Hello everyone, my name is Brooke Elzabeth Miller and I am now about 8 weeks old. A few days before Christmas I was diagnosed at Phoenix Children’s hospital with Aicardi Syndrome. After this heartbreaking news, my family has been so worried about me and how to take care of me but after finding this group have found comfort and hope. I hope as I grow I can get to know you and that my mommy, Brittany, can get advice on how to take care of me. I am a sweet natured little angel who is SO loved by my mommy, my daddy, and my two big sisters. Everyone who meets me falls in love with me and thinks I am so snuggly and sweet!
Well it has been almost 5 months since we found out that our sweet Brooke has Aicardi Syndrome and it has been a roller coaster of highs and lows. Brookie is now 6 months old and is the light of our lives. She has such a sweet, loving, patient personality, unlike her fun but sassy sisters, Juliette and Audrey. She is often found in the lap of Mommy, Grandma, Daddy, really anyone who is around her wants to snuggle with her. We call her snugglebunny. She was smiling and even laughed up until about a month ago, when the seizures increased and her development started regressing. It has been rough on her family, they miss their happy, alert baby girl! Brooke is currently averaging 12-15 infantile spasm episodes per day. She sleeps 90% of the day because she is exhausted from all of her seizures. She takes Zonegran, Keppra and started the Ketogenic Diet a few weeks ago. Honestly, none of these options are really helping the way we would like so we will soon switch to a new medication.
Brooke has PT 2 x a week, OT 1 x a week, and meets with a vision therapist 1 x a week. She loves to be talked to, read to, and really is content to sit her her papasan swing and watch her sisters play.
Despite her challenges, Brooke knows she is loved and her presence makes our family that much more united in living righteously so we can be together forever and see Brookie whole. While many days are filled with feelings of sadness, most often Brooke fills our home with joy. She has already taught us all unconditional love and has everyone she meets wrapped around her tiny finger. Brooke is small for her age, and is our little cuddlebug. It comes in handy because Mommy cannot resist putting her down!
We hope for more progress in reducing her seizures, but in the meantime we are counting our blessings that we get to have her in our home.