Jan 9, 2009

It's A New Year

To celebrate the passing into a new year I wanted to do a family slide show. Unfortunately I have so many pictures that it is very difficult to keep up with deleting the bad (and duplicates) and rotating the sideways ones so that you can actually sit down and view them as a collection on the big screen (which is networked to our computer). Our computer was not up to the task so much of 2008 it was just too slow to do the work. We finally bought some more RAM and that helped but it was still a massive job. So during this winter break I spent several full days working through the photos. No, I wasn't able to finish but I made a really good start and we were able to spend several evenings viewing pictures from the first half of the year. A couple thousand to start and we needed a little break anyway.

Viewing those pictures, what was painful was to be reminded of how much energy we put into feeding and how she's actually regressed in that area despite the hours of feeding therapy. Oh, the frustration. I have pictures of her from the beginning of the year covered in food and putting the spoon into her mouth. She would open for several bites and in April and May would even eat a few tablespoons in a sitting. The few bites she would take always gave me such hope that she would take more but it was never to be. After the Nissen surgery in October I saw evidence of some micro-aspiration and she started refusing to eat. I have spent so many hours trying to make sense of it and now looking back I think two things are going on. I think she is protecting her airway because she knows that often when she eats little bits of food get down and it's irritating. I think also with the trach and her neurological issues controlling the food in her mouth, the timing of the swallow along with breathing at the same time are too much for her to coordinate. I really believe that some day when she doesn't have the trach she will be able to eat. Perhaps not enough to eliminate the feeding tube but enough to be able to enjoy some foods for sure.

It's been interesting to see, despite an inability to eat, that Ainsley has a really good relationship with food. She has always "eaten" dinner with us and has over the last few months gotten really adamant that she have all of the same foods we have on her plate and will gesture toward the table if we neglect to give something we have on our plates. Most recently she seems to have noticed that she didn't have a drink like the rest of us and has started demanding one, even drinking a few swallows. She even puts the food up to her mouth. As always she loves to play with it. Many children with food aversions will not get near food or touch it.

It was interesting to see how Ainsley changed during the year. In her own way she really did change from a baby to a toddler even though developmentally she is still more like a baby. She is an interesting puzzle and I so wish we could see inside her brain to watch how the neurons are connecting. I look forward to seeing her development over 2009 because I think it will shed a lot of light on her potential.

Recently a friend and I were talking and she was telling me how the birth to three center that her son and Ainsley attend had made a really grim prognosis for her son's development back in the beginning. Now he is doing so well a stranger would hardly notice there is any issue, other than perhaps a speech delay. Then there is Ainsley whom you would have thought would have received a very grim prognosis. She was delayed in all areas and had a known brain malformation of the cerebellum. Then there are all the medical issues on top of that. People have suggested to me that perhaps they don't want to give a negative prognosis because it may scare us or leave us hopeless. But I've always thought it was because they really don't know due to how unique she is. Hearing what this friend said confirmed that for me. And certainly she isn't the only parent to receive a negative prognosis or to receive one that turned out to be wrong. I wish we had an answer for the many questions we have about what Ainsley will be able to do. But at least in 2008 she answered the following:

Yes, I will be able to:

1) Sit independently
2) Move in and out of sitting
3) Crawl
4) Play purposefully with toys - push a car
5) Tolerate a PMV
6) Laugh
7) Open a drawer and get into the contents - cups
8) Make simple choices
9) Stand with Support
10) Get into mischief - pull DVDs off a shelf, wipes out of the box etc.
11) Wave hi and good night
12) Come when she's asked
13) Understand and respond to the words No and No Touch
14) Push my arms through the sleeves when getting dressed

With all that she has been able to achieve despite all she's had against her I have such hope for her future and this coming year. May you all be blessed with health and happiness.

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