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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Tuesday, April 01, 2008



1 Week Eye Follow Up

Rebekah's eye looks like it is healing well. They did a vision test. Rebekah never cooperates real well with them, and today was no exception. But we did get her to semi-cooperate for a while before finally giving up. They showed her vision in the left eye (the one that had the surgery) as 20/100. It might have even tested better if she was willing to cooperate longer. Doc was really impressed with that good of vision this quickly after surgery. One thing it tells us is that her brain IS using that eye - which was a concern leading up to the surgery.

She still wants nothing to do with having the good eye covered with an eye patch. They try to do that for the eye exam. She really hasn't been willing to wear a patch since she started having such difficulty seeing out of the left eye. We will need to start patching the good eye in another week, so we'll have to work on that one - "selling" it to her. Meanwhile, she should continue to wear the shield for a total of two weeks - so until next Monday. If she is being really good about keeping hands away from her eye - not rubbing it and such - then she could have the shield off for some of the time. I think it is probably best to keep it on and keep it protected, but we may give short opportunities while well supervised to have it off. Once the shield is off, we start patching the good eye. Starting at 1 hour per day and moving up to two hours per day. Please pray that she will tolerate it.

We got a new set of drops that are just an anti-inflammatory (and no longer has the anti-biotic in it) for the next few weeks. We'll give it 4 times a day for this week (we were giving the other one every two hours while awake, so this is a decrease) and then next week will be every 3 hours and then every two hours...

Our next appointment is scheduled in two and a half weeks. I explained to doc about the Chest CT results and the upcoming scan and that we didn't know for sure how things would play out, so we might end up rescheduling and not get in quite when we should and that the eye issues may have to play a second seat to the other. One day at a time...

We talked last night about having to get up early and go see the eye doctor. Rebekah wanted to know if she was going to get "sleep booboo medicine" - that is what she calls the anesthesia medicine. Sarah wanted to know if it was a "skip breakfast" day - that is what we (the whole family) have to do when Rebekah has anesthesia. We explained that today would be just a doctor visit but in a few days we would have a skip breakfast/sleep booboo medicine day. And they were fine with that. How many kids do you know who would ask that kind of question when talking about seeing the doctor?

Meanwhile, we wait for the Pet scan. We are on pins and needles. It is difficult to plan anything right now. We hope and pray for the best and yet know it could be the worst. It is a terrible feeling.

4 Shared:

At Tuesday, April 01, 2008 10:47:00 PM, Blogger Debbie Left a thought...

Sending prayers from Italy now. You are all in my thoughts.

 
At Wednesday, April 02, 2008 7:55:00 AM, Blogger Donetta Left a thought...

Oh Sweet Lady, I have not been on line a lot lately. What A ride you have had. I will hold you in my heart and conversations with Abba. I do trust He is holding you up. Peace be with you.

 
At Wednesday, April 02, 2008 12:06:00 PM, Blogger My Kid's Mom Left a thought...

I'll be keeping you so very close in prayer tomorrow morning. Pins and needles, indeed.

 
At Wednesday, April 02, 2008 6:50:00 PM, Anonymous Anonymous Left a thought...

My heart is aching for all of you, and it is very heavy at the idea of Rebekah going through any more. She has truly touched us. We are all sending our prayers for healing with you tonight and tomorrow. We wait with optimism. God bless.- Pam Brown

 

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