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, September 28, 2008



Getting Used to the School Routine

We are getting used to the new school routine. Both girls are pretty tired by the end of the school day. Dinner time has been moved a little earlier so the girls can get to bed sooner.

Rebekah spends part of her school day in the first grade classroom and part of the day in the special ed classroom with 3 kindergarteners. She does a good job of listening. She has an occasional outburst, but seems to be much better than last year. Some of it is probably due to her being more mature and some may be because of her medication. She can be very compasionate, helping the kinders come to circle when it is time or waiting patiently while they make their way. She gets to be in her first grade class at the beginning of the day for greeting time and learn about what is happening for the day. She has music, pe and library as well as lunch and recess with her first grade class, too. She is also in an adaptive PE class where she focuses on the skills that the physical therapist wants her to work on. She does some academics in the special ed class and some in the first grade class. It seems to be working well for her.

Rebekah came home the other day with a picture that her friend had drawn for her. It showed her and her friend. It was drawn that day, because in the picture Rebekah was wearing the shirt she wore that day. It was interesting to me that her friend had drawn Rebekah's hair shorter on the left side than on the right (which is accurate). It reminds me how observant kids her age can be.



Our insurance company denied coverage for the Tango - the speech generating device. Their policy specifically excludes them. We are working on putting together an appeal. We don't know if that will work, or not, but we are going to give it a shot. We may have to look at other funding possibilities if this doesn't work. So, please continue to keep this in your prayers.

Sarah enjoys school. She goes three full days - Monday, Wednesday and Friday. She has her special speech class on Wednesday mornings, so she misses the first hour and a half of preschool. She is at a christian school, so she is learning more about God, too, which is great. She comes home singing new songs she has learned and talking (if we can get her to) about things she learned. Most of the time she tells me she can't remember what she learned. But then, she's my girl that when I asked her who taught her something she tells me "I just always knew it." She has a boy in her class that is seriously allergic to peanuts, so they have asked to make the classroom nut free. So no peanut better and jelly sandwiches at school. She will have to have those on "stay home" days.

Sarah celebrated her birthday a week and a half ago. She turned 4. Her birthday was on a Wednesday, so she got to take treats to both her speech class and preschool. She was very excited. We celebrated her birthday with family last weekend. She decided that she wanted a castle birthday cake, so Mommy made her a castle birthday cake. And we had Cinderella plates and napkins, so it was a "princess" party. She had a great time and got some clothes for school and some "princess" towels and books, among other things.



Shortly after Rebekah comes home from school, she needs to wear her eye patch for two hours. She usually grumbles about it, but it has to be done. The last few days, she has been doing much better about it.

We were able to get Rebekah started back on Horse Therapy riding. She started again this past Tuesday. Once a week, she will get to do that. She seemed to enjoy it and was able to do many of the things she had been doing in December when we stopped. This week, she will ride a different horse. The horse she has been riding (Butter) will follow the instructor regardless of how Rebekah steers. The new horse will follow Rebekah's lead more, so Rebekah will have to work harder to keep the horse doing what she wants. It will be interesting to see how she does.

The girls wanted a clock in their room, so we got a clock that projects the time onto the ceiling. We've been working with them on telling time (at least what hour it is). On school days, they get up when the first number is a 6 and if it isn't a school day the first number needs to be a 7 or an 8. We are also working on AM vs PM. It is also an alarm clock and they decided that they wanted the alarm to wake them up instead of Mommy. It is really funny to hear them on a Saturday morning at 6:45 or so talking to each other and saying "the first number isn't a 7, so it isn't time to get up". Other days, I can hear Sarah saying "it has been 6 a long, long time". Then, she'll come out of the room at 6:59 to go potty and tell mommy "it isn't a 7, yet, but I need to go potty". Yesterday, however, they woke up around 5:50. They weren't able to stay in their bedroom for too long and they weren't about to go back to sleep. Today, I had to wake them up a little after 8, so we could get up and ready for church. Some days they wake up early and surprise me because I thought the needed more sleep and other days they sleep in and I figured they would be up early.

4 Shared:

At Monday, October 06, 2008 6:43:00 PM, OpenID eva-marie Left a thought...

Oh the girls are getting so big! And so cute!

 
At Wednesday, October 08, 2008 12:05:00 PM, Blogger Deb Left a thought...

...just checking in...continuing to pray for the Tango device...

It sounds like the girls are adjusting well to school! And happy belated birthday to Sarah! What an awesome cake you made --I have never attempted to make Olivia's cakes --although I should - it would be less expensive, for sure!

....continuing to pray for you guys daily!

 
At Thursday, October 23, 2008 11:53:00 PM, Blogger Pia Left a thought...

it's been a long time since i was last here. i thank the Lord for keeping sarah and rebekah. God is awesome.

praying for healing and restoration. nothing is impossible with God. i'm believing with you.

 
At Thursday, May 21, 2009 7:57:00 PM, Anonymous Anonymous Left a thought...

59 So they sent their sister Rebekah on her way, along with her nurse and Abraham's servant and his men. 60 And they blessed Rebekah and said to her,
"Our sister, may you increase
to thousands upon thousands;
may your offspring possess
the gates of their enemies."
Rebekah; You are special in Gods eyes, and all that are praying for you and your family, God Bless, Jim <><

 

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