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.

Monday, May 22, 2006

Fun Camping Trip

Rebekah did well with her MRI. It started a little late and lasted a little longer than we expected, but that can happen.

We took the camping trailer with us to the hospital for the MRI and headed to the campground after that. We had a little bit of a scare with the makings of a fever when we arrived at the campground two hours later. A little motrin and that took care of it. Rebekah perked up and was her typical self.

We had a good time camping with family and friends. The girls enjoyed spending time with Grandma M, Ann & Joe and JJ, Dinah and all the others. Getting them to go to sleep (and stay asleep) was fun. We had bought a couple of Ready Beds (air mattress with a cover around it and attached sleeping bag) for the girls. The first night, Rebekah did fine sleeping in hers, but Sarah wouldn't stay on it. I had brought a playpen for Sarah, just in case. So for her nap Saturday and bedtime Saturday night we got the playpen out and used it instead. She'll grow into the Ready Bed, but just isn't ready for it yet.

Speaking of Sarah and bed time - one day last week, Sarah managed to break the rails on her bed. She had been standing on the bed and rocking against the rail and it snapped the plastic. So, no more rails. She has to be a big girl and learn to sleep in the middle of the bed, so she won't fall off. Of course, the first night, she fell out in the middle of the night. She didn't get hurt, but it did shock her and she was crying and standing by the bed when I got to her. Rebekah still falls out of bed periodically, so I guess I should expect it from Sarah for a while too.

Tomorrow at 11am we go into clinic for our follow up appointment to the 3 month scans, so we'll know the results tomorrow. Please continue to pray for CLEAR SCANS.

Also, tomorrow afternoon is Rebekah's first day of horse riding therapy, so it should be a good day.

Rebekah has been continuing to take her bolus feeds with only occasional vomiting sessions. She continues to need some tylenol and/or motrin each day as well as her claritin, septra (antibiotic that she gets because of her depressed immune system) and some occasional benadryl.

She is continuing to take bites of food and wants to eat often, although not often very much. She will say she wants x and then won't touch it and then wants y and won't touch it either and says she wants z. While I want her to eat, I don't want to teach her that she can say she wants something and then not even try it. Very frustrating.

Rebekah's therapy sessions and school continue and she seems to enjoy them all. She gets really upset if we go into town and don't go to school. It will be tough this summer when there are a number of long breaks. She will get pretty sad about that.

1 Shared:

At Tuesday, May 23, 2006 10:31:00 AM, Blogger steve Left a thought...


I am on it! Prayers to you guys. I love seeing that things are getting back to "normal"

Much love!


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