Site Network:

Joselynne Rachelle Jones

The story begins Christmas of 2010 when Josey's father and I found out about the blessing we were to recieve. I had an uneventful pregnancy for the most part. We were getting routine ultrasounds and during my 32 week exam we found that Josey's left ventricle of her brain was measuring slightly out of range. We followed the progress on the next ultrasound and had the same results so a level 2 was ordered. That ultrasound had the same findings and also was told that her corpus collosum was possibly missing. We were told she might have dandy walker syndrome and would have some form of learning difficulties, but would need to follow up once she was born with a ultrasound of her brain. Fast forward and on August 2nd 2011 Joselynne Rachelle Jones was born. It was the happiest day of my family's life. She was perfect and all thought seemed to be a fleeting memory of anything being abnormal. Josey was progressing right on track till the end of the year approached and we welcomed the new year. Around Christmas 2011 Josey started having this tick where her mouth would pull to the right and her eyes would deviate to the right, we just thought it was some new thing she had learned and didn't think anything of it, until January 1st, she had the first of multiple seizures that day. We took her to the ER in Effingham and she was air lifted from there to Cardinal Glennon. The care she recieved while in the hospital was amazing. We took her home a few days later and have now been adjusting medications to help control her seizures. Josey has been diagnosed with Aicardi syndrome which is a rare genetic malformation. We also have her involved with the early intervention program and have met wonderful therapists that are going to work with Josey to keep her progress moving forward. She is going to learn at a different pace, but she will be the happy little girl everyone fell in love with from the start!

Update April 2013

Josey has made a lot of progress since my last writing. She can now sit unassited. She does require help getting into that position, but is steady once there. She also loves to roll around. Still using her bottle though we are working very hard with a straw sippy, which she uses great just won't hold it. Josey has very little verbalizations, but has made some strides and now babbles a little and even says Mom from time to time. Food is getting there. She still doesn't understand the concept of chewing, but does it without thinking so soft foods are good. I am really hoping to have her walking by age 3. Josey has the best smile and cutest laugh imaginable. We have changed neurologist and added outside therapies to the mix also. Lots of changes, but all is good. We are down to two anticonvulsants with very good seizure control. She was seizure free for about 9 months, but her last EEG showed some activity. Although we have not faced many of the challenges that most of these families have, we are making our own strides. Josey is happy and healthy which is all that matters.

Follow our Josey on her site!

www.caringbridge.org/visit/joselynnejones

contact the author

04-25-2013