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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Monday, September 18, 2006



Do you ever feel like life is on hold?

In many ways, that is where we are. That is, if we ever stopped running ragged. Rebekah's Pet/CT is tomorrow (Tuesday) morning. We should have results in a day or two. Friday, we meet with Rebekah's teacher (as well as others) and discuss the results of Rebekah's testing and see if we want to make any changes to her class schedule. It is hard to plan without knowing whether school schedules will change or what the Pet/CT scan is going to show. A tough place to be.

As if we didn't have enough activities going on last week (and this week for that matter), we had a party for Sarah's 2nd birthday on Sunday (yesterday), so we had cleaning and shopping and baking, etc... to do. The party seemed to go pretty well. The Dunham family (Sarah's second family) was able to come and enjoy the time with us, as well as all the Grandparents, Aunts, Uncles, Cousins and our friend Dinah. It was great to see everyone.

The party was all Dora - plates, napkins, cups, cake not to mention many of the presents. Yes, we have two big Dora fans. Any time we talked about birthday, both girls would say "Dora". They were with me when we bought the paper products and cake pan and they sure didn't forget about it.

In case there are any novice cake decorators out there, it isn't easy decorating a cake. It took me waaaaaaaay longer than I expected. Daddy kept asking me if it was going to be done in time and I started it early morning (just after breakfast) and the party was at 4 in the afternoon. I did have a little time to spare to change clothes, and tidy up a few things. If it weren't for all of Daddy's help (and the girls behaving fairly well), we never would have been ready. If I'm going to do one for Rebekah's birthday, too, I better figure out how to make it go faster.

As I was cutting the cake, I started at the feet and gave the first piece to Sarah - the birthday girl. When I tried to give the second piece to Rebekah, she wanted nothing to do with it. She wanted "hair". I told her that if she wanted hair, she would have to wait a while. She waited and watched as I cut and when I got close to the hair, she told me again that she wanted hair, so she got a piece of hair. I guess for a girl that had no hair for so long, hair is important!

Rebekah's eating continues about the same. I have gone back to using gravity feed bags and a pole to give her some pediasure at nighttime in order to try and add some weight. I don't know if it is working yet, but, I'm hopeful. It is a struggle to figure out how to get her some pediasure without affecting what she is eating - if I give it before a meal then she won't eat as much, but if I give it after a meal then she might throw up. She won't drink it and I can't get her to drink more than three juice boxes in a day, except on a rare occasion. Ugh!

Rebekah seems to be talking more and more and doing a lot more of it spontaneously. She (and her sister for that matter) will answer Dora's questions while they watch Dora on TV. As we are driving, she points out all the buses, especially the yellow ones. And she brings lots of things to Mommy's attention - book, Dora, yellow, bus, Grandma, phone, diaper, etc...

Both girls are fighting taking a nap, so I don't know how much longer the naps will continue. In many ways, I think Sarah needs them less than Rebekah. It just doesn't seem right to have Rebekah take naps and not Sarah. Oh the joys of parenting!

Rebekah and Sarah have both been asking to sit on the potty periodically. Usually, Rebekah sits on the regular potty with a Dora insert in it and a stool in front of it for her feet and Sarah sits on the little potty chair. One day, Sarah wanted the stool. So she sat on her potty, with her feet above her bottom on the stool. It was hilarious. She just wanted to be like her big sister! Another day, Rebekah wanted to sit on Sarah's potty and Sarah wanted to sit on Rebekah's. What fun!

And to add to the busy days, Daddy has been really busy with work, Mommy's computer decided to die (and we had to try to salvage the necessary data, which I think we've done), Mommy needs some Physical Therapy for a sore back/neck and finally got a chance to get in today for an evaluation and they want to see her twice a week (how are we supposed to make that happen?), and Thursday of this week Rebekah and Sarah have a dental appointment.

Please pray for clear scans and a good direction for Rebekah's schooling. Thanks, again, for checking on us and praying for us.

6 Shared:

At Tuesday, September 19, 2006 4:27:00 AM, Blogger jel Left a thought...

will be praying ,

glad the birthday went well!


huggs!

 
At Tuesday, September 19, 2006 11:28:00 AM, Blogger Alison Left a thought...

I always make the cakes the night before. I make them for other people as well and I find that doing it the night before reduces a huge amount of stress.

Sounds like things have been super busy but that you are handling it all well.

Will be praying as things unfold in the next few days.

 
At Tuesday, September 19, 2006 7:28:00 PM, Blogger My Kid's Mom Left a thought...

At least you're keeping busy while life is "on hold" - that is good. THe uncertainty is so difficult, though, I know. I'll say extra prayers for all of you!

 
At Wednesday, September 20, 2006 12:52:00 PM, Blogger Deb Left a thought...

I'm praying for clear scans and that your time will be multiplied so that you're able to do all that you need to do in a day and not feel stressed!

Sending a hug!
Deb

 
At Friday, September 22, 2006 11:33:00 AM, Blogger Deb Left a thought...

Still praying here in Pennsylvania!

hugs!
Deb

 
At Saturday, September 23, 2006 2:19:00 PM, Blogger thequeen Left a thought...

Always praying and sending positive energy. Please post again soon!

 

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