It was a year ago today

On December 1st, 2008 we found Elle in her crib in what we initally described as a catatonic state. Little did we know that the next few hours would prove to be life changing for us. It was in those next few hours and days that we learned that Elle had been born with a rare brain disorder that was just now being discovered. Hopes and dreams died in a small room filled with emergency nurses, Doctors and Neurologists. The news continued to come and with each new update, it got worse. I could go on and describe everything else that happened over the next 5 days that Elle was in the PICU at Wolfson Childrens Hospital, in detail, because I will never, ever forget it.

Instead, today I choose to reflect on all the amazing things that Elle CAN do, many of them things we were told she probably wouldn't do. Although Elle has many, many challenges ahead of her, she has already accomplished so much. Here is her amazing list...
At 21 months Elle CAN:
Roll around the living room for hours, transfer toys between hand, jump in her jumper while interacting with the toys that are connected to it, Elle understands and reacts to us asking her if she wants to "get up", "want milk", "Elle want to eat". Elle laughs hysterically when I give her big kisses in her neck or daddy throws her up into the air. Elle can hold her own bottle and even manages to get the top unscrewed about once a week! She can pick up and drink from her sippy cup and finger feeds herself. She eats orally and loves turkey, chicken, fish, black beans, peas, sweet potatoes, carrots, grilled cheese sandwiches, bananas, apple juice, fresh blueberries, strawberries...I could go on and on :-) These are all food that she feeds herself. Elle has even started to take steps when we hold her in a standing position !! She has always loved being upright. Elle is even able to sit up in a grocery shopping cart with the help of the safety strap. Most recently, Elle is beginning to show signs that she may be learning a few colors. We have a puzzle that we practice with. it has 5 puzzle pieces. Each a different shape and color. 7 times out of 10, Elle will grab the correct piece when I say the color !!

Elle's challenges remain...she is still unable to sit unsupported for longer than a minute and although she makes a plethora of sounds, she doesn't say any words yet...yet! Elle's seizures have become farther and fewer between and we pray that this too continues. Although we are always on alert. It has become second nature to me. At every given moment of the day I have an eye on Elle and am sub-consciously watching her. Her last 2 seizures were in July '09 and September 28, 2009. I continue to have high hopes for my daughter whom I love with all of my heart and all of my soul. Today is not about mourning all the losses again, but celebrating the achievements and the blessing of this amazing little human we call Elle !
Here are some of my most favorite Elle moments from the past 21 months :-)

Thanksgiving with The Addys

I always look forward to the Holidays and this year was no different. Not only was it Elle's 2nd Turkey Day, but it would be the first that she would actually be enjoying the turkey and all of it's wonderful accompaniments with us. We had the pleasure of being guests at The Addy's this year, the parents of one of my best friends. The Addy's have become very special to us for so many reasons.

Andy participated in a local run that morning while Elle and I decorated the Pumpkin Cheesecake that we baked the day before. O.K....Elle played on the floor and I decorated :-)

Traveling anywhere with Elle these days requires an arsenal of toys and a way to contain her. Today, that would require both her high chair, for eating dinner and her jumper for entertainment before and after dinner. The Addy's are so thoughtful that they had already planned for Elle's arrival. They even set a special place setting for Elle at the dinner table! You see, The Addy's are HUGE Pittsburgh Steelers fans and this was an opportunity to teach Elle about being a Steelers fan. Elle had a special Steelers placemat, her very own turkey dish and a very special finishing touch...next to her plate was Shannon's silver baby fork and spoon from when she was a baby and also a beautiful silver rattle that belonged to her grandfather when he was little! Now do you see why we love this family so much. They are so thoughtful, gracious, kind and loving.





We all enjoyed a delicious turkey and all the traditional sides to go along. Elle did very well at feeding herself turkey and especially loved Mrs. Addy's stuffing and Aunt Shannon's' green bean casserole. After dinner, Elle continued to burn off her dinner by jumping and jumping and jumping in her jumper for the next 2 hours while the rest of us relaxed on the sofa,enjoyed pumpkin cheesecake and took in some football.

We hope that everyone was able to enjoy a special day with friends and family!