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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Tuesday, June 13, 2006



More of the Same with a Visit from Jeanne and Mary Thrown In

It has been a lot more of the same - school, therapy, play, struggles with bedtime, eating more bites, bolus feeds, not much change on potty training, etc...

Sunday, we had cousins Jeanne and Mary over for brunch along with Aunt Tiffany, Jacob and Michael, Grandma A and Grandma M. Jeanne and Mary are retired and live in California and are on their way to Whidbey Island, Washington where they have some property and will spend most of their summer this year. It is always good to see them and I'm glad they were able to come.

Jeanne and Mary brought some gifts for the kids. The girls both got stuffed animals, which they have been dragging back and forth between the playroom and bedroom. If they are sleeping they want their animals in bed and if they are playing then they want their animals in the playroom with them. This morning, Sarah even wanted her stuffed animal to eat breakfast with her. I told her she needed to take it to the playroom and then come eat, because I didn't want it to get dirty from breakfast and then have to be washed.

Grandma A brought out several outfits for both of the girls, including Dora nightgowns for each of them. She had found a sale on clothes and couldn't help herself. The girls wanted to wear their Dora nightgowns to bed that night. In Rebekah's attempts to not go to sleep like a good girl, she decided that she needed a new diaper. She took hers off and got several more out of the drawer and tried to put one on. However, she doesn't have the hang of putting on diapers and she ended up peeing all over the bed, which included her nightgown and her Dora blanket. Boy was she upset when she had to get new jammies and couldn't have her Dora blanket because it needed washed. Tough lessons for a little girl to learn.

Rebekah has been asking for tummy drinks and saying "all done" which I think she means that her tummy is empty (she often uses "all done" to mean empty). I had figured that we needed to wait at least 2 hours between bolus feeds, so that she had time to digest it. But she has been asking for tummy drinks ans saying all done at an hour fifteen or an hour and a half. After a couple of days of that (where she was being pretty consistent), I started to believe that she might have an empty tummy and really did want food (and wasn't just trying to get out of whatever Mommy had asked her to do).

So when she was asking for tummy drinks at bed time and it was an hour and a half or so after her last bolus feed, I checked to see what was left in her tummy (with the G-Tube, I can do that). Low and behold, not a drop was left in her tummy. She probably was hungry. So, I gave her another bolus feed. Now I know that I don't have to wait 2 hours between feeds. That can allow me to get a little more into her and maybe add to her weight a little.

I am still trying hard to encourage her to eat, so I don't want to give her a bolus feed shortly before a meal or a snack. Most often, when she says she is hungry like that, I'll offer her a snack first and then she can have tummy drinks. All in all, I don't like the fact that she needs the tube feeds, but I'm very happy in how much she is eating and how we continue to see improvement so I'm not "down in the dumps" about it.

Bed time continues to be difficult. Last night, they lost "Dora" privileges (as in, no Dora on TV). They threw pillows and blankets and stuffed animals on the floor and they lost those too. I did agree to give them back a pillow each and put them back in pillow cases for them, but they didn't get their blankets or stuffed animals back. Rebekah was ok with having her sheet and regular blanket on her, but Sarah wanted nothing to do with it and laid in bed without any covers on. Maybe, they will start to figure out that throwing things onto the floor is not ok. (And most of it is intentional.)

Rebekah wants so much to be a big girl. Today, she picked out her own clothes. She decided that she wanted a Daddy Fire shirt (dark blue Fire Department shirt in her size), khaki pants and her pink Easter sweater (because she was cold). Quite a combination, but since that is what she wanted to wear that is what she is wearing. Besides, it is a stay at home day, so no one has to see her...

6 Shared:

At Wednesday, June 14, 2006 5:07:00 AM, Blogger My Kid's Mom Left a thought...

A lot of these "antics" of Rebekah and Sarah that you're describing are so reminiscent of my girls at that age! They are definitely asserting themselves, aren't they? It sounds like you're taking it all in stride - although I know how frustrating it can be. Hang in there!

 
At Thursday, June 15, 2006 6:42:00 AM, Blogger JodiTucker Left a thought...

Parents can realize the absolute love they have for thier child/children, yet be frustrated with their disobedience. How much more frustrated must God, our Heavenly Father, be with our adult "antics" as His Children to sometimes distance Him? Hmmmm. Yet, He loves us anyway. Yes!!

 
At Thursday, June 15, 2006 12:27:00 PM, Blogger Eva Left a thought...

It's always a riot when kids start dressing themselves. Get lots of pictures for nostalgia! :)

 
At Friday, June 16, 2006 4:33:00 AM, Blogger Danny Sims Left a thought...

Sounds like fun. As for the potty training, it will happen. Great joy in our home when we went to Walmart and diapers was NOT on the list!!

 
At Friday, June 16, 2006 1:26:00 PM, Blogger Sherpa Left a thought...

Ah, I haven't commented on here forever. Sounds like y'all are hangin' in here, and Rebekah sounds like quite the fabulous dresser.

;)

 
At Monday, July 24, 2006 11:09:00 PM, Anonymous Anonymous Left a thought...

I just stumbled across this blog and I have to say, it made me cry. What a sweet little girl. Your faith and compassion inspires me. I wish you all the best and even though I don't know you, this has touched me in a way I cannot explain. I will keep all of you in my prayers and please give that adorable little girl (with the same name as me :) )a hug for me.

Love, Rebekah

 

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