How it all started...

It was May, 2004, Anna Grace was a healthy happy 4 month old baby girl meeting all of her milestones and giving our family great joy as did her big sister Camille (3 years old). We had spent a week at the beach with my parents and then a week at their house in Arkansas. The day before meeting Louis to come home to Austin, my Mom noticed that Anna Grace would turn her head sharply to one side for a few seconds. I noticed "it" later and once during the night. The next day on the way to meet Louis, I saw "it" again. I knew "it" look strange, but by the time I got a good look at her, "it" was over. I had Louis sit in the back of the car with her to watch her and make sure that I wasn't over-reacting. He saw "it" and wanted me to call our Pediatrician. I spoke with Dr. Bartlett and she said get to the nearest hospital, she is having seizures and it could be leading up to something bigger. I drove into Waco as fast as possible. After running numerous tests, they said that it wasn't life threatening and that they were going to airlift Anna Grace to Austin. We spend 2-3 days there with no change and without the doctors being able to tell us much. They then decided to send us to Texas Children's in Houston. Anna Grace and I were airlifted to Houston and spent the night in ICU. That is a very sad place. After being shuffled to 3 different floors in a week and Anna Grace being stuck, stabbed, and woken up every 2 hours, she was diagnosed with Infantile Spams. This is one of the worse types of Epilepsy. It usually leads to mental retardation, however Anna Grace did not have any lesions on the brain, so her case seemed to be the better of the worse. All of her tests came back normal.

That was one of the most difficult times for us. We had never been away from Camille for more than 2 nights and we felt helpless for Anna Grace. We often prayed and knew that it was out of our hands and in His.

Fast forward 2 and half years. Anna Grace has been on at least 12 different medications, which included daily injections, the ketogenic diet, and surgery in 2006 for a Vagal Nerve Stimulator. All of these have failed, although we do believe that the medications have controlled her seizures somewhat. She is currently on 3 different medicines given 3 times a day. In 2004 her seizures started out with her having several a day that lasted only a few seconds, and now they are only once a week, but it lasts 10-12 minutes. What a blessing that they only occur in her sleep!

Anna Grace has development delays. To her family, Anna looks like a normal 3 year old, but she is not walking, talking, and her arm movements are more like a 1 year old. A little shaky and not always accurate. She wears leg braces and is making progress, slowly. She can pull her walker and will walk with it when motivated. Anna Grace lacks cognitive skills that she needs to progress faster. The seizures slow her down signficatly. Anna Grace started therapy at 9 months through Early Childhood Intervention and now attends the Rise School of Austin full-time. They are both wonderful programs that I highly recommend. The web sites are located under "Useful Web Sites".

During Christmas Break 2006, we visited Le Bonheur Children's Hospital in Memphis, TN to consult an expert Neurosurgeon. He recommended brain surgery, Corpus Callostomy. This is where they separate the right and left brain. This will not eliminate the seizures, but it could reduce them and give doctors a better chance of finding where they start. After 4-5 months of healing, additional tests can be performed to try to pinpoint the starting point. If located, another surgery would be performed to remove the tissue causing the seizures. We are not guaranteed that her development would ever be completely normal, but we do know that the longer she is without a seizure the more vocal and active she becomes.

We are meeting with a Neurosurgeon on February 7 at Austin Children's Hospital for a consulation to see if we can do the surgery in Austin. This would be a huge blessing to be able to stay close to home.

Overall, Anna Grace is a truly joyful girl who smiles all the time. She is easily pleased, but will let you know when she is not happy. She climbs over and under everything. She LOVES to eat and will eat almost anything. Anna Grace laughes at her sister and is upset when Camille is upset. She loves Elmo, Big Bird, baby dolls, the DoddleBobs, and anything that plays music. She LOVES music!

Camille turned 6 in December and is doing so well in Kindergarten. In the first 100 days she is reading, writing out math problems, counting to over 100, and amazing us everyday. Anna Grace turned 3 in January and enjoyed a big cookie cake and ice cream with her family and best friends. She has started eating with a spoon and playing peek-a-boo. She looks at herself in a mirror or sees her reflection and laughs so hard. She thinks she is the funniest kid on the block!

This blog will be updated for significant updates, events, and special prayer request. This is my first time blogging and I appreciate you keeping a check on Anna Grace and our family.