Two years ago, the most incredible and delightful blessing came into our lives. His name is Colin.
It has been two years full of struggles, but more importantly full of triumphs. I can't even begin to tell you the odds that have been against him, but he continues to beat them. One.by.one.
Although many milestones have come quite later than the average kiddo, he is meeting them. He started to crawl just days before he went in to see the geneticist. I casually glanced at him as he rocked back and forth on all fours and then saw him move forward. At first, I didn't catch on. I turned to Jason and asked, "did Colin just crawl?" We sat silently and watched him crawl, in perfect form, over to my diaper bag and start tearing it apart.
Not too long after that, he began to play in a kneel and pulling to a stand. With his low muscle tone, all the activity took time to build endurance. He stood longer and started to take steps (a.k.a. "cruising") This was such a HUGE step for him. There was some question with the way he presented as a baby if he would ever crawl or walk. All on his time schedule...
We got the best Christmas gift that we could ask for. A day or two after Christmas, Colin decided to stand up to my parents kitchen chair and proceeded to push it back and forth across the house. The very next day he began with his push toys walking everywhere. He would follow the kids, meander from room to room, and was thrilled with his new found freedom. His physical therapist gave him a forward facing walker that enable him to find his center of gravity and get better balance. He would take a few unassisted steps, but they were not very controlled and he had to be walking to someone.We took a trip back East to visit family and took that walker along with us. It was something in the Connecticut air that inspired him to walk. Not only was he walking several feet in between us, he would get himself unassisted to a stand midway and keep walking. I cannot tell how huge of a victory that was. I had my own little private goal that he would walk before his second birthday and he met it. I still just stop and watch him walk amazed at how far he has come.
Colin has continued to progress in all aspects of his development. Although he is behind, we see constant progress. He still has his Mic-Key Button (g tube), but takes his meals 100% by mouth. The g tube will not be removed (and it will be a surgical process to close it) until he has had consistent growth and progress on the growth chart. At his last appointment, his G.I. was hopeful that it would be soon. They are extremely conservative when it comes to removal, so that was a miracle that he was the one that brought up the subject. His speech is slow to come, but his speech therapist assures me every session that he is in a "speech explosion". have to remember that there is receptive speech and expressive speech. He communicates what he wants with signs and words. Sometimes, we just have to figure out the words :) He will try and engage anyone in a round of Itsy Bitsy Spider and gives or blows kisses to anyone who asks.
Button, button... who's got the button? That is what his g tube looks like
Once he started drinking from a straw, everything changed in the best way!
Signing "down"
A quick video about Noonan
Without a doubt in our minds, we know that Colin has a purpose in this life far greater than we can ever imagine. He has changed the lives around him for the better. Jason and I are stronger and better parents for having him. His brother and sister are the epitome of compassion and empathy because of their baby brother. People are learning more and more about "special needs" children and breaking down those barriers and fears because they know Colin. He has the most delightful countenance and sweetest spirit about him - you just can't help but love him.
