Sunday, December 12, 2010
Shortly after Sadie was diagnosed with Aicardi Syndrome, I remember thinking that there couldn't be anything worse than this disease...daily seizures, possibility of regression, a child who may not walk/talk, and a cognitive ability of 6 months to a year of age. This assumption was challenged last week when I attended my first moms support group.
The group is for mothers who have children with rare and life-limiting conditions. One woman's story in particular stuck with me. Her daughter was diagnosed with a rare condition called Batten's Disease. It is a degenerative illness where the body gradually breaks down. Her daughter developed normally until the age of 3 1/2, and is now quickly declining.
It was the first time that I realized how lucky we are that Sadie "only" has Aicardi Syndrome. I don't spend much time feeling sorry for myself or our situation, but not a day goes by that I don't wish Sadie's prognosis was different. However, to witness your child slowly deteriorate must be the worst kind of pain. It's all about perspective.
Sadie has been on her new seizure medication, Depakote, for a few weeks now. I'm sorry to say that we haven't seen much improvement. I feel like we're fighting a battle against the seizures. Occasionally they'll retreat, but then once they learn our tactics, they come back stronger. We're still on the medication merry-go-round and hope that we will find something that works very soon.
Despite the lack of seizure control, our little girl is growing like crazy. Sadie is now 7 1/2 months old and is already growing out of her 12 month clothes! She is in the 95th percentile for height and weight. She will start speech and feeding therapy next week. We've also enrolled her in one extra session of physical therapy so she gets some additional time working on her gross motor skills.
She also had another bout of trouble with her eye. Seems she picked up a virus last week in her eye, so we're again on daily eye drops to clear it up. I joke with her Opthomologist that we should get a frequent visitors card.
Sadie is still enjoying her solid foods. She likes her fruits the best, and I swear I heard her say "YUM" while eating her bananas.
We're looking forward to the holidays and getting to enjoy some good relaxation time with friends and family.