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.

Thursday, May 04, 2006

What a couple of days it has been

I feel like we've been running ragged. Tuesday, Sarah, Rebekah and Mommy headed out the door late morning, dropped Sarah off with friend Gaye (thanks Gaye) and then Rebekah and Mommy headed down to the hospital for a few appointments.

First, we stopped at the surgeon's office to have them take a look at her g-tube site and make sure they didn't see any problems (it seems to bother her and has a little bleeding in the discharge). It looked fine to them, so no need to worry. I really didn't think it was an issue, but figured it didn't hurt to check.

Then we headed over to Diagnostic Imaging to see if we could get her chest xray and panorex done. They are part of her 3 month scans due this month and we figured if it worked, great. Otherwise, her MRI is scheduled for May 19th and we'll try to do them then. They were able to fit us in, actually pretty quickly. We got the chest xrays (front and side), but she just would not cooperate with the panorex. It just isn't possible to do the panorex if she won't cooperate, so we bailed on it. No convincing or bribing in the world was going to work. Ugh! Later in the day, Daddy got a phone call that said that the front view chest xray wasn't good enough and it needed redone. Ugh!

After that, we grabbed a bite to eat and got to see Grandma C. Grandma C took Rebekah for a little walk.

Then we headed up for her appointment with the development and rehab doctor. That was quite an appointment. He examined her and watched her play and walk, etc... He suggested that we keep her in the therapies that she is in. He also explained that sometimes, when a child has delays in multiple areas (in Rebekah's case - gross motor, fine motor and speech) without a known cause, therapies may be helpful but they often won't help much. That doesn't mean we should stop the therapies, just that we need to understand that it may not help much.

As for her language skills, he suggested that we may want to continue to teach her signs as an alternate expression of language. If we wanted, we could look at alternative communication devices, but he didn't feel that was necessary.

As for the shoe inserts, they are a good idea. They should help with the pronation (walking on the inside of her foot), but may only help while she is wearing the inserts. Her pronation is not so severe as to need other medical intervention and she is able to walk, so those are goood things.

Her reflexes have been badly damaged by the chemotherapy. Before her treatment, they were described as brisk and now they can barely be found. They may return, but we'll have to see.

It would be a good idea to get her into the Feeding Clinic for an evaluation. So he gave us a referral for that. Hopefully, they will have some useful hints for us with getting Rebekah to eat more. We will try to get that scheduled.

All in all, I guess what I learned is that we are doing the right things, but we shouldn't expect miracles. She probably won't catch up with her peers. We may never know how much of her difficulties are caused by the cancer treatment and how much of it existed from the Cerebral Palsey, but it doesn't really make a difference to how she would be treated.

Just as we were getting ready to leave the hospital, Daddy was arriving at the hospital to meet with a client. So we got to see him for a few minutes, until Rebekah started to melt down and we needed to head for home. After picking Sarah up, we headed home, got some dinner and I put the girls to bed. By that time, I had an incredible migraine headache. The girls were both screaming and not wanting to go to bed, which did wonders for my migraine. I gave Sarah some Tylenol (in addition to the decongestant) and she seemed to settle down. Rebekah and I had a talk about Mommy not feeling well and really needing Rebekah's help and she settled down, too. I went right to bed, too. Several times during the night, one or the other of the girls needed attention and by 6:30 Sarah was up and wouldn't go back to sleep. Not only that, but she had made a poopy mess all over her bed. One more thing to deal with. She went right into the tub. What a way to start the day.

Wednesday, was school for Rebekah and errands for Mommy and Sarah. Grandpa came out and had some pizza with us for dinner and played with the girls. They always enjoy that.

Daddy has been really busy this week. He hasn't been home any evening this week.

The girls have been uncooperative. Sarah continues to stand up in her high chair and I haven't been able to get her to stop. They are disobeying Mommy, running away and just being uncooperative. Yesterday, when we took Rebekah into her class, Sarah did not want to be carried, but when I set her down she wouldn't walk either. Ugh! Then they will run in opposite directions. By the end of the day, I'm exhausted. I find myself raising my voice so much with them that I'm getting frustrated, but they don't seem to listen unless I do (and then only some of the time).

