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.

Tuesday, September 26, 2006

School Test Results and Update

Friday, we had a meeting at school to take a look at the results of the testing we completed over the past few weeks. Basically, her skills are solid at about that of a two year old with a swiss cheese effect (some substance, but a lot of holes) up to 5, 6 and even 7 years. Just watching Rebekah and her sister and their developmental levels, we could see that they are about even.

We have a few more things to discuss with school, so we'll have another meeting in a few weeks, but we made a lot of progress and we have a much better understanding of where Rebekah is at. At least for now, Rebekah will be going to school 4 days a week for an hour and a half each day.

We decided to start sending her on the bus at least some of the days, so we have that in process. Rebekah is much older now than when she started in school and "ready" for the bus. We took Rebekah to the bus garage (last Friday) and sat in one of the busses and their carseats. She just loved it. Today, when we talked about going "bye bye" to school she kept saying "bus". Do you think she wants to ride the bus?

One of the things that they have been working on with Rebekah at school, is being able to say her name so that she can be understood. She is having difficulty with that, so we will probably switch to using Bekah instead. For safety reasons, it is important that she be able to say her name where she lives and her parents names. We can only work on that one step at a time, but hopefully saying Bekah will be easier for her and we can start moving in the right direction.

For those of you who are interested, here are some of the details of the different tests and where she is developmentally: Cognitive: Attention and Memory - 17 months (some skills at 60 months), Cognitive: Reasoning and Academics - 36 months (some skills at 60 months), Cognitive: Perception and Concepts - 23 months (some skills at 60 months), Adaptive/Self-Help: Self-care - 24 months (some skills at 48 months), Adaptive/Self-Help: Personal Responsibility - 36 months (some skills at 48 months), Personal-Social: Adult Interactions - no delay, Personal-Social: Peer Interactions - 24 months (some skills at 48 months), Personal-Social: Self Concept and Social Role - 24 months (some skills at 30 months), Gross Motor - 24 months (some skills at 30 months), Fine Motor: Fine Motor skills - 36 months (some skills at 48 months), Fine Motor: Perceptual Motor skills - 36 months (some skills at 48 months), Communication: Receptive Language - 24 months on one test (with some skills up to 84 months) and 54 months on another test, Communication: Expressive Language - 24 months (some skills at 36 months), and Articulation/Phonology - significant delay.

I've been giving Rebekah some tummy drinks at bed time, to add a little more nutrition to her day. Saturday night, it didn't settle too well for her and she threw up. She needed disconnected, cleaned up, bed changed and then back to sleep. I still haven't seen much of a change in weight, but I'm waiting and continuing to push forward.

Sunday night, after putting the girls to bed Sarah threw up twice. It was a major mess, with a screaming and very unhappy little girl. That was on top of a nasty diaper rash from lots of poopy diapers (Daddy says I shouldn't have fed her so much fresh fruit). She was not a very happy camper. Eventually, she did go back to sleep. Monday she was just fine, so I'm not sure what the cause of the vomiting was. The diaper rash is better, too.

Nap time has been a challenge. Many times, it has taken an hour or more to get one of them to sleep and sometimes the other just won't go. During that hour, the girls are emptying dresser drawers and otherwise getting into trouble, making it very frustrating for Mommy. Then, bedtime is the same struggle. I've decided that maybe naps are not necessary. Late last week, we gave up naps and bedtime went much better. The last couple of days, however, the girls have needed late afternoon naps, so I've put them down and they've done a good job of going to sleep. We'll have to see how it continues to play out, but scheduling an early afternoon nap probably won't be happening any more.

Tumor board met this morning and should have discussed Rebekah's scans and when to rescan. Hopefully, we will hear the results of tumor board later today. We are still planning to go to Seattle to have them look at her scans, too, but have been waiting to hear what our Tumor board says first. One step at a time.

Rebekah and Sarah's dental appointment went pretty well. No particular concerns right now. They asked if Sarah is using a binky or sucking her thumb (they were seeing signs of use) and I told them that we had just gotten rid of Sarah's binky. They told me that usually within about 6 months of stopping the habit, the "damage" will disappear and she'll be back to where she should be. I'm trying to be consistent in brushing and flossing their teeth every night. It is tough and the girls are not fans of either. If they don't cooperate with the "easy way", then we have to go to the "hard way". It has to be done.

Before their appointment, I talked with them about the dentist and asked Rebekah if she would show Sarah how to be a big girl for the dentist. She said she would. Once in the exam room, Rebekah didn't want anything to do with the chair, so we used a knee to knee approach (Rebekah sat in mom's lap facing mom, the hygienist sat with her knees at mom's knees and a pillow in her lap, then we layed Rebekah back onto the pillow while mom held Rebekah's hands). It worked and although Rebekah wasn't completely happy about it, she did cooperate for the most part. When it was Sarah's turn, she wanted to do it "just like Rebekah".

2 Shared:

At Thursday, September 28, 2006 4:10:00 PM, Blogger Eva Left a thought...

I can just imagine that at the dentist's office! How funny!

At Friday, September 29, 2006 11:23:00 AM, Blogger My Kid's Mom Left a thought...

You certainly got a lot of information, and hopefully, you can use it in terms of "Bekah's" daily life. Like you said, one step at a time. . . I'll continue on with prayers.


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