Finally it stopped raining long enough to enjoy the day! This was the first day we actually took Haven out to a store since starting chemo. She didn't want to go...she said she was worried she might get sick. We went to Michael's because she needed some new arts and crafts stuff. She had a great time - there weren't a lot of people and she got to walk around the aisles looking at stuff. We hung out in the kids crafts section for a long time. We got some colorwonder books and some foam flowers to color.
Then we came home and we did crafts all day long. The sun was out and it was beautiful. Kris and Haven designed bike stuff (yes we practice child labor!) ha ha. She did do some great designs - not sure if they'll work or not! I fell asleep in the chair in the sun.
Then Haven helped Grandma B Honey make us dinner tonight. We had wonderful Bul Go Gi. Haven helped with the bean sprouts and made sure the cucumbers were ready. She loves to help in the kitchen. She said the other night when she grows up she wants her own bakery.
Haven also has a new pet (sort of). He's called Baby Fuzz Ball - he's a baby bunny that lives under our shed now. She feeds him carrots every day.
Haven was so excited about her bunny she was almost crying. She loves this bunny like crazy.
Here she is watching her bunny eat the carrot. We broke the no-sodium diet today and let her have a fish taco but it's been 6 weeks of no salt and we thought one day every so often won't hurt. You can definitely tell a difference after just one salty made fish taco. There is a major lump forming in the back of her neck now. Which is worrying us because I'm afraid her spine is going to grow crooked. The doctors said this would happen from all the medication and we just have to watch it. I'm trying to keep her back straight when she's coloring and doing her stuff now.
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.
Subscribe to:
Post Comments (Atom)
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&...
-
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...
-
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&...
No comments:
Post a Comment