Monday, March 28, 2016

Just another appointment

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!

2 comments:

Jani said...

That is so exciting Aria!!! What a blessing to find someone else and be able to compare notes on Little D's treatment!

A Little Tidbit: said...

Amazing and a miracle! Modern technology all the way around. You've really been doing your homework on this, scouring everything you can to read and come up with answers. Now a blessing has come forth for you and this other mom. Love reading your blog, don't do FB so your blog gives me a chance to see what Aria and beautiful family are doing. If you are out this way, stop in and say hi. Things are so different (progress) at Moran. Hugs!!