Our Little Mister turned 3! This was a big birthday because when Kai was diagnosed with Marshall-Smith Syndrome, we were told that most of the children die before the age of three due to respiratory issues. Of course, we have since found out that there are many who not only pass the age of three, but there are two who have made it to adulthood (and are still thriving. --Remember, our pool is very small--Kai is the 46th case ever diagnosed worldwide).
I have to admit, this birthday has been somewhat emotional for me. When Kai was going through his "blue" period, I couldn't imagine him making it to three, let alone longer. Once he was stabilized on the vent, suddenly he started thriving and became a very happy child. Now, it is hard to imagine life without him.
Some bragging here: Kai has now officially gone two years without an unplanned hospital stay. That is huge. Every doctor we talk to is surprised because it is so rare for a trach/vented/medically fragile child to be doing so well. We have had some hiccups along the way (ear infections, seizures, etc) but nothing life threatening or even a cold bad enough to be concerning.
Developmentally, Kai is still right around a four to six month range. Not much has changed over the last year--small increments of developmental advancements. He struggles to lift his head; he rolls from side to side and can even manage to roll himself onto his stomach, but gets stuck at that point. While he normally ignores all his toys and our attempts to engage him in toys, he has shown awareness of the toy itself, and often when we are not paying attention, he will play with the toy for a short time. He is starting to actively reach out for objects. His blanket is the most often sought. He has a switch toy that plays music and the nose lights up when touched (activated by a light touch) that he constantly sets off. When we hold him and we are playing on the iPad or tablet, he will often reach out and touch the screen briefly, sometimes several times in a row. He is making attempts to interact with his environment, which is a big step in his development. Kai will even reach out and put his hand on my arm every now and then; longer than a pat, but shorter than a hold--long enough for me to know that he isn't just waving his arm around randomly.
Orally, we haven't been able to engage him much. Part of that may be due to my lack of consistency. He had ice cream for his birthday (pictured above), but that one good bite was the only one he really had. We tried, but he was more interested in his fingers, and by the fifth bite he was gagging, so we stopped. He will have his fingers, his blankets, the sleeves of his shirts, and even his ballard in his mouth, but when we introduce food, he spends more time gagging and thrusting it out with his tongue than swallowing. Yet, he seems interested in food, he just has a hard time getting it down.
Cuddling is still his favorite. He would be content to be held all day if possible. There have been very few times when he doesn't want to be held. He nestles right into me and will make his noises. Sometimes his high-pitched 'chewbacca,' sometimes his lower-pitched 'zombie' growl. It is fun to listen to his range. I love listening to his laugh. When we get him laughing at just the right times, he will vocalize his laugh and I can't get enough of it. He loves to be swung around (I hold him cradle style and swing from side to side), and he is also quite ticklish.
He is growing up. Three years old. It is hard to believe. He is starting preschool, and even rides the bus to school. How amazing. If I had been told three years ago what my life would be like today, I wouldn't have believed it. In so many ways we have been blessed by having Kai in our lives. We have our struggles and the hard times, but the sweetness of our little guy makes it all worth it.
