Monday, January 25, 2010

Quick Update

Well, sleep is coming back to the house... at long last, thanks to a wonderful breakthrough.

When we were heading to MN, we couldn't think of how we were going to wash Bella's diapers as the hotel did not have laundry services. The nearest laundromat was 2 miles away. We thought, "Man, driving in MN and sitting at a laundromat in -10 degrees is gonna be pretty lame." So, we decided to check out if there were any soft disposable diapers that maybe she could tolerate for a couple of days. Ang found a brand that seemed a little softer than most, and we went for it. Well, sure enough, they were just the ticket! However, it was good we got home when we did and got back to our fuzzibuns because her skin was starting to break down from the disposables.

Anyhow, one of Bella's problems is that she soaks through her fuzzibuns at night and this causes her to wake up. Thus, no one gets a full night's sleep.

We thought, "Hmm... wonder if she could tolerate those 12 hour extra absorbent disposables over night." So we picked up a small batch of them and voila! They work! They keep her dry through the night, she sleeps through the night, and they don't cause any collateral damage... which means... (if Ali cooperates and sleeps through the night herself)...

we sleep through the night!

Now before you get all happy, you need to know Ali hardly ever sleeps through the night anymore. Really too bad, too, because she used to sleep through the night like a champ from the time she was 9 weeks old. Oh well, one step forward, one step back.

Outside of that, things are good. Bella saw a registered dietician at CHOC today and the results were great. She is putting on weight like a champ still. She still gets 36 ounces of formula a day with a little baby food thrown in there for fun. The formula is the main source of calories, and her GI tract seems to absorb and convert the formula well. The RD said she has another EB child she sees. That baby was taking in 50 OUNCES a day at two months, and never got as big as Bella. It goes to show the real sinister part of RDEB: no matter how well you manage external wound care, you can't see or manage how well the GI tract works past the stomach. All you can do is keep getting weighed in every 30-60 days to make sure everything is still working internally. We'll see Vanessa again in March, then again in May before we head to MN (or NYC).

In other news, Bella's book is almost off to the printer! It's officially out of our hands now. It's being formatted one final time before it goes to Almost there! We'll be giving away the book as an eBook, and selling a paperback version for $19.95. It costs us $9.95 per copy to produce, so we'll clear an even ten bucks per copy. Each month, we'll be giving between 20-50% of the proceeds to a different non-profit organization either funding EB research, care, or care for children through music therapy. We are really excited to get the chance to pay it forward. We have been INUNDATED with love and support since the day Bella arrived. It will feel great to give back a little.

We'll keep you posted as to where and when you can get your hands on it!

Blessings to you all.

1 comment:

  1. Hi
    I'm Tripp's Grammy. Just thought I'd tell you that Courtney stuffs a disposable diaper inside the fuzzibunz behind the washable pad and it really helps at night. She now uses cheap disposables in every diaper because would leak all day.
    What a cutie!!