December 9, 2008 CCAI, clubfoot, Family Stories, undescended testicle 0 Comments

By Anne and Mike, parents of Luke from China with unrepaired clubfoot

The Story of Luke

Our trip to get Luke was one of the most significant 2 weeks of our lives. It is really true that you never know what you can do unless you are thrown into a situation. We are just your average happy family, and I know for a fact that if we had somehow magically been told what type of physical and mental shape little Luke was in in China we might have declined his referral. That is a brutal statement to make about ourselves, but it is true. I think that you don’t know what amount of love you are capable of for a child, YOUR SPECIAL NEED CHILD, until you are in that situation. Once again, we are not saintly parents who went into Luke’s adoption with the attitude that we could conquer anything our handicapped child brought to us. Keeping it honest, we were more on the other side, relieved that the information about our adorable baby boy was that he was developmentally normal with just a mild foot issue that might not even need surgery. When we got the call from our agency, we were told we had a little peanut with slightly clubbed feet and, in fact, they might just be “turned in feet“. We thought we were getting a healthy child who might need corrective shoes. Little did we know what dire straights our baby was in. We feel a cold horror at the thought that if we had known before hand, we probably wouldn’t have accepted his referral. The idea of not having Luke in our family now is devastating. We hope everyone reading this sees that we are just your average family, who were unexpectedly and thankfully able to see what the power of Love can do.

When we finally got to China, on gotcha day we were presented with Luke, who looked like he was about 3 or 4 months old. He was tiny, he was listless and he stared at his hands. We were panicked. We were stuck in China without easy access to doctors, medicine or anyone who could tell us what was wrong with him.

The following day while eating breakfast, we told our guide, Evelyn, how worried we were, that we were afraid there was something seriously wrong with him. She said to us that she was worried too, and that we didn’t have to go through with the adoption and maybe we should take some time to think about it. This is where the love kicked in. At that point, we knew disrupting was out of the question. He was our son. We felt it. Regardless of his problems, he was already our son. It was terrifying, and there were a lot of tears, but we made a plan as a family to attack his problems. Anne was so strong, I’ll never forget how great she was, pulling the three of us into a circle, and saying simply, “we can do this, we have to.” Our guide immediately got us a doctor’s appointment, and I remember the feeling that we were just holding our breath until that appointment. Luke had bones we didn’t know existed poking through his skin, and had a foul odor on his breath. We were told later by the doctor that the smell was because his malnutrition was so severe that his body was breaking down muscle tissue for food. His skin had the consistency of thin wax paper, and he was bald on the back of his head from continuous laying on his back. He also was beautiful. He had black eyes that peeked at us periodically like he knew something was different and better. The first night we had him and he was sleeping between Mike and me, I woke him up to give him a bottle because I couldn’t stand the thought of his little stomach being empty through the night. His reaction was at first surprise and discomfort at being woken up, but when I gave him that bottle, he started making these little happy raccoon purring noises, and looked at me like “I don’t know who your are, but I think I like you!” This was a magic moment, and believe it or not, everything got easier and easier the more we bonded and loved him. We just took everything step by step, and helped Luke slowly crawl out of that hole of neglect and starvation.

We got so much help and support. Our travel group was simply, the best. Instead of pity, they offered encouragement and tried to help us find information and resources. They were sweet to Luke and never made us feel like we should be less joyful than we were. Though we knew them for only two weeks, we feel that they are some of the best friends we have ever had. We will also never forget how much the blog readers helped us. They were so supportive and made us feel like we weren’t alone. They offered us advice, and even worked to try to send us American formula. Every morning we would read their comments and emails and start crying again.

The Doctor informed us that Luke’s problems did not appear to be autism or brain damage, but severe malnutrition, he also had a hernia, undescended testicle, and two clubbed feet. He was so weak that he couldn’t hold his head up unsupported. He was 13 months old and weighed 13 pounds. Also, he had only eaten formula and rice cereal out of a bottle. We suspect now that the formula was watered down. Our first step was to find formula with actual nutritional value instead of the cake mix he had been drinking all his life,&nbs p; Our directions were to feed him constantly. Our guide got us vitamins and supplements to add to his bottle.

The progress he made in China was remarkable. He gained weight, he ate some congee, a few Cheerios, and after a few days began to smile and laugh. Every tiny baby step was like a blessing from God.

Since we got home, Luke has had been through 12 weeks of having his legs casted, surgery for his club feet and his hernia/testicle, but those were the easy parts. We have had him on a special diet, and had to teach him how to chew. Most of our efforts have been spent trying to help with all the delays related to his malnutrition and lack of stimulation. He gets weekly speech therapy, occupational therapy, physical therapy, and has graduated from feeding therapy. What did we ourselves do? Paid some co-payments, let the specialists do their magic, fed him and loved him. Not too hard! And look what we got!

He is doing so well! He is still delayed in every way, but he is catching up quickly. His therapists say that they think he should be caught up by the time he is 3 or 4. He can’t walk yet, but he can pull himself up and stand with help. He can’t talk yet, but he signs, grunts, and is moving in the right direction. He is still quite small, but he’s getting stronger and bigger all the time.
He is also smart, funny and loving in his own way. He still doesn’t like to be hugged, but would rather put his fat (yes fat!) cheek on your cheek and then kiss you and repeat over and over.

Remember, what you read on a child’s referral is just that, words on paper, there is a living, breathing child attached to it with more surprises and gifts than you can ever imagine!

Luke is our joy and we consider ourselves the luckiest parents to have gotten him!

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