What is Riley day you ask? Well...let me just tell you! Riley Day is January 15. It is to celebrate January 15, 2009, when Riley was discharged from the hospital. That day was a long time in the making. 107 days to be exact. And then finally, discharge day came. And we carried him out and he only had to go back once unexpectedly since then (well..unless you count his emergency surgery after his failed surgery in September, but lets not). This is not the norm for babies like him. Most are plagued by constant hospitilizations for one problem after another. But then again, nothing about Riley's life has been "the norm" for babies like him.
At first, I felt like we missed out on so much time with him. But one of us was with him EVERY day of that 107 days for hours and hours and hours a day, with the exception of TWO days. And my mom was with him then. And when we weren't with him, he had some of the best nurses caring for him, and playing with him. But once he was finally out of the hospital, life REALLY began with him. At first, it was hard going too many places with him, because he ate so erratically. He would snack every 1.5 to 2 hours. The first place we took him, was to our friends, the Pope's. Upon arrival, he puked ALL over me. That was a frequent occurance. But I was sitting at a friends house, holding my baby, in a puke covered shirt. I was happy as could be!
Once home, I became very adept at the in's and out's of ostomy supplies and learned all sorts of little tricks to care for his. Our first day home, i packed an emergency ostomy kit in his diaper bag. I have no idea how often we have used it, but I know it has been numerous times. My most memorable emergency bag change would have to be when we were at the beach, for a friend of Travis' birthday, and I had to take Riley to the TRUCK (of COURSE we didn't drive the van with the very large open back area that day) and change his bag with him half dangling off the front seat of the truck, and a belly covered with sand. THAT was the day, I proclaimed myself as the ostomy QUEEN. :o)
We have vacationed twice since Riley's discharge, and stayed with numerous friends overnight. While packing for a child with his needs can be nerve wracking (can't pick up an stomahesive powder at CVS if you forget it at home), its do-able. He has gone swimming (including floating in a lazy river for hours), army crawled in sand, eaten dirt, pushed toys through the grass and sand on baseball fields, gone on several boat rides, played in the rain, played with puppies, pet horses, squealed over animals at the fair, squealed louder over lights at the fair, gone on bicycle rides and rode a 4wheeler.
Last year, he spent Halloween, Thanksgiving, Christmas and New Years in the hospital. This year, he trick or treated with friends, ate a sickening amount of food at Thanksgiving, opened presents under our tree Christmas morning and was wide awake when New Years rolled around,and went outside with more friends to celebrate.
We have watched Travis grow from the curious boy who was in awe of Riley's funky belly, to the boy who can instruct anyone on how to properly care for Riley. He laid beside him on the floor when Riley was still an infant and dangled toys over him and played peek-a-boo with him when he could sit in the bumbo chair. When Riley could sit a little better, Travis would ask for him to sit with him on the couch or chair, so he could read a story to Riley.At ball practice and ball games, he would yell "Hey Riley" or "Hey boo" from across the field and would laugh at Riley splashing in the bathtub. He celebrated every milestone Riley met as if it were his own, and every day marvels that Riley is walking.
It's been a good year. It was full of ups and downs (ahem...September), but I certainly don't feel like any time or experiences have been missed out on from the past year. I think we approached life probably more normally and calmly than some parents of non-special-needs kids would. We just added the extra stuff Riley needs in our bags, and off we went. And Riley himself, he just adapts to whatever situation we put him in (see comment about staying up till midnight New Years Eve above), and goes about his business.
Tonight, we are having a
January 15, 2009