may be present in all of the joints (arms, legs, hands, spine, jaw, etc.) or may only effect some of the joints (in some individuals, only lower extremities are effected, in others, only upper extremeties. In some cases, a single joint may be effected). Contractures are generally divided into two categories. Flexion contractures describe joints that are locked in a bent or flexed position. Extension contractures describe joints that are locked in a straight or extended position. Both limit range of motion or joint mobility. It is also common for individuals born with arthrogryposis to experience severely clubbed feet and/or some degree of scoliosis (although this is not always the case).

How Evan is effected

Evan was born with amyoplasia, the most common form of arthrogryposis. As defined above, amyoplasia effects muscle growth and development. As a result, Evan is missing the majority of the muscle in both of his arms. Because the mucles in his arms are absent, he has no active movement in his hands (is unable to move fingers or grip with his hands) or arms. All of the movement in his arms comes from his shoulders. Both of his arms are in flexion (they are locked in a bent position). Evan was born with severely clubbed feet which have been corrected surgically and with additional serial casting. His legs are also in flexion (they are both locked in a bent position). He currently wears KAFO's (Knee Ankle Foot Orthotics aka full leg braces) to maintain the correction of his feet, straighten (as much as possible) his knees and provide support for weight bearing. Evan's hips are also externally rotated.

Evan received no therapy or medical intervention prior to joining our family in December 2007 (he was 3.5 years old). When he came home, he was unable to sit unsupported and had very little use of his arms and legs. With therapy, bilateral clubbed foot surgery, serial casting, bracing and lots of hard work, Evan is now able to sit without support (and is working very hard to get from laying to sitting on his own), can bear weight on his legs and walk with assistance (using a walker, gait trainer or mommy). Moving from his shoulders, he is able to pick things up by sliding objects between his fingers or pushing the backs of his hands together. He can also use one hand (usually lefty) to assist the other in turning the pages of a book and is working on learning to use an adaptive fork and spoon (the curved utensil is attatched to a cuff around his wrist, he "scoops" by moving his arm from his shoulder and gets the utensil to his mouth by leaning forward slightly and using his opposite arm to support the arm holding the utensil). He uses his mouth to paint, color, sort, point and use the computer (with a mouth stick) and play with his matchbox cars.





Evan has come a long way since joining our family and has shown us that he has limitless potential. He still has a long way to go, but we know that he can and will accomplish anything and everything that he puts his mind to. In short, Evan is a pretty amazing guy!

To learn more about Arthrogryposis go to AMC Support or follow the links on the sidebar.

"Why special needs?"

"Why special needs?" This was a question we were asked a lot during the process of adopting our boys, Joshua and Evan, from Uzbekistan and Ukraine. The truth is, we did not set out to adopt a child with special needs (much like a parent does not "set out" to conceive a child with special needs). Like most adoptive parents, we were hoping to adopt a healthy child (specifically a girl) as young as possible. So it only makes sense that we would come home with two little boys (one of whom was already 3.5 years old) with special needs! (If you'd like the whole story, you can find it here.)

Honestly, the fact that these two incredible little boys are a part of our family is evidence to me that God knows each of us individually and He knows exactly what we need. Our boys needed the opportunity to grow up in a loving family and to receive the medical intervention that would make it possible for them to reach their full potentials in life. More importantly, however, is the fact that our Heavenly Father knew how much WE needed THEM.

The more time I spend with my boys (and other people just like them), the more I am convinced that WE are the ones with special needs. You see, those of us who are "able bodied" or "typical" believe that there is a "normal" way of doing things. We all walk, talk and think "normally" and when we can't do things within the "normal" realm, we often give up. We limit ourselves because we have never had to learn to think outside of the box. Individuals with special needs do not place these limitations upon themselves. Often, they are forced to think outside of the box, therefore giving them limitless potential.

This is evidenced in the way that my son Joshua flies around the house at lightening speeds, using his arms. Or the way that my son Evan turns the pages of a book, paints, colors and plays with matchbox cars with his mouth. If my boys want to do something, they WILL do it. They will do it differently than you and I might, but they WILL do it. And in the process, they have taught me that there is nothing that I cannot do. They have taught me to think outside of the box. They have taught me that, I too, have limitless potential.

These amazing little boys are two of the most precious gifts that God has ever given me. They have blessed by life so completely that there are not words to adequately express my gratitude. Joshua and Evan are living sunshine and they brighten every corner of my life and bring joy to everyone who has the privilege of knowing them. And they remind me every day that there is nothing that I cannot do!