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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Friday, March 30, 2007



Therapies, Haircut, Eye Exam

It has been another busy week. We came home from camping Monday morning. We did manage to get most of the stuff out of the camping trailer and get the trailer "parked" in the field. I'm not sure I can remember the last time the trailer was "parked" out of the way in the field, and not right up next to the house.

Wednesday morning, we took Rebekah to get a haircut. We went to Shami, Grandma A's hairstylist and the one who cut Rebekah's hair when she was first diagnosed with cancer and who cut Sarah's bangs the first time. Most of what Shami did was to get rid of the bad ends (and oh were they bad) and then to frame Rebekah's face a bit better. Shami suggested that we want to try to grow the left side of her hair (using the comb over effect) to just about collar level and call that good. If we try to grow it longer, it will only make it more obvious. The left side has a way to go before it is that long, so we'll have to wait and see how it looks. In the grand scheme of things, this just isn't a big deal.

Here are Grandma A, Rebekah and Sarah as we wait for the haircut.


Here is Rebekah pointing to her hair cut.


After the haircut, Grandma A, Sarah, Rebekah and Mommy all went to lunch (thanks Grandma A for the treat) and then headed up to Occupational Therapy. Grandma A played with Sarah while Mommy and Rebekah went to therapy. Rebekah did a good job at therapy. I was amazed watching her string buttons. She has struggled with the beads that we have, but she zoomed through the buttons like they were nothing. She concentrated on what she was doing and didn't seem to be struggling at all. After we finished, we took a look at their therapy pool. Maybe one day, Rebekah will use the therapy pool. She didn't seem overjoyed about the idea, but she wasn't freaked out about it either.

Then we headed for home, but we had to find a back way because the highway was closed. So we went on an adventure... Between Grandma A and Mommy, we were able to find our way. Now I know at least one more way home from that hospital.

Thursday, Mommy took Sarah to Grandma M's house while she took Rebekah to see the eye doctor. This was a new eye doctor for us, but Rebekah needed a good eye exam and this doctor was recommeded by her eye surgeon and has privileges at Emanuel so that if we need any exams under anesthesia or other procedures we could do them at Emanuel where we are more comfortable.

Rebekah did a really good job of cooperating with the tech (who did the first screening) and with the doctor. She had her eyes dilated and handled that well, too. Both eyes are a little farsighted, which is pretty common for kids. Her left eye is more farsighted than her right and has an astigmatism. The doctor wants us to put a patch on Rebekah's right eye 3 hours every day to try to strengthen the left eye so that the left eye doesn't become lazy.

Also, the left eye is definitely dry, but there are no signs of it being scratched. So that is good! We should continue to use the gel at night and should step up the use of eye drops during the day. We need to make the drops part of the routine. Mommy hasn't been really good about that.

They had some of the eye patches that we could purchase, so I bought one box of the pretty girl ones - they are pastels with pretty patterns (flowers, music notes, etc...). I only bought one box, because I didn't know if we were going to be able to make them work. When we started the exam, the technician asked Rebekah if we could put a patch on and she wanted nothing to do with it. I didn't think that was a good sign.

We talked about the patches last night with Daddy and Rebekah wasn't real excited about it. But we opened one up and took a look at it. Rebekah showed us how it went over her eye. She didn't want anything to do with actually putting it on.

This morning, we talked about putting on the patch today and she agreed to let me put it on. So she sat through breakfast with it on and is playing now with it on. She didn't fuss with putting it on and hasn't been tugging at it to get it off, nor is she grumbling about having it on. Whew! I expected it might be a battle, but so far she's done great.

Here is a picture just after we put the patch on this morning. The girls are wearing their "name" jammies and have a bad case of "bed hair".


This afternoon, we will be going into town for Physical Therapy. Wow has it been a busy week!

1 Shared:

At Monday, April 02, 2007 5:59:00 AM, Anonymous Anonymous Left a thought...

Sarah looks so much like Rebecca's 'before' pictures. God bless you as you continue through life's battles.

 

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