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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Wednesday, May 02, 2007



Feeling Discouraged

In the last two weeks we've only had one comment. I don't know if that means that everyone has lost interest in what is happening with us or if people are checking in but not taking the time to comment. And to add to that, we haven't seen much interest in a gathering while we are in Ohio. So, please, if you are interested let us know. Tell us what you want to hear about.

We've been pretty frazzled at our house. Rebekah has finished her course of antibiotics and seems to be better, for the most part. She has been having some pretty grumpy spells and I'm not quite sure what is causing them - tired, pain, frustration. I'm keeping an eye on it.

May is the month for our next round of scans. We did the Panorex last week and Friday we have the MRI and CT. Next Tuesday, we'll meet with Oncology (after Tumor Board has met) to find out results. So please pray for safety during the tests on Friday and that all is clear.

We are now into the month of Rebekah's Make A Wish trip, so the girls are getting excited. We continue to mark days off the calendar and Rebekah and Sarah won't let me forget about it.

Here is a look at May's Calendar:


Daddy is really busy with work and Mommy is trying to help him out. Plus we're trying to have everything ready for the trip. I'm not sure how we'll get everything done. One step at a time, I guess.

I took Rebekah to see a Dietician at Shriner's last week to talk about her eating and see what suggestions she might have to get Rebekah eating more instead of relying on the special Juice drinks. Her suggestion was to limit the amount of the Juice drinks that Rebekah can have. Why didn't I think of that? Anyway, I've slowed on the Juice drinks and Rebekah is eating more. Now I'm trying to balance how much and when to allow the juice drinks. I don't want her to lose much weight, but she can spare a little so I'm not fretting over it.

Tomorrow (or maybe I should say today), Rebekah will get a new speech device from school. We'll be meeting with the augmentive communication person and trying it out with Rebekah. I'm looking forward to having it and trying it out at home. I've been very frustrated with the device we've had and I'm hoping that this one will be easier to use and more practical. Only time will tell. One more thing to try and do over the next few weeks - learn a new device.

I've been dealing with our Home Health Company and Insurance Company about some bills. It seems that every month the bills get processed differently. Some months, they get multiple bills. It has been a mess. I've been dealing with it for a while now - trying to get it all sorted out. Then, on top of all that, they have been charging us $900 a month for "enteral supplies" in addition to charges that look like the actual products we are getting. We've been billed the $900 a month pretty much since we started using them. When our needs went down, I expected the bill to go down too. It didn't.

In trying to figure out what is going on with the bills, I discovered that the Home Health Company and Insurance Company have a contract that "requires" the Home Health Company to bill $30/day for providing "enteral supplies". This covers things like gauze, bags, delivery service and "overhead". It does not cover "products" like the pediasure, resource breeze juice drinks, pedialyte, or the use of the pump we had for quite a while - those are all billed separately.

Some months, when the bill was processed, the $900 was paid in full by insurance. Other months, it was paid at 80% leaving me to pay $180. I would call the insurance company and ask them to reprocess it, since it was different from how they've been doing it and it would usually get taken care of. It has been a pain to deal with. Anyway, in speaking with the insurance company, our case manager told me that in reality we should be required to pay the $180 but they've been processing it differently to get it paid at 100% and she didn't know if they would be able to continue to do so.

Great! Now I'm having to pay $180 to pay for "overhead" and delivery when I can order supplies from Walgreens.com with free shipping for right around that amount. Why do I want to continue with the headache?

We are switching home health companies to one that doesn't charge a "per diem" rate (like the $30/day that the other company was charging). Effective today, we are on the new company. I called them last week, because I knew we were going to need supplies this week. They were very nice to deal with and we should have a shipment Wednesday or Thursday of this week.

Our insurance case manager said that we opened Pandora's box with them and they are re-evaluating the use of the other home health company. It sounds like the other company may be losing a lot of business. The case manager said that they had been told to use that company when possible and they had met the employees of the home health company. I have to wonder if someone will be losing a job over it. No wonder Health Insurance costs so much!

10 Shared:

At Wednesday, May 02, 2007 4:00:00 AM, Blogger Suzy Left a thought...

Sorry for not commenting more - I am still reading and I still care xxx

 
At Wednesday, May 02, 2007 8:49:00 AM, Anonymous Debbie Left a thought...

Good Morning -- I, too, check every day to just stay up-to-date and you're always in our thoughts. Wish we could go to Ohio with you, but our California trip doesn't allow for that.

 
At Wednesday, May 02, 2007 9:48:00 AM, Anonymous Anonymous Left a thought...

Please do not become discouraged. There are probably a lot of people like me who check in on you all every day (I have been for a long time) and pray for your family. Some days that is what I get done is "check on Rebekah" and pray for her and the whole family while I work around our home with our 3 medically fragile children. I indeed understand the frustrations of the daily life. And I know how to pray and believe for miracles in her life and in the life of your whole family. Silence does not mean we do not care...we are just praying HARD!!! love to you all.
Deborah in Tennessee

 
At Wednesday, May 02, 2007 10:22:00 AM, Anonymous Anonymous Left a thought...

Here every day - we're always here in spirit. Wyla

 
At Wednesday, May 02, 2007 11:59:00 AM, Blogger Robyn Left a thought...

Those residing in Robyn's Nest are still watching and praying... at least once a day!

If you ever have an Oregon party... let us know, Ohio is a little ways to travel, though my daughter would love to see Dora! I know you guys will have a blast!

 
At Wednesday, May 02, 2007 12:38:00 PM, Anonymous Kat Left a thought...

I've been reading and praying for your sweet family. :-)

 
At Wednesday, May 02, 2007 1:28:00 PM, Blogger Laura Left a thought...

Don't feel discouraged! I check in to see what's going on with Rebekah every few days. It doesn't mean anything that no-one leaves comments. I almost get no comments on my blog, not even from my family! Have a great trip in Ohio!

 
At Wednesday, May 02, 2007 1:30:00 PM, Blogger Tammi Left a thought...

Another 'Hello' from a fellow reader who also check-in almost every day but doesn't comment much. Your family is in my prayers.

 
At Wednesday, May 02, 2007 2:09:00 PM, Anonymous Anonymous Left a thought...

Sending encouragement your way. Still here praying and checking up on you. God bless you guys!!!
KelliW

 
At Friday, May 04, 2007 10:18:00 PM, Blogger Eva Left a thought...

I'm still here, just not able to read every day - so busy - it's more like once a week I try to catch up on blogs.

 

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