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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Thursday, December 22, 2005



Another Day

Rebekah's diaper rash is a little better today. Her temperature is still borderline, so we are keeping an eye on it. She's not sleeping real well at night, so I'm lucky if I get 4 hours straight to sleep. Makes me pretty tired.

She slept for a few minutes on the couch this afternoon and then a little later fought going down for a nap (however she really needed it and Mommy wouldn't let her up).

She continues to have a bit of a cough which irritates her and can make her want to throw up. She threw up a little after dinner, but has otherwise been tolerant of her food. I think her stomach was feeling too full and caused the upset. She continues to be upset when I give her bolus feeds and I hope that she begins to accept them without the struggle.

Friends Sandy and Maurice made us a very nice dinner which friends LaDonna and Royal dropped off along with a nice gift. It was a wonderful surprise. We are so thankful for wonderful friends like Sandy and Maurice and LaDonna and Royal. LaDonna stopped by earlier this week with gifts from her family and work.

Rebekah wants to be such an independent little girl. As an example, she wants to wipe her own nose after getting the tissue out of the box herself and then she wants to throw the tissue away all by herself. She is pretty frustrated that the kitchen cabinet with the trash can is locked (for safety reasons) and she can't get into it.

When Daddy was making himself lunch, she was pretty sure that he needed a fork and she was determined to get one for him. Daddy already had one and that got her upset.

Rebekah has been clumsy the last few days and gotten a number of bumps. We have a couple of gel freezer boo boo pals to put on the owies. They have become her friend. She constantly wants one for her boo boo. I almost think that she will make up an owie if that means that she could have the boo boo pal. They sit on her lap as much as they are actually on the boo boo.

Sarah has had a bit of a runny nose and cough the last few days. Not really what we want, but can't help it. She's been getting medicine for that.

We continue to pray that her appointment goes well tomorrow and that her counts are starting up, so that we can discontinue the daily shots. We'll have to see how her counts are doing to make decisions about Christmas celebrations.

15 Shared:

At Friday, December 23, 2005 5:25:00 AM, Anonymous Teresa Left a thought...

My prayers are with you today for your appointment to go well. Continuing to cover you all with prayers and giving Him thanks and praise for all He has done. Look forward to seeing your post later today.

 
At Friday, December 23, 2005 6:15:00 AM, Blogger mommyguilt Left a thought...

We had "Boo boo bunnies" when my kids were little. They did the same thing...played with them or held them in their laps more than put them on the Owie. I think it was just a comforting thing...kind of like putting a bandaid on something that just hurts a bit, but isn't bleeding.

Prayers for a wonderful holiday, regardless of where you spend it. I am thankful that your family is home, together, to celebrate. Wishes to all and best of everything in 2006.

Christina

 
At Friday, December 23, 2005 7:02:00 AM, Blogger Eileen Left a thought...

I am hoping and praying for your appointment to go well at the doctor today! Rebekah is beautiful. God Bless you and your wonderful family! I am wishing you all the best in the upcoming New Year!!!

 
At Friday, December 23, 2005 8:04:00 AM, Anonymous Paul Laroche Left a thought...

Wishing you all a very merry christmas
big hugs to all

 
At Friday, December 23, 2005 9:43:00 AM, Blogger steve Left a thought...

MErry Christmas

 
At Friday, December 23, 2005 10:33:00 AM, Blogger Eva Left a thought...

I pray that you will have a wonderful Christmas, no matter what you do. That the girls will be feeling well and in good moods - that you can SLEEP - and enjoy the next few days as a family - no matter what you do.
Merry Christmas!

 
At Friday, December 23, 2005 10:34:00 AM, Anonymous Anonymous Left a thought...

Dear Scott --

Thank you for the OTLA post (via Bob Browning on the SSFP board). Thank you for reminding me of those things and people that are important to me. Thank you for rekindling the importance of loving one another and demonstrating that love on a daily basis. Blessings.

 
At Friday, December 23, 2005 11:56:00 AM, Blogger Katie Left a thought...

praying that this Christmas weekend is joyful and peaceful for your family and that all things go well at your appointment and you can be home for the weekend with no fears of hospital stays

 
At Friday, December 23, 2005 12:33:00 PM, Anonymous Char Left a thought...

I want to wish you a very Merry Christmas, no matter how you end up spending the day. Praise God for all He has brought you through. It's been a fight every step of the way, but at least you're still in the game. Praise God from whom all blessings flow.

Praying in NC,
Char

 
At Friday, December 23, 2005 12:44:00 PM, Blogger KCsMom Left a thought...

Have a great holiday Rebekah and family! You are always in our prayers.

 
At Friday, December 23, 2005 2:41:00 PM, Blogger JodiTucker Left a thought...

Thinking of you all and praying.....with love, Jodi

 
At Friday, December 23, 2005 3:39:00 PM, Blogger Carol Warlick Left a thought...

I pray that Rebekah's appoint went well today, and that everyone is able to be at home during Christmas. I won't be reading your updates as often this next week, so I wanted to add a comment.
I will check in as often as I can and will continue to pray for each and every one of you. Merry Christmas may God continue to watch over you and give you strength.

 
At Friday, December 23, 2005 5:05:00 PM, Blogger Alison Left a thought...

Praying that you have a wonderful time all together and that things work out in the celebration dept.

 
At Friday, December 23, 2005 9:20:00 PM, Anonymous nurse Wendy Left a thought...

Merry Christmas!

 
At Friday, December 23, 2005 10:04:00 PM, Blogger Deb Left a thought...

I think I may have mentioned this before ---but it's worth saying again...Boudreaux's Butt Paste. It is the best salve on the market for diaper rash. It's good for a lot of other things too. Our local WalMart carries it. And --it's not an accident that ten minutes before I read the post about Rebekah's sore bottom that I came across a sample of BBP in my purse....

We are praying for you ---continually! Rebekah's photo is prominently displayed in our home where everyone who enters can see her smiling face! Many inquire and we share her story!

Just in case I can't get back to the site to post before Sunday ---I want to wish you all a wonderful, Merry Christmas --filled with lots of love and smiles! As you know, God gave us the most precious Gift --and as you celebrate Jesus' birth ---however, wherever and whenever you celebrate --remember that He came to give life --more abundantly! I'm agreeing with you in prayer for Rebekah's life to be long, full and abundant ---in every way!

In Him,
Merry Christmas,
Deb

 

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