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
Category: Uncategorized
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…
Doctor, doctor, doctor, DENTIST
This week has been a LONG one . So far we've been to 4 doctor appointments, blood draw, and we saw the DENTIST! This was Talynn's first time at the dentist and her teeth look great (yay for a positive outcome). We have two more appointments tomorrow and then hopefully a restful weekend. … Continue reading Doctor, doctor, doctor, DENTIST
The Unknown
The unknown is one of the hardest parts about having a child with a rare syndrome. Times like this help me realize that I need to rely more on God because he knows what is best for me and his timing is always right. I struggle when I know my child is not herself but … Continue reading The Unknown
Recent Sickness
Recent sickness ... My daughter Talynn was born with a rare genetic syndrome called Bohring-Opitz. There are fewer than 60 cases in the world. Yes, only 60 and I'm pretty blessed to have had one! On a typical day , Talynn is a happy, playful, rolling, noisy, sweet little girl. Since Talynn's personality is amazing … Continue reading Recent Sickness
