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.

Wednesday, March 26, 2008

Doing Better

After fighting with Mommy, Rebekah finally fell asleep in Mommy's arms around 5pm Monday. Mommy asked Daddy to heat her up some dinner. That (maybe the smell, maybe the moving around a little) woke Rebekah up. She decided Mommy's dinner looked pretty good and she wanted some. She ate half of Mommy's and still wanted more. So, Daddy made us more and she ate a good portion of that, too! I guess after having not eaten all day, she was pretty hungry. By now, she wasn't fighting as much to get her eye patch off, but every now and then she was getting her fingers underneath and trying to pull it off. She needed to be watched carefully. We kept a close eye on her all night and finally (about 11pm) she told Mommy that she wanted to keep her patch on and help the doctor to take it off in the morning. After that, she did really well. Not only that, but SHE wanted to tell the doctor she was going to help and she didn't want Mommy telling him.

She did very well with leaving it alone for the rest of the time until the doctor's appointment. Once there, the nurse went to take it off and Rebekah wanted to help. The nurse (and Mommy - because Rebekah wanted Mommy to do it) did most of the work and Rebekah got to do the last little bit. That seemed to make her happy! She was not at all happy when she was told that she would need to have the shield put back on. After doc examined her, she didn't want the shield (metal cover with a bunch of little holes in it and a cloth around the edges - so that it is soft on the skin) put back on. She kept grabbing at it to pull it off. Not a good sign for being able to keep in on and this time Mommy was by herself with Rebekah.

That is when Doc told us about the "Elbow braces" they have to prevent kids from being able to bend their elbows and get their patches off. Doc was surprised I hadn't heard about them in Recovery the day before. That would have been nice. Anyway, we got a set for Rebekah and put them on her arms. She was not happy about it, but it made the ride home safe. I told her that once we got home, if she promised to keep her hands away from her eye, we could take the arms off and keep them off, but if she kept touching her eye or trying to take her patch off, the arms would need to go back on. Well the little bit of "lack of freedom" has been working. So far, she has done fine with keeping her patch on and not bothering it.

Every two hours (while we are awake), we have to take the patch off and put drops in her eye (anti-biotic/anti-inflamatory). I know she doesn't like having the tape removed, but she does a really good job of holding still and letting me do it. She isn't a big fan of the drops, either, but she is a trooper.

Just a little bit ago, while the patch was off, I covered the good eye and asked how many fingers I was holding up. She did a good job of answering correctly. Then she didn't want me to cover her eye, but she wanted to do it herself. This is big improvement from a week ago when she wouldn't let you cover her "good" eye and would make it very clear that she needed two eyes to see. She had a big smile on her face when she realized she could see with the bad eye. And then she said "me like surgery". Wow, what a statement from a little girl who has just been through all that trauma.

Sister Sarah came home yesterday evening and she's been doing a good job of staying away from Rebekah's eye, too. She wasn't too sure what to make of Rebekah when she first saw her. She wanted to know why Rebekah had a patch on her eye. We explained it to her and she seems to be fine with it (although she keeps asking "why, why, why" just like always). Just a few minutes ago, Sarah came running to Mommy saying "Mommy, we need you. Rebekah's eye patch is coming off". Rebekah was sitting still, arms away from her face. Once side of the patch had slipped out of the tape and the patch was hanging. Mommy put it back on and added another piece of tape to help. They are both being "big girls" about it and helping Mommy.

The shield needs to stay on until at least next Tuesday (our next appointment). And the drops are supposed to be for 10 days. Part of the healing process will include re-training the eye, so we'll need to patch the "good" eye again and make the bad eye do all the work. Pray that Rebekah will handle the patching and her brain can be re-trained to use the eye.

Thanks for the prayers, they have been helping. We know there is still a long road ahead for this process.

1 Shared:

At Wednesday, March 26, 2008 6:06:00 PM, Anonymous Darlene Left a thought...

What a relief! I'm so glad to hear Rebekah resolved to cooperate with the process. I had wondered about arm splints when you wrote about the difficulty she was having after surgery. Christian always had to wear those after his surgeries when he was little. Please be encouraged that we are "standing in the gap" for you in prayer. Thank you for the update!! Love, Darlene


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