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, June 19, 2006



Feeding Evaluation and More...

Today, we had a scheduled appointment at the hospital with a Speech Therapist for a Feeding Evaluation. Due to some earlier cancellations, we were able to go in at 11:30 instead of our 12:30 appointment time. Debbie met us at the hospital and watched Sarah, so Rebekah and I could work with Lisa (the speech therapist) and not have to worry about Sarah. Debbie's kids were really upset that they didn't get to see Sarah because they are still in school. Sorry guys!

Rebekah did really well and we got some good ideas. Lisa was really happy with how much progress Rebekah has made since she last saw her. She often saw Lisa while we were inpatient at the hospital. Her comment was that we are in "transition" phase - transitioning from needing the g-tube to taking all of her nutrition orally. She didn't see anything that led her to believe that she couldn't get to a point of not needing her g-tube. That is all good news.

Generally, we are on the right track and should keep doing what we are doing. We have been putting food in front of her and letting her eat, without a lot of pressure. This seems to be a good approach. Offering her foods that are higher in calories is good. Lisa gave me some ideas of higher calorie foods that she might be willing to eat - Swiss Miss Banana Cream pudding, Cheetos, Gerber Fruit Juice Snacks, Resource Breeze, etc...

Resource Breeze are juice based drinks that have as many calories and nutrition as the pediasure products. But, because they are juice based, Rebekah might drink them. She did seem to like the samples we tried - drinking one completely and some of the other. If we could get her to drink three of those each day, then we might be able to drop the pediasure. Now, to see if we can get insurance to pay for them and get them from our home health company.

Lisa also suggested that we not worry about "bad" calories right now. Later, we can work on better food choices as her weight increases and we are not as concerned about weight gain. So, now I can have one set of foods for Rebekah, another for Sarah and yet another for Mommy and Daddy. What joy! And then, there is the appeal factor of food that is on Mommy's plate. You know, the food on Mommy's plate tastes much better than the food on Rebekah's plate (even when it is exactly the same).

While we were gone this weekend, Rebekah did not want her tummy drinks (although I offered them several times each day), but she grazed all day long. I wondered how her weight was doing. After two days of grazing and no tummy drinks, her weight was doing fine. It was still in the range that I consider "good" (37.5 - 38.0 on our scale). That was good news.

Our insurance has maximums for "therapies" which we are rapidly approaching. We are hoping that they will approve more dollars, but not expecting them to. Please pray that the insurance company would approve more dollars. If not, we will need to look at what we can do so that Mommy can work with Rebekah on her therapies with some sort of home program and then meet with the therapists on a monthly basis or something like that. One day at a time...

In addition to the possible changes in therapies, we will be changing her school schedule. We had our annual IEP/IFSP meeting with the school to look at goals for the next year. All in all, it was a good meeting. We will be doing some baseline testing to see where her skills are at currently. The chemo and radiation can have a dramatic effect on her abilities and so we want to know where she stands at this point in time. No testing will be done until July, but at least it is in the works.

Part of the discussion included whether she was in the "best" class for her or if we should consider switching her to another class. We decided that moving her to a class that meets for a shorter period of time each day (1 and a half hours instead of 2 hours) but more days a week (3 instead of 2) might help her. The repetition could help, since she seems to take a long time to process what she is learning. We will try it and have the ability to re-evaluate if necessary. So, she will now be in a class that meets Monday, Tuesday and Thursday mornings. That change, could mean a change to her therapy schedule, if we are able to continue with therapy. We'll deal with that when (and if) the time comes - school doesn't start back up until the second full week in July.

8 Shared:

At Tuesday, June 20, 2006 12:55:00 PM, Blogger Eva Left a thought...

Sounds like lots of positives on the horizon. Good to hear.

 
At Tuesday, June 20, 2006 6:04:00 PM, Blogger Trev & Rebekah Left a thought...

Thanks for being real and honest. I love how you spelled your daughter's name as that is how I spell mine.

 
At Wednesday, June 21, 2006 1:31:00 PM, Blogger My Kid's Mom Left a thought...

It sounds like a LOT of good things happening (other than the insurance stuff). Thanks for the update - I love to know how things are progressing.

 
At Wednesday, June 21, 2006 2:15:00 PM, Anonymous Jayleigh Left a thought...

"Mommy can work with Rebekah on her therapies"

My prayers are with all of you... even though things are going so well, it seems like it's quite scary to be doing the therapies "on your own."

May the Lord bless and keep you.

 
At Thursday, June 22, 2006 6:29:00 PM, Blogger Jojo Left a thought...

Just checking in. Glad to hear things are going well. Having a child who never ate anything by mouth, but received all her feeding via a feeding tube - I can only imagine how thrilled you are. God bless!

 
At Friday, June 23, 2006 10:51:00 AM, Blogger steve Left a thought...

prayers for more approved cash!

 
At Friday, June 23, 2006 2:38:00 PM, Blogger Lora Left a thought...

Glad to hear that Rebekah's weight is doing very well and that she is trying to eat foods without any pressure. Hopefully she will be without her g-tube forever, starting very soon.

~Hugs to all of you from Alaska!~

 
At Saturday, June 24, 2006 2:30:00 PM, Blogger thequeen Left a thought...

Just wanted to stop in and say howdy. I've been walkabout for a bit but I am back, Been praying to goddess for little miss.
Glad to hear she is gaining weight and those food suggestions where great. Those folks really know what they are doing.

 

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