So...when you are lucky to have a ROHHAD child you get to do A LOT of laundry. I probably average 10 loads of laundry every week. I probably have more than 20 towels in the laundry room at one time. Our children get dehydrated so fast having ROHHAD that they have to keep drinking. I think Haven drinks a couple of gallons of water a day and her pee is still yellow and she still tests as dehydrated. A ROHHAD child can pee 2 to 3 liters of fluid at night.
So imagine waking up 2 or 3 times a night to change the sheets and pillow cases....sometimes a comforter. And it's not only wet - it's dripping! I have plastic on her mattress, plastic over her pillows, puppy training pads (because stores don't sell bad pads for kids), and towels in the bed to soak it all up. Still some nights everything is SOAKED! We've had to do complete showers in the middle of the night.
Well I have been checking out the Grayson bed pads for adults. They can hold up to 1600 cc of fluid but they are expensive. Maureen, Sophia's mom, is awesome. She sent me a few of these bed pads to check out and some adult diapers to try. I have been hesitant about buying adult diapers because I wasn't sure if they would fit her right. So this will be perfect to try out. I know some of the mom's double diaper.
Also - if you haven't checked out our links to the ----> right...........these are randomly updated with events, news, and our friends. Sophia's school is having a fundraiser for her and I would love it if you checked out her website and read about her fundraiser. Anything helps and they are only asking for $5!!! Check it out!!
Thank you Maureen for the help with the diapers and bed pads.....can you believe I'm actually saying "I'm excited to try bed pads and diapers!"......what our life has become!
Sleep well tonight.....
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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