So it's 11pm. All is quiet but the last few nights have been this way. Tonight I am hoping for sleep.
The past couple of nights Haven has woken up at 1am and pretty much woke me up about every 45 minutes through the entire night with extreme diarhea. Her stomach has been hurting for for an entire 2 days now. I have to rub it constantly. Tonight she asked me if I my belly ever hurt like that when I was little and what I did to make it feel better.
Then tonight her gums were bleeding really bad. I know her teeth were fine. We went to her dentist a week before her treatments started and they said her teeth were great and nothing was loose. Not to expect her to lose any teeth before age 7. Now with an infection they are starting to bleed and she is complaining of pain there.
It's crazy because we aren't allowed to talk of if we've noticed anything good or bad from the treatments yet because it's too soon to discuss that stuff. But there are a few things we've noticed:
1. Pottying - she is doing EXCELLENT on the pottying. I think we only have small accidents when sleeping now. Even with the intestinal infection - she makes it to the potty every time and she can wear the same diaper all day long.
2. Blood Pressure - Haven is now officially off the Amlodipine. She has been off for about 3 weeks now and her blood pressure is great. She was on this for 2 years and to be off this is awesome.
There are still many areas that we have no changes in and two main ones are food and sleep. Both are still crazy. Although I do think she is starting to feel pain - which is good but not something she is used to.
Anyway, I'm going to go to bed. I have a few hours before we're up for the night.
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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