Last week was quite the week. We had a lot of excitement on Tuesday in our underwear drawer!

That is NOT a fake snake and I was on my own with the kids in the house when I found it. A wise woman once told me that the only good snake is a dead snake. It’s me. I’m that wise woman. I took care of that nasty thing and left the evidence in the driveway for Austin to discard. Last Tuesday was also Ellie’s first day of ballet class. She had a lot of fun but says she’s ready to move on to gymnastics. 🤷🏻‍♀️

I haven’t uploaded these to my computer yet so…

Wednesday was an even more difficult day for me. We finally got a call from Children’s Mercy to confirm our suspicions that Emery has Marfan Syndrome. The night he was born, I looked at him and I just knew. I saw it in his facial features and his toes. I knew. We’ve always known the chances of having a child with Marfan Syndrome but it hasn’t made the reality of it any less difficult for me. Before we got the results, Emery had seen a cardiologist. His echo showed that his aorta is on the high end of normal so we will go back in for another echo in 6 months. For those who aren’t familiar with Marfan Syndrome, one of the major complications that it causes is dilation of the main blood artery of the heart, the aorta.

Next week Emery has an appointment with an ophthalmologist at Children’s Mercy to look at his lenses and make sure everything looks good in his eyes. Another common complication of Marfan Syndrome is lens dislocation.

Aside from keeping an eye on his Marfan Syndrome, we are also watching his skull as his soft spot is VERY small already. We are measuring his head regularly to be sure it is still growing. If it stops growing that could be an indication that his skull plates have fused too early.

He’s normally a really good baby! He has VERY sensitive skin but we have finally found a soap and lotion that don’t irritate him. If he has something to say, he says it with his eyebrows. He loves for me to hold him but isn’t crazy about other people yet. He’s starting to talk and smile at us more and more. Best of all, he still sleeps for about 7 hours at a time each night! 🙌🏻

Please pray for us as we go to all of these appointments and continue to make decisions about his healthcare. Pray for the doctors that we are trusting with his care and please pray for Emery as he continues to be poked and prodded. He will have to endure this the rest of his life and I’m struggling with that.

Finally, some pictures because I know that’s why you’re really here! If you can’t tell, Gran is a huge fan of his brother!