We are quickly approaching the anniversary of Colin's surgery. It has been an incredibly difficult and yet blessed year. I was just thinking back at my mind set this time last year. I can't even begin to describe the fog that I was in. Although at the time, I tried to mask it the best I could. On the eve of Easter, I realized that I did not take one single picture of that day last year. Thankfully, my mom did. That is completely unlike me to let an occasion or holiday go undocumented. It really brought it home how much we were bearing at that time. I am just glad that we are here and we have made it this far.
I am truly thankful for a Heavenly Father that gave us "news" in doses. I can look back and see those moments when I was ready to break. At one point, Jason came to the hospital and I told him I just had to leave. I just couldn't stand to hear one more test result, one more possible diagnosis, one more piece of impending bad news. I came home, called my mom and cried and cried and cried. I put my big girl pants back on, straightened my shoulders and braved on a little more. I went back and lo and behold some good news. There were more times when the dust was settled, life was carrying on and then a "dose" of news would come. Some a little unbearable, some not so bad. Again, my breaking point was within reach and a tender mercy was received.
Colin has continued to make so much progress. Doctors, specialists and therapists are amazed at the strength of this little boy and how quickly he is making strides. His physical therapist told me that she has never had a patient make such fast progress both socially and physically. He is still delayed, but everyday there is something more. His gross motor is at about 9 months, socially he is 9-12 months (Dr. says closer to 12) His Mic-Key button (g-tube) made it unpleasant to be on his tummy. Once he learned to trust that it wasn't painful, he decided that rolling was a great thing. He sat up unassisted before he rolled. He is currently working on going from a side sit into a four point (or crawling) position. He has mastered Patty Cake and "yeaaaaa" - they are remarkable similar, Itsy Bitsy Spider, he signs "more" and will give you a courtesy wave goodbye. He started wearing glasses and then was fit for contact lenses. Yes, I put them in and remove them everyday. His vision is remarkably better with the contacts and loves to use his glasses as a chew toy. It is amazing how much I took for granted the milestones that our children reach. They just come for most, but having to work so diligently to help him achieve those makes them so much sweeter.
Cue glasses off in 5, 4, 3, 2, 1...
He really isn't mad, just super excited for a round of Patty Cake!
Colin has become quite the eater! This is an amazing feat for this guy. He took nothing by mouth. Maybe a sip or half an ounce here and there. He would eat some from a spoon and then decided that it wasn't his thing. We backed off and then tried again. He was doing ok, but then got the stomach flu. I thought, "Great. After barfing up everything, the last thing he will want to do is eat." After days of limited food, he started eating with a vengeance and has not looked back. We are hoping to wean him from all feedings via the g-tube soon and then his button will be removed. He sees a feeding therapist and she is amazed at each visit when we review what new things he is doing and eating. Along with the eating comes speech. He is sound repertoire has increased as he sees his mouth as a tool.
Sharing a popsicle with Evan
One of the doses of news that we received is that it is possible that Colin may have a very rare syndrome call Costello Syndrome. There are only approximately 300 cases in the world and the chances of having a child with Costello Syndrome is 1 in 30,000,000. Yes, that is
thirty million! We are still in the process of testing to get a confirmation. It was a tough pill to swallow, but once again we moved into action. We contacted the foundation, got informed and decided face this head on. The greatest gift that I can give Colin and my family is information, advocacy and awareness. If and when we get a formal diagnosis, whether it be Costello or something else, be prepared to join me in this journey.
Colin wins the heart of everyone he comes in contact with. I do not know what it is, but he is infectious. He has this serious little personality, big blue eyes and a smile that lights up a room. The therapists flock to see him when he comes in (even though he is not their patient). There have been multiple times with different therapists that tears of delight and pride were shared over a new achievement or milestone. His little spirit is so GIANT!
When you are blessed with a special needs child, you do go through a sort of grieving process. I would be lying if I said I never got angry, asked "why him?" or was just plain sad that I didn't have a normal baby. My focus was so much on him that I tended to go inward and battle the demons in my mind. Then you come to a point where you can either forge ahead and fight with all your might or become indifferent. We have chosen to fight. I truly appreciate those who have treated Colin just like the other babies. I can honestly say that I have never been so close to heaven as I am when I am with Colin.
I will continue to post about his progress. Also, I will be posting his first birthday bash! Thanks to all who have supported us in this time. Your kind words, encouragement and love has been felt beyond measure.
**After writing this post, we got some news from UCLA. The small abnormalities that Colin has in his chromosomes were inherited from the both of us. I passed on the gain or additional material on 6 and Jason passed on the micro deletion or missing information on 2. They never expected this. In fact, they do not even think they have encountered this before. In all three of our cases, our chromosomes appear to be normal and all present. It is when you check every band of DNA that this test does, that you find these abnormalities. With that in mind, they think that everything will then be "normal." The causes of his issues may be a result of having both abnormalities. We are now doing further testing to confirm everything and then we will have a course of action.
