Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Sunday, February 05, 2006



Weekend Update

It has been one of those weekends. It started Friday night, when Mommy had trouble posting an update and in the process "lost" the post, so she had to rewrite it. (It came out much better, but that is little consolation.) Then Saturday morning, we discovered several "problems" with the Blog. We (Daddy) did a lot of troubleshooting and couldn't get a good answer. Finally, he discovered that it wasn't just us and that Blogger (our host) was working on it and today (at least as of mid-day) it seems to be functioning properly. Nonetheless, we started to worry about what would happen if we were not able to get it working again. Please bookmark HelpRebekah as well. If something happens to the blog, we may resort to putting updates on HelpRebekah. Blogger is scheduled to be down Monday from 7pm-8pm PST for scheduled maintenance, so don't worry during that time.

Saturday, we got a chance to get out and celebrate Mommy's brother Chuck's birthday. We went out to a restaurant with Rebekah's Uncle Chuck, Aunt Molly, Cousin Cole and Grandma M. Both girls did a good job of eating and behaving. Afterwards, we headed to Grandma M's. She graciously offered (and we all accepted) to watch all 3 kiddos while Chuck, Molly, Mommy and Daddy went to Costco. Grandma M didn't seem too frazzled when we got back. Thanks so much! It is always great for Mommy to get a little while without girls, which happens very very rarely. It was great to get out for a while and have "normal" activities.

Today has been a frustrating day. Mommy and Daddy are both on edge. As if things weren't bad enough, we just discovered a leak in our waterbed. Not sure what that will mean. We've tried to patch it, but not sure if it will hold. Ugh! We have to be up bright and early tomorrow morning for Rebekah's scans. It's going to be a busy day, so we were both looking forward to a good night's sleep.

Rebekah has been continuing to eat. I am so proud of her. I've been working on using the gravity feed bags (which are much quicker than the pump) during the day and she's been doing well with that. I've kept the volume at 3/4 of a cup or a little more, but I'll work on slowing increasing it as long as she tolerates it. Eventually, we should be able to get all of her nutrition in during the day. I'm excited to see how she's doing with eating and tolerating her food. I see it as a good sign of things to come. It gives me hope for a "quicker" return to eating all of her nutritional requirements, although I have absolutely NO concept of how long it may take. We are, in any case, in it for the long haul.

Tonight, she can have food until 5am so we're not real limited on overnight feeding (and I don't want her to be hungry in the morning (when she can't eat). We have to get up at 5am to get ready to go, anyway, so I'll set my alarm and get her food shut off then.

Rebekah's diaper rash is getting a little better, today anyway. Yesterday, we had a bad diaper change that included bleeding and was followed with screaming and Morphine. Today, it is better, but still has a lot of healing to go yet.

One of our readers, Wendy, brought another family to our attention who recently lost their child. Cameron passed away Friday, so please pray for his family. Of course, please keep Nikolette's family and all the other kiddos in your prayers, too. It is going to be a rough week for us, so please keep up the prayers. We know they make a difference.

2 Shared:

At Monday, February 06, 2006 3:32:00 AM, Anonymous Anonymous Left a thought...

Sorry you had a ruff weekend,
but glad that mommy and daddy got to go out and do normal stuff,
praying that this is a good week for you,
sorry to hear, about Cameron, will be praying , for his family and the other family's,
huggs
janice

 
At Monday, February 06, 2006 3:45:00 AM, Anonymous Anonymous Left a thought...

It's so nice to hear that Rebekah is able to eat and that your spirits are up. Any blessing is always good hear about. Good luck today and God Bless !

 

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