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, June 03, 2006



Here's What is Going On...

Life is continuing at what seems like the speed of light. Any time we go into town, Rebekah talks about school. She's going to be disappointed the middle of this month when she will be on break from school for several weeks. Meanwhile, we continue with Speech Therapy, Physical Therapy, Occupational Therapy and Horse Riding Therapy. She enjoys them all! And she is making improvements, even if only a little bit.

She continues to eat fairly well. When we started the G-Tube feeds (August 2005), she required 5-6 cans each day. At the end of her treatment (February 2006), she still needed 5-6 cans each day. As she eats more, we've slowly dropped the volume of the g-tube feeds. These days, 3 cans a day seems to keep her weight pretty constant. It shows that she is eating much more today than she was in February. I am frustrated that she still needs the g-tube feeds, but at the same time I have to remind myself that it takes time and we are seeing improvement. For that, I am thankful. We still have a long way to go. One day at a time...

As much as I would like it, I don't expect that we will ever get to a point where we don't have some reminders of the cancer she had and the treatment she has endured.

Most of Rebekah's feeds lately have been bolus feeds without any dilution. And other than a couple of times where she threw up a very small amount (not more than a mouthfull), she has been tolerating it pretty well.

Bedtime continues to be difficult with both girls in the same room, but we are managing. I haven't had to remove Sarah from the room in a couple of weeks. But, bedtime can be pretty stressful with both girls getting out of bed and pulling clothes out of their drawers and pestering each other.

Potty training isn't going anywhere right now. Rebekah doesn't want to sit on the potty and some of the time wants a diaper instead of a pull up. One day at a time...

Aunt TT and the boys came over yesterday for a while and that was great fun. The kids enjoyed playing and Mommy and TT got a chance to talk. All of the kids ate like horses at lunch. I thought I had made well more than they would eat and they pretty much ate everything and wanted more. That was exciting.

Sarah has some teeth trying to come in, so she has been a bit on the cranky side. I've been giving her teething tablets and that seems to help a bit.

I've cut back on Rebekah's "owie" medicine (Tylenol & Motrin) and not just giving it to her every time she asks for it. Often, when I tell her "we're not doing owie medicine right now" she goes back to playing contentedly. So, I'm guessing that she doesn't really need it. Now, if she asks for it several times in a row and gets really upset when I say no, that is probably another story and she'll get a dose. Sometimes, she gets the H20 medicine (water in a syringe) and that seems to satisfy her. She still gets her claritin daily and septra (antibiotic) 3 days a week.

Both girls have taken to eating cereal in the morning. And they both want Mommy's cereal not cherios or life cereal or something similar, but Mommy's with different textures and maybe fruits and nuts. And they both want milk in their cereal and spoons, although Sarah is fond of eating her soggy cereal with her hand instead of the spoon. I'm not sure which of them has better control with the spoon, although they have both improved. Also, both girls will drink from a big girl cup (regular cup with a little bit of liquid in the bottom) and do a pretty good job. Sometimes they actually keep their shirts dry.

There are so many ways that Rebekah's and Sarah's developmental ages are equivalent. I expect that Sarah will, before too long, surpass Rebekah. In many ways that will be a sad time (really, it already is), knowing that there are nearly 3 years difference in their ages. I hope, however, that Rebekah will be challenged by her sister at that point and that it will help to encourage her growth in ways that therapy and school cannot. All we can do, is wait and see and take each day as it comes.

We had a chance last night to go out to eat with some friends (Mark and Monica and their girls Katherine and Grace). That was a nice change of pace. The girls got along well and it was enjoyable to have some social time with friends, which seems to be pretty rare for us. While we sat in the restaurant, there was another family with a small child that was sitting near us. A couple of times during dinner, the child was making "happy" noises and Rebekah was saying baby and looking around. As they were leaving, they stopped and asked us if we were related to Scott's mom. They knew Scott's mom and had been praying for us for quite some time and wanted to say hello and see how Rebekah was doing. Once again, we are reminded how so many people who we have never even met have been praying for us and thinking about us.

Sarah seems to be be becoming more of a Dora girl than Rebekah - as hard as that is to imagine. Sarah always wants to watch Dora, Rebekah sometimes would rather watch something else. The other day, one of the two Dora blankets was in the wash. When it came time for bed, I went to put the clean Dora blanket on Rebekah and Sarah really started to object. Rebekah told me that Sarah could have it. What a sweet sister.

4 Shared:

At Saturday, June 03, 2006 5:55:00 PM, Blogger My Kid's Mom Left a thought...

Wow. Such "normalcy" in your lives now, as compared to a few months ago. I pray that you have a wonderful summer!!!

 
At Saturday, June 03, 2006 7:11:00 PM, Blogger Jayleigh Left a thought...

As they were leaving, they stopped and asked us if we were related to Scott's mom.

That's fantastic... and like you said, another reminder of how many people were/are STILL praying for your family.

**hugs** to all

 
At Sunday, June 04, 2006 12:21:00 AM, Blogger Eva Left a thought...

The restaurant story brought tears to my eyes. Little blessings. That's awesome.

 
At Wednesday, June 07, 2006 7:15:00 PM, Blogger *~Tey~* Left a thought...

My Prayers are still with your family and Rebekah as she continues to inspire us all with her bravery. God Bless Rebekah!

 

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