Can you know your best friend to well? Naahh :-)

I am very fortunate to have the girl friends that I have. They each bring something so wonderful to my life and I am thankful for each. My best girl friend, Carolyn, and I have know each other for about 14 years. We have shared many laughs, to many tears, an endless amount of meals, vacations, secrets, and even the midnight hot fudge sundae at the Ghiradelli store in Chicago. We're like sisters. So when I had to start thinking about the Christmas gift I was going to surprise her with this year I didn't have to think to hard or to long. Months ago, she introduced me to a fantastic perfume. Acqua di Parma. That was it, the perfect gift for Carolyn! I knew she wasn't going to buy it for herself. I knew she'd never expect it. I found it at Saks and had it shipped. As i expected, she was totally excited and surprised and that made me happy. She so deserved it and more for being such a wonderful friend. She reminded me that she had shipped a gift to Elle and it should arrive by Saturday, which it did. After opening all the wonderful gifts she sent Elle, there was one more gift to be opened and it was for me. I unwrapped the wrapping paper to reveal a Neiman Marcus box. Up went the Scooby Ear...Hmmmm, what could this be. I opened the box and as I started to unfold the tissue paper inside I saw a faint hint of yellow showing through. I was so excited and at the same time, laughing. It was a bottle of Acqua di Parma!! We had just succeeded in sending each other the same gift! As much as I couldn't believe it, I wasn't surprised it happened. Bottom line is that we each wanted it for ourselves, but bought it for one another first :-)
I love my best friend!!! And I love my gift!! Thanks Carolyn, your the best.

Elle's First Christmas

Today wasn't any different than any other day to Elle, but for us it was very exciting! The babies first Christmas!! We attended a candlelight service on Christmas Eve with our friends, Jen & Clay and their little guy, Cayden. I made dinner for Andy and I and then went onto tracking Santa's sleigh through NORAD. I LOVE IT! (NORAD) North American Aerospace Defense Command. This is a bi national (USA-Canada) control center, charged with warning of attack by aircraft (or missile) of either of these countries and organizing air defense in the case of such an attack. ANYWAY...on Christmas Eve they track Santa's sleigh so that boys and girls can see where in the world he has been and where he is headed. No matter what you believe, it's pretty darn cool. We left a plate of chocolate chip cookies out for Santa and headed off to bed.

I'd love to say that we woke up to a snow covered yard, but we live in North Florida, so we put on shorts and started the day. Elle received so many thoughtful gifts from all the people that love her. As expected, the bows and wrapping paper were the big hits.

I think I have mentioned before that it always amazes me when people go out of their way to do kind things for others. My good friend Julie had invited us to have dinner at their home on Christmas Day. I received a call from her early that morning to tell us that, regrettably, they had to cancel.
Her whole family had been up sick all night. "Don't worry though, we'll have your Christmas dinner all packed up and delivered to your house at 5p.m." she said. I told her not to worry about it but she insisted. And at 5p.m. our dinner was delivered. That was so kind and thoughtful. Thank You Julie !! And dinner was delicious. It was even accompanied by deviled eggs. MMmmmm! I love deviled eggs, although I have never made them. I might be lucky enough to have them every few years so when they do show up it's a real treat.

We hope that everyone had a very Merry Christmas!

A Message From Elle

Hi Everyone

I'm writing to let you know that I got to come home yesterday. It's been a really tough week, especially since I'm only 9 months old.

I don't quite understand everything that's going on, but my parents told me that I'm going to be ok, and that the bigger the challenges are that someone faces, the bigger that person becomes, so I'm going to be huge. Oh, my daddy says that I have to make sure and exercise so that I stay healthy while I get huge, whatever that means. What's exercise?

Thank you all for all of your thoughts and prayers. I really appreciate it. It helps to know that I have lots and lots of people thinking of me and sending me prayers and healing energy. Although my prognosis is better then initially thought, I still have a long road in front of me and need all the help I can get.

I hope to see you soon.

Love

Elle

The Worst Week of My Life

On Monday morning when we went in to say good morning to Elle she was very unresponsive. I'd describe it as catatonic.

We rushed her to the emergency room at Wolfsons Childrens Hospital. When they checked her vitals her temperature was 92.

In an effort to determine what was going on, they hooked her up to a EEG and immediately discovered she was having a seizure. They gave her an injection to control the seizure, and took her to get a CAT scan.

The CAT scan showed too much fluid in her brain ventricles, so they did an MRI. The MRI showed that her brain cortex did not form properly, a combination of conditions called Lissencephaly and Pachygyria, both of which are considered Neural Migration Disorders, meaning the brain didn't form properly long before birth.

All three of those terms cover an umbrella of conditions, just like if someone was to say they had cancer. Just like with cancer, there are many different types, each of which has its own origins and its own range of symptoms, ranging from mild to severe.

There's much we don't know yet, beyond the fact the she has an extremely rare genetic brain anomaly. In addition, we found out just a couple of weeks ago that she has hip displaysia, that will need to be treated.

There are some things we do know:

1. Her condition is not degenerative thank God
2. The neurosurgeon said no surgery is necessary.
3. Once they got her on seizure medication, she has had no further seizures and has been completely stable since Monday. The seizure did not cause any damage whatsoever. Although it took a week, she is 100% back to her normal self: a happy, giggly, smiley and squirmy beautiful little girl.
3. The orthopedic surgeon said that surgery should take care of her hip without any complications. Even with her neurology issues he feels there is a chance she may walk although the Neurologist feels that there is a very good chance she will never speak or walk. We, however...believe otherwise.
4. 90% of children who are prone to seizures outgrow it by age 2.
5. Aside from the brain anomaly, she's probably more healthy that most of the people you and I know. Heart, lungs, metabolism, immune system, etc. is all perfect
6. Given her condition, she has developed quite well so far, and is expected to continue doing so. Exactly what physical and mental developmental issues lie ahead no one knows, except for God.

I'm extremely grateful for the care she (and we) received at Wolfsons. She has a Neurosurgeon, Neuroradiologist, Neurologist, Geneticist, Orthopedic Surgeon, and more nurses, physicians and residents than I can count, all making sure she received the absolute best care available anywhere.

We have a very long road ahead of us. We're still figuring out specifically what's going on and what to do about it.

I'm going to believe with every fiber of my being that she will sit, and crawl, and walk, and talk, and read and write. I believe she'll go to school and graduate from college. Can I guarantee that by believing those things that any of it will happen? Of course not...There are no guarantees in life for any of us. But I can guarantee what will happen if I believe she can't do any of those things.

God gave Elle to me for a reason. He knows we'll do whatever is necessary for her. Very little is known about how the brain develops. We will find a way or we will make a way.

Thoughts, prayers and healing energy sent our way are much appreciated. We need them.

Love

Lori & Elle