Miss Haven's friend Shannon came over today. I hear the had a blast hanging out. Haven had so much fun. Haven and Shannon went to McDonald's and got a chocolate milk. Haven's favorite and best calorie and fat wise choco milk I can find. Kris told Shannon they could go through the drive thru but not go in. Then they came back home and asked Kris if they could go to Walmart. He said ok because Haven has pretty much been terrified to leave the house. She worries she'll get sick. He told them they could go for 1 hour - Haven never goes anywhere without one of us. Kris didn't tell me Haven was gone until I was already driving home. He knew I'd freak out and I was at work. But Haven told me all about it when I got home and she was so excited.
The picture above is what she wore today. She and Shannon got jewelery, nail polish, lip sticks, hair bands, and clothes when they were out. So pretty much Haven was spoiled today!
Tomorrow Haven has her appointment at 9:30am to scan her back. I told her everything that was going to happen so she wouldn't worry. Her only concern: how does she take her shirt off if Dad is taking her. So I made a deal that he can leave the room for her to change in to the gown and then he'll come back in.
I have posted a few bits of my issues on here and had some emails. So I will just do the brief version - not a full detailed version that family received last night.
Basically: I have 4 vertebrate that are killing me. Two are in my neck and two are in my lower back. Slight nerve damage in the neck. I could probably explain the lower back with gymnastics but the neck. I can't imagine how my neck got messed up. Anyway, without a lot of details on the neck, I also have costochondritis. Which I've had since college. But this is not helping with the neck issues. When everything acts up at the same time I get dizzy, lightheaded, and everything goes black while also not being able to breathe. We thought I might have just had Vertigo but after we got the MRIs back we now know exactly what's going on.
I got a lot of good meds yesterday. The first time I went in I got some meds for severe pain. All it did was make me very loopy but did nothing for the pain. So I was loopy and hurting. Yesterday, I got Percocet for the pain. It was honestly the first night I've not wanted to chop my head off or jump off a building. I had minimal pain. The night before I was ready to have Kris just punch me and knock me out so I could sleep. I am also on Atenolol. If you look it up it's a pretty crazy drug and extremely strong. High risk of heart attack. So the doctor is starting me off slow at 1 pill a day for a week and then next week I will go up to 2 pills a day. I have a few other meds but those two are the main ones.
Next week I will start physical therapy for my back. I'm not really sure what that entails but if it's anything like a chiropractor I will not want to go after the first visit. I'm hoping it's like in a pool or something. I can't imagine what they will do for my back. But I'm also going to have to learn to prevent the headaches that knock me out. So they will be teaching me some exercises for my neck to keep the blood flow open.
Whew.....the girls of this house are going downhill fast. I can't believe I'm only 33 and live in an 80 year olds body! I believe Kris is still in denial of my achies....which is fine. I'd rather have him focus on Haven...I'm a grown girl - I can take care of me.
This is a picture of Miss Shannon and Haven playing a couple weeks ago. I happened to come home early and was able to meet Shannon. Haven had told her I go to work so I don't have to meet her. So I wanted to show Haven that I would meet her. They had so much fun today - I'm so happy!
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