Check out my beautiful girl. This was last week. We were hanging out on the floor doing puzzles. I thought I'd snap a photo and she just had the most beautiful smile on her face. She's very happy because the scar on her chest where her port is can hardly be seen. She checks the mirror all the time.
We're going to have to make a note of her weight this Friday when she goes in for chemo. We think she is losing more weight because the port is actually sticking out. We used to not be able to feel it or even find it. Now it sticks out about a 1/8 inch. I gave her a huge hug tonight and actually lifted her up - which not only killed my back - but also made her yelp slightly because she said I hurt her port. Is it possible that she is starting to feel pain now? She didn't scream or anything - just a small yelp!
Her eyes are doing great. Both look blue as ever.
Kris will meet with Oncology on Friday - I am making a summary of the past 3 months for him to review with them. I will also list all of my questions in the book so he can ask them and anything I feel needs to be reviewed or monitored. I have a few things I want checked. I want to put a request in at her next MRI she needs a full upper body scan including head. With her prolactin so high I want to make sure we aren't missing anything up there.
I also want to make sure the pulse ox machine is calibrated correctly. Haven has been dropping in to the 95 range on the monitor and although that is not too alarming it is a change from her normal 97 rate. Plus it's not just a random drop - it has been staying at 95 for up to an hour at a time.
Well...I just stopped for a minute to think about it and yea...I'm probably going to annoy our doctors this week with my questions, recommendations, research, and requests. But it wouldn't be me if I didn't so I'm sure they expect it.
This past weekend for Mother's Day we planted a few trees and plants. I really wanted a Gardenia plant. I bought two last year and they died....I didn't realize they weren't winter plants! So this year I got another one and it's in a pot...so I can bring it in this winter.
This is a Princess Peach Tree (it's really called that) and Haven really wanted it. So of course, for Mother's Day she got a tree....I did all the work burying it. She refuses to walk in the grass because she doesn't like it touching her.
And this is the Cherry tree....a replacement for the Japanese Maple that died last year. I'm not very good at trees...so I'm sure the neighbors were laughing while I was digging and burying it. Probably saying - here is another tree that will die.
Oh well....they were only 20 bucks and we had a lot of fun!!!
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
Haven you have such a sweet smile.
ReplyDeleteThe trees all look great.
Big hugs, Heidi & Junior
Haven your eyes are beautiful. You look very good in green that is my favorite color. You also look like you might be losing weight from what I can see.
ReplyDeleteAunt Candy