Amanda I.

Amanda's surgery is scheduled for Friday, October 14th at UCLA hospital. Below I have posted Susan's earlier description of Amanda's situation. Since Susan's message below, the diet and other medications have not been successful in reducing the infantile spasms and other seizures. UCLA has developed a surgical technique to isolate the area of the brain triggering the seizures, so that they don't spread to the other side of the brain.

Thanks to all for your prayers and support.

Dana

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May 27, 2005

Our wonderful little angel Amanda turned one this week!!! I have attached some birthday pictures so you can see how big she is getting. I also wanted to thank all of you who have prayed so diligently for her during the pregnancy and during the last year. Your prayers are truly making a difference. The next few paragraphs summarize Amanda’s amazing journey through her first year, and outline what she has in store in the coming months.

As many of you know (and many do not), Amanda had a stroke while she was still in the uterus. The fact that she survived the stroke itself has amazed her doctors. During her first 6 months of life, Amanda did very well. She was a little delayed in certain areas but was progressing well.

Then in December, she started having seizures and was diagnosed with something called Infantile Spasms, a very severe form of epilepsy of infancy. Despite the grim prognosis associated with this diagnosis, Amanda has significantly outperformed the mean and continues to have the most amazing and loving spirit you could ever imagine.

After her initial treatment, she remained free of the Infantile Spasms until late March when a brief virus initiated a relapse which then caused her to lose certain skills that she had previously acquired. As she continues to rebound from the relapse, she has been regaining many of these skills.

Although the Infantile Spasms are currently under control, she continues to have other types of seizures despite being on the maximum possible dose of two anti-seizure medicines. In spite of all the medications, shots, and continued seizures, she has a very engaging personality and loves to smile, laugh, and play. She continues to progress well in her therapies and is truly a happy energetic little girl.

Amanda has a truly wonderful neurologist in Raleigh, NC and her case has been reviewed by two leading teaching/research hospitals to evaluate treatment options for her. We are thrilled that she has been accepted into the ketogenic diet program at Johns Hopkins as a treatment for her epilepsy. Assuming all pre-admitting blood tests come back acceptable, we are scheduled to start the diet on June 6, 2005. She will be admitted to the hospital and will stay there until June 10.

Amanda is truly our hero. In the 12 months I have had the privilege and joy to know her, she has taught me more than any person I have ever known. She brings joy to every day and continues to teach us everyday what it means to be a survivor and to appreciate every moment of the wonderful life God has given us. I know that God has a wonderful plan for her on this earth. She has already blessed me and my family more than words could ever describe. I am so thankful that God has entrusted me to serve as the mother to this precious gift. It is in this spirit that I humbly and gratefully ask you to remember Amanda in your prayers as she heads into the next several months of medical treatments. Also, please feel free to put Amanda on any prayer lists you can think of and/or to pass on this prayer request to anyone you think might be willing to pray for her.

Prayer can and does make a difference. Our Lord is the great physician and prayer is the strongest medicine out there. We thank you for your continued prayers, support, and friendship!! God puts special people like you in the lives of those who need you most and we sincerely appreciate you being in our lives!!! Thank you so much and may God Bless you and your families always!
~Susan