My name is Jennifer. I bake cupcakes, crochet, and sew. I am in the middle of a job transition, but by the end of September will be cutting my hours back from 40 to 35 hours a week, working from home, and getting lots more family time by working a split shift. My husband and I have been married for five years. We got married May 28th 2007, which happened to be Memorial Day (yes - a Monday!), and this year it fell on Memorial Day again for the first time. Although, instead of celebrating, we dropped the kids off to my parents and painted, since our condo was (and STILL is...) on the market. Romantic, I know. Together, we have two very handsome little boys.
This is Lincoln.
I bet you had no idea, but he is four years old. He can be quite the firecracker, but also does have quite the sweet side. He just started karate and has some interest in taking up piano. He also is a great big brother.
This is Cole.
Cole is 2 and a half years old. At three days old Cole started showing signs of acid reflux. He struggled to gain weight the first few months of his life. Something wasn't right. Cole's eyes were turning well after he should have gained control of them. We saw multiple doctors and treated the problems, but around 4-6 months we noticed he was not reaching milestones like his peers. He wasn't supporting his own weight when we held him up to stand. He was nowhere close to supported sitting. We ventured back and forth to doctors, and even saw a specialist in genetics around the time he was one and a half. We still had no real answers. At his two year well visit in January 2012, the doctor and I talked about the possibility of seeing a neurologist. I had some weird motherly-instinct that Cole was having some "silent" seizures. We got our appointment for the following May (crazy long wait...), but Cole didn't feel as though though that was appropriate. He wanted to speed things up a bit. On February 15th, 2012, Cole had his first ever "real" seizure. We called 911, and he thankfully had come out of it by the time they got to our house. We opted for a trip to the ER, and we were glad we did. He ended up having a second seizure about an hour after he arrived. Boy did that change everything. It went from being called a febrile seizure to something of more concern. Within a few minutes the neurologist we had our appointment with in May came in the door. He immediately asked us if we had ever had a micro array done on Cole. A micro array is basically a detailed chromosome analysis. He ordered one immediately. It took us almost 5 months to get the results of that back (which was NOT typical...but that's a story for another day...). Our little boy was diagnosed with Angelman Syndrome.
What is Angelman Syndrome? I will first direct you to the foundation's website: www.Angelman.org. This site has all the technical, and not so technical information you could possibly ever need. I can give you a pretty good idea of what it is, though. People with Angelman Syndrome are missing part of the 15th chromosome on the maternal side (if it was the paternal side it would be something known as Prader Willi Syndrome; same deletion but totally different syndrome.). The absence of these genes create symptoms such as severe developmental delay (cognative and motor), epilepsy, sleeping problems and eating issues. Another "symptom" of these kids is their happy personality. Many "Angels" (as they are often called) have a killer smile and an infectious laugh.
We also have two cats, Isaac & Sully. They are six years old and brothers, although lately they have not been getting along...
That about wraps up our intros, but you'll get to know us a lot better as time goes on! Enjoy following our journey!!!
