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!):

"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 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!