Ava was born 30 months ago on May 31, 2006. She was diagnosed with Aicardi Syndrome at 11 weeks old.
Ava’s seizures /spasms started when she was only two weeks old but each time they were dismissed as normal newborn constipation (the spasm only caused her to crunch her legs at first). This continued for several weeks and all the while, Ava never acted bothered by it. On August 7, 2006, things took a turn for the worse. Ava was up all night acting fussier than usual and her “constipation” was making her squeeze harder and harder. Instead of just bringing her legs to her chest like she had usually done, she was now starting to pull her right arm in, stick her left arm out, and jerk her head to the side…all in a slow rhythm. During her checkup the next day, she had another episode like we’d seen the night before. This time her pediatrician saw it and recognized it as a seizure. Ava was immediately checked into the hospital and her seizure activity began to worsen during the night. She was having trouble breathing during most of them and the hospital she was at didn’t have the proper equipment to help her, so she was sent to University Medical Center in Jackson. As soon as Ava arrived, she met her first doctor (a Pediatric Neurologist and Chief of Pediatrics at the hospital – lucky girl!) He ordered an EEG and later told us she was having seizure activity coming from all sides of the brain.
It took a while for the news of Ava’s diagnosis to sink in. On the outside, she looked like a perfectly healthy baby girl. Questions such as: “Could it have been prevented?”, “Could we have seen this coming?”, and “Could it happen again?” kept popping up left and right in everyone‘s minds.. Each time, the answer the professionals gave us was “no”, but it still took a long time to believe that. We’ve learned that sometimes it’s better to not waste so much time asking questions, and instead just enjoy the time we have with her.
During her first nine months of life, Ava was hospitalized three times because of her seizures. She’s tried many different meds including Phenobarbital, Topomax, Keppra, Adavan, Depacon, Klonopin, Diastat, ACTH, and others. Her seizures have now decreased to about 3 a day with a combination of Keppra and Topomax.
Ava has also fought a variety of spinal, vision, and gastrointestinal problems and has had difficulty eating since she was just a few months old. At 8 months of age, she was hospitalized for only being able to drink about two ounces of formula a day. She got an NG tube and eventually had a Mickey button placement. At 28 lbs, there is no longer a worry about her getting enough to eat!
In April of 2008, the curvature of her scoliosis worsened and was causing a disruption in her lung growth. By September of the same year, she had the Veptr surgery to correct the scoliosis and got a trach to help alleviate her breathing problems. Although it was a major surgery, she was off the ventilator in one day, off of pain meds within 3 days, and out of the PICU and into a regular room one week later. She’s a superhero girl! It’s now three months post-op and she is sitting with a nearly perfect posture. Her breathing has improved drastically and her lungs are growing. God is to thank for blessing her with such wonderful and talented doctors.
The first year of Ava’s life was certainly the most difficult for her and for most everyone that she’s involved with. Everyone had to do a lot of adjusting, accepting, and learning so that we could help her the best we knew how… As of lately, most of her doctor’s visits are for maintenance purposes, which is a very fortunate thing. Ava receives therapy four times a week that ranges from physical, occupational and speech. She isn’t yet able to hold her head up, sit up, or do most things that a child her age can do. Occasionally, she’ll roll over on her own, push up on her arms off her belly, and the smiles…well, we see them all the time now! She loves wiggling in her chair (dancing is more like it!), cuddling, and being read to. She’s a beautiful little girl and she continues to teach those around her everyday.