Turning 2

It has been over a year since Kai has been hospitalized.  While we still get the occasional "blue" spell or scary situation, we aren't in panic or crisis mode every day.  The transition to the ventilator was a bit frightening, but our lives have been immensely better for it.  Kai has thrived and we can sit back and take a deep breath.  Then we had the addition of the daytime respite hours, and suddenly we had some semblance of a life back. 

I can't even describe how different things are than they were two years ago, when I didn't even think our little guy would make it through the winter.  From forty-five minute diaper changes (while turning blue and screaming due to his acidic diaper rash which was caused by his formula but at the time we thought was a yeast infection that wouldn't go away), and having to shake him awake while he was sleeping so he would breathe again, to now where he is happy blowing raspberries and cooing almost all the time and no longer a little baby but a toddler.

What a difference a year makes.

When we first brought Kai home from the hospital, I couldn't look beyond the next day/week/month.  Just getting through day by day was the goal.  Now that he is stable (and we are stable--can't forget that we have moved three times in the last two years, and that it took some time for Kai to find a job, then he was gone half the week because it was two counties away), I find myself thinking about what comes next.  I remember when we were fitting Kai for his adapted stroller and they mentioned that there are straps which can be used so Kai doesn't even have to leave the stroller when being put into a school bus (or wheelchair friendly vehicle)--my inward thoughts at the time were directed more toward I can't even think that far ahead...I am just trying to survive the month, let alone when he gets school age!  I have since learned that Kai will be transitioned to a preschool for a couple hours two or three times a week, and because of that, our in-home appointments will cease.  Fewer appointments during the week, plus some guaranteed hours where both kids will be in school?  Yes, please!

Now the thought of Kai growing up doesn't seem so scary--because honestly, I have wondered how I will be able to keep up as he grows.  He is not a small boy anymore, and although MSS people tend to be shorter, they can still get pretty big.  I will have J to help me, and nurses will be able to fill in where I need them (they also go to school with Kai).  The future now holds all sorts of possibilities.

As for Kai himself, he is content to be held and tickled.  He loves his blankets and seeks them out when he doesn't have them.  He is still hit and miss with other toys, but when he does interact it is fun to see the excitement on his face.  Head control is still a work in progress, but he tries.  His legs are strong and he uses them to move himself to his desired positions (which is never straight).  He is still this close to rolling onto his tummy--it is just a matter of time before he makes it over.



Kai has now turned two years old.  He has enriched our lives more than we could ever have imagined.  His sweet personality shines and all who really come to know him comment on how special he is.  We are so grateful to be able to be his parents and to have this precious child in our lives.