Rare Disease Day

Today was Rare Disease Day. A disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. Cystic fibrosis affects approximately 30,000 people in the US. Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. It causes the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, the intestines, the bronchi and often resulting in respiratory infections. 

Bethany has cystic fibrosis and was diagnosed as a baby as a result of the newborn screening done in the hospital. We then had Bethany tested at our local CF clinic and she came back positive. I had no idea at that time what was involved and how many hours we would spend every single day on treatments. But, she has done so well and we are so thankful. We are blessed. 

Baking

Luke was looking for something to do after his nap, and since the kids all wanted brownies I decided he might like baking. He jumped right in and wanted to do everything and didn't want any help - though he definitely needed a lot of help.  He kept telling me he was mixing, mixing, mixing. He had a blast and I got some pictures and everyone got brownies. 

I have been a little bored with winter so I enjoyed pulling out my camera and taking a few pictures of Luke baking - just something a little different. I can't wait till warm weather and being outside more. This hasn't been that bad of a winter for me - I am usually so sick and tired of winter that I feel like I can barely make it till spring, but this year winter seems to have flown by and I just know spring will be here soon. I have so many things planned. 

As soon as we got the mix in the bowl, Luke wanted to taste it. He didn't like that we would not let him lick the brownie powder out of the bowl before we even got started. 

This is what happens when you take his control away and tell him you need to finish up and put it in the oven. He said he needed to mix more!

Memories

I was going through old pictures tonight as I do occasionally. I went back to when Piper and Tess first arrived home in 2016. It has been almost exactly three years, but in one way it seems like they have always been here and in another way it seems like it was yesterday. Hard to believe it has been three whole years. I picked a few pictures from when they first arrived. I think they had been here about three weeks. It was a wonderful time of getting to know them - except the kids were sick almost all the time. The sickness was not fun. 

I still remember the day we met Piper. We walked into the room to wait and they brought her to us. She went right to us with never a tear and was laughing and playing. That night we were absolutely exhausted - she was literally all over the place. She was running and jumping and grabbing everything in sight. She seemed to never tire. She still is quite active and runs much of her day, but I am getting very used to it. She is such a blessing to us. 

Tess was brought to our hotel room. We flew from Piper's region to the region Tess was in and went straight to the hotel and within 15 minutes or so Tess arrived. She was pretty quiet and not nearly as social, but having Piper with us helped and they immediately started playing. I remember thinking that we finally have both of our girls and how blessed we were - and how tired we were. 

In this last picture of Tess playing outside she looks so young and small. 

I saw this picture of Bethany in the same 2016 folder and had to post it, too.