The Kendall Blog: August 2008

Reality is a part of life, which is sometimes very painful. Our reality has been a hard pill to swallow at times and today was one of those times. Kendall's 1 year birthday was celebrated today. Her real date was back on 7/18, but we pushed her out so that Cathy's friend Dawn could be here and so that we had some time to recover from Carsen's extravaganza.

It was another typical O'Brien/Rojek event with food, drinks and tons of laughter. The Rojek clan (Cathy's family) can always be counted on for joyous times and a continuous flow of chuckles and LOL's. Nothing different with this party, except the purpose of the event. It was Kendall's day to take in the 12 month milestone for which she had worked so hard to get to. It hasn't been an easy trip for any of us and we can now celebrate her 1 year passing and look towards the pursuit of 24 months.

Only, our reality set in when it was time to sing the song we have all sang a million times before. "Happy Birthday to you, happy birthday to you...happy birthday dear (Kendall)...happy birthday to you!" A usual frame of joy for those kids and parents that get to see their child dig into the cake for the first time. A one time adventure into a sugar coated demolition derby that is more fun for the audience than the kid themselves. A moment where mom and dad actually laugh at the mess that was made in hopes that there is something left for the party goers to eat. Our reality of this experience left us with a large void. You see, as much as we love Kendall and are so lucky to have her a part of our life, we still struggle with the things that she misses out on. Being optimistic and positive is always the best answer, but it is so hard not to feel the pain of events like these because they are not what we expect for her. On the surface we are happy about the day and love spending time with the family. Deep down, we are confused and hurting for her and for us.

Her birthday moment was left empty for everyone. I could see that during her song, something was turning in her head. She wasn't sure what was happening, but knew that her environment was different from what it normally is on a typical Friday evening. The beautiful cake in front of her was sitting there ready to be pounced on, but was left just as pristine as it was when it left the bakery. With some help, Kendall got a small taste of the creamy flower that sat atop the 3 story gem of a cake. 3 small finger tip tastes. Not too much, for fear of the new always upsets her taste buds and gag reflex. Just enough to make sure that she got to explore the sugar, but not too much to ruin the taste test. Then it was over.

Carsen was a good brother and found a way to be a part of the gift opening. He cornered the market on the attention available to be given from the crowd and Kendall moved on to her nightly routine to make sure that she gets enough fluids and calories for the day. Lately she has been throwing up quite a bit and our efforts to get her moving towards solids have been going by the way side. We take one step forward and quickly take one step backward. Very little progress on the eating front requires that we stick to a schedule so that we can get her the nutrition she requires.

For those of you that have shared with me your interest in reading this blog, I thank you for following our lives. It means a lot to us to hear that there are people out there that want to hear her story. I apologize for the somber mood of this posting as it comes at a time where the sheer reality of what Kendall is missing sets in. We are saddened that she had no idea what was happening today and that a crowd of people cheered her on during her special moment. In her moment of joy, she stood glassy eyed and transparent. We wanted her to share in the love around her and to be happy for her great achievement. Today that did not happen.

We move on knowing that she is happy in her own little way and the best we can do is to take every day as it comes watching and hoping that she can enjoy the events that lie ahead.

Kendall had a cold this week and when she is sick, she has a tough time handling food, sleep or anything else for that matter. We have to keep her off solids almost completely as her coughing and gagging becomes too much for her with any texture in her mouth. The good news is that she has been taking more of her formula by mouth versus through the feeding tube. She's not too happy about it, but she seems to be accepting the bottle when she is conscious versus only when she is falling asleep. We're working hard on getting her to understand that being hungry can be quenched by eating solids or taking a bottle. Once she gets this concept, her wanting more food will be a natural occurrence and we can start weaning her off the feeding tube. Until then, we are working on only using the feeding tube while she is being fed through her mouth so that she associates the feeling of being full with eating and swallowing.

She has also taken a liking to drinking out of a cup. At the one year mark, she should be taking a sippy cup by herself, but we're happy she is grabbing the concept of drinking from a glass.

She is still way behind developmentally. We're working on her sitting and balancing on her own, applying open hand pressure to items, holding her own weight either by hand or legs, and so much more. Her 4 therapy sessions/week give her so many tasks to work on that it is nearly impossible for us to keep up with her activities. Her scheduled homework has to be worked on after her food has settled and before her next meal. These time slots are short windows of time and we are trying to take advantage of this every chance we can get. Overall, we are very happy with her therapists. They have become a part of our life and have taking a liking to Kendall. They really seem to care about her and have been going beyond the 1 hour slot they are with us each week to make it a more positive experience for all of us.