Tuesday, March 29, 2016
Monday, March 28, 2016
Little Miss had a hematology appointment today and we had a great talk with her hematologist. Little Dorrit still hasn't reached the 20 pound weight mark so she can't get a port yet. It's been over a year now since she had her surgery to place her central line and central lines aren't supposed to last forever. We are hoping that she will be able to get a port before she has to have the central line replaced, but we would love to explore the possibility of not having a port or a line. Ooh, twist!
Back in early February, something really exciting happened. A woman in Canada who has a young daughter with homozygous protein c deficiency found me on Instagram because I used #proteincdeficiency. She then commented on my blog and we started emailing each other. I can't tell you how excited I was to find someone else to talk to about this! Her daughter uses the same medication as ours but it is administered differently. And they only give her the medication every other day instead of twice a day like we do. Most interestingly, her daughter has never had a central line. Our hematologist is getting in touch with their hematologist in Canada to learn more about all of this and whether a treatment like this would be possible for us in the U.S. It was just so neat to finally connect with someone else about Little Dorrit's condition because I felt like I'd already scoured the Internet looking for this. And through the magic of social media, someone found me!
Sunday, March 27, 2016
Happy Easter, everyone!
Unfortunately, I failed to capture a family photo of all of us in all our spring attire at church today so these photos will have to do. Next year, I'll have to remember to plan ahead some so we actually capture pictures before church. Foolishly, I had the idea we would take some pictures after church but that turned out to be a lofty goal indeed since I somehow forgot that our 18 month old barely makes it through the three hours of church and always falls asleep in the car on the way home every Sunday. And the first thing the six year old does each Sunday afternoon is shed his church clothes in exchange for an adult sized T-shirt which he prefers to run around the house in. I'm sure if we told him it actually looked like he was wearing a T-shirt dress, he might actually put some pants on because only girls wear dresses. But, it's the sweet little things like that and the way he mispronounces "calculator" (klak-a-lator) that remind me that he is still just a little boy.
I know it's been a few months since I've written on our blog. Ha! And I think something I wanted to do this year was to blog more. But I think I just got carried away with life. I do enjoy writing and many things have happened in these past few months. I will try to catch you all up in my next few posts. For now, I will just close by saying we are all healthy and happy. And today, I am grateful #becausehelives.