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 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 ... 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

#WRDD2016 #RareDiseaseDay #BohringOpitz

I never realized how quickly milestones are met and how easy it is for most little ones. I'm extremely thankful that little Tinlee can reach them with no one having to bust their butt teaching her how. On the other hand, it breaks my heart that Talynn has to work SO hard to do the … Continue reading Milestones

It is hard to believe that we are celebrating Talynn's SECOND birthday (1/27/16)!! This little girl has achieved so many things in the past two years.  We are truly blessed that God has placed her in our lives and we will continue to LOVE and CHERISH the moments we have with her! ❤

When we found out we were pregnant with Tinlee, we were shocked, scared, and our minds were going in all kinds of directions. Little did we know , this little blessing would be one of the best things that's happened to our family. Talynn didn't show much attention to her at first but now , … Continue reading Sisters

In 8 short weeks, we will be meeting Tinlee.  Talynn is going to be an amazing big sister! We pray that Tinlee will look after Talynn and help her with whatever she may need.  Even though we are nervous, we are ready to add another blessing from God to our family. Next week, I get … Continue reading 8 Short Weeks

Oh how I wished this day wasn't going to come... Our sweet Talynn had her first seizure yesterday morning. It was one of the scariest times of my life (the other was back in February when Talynn wasn't breathing). We always knew Talynn was at risk of having seizures due to two abnormal EEGs, missing … Continue reading Epilepsy