Help us raise some funds for Annika and the Foxg1 Foundation.
Annika was born on March 19th, 2012 after a fairly uncomplicated pregnancy. She was tiny, weighing only 5 pounds 13 ounces, but we were not concerned because our older daughter was tiny at birth as well. Things were going normally until her 2 month check-up. Her head was falling off of her growth chart. Her dr wanted her to have an ultrasound to check to make sure everything was developing normally. We took her in for the head ultrasound and just as they were finishing it up, the radiologist came in and said that they were having trouble finding her corpus callosum, but that they were unable to get good images. They suggested that we get an MRI to confirm their findings, or lack thereof. We took Annika in 5 days later to have a sedated MRI. At the time, we honestly did not think there would be any bad findings. However, as we would find out a few hours later, our world was about to be turned upside down. At the end of her MRI, we were told that Annika did indeed have Complete Agenesis of Corpus Callosum, meaning she was completely missing her corpus callosum. We took our two month old baby home and cried for what seemed like hours. We googled everything we could find about ACC while we waited to hear from her Dr. We met with the Dr a few days later and she discussed with us everything we would need to do for Annika. We discussed specialists, therapies, what to expect and everything in between. This was the start of our journey.
The first specialist we met with was a neurologist who discussed with us what her brain was like and how she expected it to develop and what we could expect developmentally. She also suggested that we should have Annika genetic testing done because usually ACC is a result of something wrong with the chromosomes. So next we went off to get her genetic testing done. We had her tested in August and it wasn’t until September that we got her results, and October until we were able to meet with the geneticist.
When we met with the geneticist in October, we finally had our Foxg1 diagnosis. At the time, the dr told us how this had just been discovered in 2009 and there were not that many known cases of foxg1 and that there was not a lot known about it. Not a lot of research, not a lot of awareness, not a lot of anything. She was unable to tell us much of Annika’s prognosis except that she would have mental retardation. We would just have to wait and see what her development would be.
We tucked that diagnosis in the back of our minds, because at the time we were concentrating more on her ACC diagnosis because there was so much more literature out there on that. We joined ACC support groups and started looking into getting her services for therapy and such.
It wasn’t until May of 2013 that we really discovered what our life with a fox had in store for us. It was May that Annika had her first bad fever. I brought her into the ER to get it checked out and they diagnosed her with pneumonia. Just as they were about to discharge her, she had her first seizure. And they her second. And then her third. Needless to say, she did not get discharged. She was admitted and continued to have seizures for the next 24 hours. The next morning she was hooked up to her first eeg and they monitored her for 24 hours. We did not see any more seizures in this time, but the eeg did pick up 3 of them. So she was unhooked, discharged, and sent home on her first seizure med. Over the next 12 months, she continued to have numerous seizure and we added in 3 other meds and were on a continuing med roller coaster. She had about 15 hospital stays during this time for seizures, pneumonia’s, rsv’s and various other things. The last hospital stay ended up with her getting her g-tube placed.
After her g-tube has been placed, Annika has been a completely new kid. She has been growing more, “talking” more, and really has been making strides in her development. She has four therapies a week and goes to preschool two days a week. She is thriving and is one of the happiest kids ever!
She is working hard on communicating. She is working hard on rolling over and trying to crawl. While we don’t know what her future will hold, we know that she is working as hard as she can and loving life in the process. She is a great joy and everyone who meets her falls in love with her instantly. We did not expect to end up in the world of special needs, but we wouldn’t trade any of it for anything in the world!
Food will be provided by Lola’s Lakehouse on behalf of Irish Born Hospitality.
The menu is as follows:
-baked chicken breasts with sauce supreme
-home style au gratin potatoes
-ziti pasta with vegetables and a spicy marinara sauce
-corn o’brian with pearl onions
-a seasonal salad with Lola’s house dressing
$12 a plate, discounted for children — 100% of proceeds go to the cause.