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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Saturday, January 20, 2007



An Interesting Week

What an interesting week it has been. Monday was a Holiday so there wasn't any school, but Rebekah did have speech therapy. Tuesday morning we were supposed to get a dusting of snow. That dusting turned out to be about 2 inches at our house and 4-6 inches in many areas. That meant a lot of schools were closed, including most of them in the area. Rebekah's school district was closed both Tuesday and Wednesday and ran 2 hours late Thursday. Running 2 hours late brings up more questions. I had been told that with a 2 hours late schedule, her class would be on time but the bus service wanted to verify that too. No speech on Wednesday either, so Tuesday and Wednesday were stay at home days, which was fine with me.

I've discovered that I have to watch for 3 different school districts to see if they are closed in order to determine what Rebekah's (and my) schedule will be. Our home district buses her to school, her school is in another district and her speech therapy is based on a third district. Oh what fun.

To add to the confusion of the week, I (Mommy) broke a tooth Monday night. I called the dentist Tuesday morning and was finally able to get in Thursday morning. I'm going to need a crown and was able to get a temporary fix. I'll have to go back and get the crown done - oh joy! Luckily it wasn't hurting, so I wasn't too worried about waiting a few days. Unfortunately, we had to cancel Rebekah's horseback riding for the week because I couldn't get her there and get to the dentist and Daddy had to work and couldn't get her there either.

We have a friend Jessica who is helping watch the girls a couple of days a week so Mommy can get some things done an try to help Daddy in the office a little. It is great to have the help and hopefully Mommy can be of some good help to Daddy.

Rebekah hasn't been eating real well and hasn't been drinking her juice up. It is frustrating (especially now that we don't have the backup of the g-tube) and so we've been having to push her more to eat. Then, the other night, she threw up on us - and she hadn't really eaten that much. Ugh! She constantly complains that she is full, even when she hasn't eaten anything. She also complains that she needs to go to the potty, even when it hasn't been more than 15 minutes since the last time. If she goes to the potty, she doesn't want to come back to the table. If I don't let her go to the potty, she might have an accident. It is a bit of a catch 22. I wish I knew the magic answer.

Sarah has about 3 teeth coming in all at the same time. It is making her a bit cranky.

We are all still fighting some of the cough that we got around Christmas. It just seems to drag on. Night time seems to be the worst for it.

The middle of December, we got into Shriner's Hospital for an evaluation and were accepted into their program. They deal with orthopedic issues, like Rebekah's need for Physical Therapy (Gross Motor skills like walking and running, kicking a ball or even throwing a ball) and Occupational Therapy (Fine Motor skills like writing, stringing beads, opening containers, putting puzzles together, etc...). The good news is that the doctor didn't see any need for any type of surgery, at least not now. Next week we go in for PT and OT Evaluations as well as a Speech Therapy evaluation (once she was admitted to the program, then they consider providing her Speech Therapy, too). We will have to see what sort of treatment plans they would like to implement for her for each of the areas. There is always more need than they have ability to provide, so we just have to wait and see what they are able to do for her. The good news is that Shriner's doesn't charge patients, so their services are cost effective for us. Since Insurance doesn't like to pay for this type of therapy that is expected to be long term, we need to look at our options.

I came to a bit of a startling revelation this week. When Rebekah was at her lowest weight during treatment (August 2005), she weighed what Sarah weighs now. At that time, Rebekah had lost about 6 pounds dropping from 35 pounds down to 29 pounds. Rebekah was 3 years 8 months old. Sarah is now 2 years 4 months and weighs about 29 pounds. What a contrast! It brings back many of the memories of Rebekah looking so frail - really just skin and bones. What a frightening time that was for us. While 2006 brought only a pound or two of weight gain, the last 4 months of 2005 saw a weight gain of nearly 10 pounds (the 6 she had lost plus a few more). There is a lot to be thankful for. Perspective is a wonderful thing.

Last Friday night, Grandpa and Grandma C watched both girls overnight, so Mommy and Daddy were able to go out with some friends of ours (Mark and Monica) and have some adult conversation and company. It was a great night out.

2 Shared:

At Sunday, January 21, 2007 7:43:00 AM, Blogger Lora Left a thought...

Glad to hear that you got to go out and had a good time. Hope that your tooth is all better, that can be so unpleasant. Have a wonderful and blessed day! Hugs to everyone!

 
At Sunday, January 21, 2007 7:36:00 PM, Blogger My Kid's Mom Left a thought...

It's good to hear from you again - such a newsy post! Thanks for keeping us informed. Love to all!

 

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