Monday, July 26, 2010

Sadie update - July 2010

Sadie will be three months old this week! How time flies. She is a very happy baby with a very feisty personality. I call her my little drama queen. She does not like to be woken up ( any of us, really?) She is quite dramatic about it and has a 5 minute ritual of stretching upon waking up. She also smiles quite a bit, she loves to be talked to, and will try to join in the conversation.

Sadie started her initial seizure medication, Topomax, on the day of her diagnosis. We've recently added a new seizure med, Vigabatrin. Sadie is still having 10-15 clusters of seizures a day. The vigabatrin doesn't seem to be helping. We are planning to put her on the ketogenic diet in late August (the first date the hospital has open). The ketogenic diet is a specific diet regimen designed to reduce the occurence of seizures.

Sadie will see an ocularist this week to discuss options for her right eye, which is smaller than the left (micropthalmia). We have heard that many children with micropthalmia are fitted for conformers which will allow her eye sockets to grow at the same rate . We're still not sure if she will have vision in this eye and have begun patching the "good" eye for 30-60 minutes a day to stimulate any vision that she may have in the "bad" eye.

Sadie will also be in the hospital this week for an overnight EEG. The EEG will give us more information about her brain activity in relation to her seizures.

If there's anything we can do...

"If there's anything we can do..." is a phrase we often hear from well-meaning friends and family. Is there anything you can do? Yes, there is.

1) Learn about Sadie and her condition.
2) Don't be afraid to talk about it. Her condition consumes our life. Ask questions. Don't worry about saying the wrong thing.
3) Pray. I still believe in the power of prayer. While I don't think it will make Sadie's condition go away, I can't help but hope that these prayers will help her reach her greatest potential.
4) Listen. It may not always be easy to hear about Sadie's seizure meds or her latest challenge, but it is helpful for us to discuss it.
5) Give money. Not to us - to the Aicardi Syndrome Foundation. ( The foundation sponsors a bi-annual conference for families affected by Aicardi. They also provide great support for reseach into the Syndrome. If you're looking for a great cause, and have a marathon, 5k, cocktail party, Friday night, etc., please consider turning it into a fundraiser for the Foundation.

Welcome Sadie

We welcomed Sadie Elizabeth McCann into the world on April 29, 2010. On June 18, 2010, Sadie was diagnosed with Aicardi Syndrome, a rare genetic disorder. The following blog will chronicle Sadie's accomplishments, adventures and give updates to friends and family who are interested in her condition.