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.