Everyday, I hear parents talking about how their child did at the t-ball game or dance recital, I look at photos of children interacting with one another , these everyday life interactions with children are the norm. Medically fragile children don't have groups they "fit in", especially ones living with Bohring-Opitz Syndrome. There are fewer … Continue reading “Fitting in”–Interacting with one another
BOS Family Meet-Ups
As many of you know, Talynn has BOS . There are fewer than 60 in the WORLD! People living with BOS have daily struggles and can turn from completely happy/healthy to sick/miserable in minutes. If it wasn't for advice from other families living with BOS I am not sure where we would be today. We … Continue reading BOS Family Meet-Ups
Benefit Hunt
We are extremely blessed to have an amazing group of friends , family, and community. There are so many people who are putting a ton of time into this benefit hunt and making it great. Thank you to everyone involved and everyone who plans to attend. It means more than you all know. Our family … Continue reading Benefit Hunt
Little Four Eyes
A few months ago, Talynn's pink glasses fell out of the diaper bag and her aunts dog got them. So we just used her navy ones until, we noticed ALL the scratches on the lenses. Talynn loves to chew on things so her little shark teeth had gotten a hold of the lenses pretty badly. … Continue reading Little Four Eyes
Talynn’s Journey & BOS Awareness Day
Talynn is a little girl living with a rare genetic syndrome called Bohring-Opitz. There are fewer than 60 cases in the world. April 6, 2016 is the awareness day for BOS and we need your help. Please share, like, and invite your friends to our social media sites, request your free awareness products here, and … Continue reading Talynn’s Journey & BOS Awareness Day
Those bright blue eyes…
Those bright blue eyes look up at me and melt my heart. I wish I could take all the pain away and help you feel better. It's like you can never catch a break. We pray everyday for God to look over you and your healthiness and I know he is doing just that. … Continue reading Those bright blue eyes…
Raising awareness for Talynn and BOS !
Would you like to help raise awareness for Talynn and BOS?? Click here to request FREE BOS awareness ribbons, stickers, and cards. Don't forget to wear your gold and denim on April 6! http://www.bos-foundation.org/bos-awareness-day
Finding the Positive
A few nights ago Talynn started having a bad cough (on top of everything else). We have started her breathing treatments again. I wish she didn't need them but she enjoys it. Plus, look at her holding it all by herself! That's an awesome developmental skill if you ask me 😊. Update: Tay slept … Continue reading Finding the Positive
Your stories: Talynn’s story
A very big thank you to Chad and Taylor for sharing their daughter, Talynn’s, story of her journey through her first year of life, and her diagnosis of Bohring-Opitz Syndrome. You can read more about Talynn’s journey at her blog, Open Eyes, or follow them on facebook or twitter. – Ann Z Talynn Gurganus was born on … Continue reading Your stories: Talynn’s story
One long week…
We have finished up 9 appointments this week with various doctors and therapists. We are exhausted. I'm mentally, physically, and emotionally drained. These trips to and from the doctor offices an hour away can wear you down. I'm just trying my best to see my sweet Talynn happy again. She isn't the same child … Continue reading One long week…
Talynn's Journey 