Taylor Gurry

Taylor is our precious 8 month old baby girl. She is a sweetheart with huge smiles, sparkling eyes, and the cutest giggle. This is one part of her journey - but most of her days are filled with cuddles, laughter, and play.

Friday, November 14, 2008

Genetics follow-up

Today I encourage each of you to count your blessings. We were back at Children's Hospital today in the genetics department and do we ever feel blessed. While waiting for our appointment, we saw so many sad kids that are living life and making the best of it. Including a pre-teen boy with no legs, several bald kids affected by cancer and chemotherapy, a family with two identical twin, teenage boys - both in wheelchairs, and others in such sad states you can't even describe. Jacob was with us because it was supposed to be a quick lab visit for David and I, and a young boy his age walked up to him and gave him a big smile. He stared at Jacob for a minute and when he turned to walk away, we saw the hearing device connected from his ear to his brain. We realized he couldn't hear or speak and again, your heart breaks. You could tell he wanted to play with Jacob - I can't imagine the frustration the little man faces everyday.

I don't share this to depress, but rather to inspire. Each of us is given so much and every day truly is a gift. While we don't enjoy going to Children's, the silver lining is that each time we're there Taylor's condition seems less significant.

We don't expect to learn much from today either. As David says, we're in "true medicine", where doctor's don't always know the answers. I mentioned a few months ago that we had Taylor's genetic make-up analyzed and the results (which took over a month to receive) indicated that she has "excess material" on her 5th chromosome. This is of "unknown significance". Seriously - it's a bit of an oxymoron - unknown significance. So, they wanted blood from David and I to see if we also had this variant. If so, it's actually good - it indicates that you can have this variant and be "normal", therefore her brain condition is likely not hereditary. If not, they still have to ponder and admittedly the testing is ahead of the science. Meaning, they can deliver test results but they don't necessarily know what it might mean. We're not entirely sure if this is helpful or not, but in the spirit of learn as much as we can - we're plowing ahead.

That aside, we've had another good week. Taylor has been fighting a bad cold (really hard to have older siblings and plethora of doctor appointments and stay healthy) and since she has remarkably good aim when sneezing/coughing, David, Julie and I all have her cold too. You can't really help but get sick when a baby six inches from you sneezes right in your face.

Thankfully, sleep has still been going fairly well so that has helped a lot. David and I had a night out last night too. Microsoft had a big party for its 10 year anniversary employees, and as an honoree, David and I went and had a good time. One of our favorite bands from our college days played and we were right at the stage (until our ears hurt - a sure sign of old age).

So, through our runny noses and foggy heads, we both feel very blessed tonight. Every day that we're able to enjoy our kids, go for a run, think and laugh and so many other things that the poor kids at Children's can't do - is a great day.

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