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.

Sunday, July 09, 2006

One of Those Days

It has been one of those days. It started with Mommy having a headache and lots of things to do today. That meant that Mommy's patience were limited and the girls were testing her patience pretty much all day long. Daddy was planning to get some work done today, but after taking care of a few things outside (which also needed done) just wasn't in the mood to focus on work.

Daddy set the sprinkler up to water the grass. He was very careful to make sure that it wasn't getting into the window when he got it set up. Well, something changed and it started spraying into the window and got all over Mommy and Daddy's bed soaking bedding, the floor and all the stuff on the headboard. Ugh! Not a pretty sight. Neither Mommy or Daddy were happy campers.

Mommy's family came out this evening to celebrate Mommy's and Grandma M's birthdays. It was a great meal (thanks Uncle Chuck and Aunt Molly) and enjoyable visit. Grandma M helped get the girls into bed and then headed home.

They were still making noise a few minutes later, so Daddy went in to check on them. Rebekah was sitting up in her bed and Sarah was dashing accross the room to climb back into her bed. The wipe container was empty on the floor and wipes were everywhere (Mommy had filled it up earlier in the day) and Rebekah's bed was quite wet from the wipes. It is hard to get a clear picture of what happened, but both Rebekah and Sarah said that it was Sarah who had gotten the wipes out and made the mess. Daddy had told Rebekah to ignore whatever Sarah did and go to sleep. We had to modify that to explain that she could tell Sarah NO and call for Mommy or Daddy to HELP. We got Rebekah's fitted sheet changed, the wipes put up on the shelf above the changing table and both girls back into bed.

A few minutes later, we were hearing more noise from their bedroom and checked in on them. Rebekah was laying on the changing table (dresser) without pj bottoms or diaper covered neck to toes in desetin with a tube of desetin in her hands. The baby dolls that the girls had gone to bed with were covered in desetin as well as all the bedding, two of the three dressers, the floor and Sarah's hands and pjs. Daddy put Rebekah in the bath while Mommy worked on cleaning up the mess. The girls got new sheets and no blankets. Rebekah got pjs that will probably be a little difficult for her to get herself out of. Everything left on the shelf came down (and out of the room) as well as the stack of blankets on Sarah's dresser. Now Mommy has laundry to work on tonight. Desetin can stain pretty easily, so they need to be cleaned quickly. Unfortunately, there are several loads of desetin soaked laundry to do.

Sorry that it has been so long since we posted. We have been keeping pretty busy.

We took a long weekend (over the 4th) and went camping at the beach with friends Pat and Steve and their friends Mark and Roxanne. We had a good time. Steve did some fabulous cooking and we had mostly group meals which was great. We missed camping with Mom's family, but it sounds like they had a great time, too!

We continue to encourage Rebekah to eat. We got our "trial" box of juices and took them with us camping. After using several of them and having Rebekah wanting juice and asking for juice, we discovered that they were expired. Oops! Called the home health company only to find out that they don't have any more (they had gotten the box they sent from another branch) and the product is on manufacturer back order. Ugh! She will drink the banana cream pediasure periodically, but it takes a lot of encouragement from us to get her to drink it.

This week, we had an appointment with a Developmental Specialist - Dr. Raddish - one Rebekah had seen before her cancer diagnosis. All in all, it was a good meeting. I had been debating whether to continue to use this specialist or start using one at Emanuel (where Rebekah's cancer treatments were and follow ups are). I had seen one of Emanuel's specialists and was debating in my mind. After the appointment this week, I'm inclined to stay with the specialist she has seen before. She is much more proactive and really seems to be looking at the broad picture for Rebekah.

Dr. Raddish is a bit concerned about Rebekah's diet and some deficiencies in it - especially iron. So we need to put her on a vitamin supplement and hopefully get her in to see a dietician so that we can look at her diet and make adjustments as necessary.

Dr. Raddish had some thoughts about Speech Therapy and will contact our Speech Therapist to discuss them. Meanwhile, she also suggested that we investigate some other options for "free" speech services through Shriner's Hospital and Scottish Rite. In addition, we may look at adaptive assistance (having a device that Rebekah can use to "speak" for her). There is some thought that Rebekah's mind knows what she wants to say, but she can't tell her mouth how to say it. The adaptive device could help her so that she doesn't get frustrated with not being able to say what she wants. So, we'll investigate those options.

I know there is probably more to tell, but I don't know what right now.

7 Shared:

At Monday, July 10, 2006 5:39:00 AM, Blogger JodiTucker Left a thought...

Wow!!......Is the desitin all cleaned up? No wonder it's been awhile between posts. Little kids keep you really busy. Will continue to pray for all the upcoming therapies for Rebekah and for a little reprieve from the girls' orneriness! love from OH, Jodi

At Monday, July 10, 2006 7:43:00 AM, Blogger Katie Left a thought...

sounds like mommy and daddy have their hands full with some precocious little girls (ahahaha, sorry but i have to laugh at their antics), still praying for all of you and hope that therapy goes well for rebekah

At Monday, July 10, 2006 8:50:00 AM, Blogger Carol Warlick Left a thought...

I have to agree with Katie, I have to laugh at Rebekah and Sarah's antics. They sound like two sister's who love to each other. It sounds like everyone has been really busy. I am glad to hear you,ve been camping and enjoying family and friends. I continue to pray for all of you and hope that Rebekah continues to eat and drink more on her own and that therapy goes well.

At Monday, July 10, 2006 7:46:00 PM, Blogger My Kid's Mom Left a thought...

Oh dear - I had the same reaction as Katie and Carol - I was laughing so hard that my husband asked me what was going on! It is SO good to hear how the girls are getting into some mischief (although I'm sure you have a different take on that than I do). It just takes me back a few years to when my girls were that age. God bless you guys!

At Tuesday, July 11, 2006 4:38:00 AM, Anonymous Jayleigh Left a thought...

I had to giggle a little with the Desitin incident. It's just that it screams "active little girls" and not sick ones.

Praise God for all of you. Bless you, too.

At Tuesday, July 11, 2006 1:32:00 PM, Anonymous Stephanie Roscoe Left a thought...

I got a good chuckle out of the desatin story myself. My two little ones had a similar incident in their playroom. Some of their babies and toys never fully recovered. Desatin is NOT easy to clean up. I feel for you! :-)

At Wednesday, July 12, 2006 7:13:00 PM, Anonymous Sue - NJ Left a thought...

Wow! Did that Desitin story ever bring back good memories! (They're always good memories after 15 or 20 years). When my 20 year old was about 2, he went into the bathroom and got my panty shields, peeled off the backs(of the entire box!)and stuck them to all of his furniture! Imagine my surprise! I guess it was easier to clean than the Desitin though...and smelled a whole lot better. They may be mischevious, but they are normal, healthy, mischevious girls. What a blessing from God!


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