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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Tuesday, December 20, 2005



Tuesday Evening

Rebekah didn't sleep very well last night. She threw up at midnight and then again at 5:15. Both times, she wanted her nutrition to be continued. After the second episode, she wouldn't go back to sleep for over an hour. She kept calling for Mommy. That made it pretty difficult for Mommy to get much sleep.

With the way Rebekah has been eating bites here and there and actually swallowing some of them without problems, we have some thoughts of trying to get her back to eating. We know it will be a slow process, but think it might be time to start working on that.

With that in mind, we wanted to start getting her stomach used to larger amounts (instead of the constant stream of nutrition from the pump). So, throughout the day, we gave her bolus feeds (larger amounts over a few minutes). We are starting out slow and allowing her to have the pump feeds over night to make up the difference. Each day, we will try for a little larger amounts until she can get enough nutrition in during the day and not need the pump at all.

Meanwhile, we are trying to sit at the table during mealtime and have food in front of her and encourage her to eat. At lunch time today, she wanted part of her sister's peanut butter and jelly sandwich and ate a few bites. At dinner, she wouldn't touch her plate. It is nice to have the table usable again, so that we can try to be social and work on eating.

Her diaper rash continues to be really REALLY bad. I am keeping it as coated as possible and being diligent in changing her diapers whenever they are dirty. She has been doing a very good job of telling Mommy when she needed a change. That has been very helpful. I worry that her diaper rash can cause an infection causing a fever, so it is really bothering me that she has such a nasty diaper rash.

Her temperature has continued to go up. It isn't yet to the point of being admitted for fever, but I am concerned about it. Please pray that the diaper rash heals quickly and that there are no fevers.

It has felt so good to have some semblance of order in the house. Having the Christmas Tree put up and furniture moved to where it is supposed to be and then getting the dining room back to usable is just HUGE to my emotional well being. The house is not totally put together, but each bit of improvement is good.

Tomorrow Grandma M will come and watch Sarah while I take Rebekah into clinic for counts. Doc said late last week that he thinks Rebekah might need Platelets, but doesn't expect her to need Red Blood with the transfusion last week. As always, we will have to wait and see. At least Platelets don't take as long to receive as Red Blood. Please pray that the appointment goes well.

Rebekah is not cooperating with going to sleep tonight. She is crying and asking for Mommy and Daddy. So far, we've been pretty patient, but I don't think that will last much longer. She has been given some medications to help with coughing, pain and stomach upset. Those should be kicking in shortly and hopefully the sedative side effect of them will start to do its thing.

8 Shared:

At Tuesday, December 20, 2005 10:22:00 PM, Blogger steve Left a thought...

Hope all goes well with the counts tomorrow! Glad you guys have all the tree and Christmasy (is that a word?) stuff up!

Merry Christmas!!

Much love and prayers

 
At Wednesday, December 21, 2005 5:05:00 AM, Blogger Alison Left a thought...

Continuing to pray!

 
At Wednesday, December 21, 2005 6:55:00 AM, Blogger JodiTucker Left a thought...

Just like Alison and MANY others......continuing to pray with love, Jodi

 
At Wednesday, December 21, 2005 7:28:00 AM, Blogger Jayleigh Left a thought...

Praying for no fever, good counts and healing of diaper rash, as well as rest for Mommy and Daddy and joy in your hearts this Christmas.

 
At Wednesday, December 21, 2005 8:12:00 AM, Anonymous Teresa Left a thought...

Lord, thank you for all the evidence of all the good things you have done for this family. Continue meeting their needs and wants Lord. Again I ask you to restore Rebekah's body with healthy flora and bacteria, balance her bodys PH, enrich her blood cells and bone marrow with your healing power from the top of her head to the tip of her toes. This I ask, to bless Rebekah and to bring you the honor and glory.Amen

 
At Wednesday, December 21, 2005 8:46:00 AM, Blogger mommyguilt Left a thought...

You are so blessed to have such a wonderful group of friends and family to help you out...even with the little things. What a Godsend they are. Glad to hear that you are all home again. I will continue my prayers for Rebekah and for the fever and diaper rash to dissipate.

Christina

 
At Wednesday, December 21, 2005 10:44:00 AM, Blogger Amy Left a thought...

I wanted to thank you for sharing Rebekah's story with everyone. I was introduced to Rebekah's Story earlier this month, but wanted to read it in it's entirety before commenting. Although I have been in tears some of the time while reading, I am greatful for the impact this has had on me. Your/Her story has caused me to realize that although life doesn't always seem to go the way we want it to, God is in control, and we need to look to Him for guidance to get through whatever obstacles we are faced with. You have been a great example of this, and for that I am thankful. I want you to know that I am praying for Rebekah to make a full recovery, for your continued strength while watching your daughter go through treatments, and that the help you have been receiving will continue to be there. Thanks again sharing your story. I will continue to pray! Have a Very Merry Christmas!!!

 
At Wednesday, December 21, 2005 12:51:00 PM, Anonymous Paul Left a thought...

Wishing you all a great christmas.Your all in my thoughts and prayers

 

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