Well, today our sweet Ashby has yet another procedure.
When we started these two years ago, they told us she would need six.
This is number 14.
I mean…I don’t even have anything to say about that. It sucks. There is just no better way to say it. The good news is that these procedures are working. They’re keeping her safe and healthy against nasty things like blood clots and aneurysms…but they’re invasive, painful, take about 10 days to recover from and require a lot of anesthesia. Right now, there is no end in sight to when we complete this process. Because her malformation is so complex, it is just taking longer and often, they have to repeat areas. At some point, they will stop and we’ll move back to debulking veins (another surgical procedure), and then when that’s over, if she’s healthy enough and her vascular system isn’t compromised, we’ll go back to this. As Ashby grows, her vascular system grows (just like it does for all kiddos!)…but that means her vascular anomaly grows too.
In July, Ashby was put under for an MRI with dye which told us a few things (she has an MRI with every procedure, but those do not use dye). It told us that she has no clots or aneurysms at this time (well, at least she didn’t in July) which is a HUGE PRAISE! It also told us that we needed to try compression garments (again!). We went to the compression clinic five times in August to get her a garment that worked and it never did. This was our second attempt at compression therapy (we tried when she was three), but it has been unsuccessful. It seems to cause more harm than good, so at this time, we’re unable to do it.
The good news really is that there is no news. Ashby isn’t complaining of pain, she’s not bleeding internally anywhere, and she seems very happy, healthy, energetic and ready to conquer the world 🙂 .
So far, school is going fantastic! Last year, I volunteered to be the room mom for Kensington’s class and this year, I get to be the room mom for Ashby’s. I love this so much because it means at least once a week, I’m in her class with her and the other students and it gives me a bit of peace to see how she’s doing. She loves her teacher, she has made new friends and so far, things seem to be going really well. She does have special accommodations at school that allow her a little more flexibility and freedom when it comes to things like PE and such, plus, her doctor gave a written statement describing Ashby’s condition, so that there are no questions from the staff there about what she’s capable of, what they should be concerned about, etc. Her teacher called me this week to say that in a very organic way, Ashby’s condition came up in class and that together, they shared a little bit about veins and what they do and how Ashby’s are a little different. One girl in class raised her hand and said that Ashby was special. I mean…how sweet is that?! So, we’re off to a good start at school. Thank you so much to those of you who prayed for her as she began this school year. I honestly cannot thank you enough. Your prayers are working! I will be forever grateful to each and every one of you.
So, this morning, we’re at the hospital ready to go for round #14. Sweet Ashby has been a part of our family for 3½ years now, and this will be the 18th time she’s been put under general anesthesia for a procedure. Please pray for her this morning. Pray that she has a peace in her heart, pray they’re able to make progress today and not just repeat areas from the past, please pray she is in little pain when she wakes up and is not nauseous at all. These are specific prayer requests and I would be honored if you would pray for each of them.
Thank you so much, friends! Words cannot adequately express how grateful I am each and every day to be this girl’s mama. xo