Well, it looks like Zoe has a blog. I sort of inadvertently created it while looking at how to do it/options etc. So there you are- here it is. Genevieve and I have talked about starting one for awhile, and Zoe thought it was a good idea too. So welcome to Zoe's blog.
An introduction seems in order, but first a note on the name. We hesitated using 1P36 in the name/url of the blog because we didn't want to (and don't) define Zoe exclusively on the terms of her 1P36 chromosomal deletion. On the other hand, we know how much support and encouragement we have gained from our friends wondeful blogs about their kids with 1P36 (I'll post links to them as soon as I learn how), and we wanted Zoe's blog to be accessible to new families facing a disanosis of 1P36. That way hopefully others will recieve the same sort of support we have found. So I was messing around with names/URL's and apparently committed us to this name. Hope it's okay with the my two girls (i.e. Genevieve and Zoe!)
Okay, on with the introduction. Where to start? Well, Zoe was born on February 21st, 2007. She was born at 42 weeks plus a day- 15 days over due and had to be induced. When she was finally evicted, she weighed in at 5 pounds 3 ounces (about 2353 grams). She was very little, and had a rough start. She was in the NICU for a week, then in the hospital (incidentally the hospital where both Genevieve and I work) for another couple of weeks. She was about 8 days old or so when we got the diagnosis of 1P36 Chromosomal deletion syndrome, which we had never heard of. We will write more, I am sure, about these early days, but I'd rather tell you about Zoe now, so that her introduction is who she is now, not what happened to her when she was little.
So who is Zoe now? The picture at the top of this post is one of her most recent ones. Zoe is an amazing little girl, and both Genevieve and I love her and cannot imagine life without her. She is a little crazy sometimes- she loves to be naked and to be bounced on the bed and tossed in the air. She is really starting to get the hang of movement and rolling over and manipulating objects and toys with her hands. She loves vegetables and eating daddies food (not mommies so much)off his gigantic fork, which is a little nerve wracking for us as she is also very very wiggly (though less now then when she was first born). She loves to smile and laugh and grab noses and glasses and hair. She has 4 beautiful teeth and curly hair that tends to stick out in every direction no matter how much hard we try to brush it. She is a delight, and the best baby ever- something we tell her every day.
And so begins the somewhat accidental blog of Zoe Alexander Ross. I hope you enjoy reading about her exploits, and ours. To finish this introduction I will just add one picture- the first picture of Zoe ever taken when she was just a couple of hours old. It was hard to look at in the beginning, but now when we see it we are flooded with love and awe and admiration about how far our little one has come in just 15 months or so. She is amazing.
Zoe Alexander Ross
born Feb 21, 2007
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