There is one thing I forgot to tell you in my last post. Saturday, while Daddy was out he drove through Yamhill (the town where the High School is that adopted Rebekah as their Sparrow) and saw a car wash, which got him thinking about the Sparrow Club and that we hadn't heard anything from then and wondered what they were up to. He thought about getting the car washed, but they were all full including a truck and trailer so he didn't stop. Later that day, we got an email from a friend who stopped at the car wash (probably the truck and trailer that Scott had seen) and they were surprised to find out that the proceeds from the car wash were going to Rebekah - it was the Sparrow Club. It was such an encouragement to us, to hear about it. Had we known about it in advance, we could have brought Rebekah down. Oh well!

8 Shared:

At Thursday, May 04, 2006 4:55:00 PM, Anonymous Tiffany Schwander Left a thought...

I find that if I focus on the boys, playing with them, chasing them, doing puzzles, reading to them, throughout the day, our days run smoother. I do something with them and then I do a task- sometimes they help me empty the dishwasher or put laundry in washer or dryer. If we are doing errands I try to give them each moments of love and attention. For example, as I pick each one up to put into the carseat or stroller I tell them how much I love them and give lots of kisses and snuggles! The best thing to remember is to try to catch your kiddos being good- label it and highly praise! For example, "I love how you gave Sarah your ball, Rebekah!" "You two girls are playing so nicely together, Mama loves that!" There is a common rule that for every negative comment you should have 5 positives- I try to double it! I'll send you some helpful parenting devotionals that have helped me! Another key, find at least one time a day of 15 minutes for devotion! Remember to reinforce yourself throughout the day too! For example, after getting the dishes done, make yourself a cup of tea or pour yourself a tall glass of Diet Coke (Caffeine-free of course). I hope some, if not all of this has been helpful! You are already doing one suggested health tip for controlling stress: Sharing your feelings- what a blessing this blog has been for all! With lots of love, your little sis, Tiff

At Thursday, May 04, 2006 9:26:00 PM, Blogger JodiTucker Left a thought...

I echo everything Tiffany said and add one thing for stress or even no-stress:


love and prayers, jodi

At Thursday, May 04, 2006 10:26:00 PM, Blogger Eva Left a thought...

Wowza. You've been busy!

At Thursday, May 04, 2006 11:40:00 PM, Anonymous Toni Left a thought...

Just a simple suggestion.. hope u don't mind. I don't know what the girls diet is like, but there has been research that I have read about ingredients such as: artifical flavors, colors, bht, bha that are not only bad for your health, but cause children to run wild and moodiness.
I hope u don't mind the advice. I have a 3 1/2yr old and keeping those things out of her diet has been amazing to see that she does not do alot of the things that other kids do.. that parents wish their kids would stop doing = )

At Friday, May 05, 2006 1:03:00 AM, Anonymous Stephanie Left a thought...

My name is Stephanie. (I'm a client of Scott's.) My little girl and I pray for Rebekah everyday.
Just reading your last post made me want to take a nap! You must be exahusted! I have two little ones just 11 months apart, so I know how tiresome it can be.
Take care of yourself. Get some rest if you can.
Blessings and Prayers--Stephanie

At Friday, May 05, 2006 10:04:00 PM, Anonymous Anonymous Left a thought...

Hi Folks,

I usually check the blog in the evening.

If you find out in advance of any events coming up in Yamhill with the Sparrow folks, please let me know.

Yamhill's only half-way to Banks from my place, not hard to get to. :)

ad7gt (ad7gt at arrl dot net)

At Monday, May 08, 2006 9:30:00 AM, Blogger operamama Left a thought...

just wanted to let you know that you have a new listener and that I am thinking of little Rebekah often today. I don't know what it is like to be where you are, I have a 2 little ones, 2 and a half and 13 months; but it is inspiring how you are sharing Rebekah's story with us. Just know that you have helped me today with your stories and thoughts on your daughter. Thankyou

At Monday, May 08, 2006 12:10:00 PM, Blogger operamama Left a thought...

I know that you don't know me at all, but I can just share with you what helps me when I get really close to melt-down with my little kids, and my day seems to be going badly. I get in the car and drive to Schlozky's and get a Dr. Pepper and a small bag of chips, listening to christian music on the way there and back. It is just the refresher that i need to give more of myself to my kids. they usually enjoy the drive and the treat as well. hope that helps a little.


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