Her Story...
Alexis was born a little early. She was 35 weeks and 5 days. She had a little trouble like most babies born a few weeks early with respiratory being her main issue. We were told because she was not that premature we would be lucky and within a month or two everything should calm down and she should do just fine.
Alexis settled in with our family just fine. Medically speaking she had a rough time. We were discharged from the NICU after a 10 day stay. We went home on an apnea monitor. She was challenged by severe GERD, constipation, breathing issues, formula intolerance and eventually got diagnosed with failure to thrive. At three months we were enrolled in a local program called Help Me Grow. She began with a screening that determined she was developmentally behind in fine and gross motor skills. Our in home therapy started then and with my over zealous strive to catch her up she began to get stronger and stopped favoring the right side. Developmentally on a physical level she was about 2-3 months behind. But, around 9 months everything changed! She really started gaining weight, getting stronger and by her 1st birthday she went from being under 7 percentile for all measurements to 30! She was about 13 months when she began walking independently. At one year she was able to give up her apnea monitor completely and her dad and I thought the worst is over!
From Alexis's firs birthday October 2013 till recently July 2015, Alexis has continued to do what her dad and I thought was very well medically speaking. I had always noticed that she had long starring episodes but was afraid to bring it up with the doctor thinking that I was just some over worried mother role. It became also more apparent that even though physically she was doing well, her speech was really lacking now and she kept having ear infections!
While in the process of getting her set up for PE tubes, announcing our pregnancy to family and friends at 12 weeks and just reveling in the joy to come. My husband's and I's world literally came to a halt on July 8th. Like the day she was born, I don’t think I will ever forget this day. We had just gotten home from my 14 week OB appointment. Not soon after I had given her a snack and a drink Alexis had her first grand mal seizure. What felt like a good minute to figure out what was going on I knew in my heart this was a seizure. I called 911. It seemed to take them forever to get there. Everyone tried to ask me how long did the seizure last. I honestly don’t know but it was a long time. Enough time for me to call 911, tell them what is going on, where we lived, listen for directions on how to care for her and contact my husband (which then took me about 3 or 4 minutes).
Our story at the local children’s ER and our stay is a whole other story that you will soon find under blog entries. Basically in a nutshell we were in the hospital for 5 days. She had blood work taken, CT scan of her head, MRI of her brain, and MRIA/MRIV with contrast of her brain, EEG, and an EMU study. We found out that she had seizure activity in the right side of the brain, and we found out she had an AVM...
This is where Our Journey with Alexis's AVM started