One year ago today, Little Man's case was brought before a judge on the other side of the world, and he was legally declared our son. I think back to this time last year and I can remember the overwhelming flood of emotions- the relief that he was finally ours and no power on earth could take him away from us, and the conflicting realization that while he was ours, we were separated by an entire ocean. We then began yet another season of waiting (of unknown duration) as we anticipated being told we could return to Little Man and collect him from the orphanage. That wait was brutal, and I would like to never experience it again.
It has been quite some time since I have dedicated a blog post to an update on Little Man's medical progress, so I figured today was a good day to do that. Many have asked how he is doing, but since that simple question has so many facets, I normally respond with, "He is doing great!"
I have mentioned before just how much life changes after adoption, but goodness, I think life has changed just as much with simply adding a child with special needs to the family. Those who have sweet kiddos with complicated needs will certainly agree with me. Our weeks are FULL with medical appointments and therapy, not to mention the day to day activities that take longer because of extra complications (like getting in and out of a chair, or not being able to open doors, or the sensory overload that causes you to spiral into distress for several days, etc). It affects every single aspect of daily life.
In order to keep track of all of his specialists and procedures, I've had to put together a binder. It has already come in handy several times having all of his information together as we bounce from one appointment to another.
Little Man has made tremendous progress with physical therapy. He is able to walk independently with his walker and braces, although it take a tremendous amount of energy and concentration. Because his braces are from his toes to his armpits, it is not possible for him to wear them throughout the day since he can't really sit or crawl in them. So we limit using those to specific times that we practice walking with him. Eventually, as he gains more control and strength, those braces will go lower on his torso and hips so that he will be able to wear them throughout the day and walk as he pleases.
We have also started the paperwork to get him a wheelchair. I was amazed at how custom it will be made for his specific needs. Since his spine is curved so significantly, there will be extra support to help him stay upright in the chair, as well as extra pieces to prevent him from slipping down out of the seat. When he tested the model, he learned how to wheel himself around in a matter of seconds (literally!), so we are VERY excited to get his finished so that he will have more independence.
He also has ankle braces called AFOs that he wears during the day, and knee immobilizers (a foam brace that is strapped from the groin to his ankles to keep his knees in a straighter position) and a back brace that he wears at night.
Just finding room to store all of that equipment is sometimes a challenge! :)
We have struggled significantly to get him to gain weight. Most kids gain weight pretty quickly after coming home, but Little Man is still only 1 or 2 pounds heavier than when we got him. At almost 4 years old, 21 pounds just isn't really cutting it anymore. We are working very hard to make each bite count while also prayerfully considering a feeding tube. We hope to avoid the feeding tube at all cost as it is a surgery to insert a tube into his stomach, which will partially remain on the outside of his abdomen. Throughout the day and night, we would be able to pour high-calorie liquid directly into it to help him gain more weight. The serious concern is that he would pull it out, which would cause a lot of damage. We would greatly appreciate your prayers for Little Man to EAT without ceasing and that each calorie would add to his weight.
In addition to those things that we have been learning to balance throughout the year, several of Little Man's doctors believe he has started having partial seizures. At this point, they aren't exactly dangerous, but rather something that we are aware of and monitoring closely. Another section in our medical binder.
Several months ago, Little Man chipped his front tooth almost all the way down to the nerve. It was not only very painful, but because of his sensory issues, getting it repaired was quite traumatic. As I laid across him to help hold his arms and legs down, I had to choke back the tears. "Your life has been SO unfair. God, this is NOT fair. Why do You allow this?" I thought and prayed. There is nothing that is easy for Little Man. It seems that almost each week brings some kind of new challenge. Many people meet Little Man and remark, "You are a very lucky little boy, do you know that?" I try to respond politely, but in my heart I know "the hand he has been dealt" and what a fighter he is. There is more strength and determination in his little finger than in most adults, I think. He has been challenged in literally every aspect of life- physically, mentally, emotionally, relationally. He has known the life of an orphan and the stress of being taken from the only home he ever knew to a completely new country.
I am amazed at the little boy God has given us. There are days that our new life is all so overwhelming that I become easily frustrated, but even so, it is difficult to not see God's fingerprints on the whole thing when I take a step back to see the whole picture. We have seen His faithfulness emotionally as He gives us the rest and insight we need to parent Little Man. He has continued to provide financially for all of these extra expenses, despite the days we are overwhelmed at the numbers. He has taught us perseverance and love. He has taught Baby Girl how to love even when it is difficult. We have seen Him teach Little Man self-control and patience and love and true joy.
Did you know that Little Man didn't always like being tickled? Every time we would tickle him, he would force a laugh because that is what he assumed he was supposed to do after watching Baby Girl. But today, if we reach out and tickle his sweet neck, he will throw his head back, mouth wide open and laugh with complete abandon. What a precious picture of the transformation God has made in all of our hearts. The ability to trust our security into His hands, tilt our head back and laugh.
What a great Father we have.
