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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Monday, May 01, 2006



We are Still Here

We just haven't posted in a few days - well almost a week. I (Mommy) just haven't had much energy to do anything. I've been in a bit of a funk. So, sorry that I haven't posted.

Sarah's leg seems to be just fine. We had one more little "I'm not happy walking on it" episode which lasted until I picked her up and that has been it.

Rebekah has been doing well with her bolus feeds during the day. There have been several days that she hasn't needed anything for most of the night (at least after I go to bed). And she is handling it without any dilution, so that is great!

Rebekah has been complaining of owies in her mouth, which is usually where she points whenever she hurts, but in the last week or so I actually think she has owies in her mouth. Not quite sure what the deal is, but she tells me the owies are on her tongue and if I give her some magic mouthwash (on a toothette - which is a pink sponge on the end of a stick) and ask her to put it on the owies she puts it on her tongue. I couldn't see anything wrong with her tongue and finally took her to her pediatrician today to look at it. He doesn't see anything wrong either and her throat looks good. So we keep doing what we're doing.

Rebekah also has had some blood in her snot and she's been sneezing a lot more than usual. So, I asked the pediatrician about that, too. With the drying that she probably experiences thanks to the radiation, we could expect some blood to show up. We can use a little vaseline or neosporin to try to keep it moist and see if that helps. I bet that goes over well! Again, no obvious signs of trouble.

Mommy, Daddy and Rebekah all seem to be fighting some allergies. And Sarah seems to have come down with a bit of a cold - runny nose. Oh what fun!

Potty training continues... She has just about used up the stickers that I bought - I guess I'll need to get more (although I know I have more stashed around here somewhere). She has been playing the "I'm done, no I'm not, yes I am" game with me which isn't any fun. The other day, it landed her butt in the water. She had pushed the stool away from in front of the toilet and got herself down (which she doesn't have any trouble doing) and then decided she wasn't done so she tried to get herself back up (I'm telling her not to, but she's got ahold of my hands and won't let go). So in pushing her way back up, she pushes her potty off and it goes flying, but she doesn't realize it and pushes herself up on and fell right in. Boy was that a shocked look on her face! Mommy got her right out and cleaned up. She hasn't been so adimant about not having the stool.

This week is a busy week. Today was the trip to the pediatrician (which meant we had to cancel speech therapy) and school. Tomorrow, she will see the nurse practitioner at the surgeon's office to have a look at her g-tube site (it still seems to be bothering her and there is a bit of blood periodically) and then she sees a Developmental/Rehabilitation specialist. Wednesday is school, Thursday is occupational therapy and Friday we should have a playdate with cousins Jacob and Michael and also go out to a barn where we may sign Rebekah up for some Horse Riding Therapy.

Sarah just loves to take Rebekah to school and play with the sensory table. She was a great trooper through all of our errands today while Rebekah was in class.

9 Shared:

At Monday, May 01, 2006 5:22:00 PM, Blogger jel Left a thought...

I'm glad to see you post again, I was getting worried! glad to hear, that nothing to major is wrong!

thanks for posting!
hope you all get to feeling better!
take care
God bless
((((huggs))))

 
At Monday, May 01, 2006 6:51:00 PM, Anonymous Anonymous Left a thought...

We have been missing you. We check in every day and were just wondering what was going on with ya. We are having lots of seasonal sinus problems around here too. Hope you all are better really soon. You continue to be in our prayers from Tennessee.

 
At Monday, May 01, 2006 7:21:00 PM, Blogger Eva Left a thought...

Glad the feeds are going better. I figure - if you can't post because life is busy with status-quo - non-urgent matters - this is a good thing. :)

 
At Tuesday, May 02, 2006 10:43:00 AM, Blogger steve Left a thought...

glad all is well

 
At Tuesday, May 02, 2006 6:13:00 PM, Blogger Shelley Left a thought...

Good to hear that things are going well. I totally understand about allergies - I have the year round kind.

 
At Tuesday, May 02, 2006 9:11:00 PM, Blogger Darlene Left a thought...

Life still sounds busy, but this is all 'good busy' now.

 
At Wednesday, May 03, 2006 1:08:00 AM, Blogger Lora Left a thought...

I am so happy that Sarah's leg seems to be just fine and that Rebekah's daily bolus feeds are going well. I hope that her mouth owies go away and those allergies too that you three seem to have. I think that the horse riding therapy is exciting and I do love horses, so I hope that you put Rebekah in the program. I plan to put Griffin in a program just as soon as we can. Potty training can be lots of "fun" amusing yet frustrating. May you find your sense of humor in it anyhow.
~Love and Hugs~

 
At Wednesday, May 03, 2006 6:28:00 AM, Blogger My Kid's Mom Left a thought...

It was good to hear from you again! I've been thinking about you a lot lately.

 
At Saturday, June 03, 2006 8:25:00 AM, Anonymous SuzAnne Reber Left a thought...

Wondering how your family is doing and Praise God ,you are
coping wonderfully with your 2
beautiful girls.
Will keep you in prayer,SuzAnne

 

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