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. 

The Baptism

Today Caroline was baptized. She has been looking forward to this day for a long time and we are so happy for you, Caroline. 

A Visit

I planned a tea party for the kids today. Nothing really big - just a few things to eat and some hot chocolate. I had planned to take some pictures as we haven't had a tea party in several years. Then my oldest daughter stopped by with her kids and somehow I started taking pictures of her youngest, Finn, and forgot all about getting pictures of the tea party. At least I got a few pictures of Finn. 

Mark-My-Time

I forgot to record our Mark-My-Time for January so I will do it now. We read 27 hours and 11 minutes for the month of January and we have started over for the month of February. Since I'm so late recording this I am not even going to put down the books we read. But, we are reading two books right now and they are The Meanest Doll in the World by Ann M. Martin and Laura Godwin and On The Banks Of Plum Creek by Laura Ingalls Wilder. The only reason we are reading two at a time is because we read one just for pleasure and the other one we read during school for literature study. Though, we do love both of them. We already read The Meanest Doll last year, but we have never read On The Banks Of Plum Creek - at least not these kids. 

I feel like I have not read as much as I should lately and that's strange as winter is such a good time to just relax and read a good book. We are getting back into reading more and more and the kids really do love it. Sarah thinks she can't eat breakfast unless I am reading and she will actually wait as long as it takes for me to get out a book and start - then she eats. Bethany is pretty much the same way. I think she loves reading the most of anyone. She is the one that asks constantly if we can read - and Tess is probably a close second. 

Stable

Joey had his MRI on Wednesday this week and he is still stable. This is wonderful news, again. We always stress the few days leading up to the MRI and while waiting for results. But, now we can relax a little. I thank everyone that prays for him. 

A few random pictures from yesterday.