I promise I’m working on a real, actual blog post with more than a few words. I wanted to take advantage of Wordless Wednesday to join in on Cleft Lip and Palate Awareness Week though! As you know, Brynlee was born with Pierre Robin Sequence as well as a cleft of the soft palate. She is scheduled to have her cleft repair surgery at 10 months old in September. Because of her cleft, she doesn’t have suction like normal babies- think of it like a straw with a hole in it- so she cannot take normal bottles. She has a g-tube and is tube fed almost exclusively now. She did well with the Piegon Nurser (special needs bottle that works by compression not suction) but then her reflux worsened and we had to stop oral feeds. We are hoping to try again soon!
Here month five post is coming soon. Lots of good news to report after a difficult few months!
Hi, I just stumbled upon your blog thru Greg’s website while I was looking at his portfolio. I just wanted to reach out to let you know your daughter is beautiful. My son was born (22 years ago) with a cleft lip and palate. It was a rough road, but we made it and he is amazing. Sometimes, meeting others who have gone thru similar things is nice. If you ever have questions, or want to talk my name is Sheila and I am here.