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.

Tuesday, September 29, 2009

Updates Are Getting Difficult

and we are afraid they are just going to get a bit more difficult as time goes on. This last week was a long one for all of us.

Let's start with some good things. The girls had a good week at school. Mommy and Daddy got to go to a "tea party" at Sarah's school. It was actually a grandparent tea day but since all of Sarah's grandparents are working during the day mommy and daddy got to go in their place. Sarah got to show us some of her current school projects and was happy that mommy and daddy were there.

Mommy and daddy also went to some doctors appointments for Rebekah and she is doing pretty good all around. One of the appointments we went to is a neuro-developmental psychologist. This doc basically oversees the general picture of how Rebekah is doing and coordinates a lot of the different specialists. She only sees Rebekah every 6-9 months and was THRILLED at how much progression Rebekah has made with speech, behavior, etc. From mommy and daddy's perspective there are small strides and lots of struggles, but from someone's perspective who doesn't see her every day she really is doing well.

Sunday after church some friends from church and elsewhere came over and helped for a few hours cutting, splitting and stacking wood for the winter. We have about 6 cords now ready to go and that should help with the electrical bills - something we really need as it gets colder. THANK YOU to all who helped.

Alson on Sunday "Mommy Debbie" walked in an als walk in honor of Frances. Here is Mommy-Debbie, her daughter-in-law Jessie and David, her "extra" son at the walk:

You can read more about it (and some other great stuff) at Debbie's Blog.

Mommy started the week with a nurse coming to the house to take blood as part of the enrollment in a medical trial in Atlanta, Georgia for familial als. Mid-week they called and mommy is now fully enrolled. In the next couple of weeks mommy and daddy are going to have to go to Atlanta for a few days. Not exactly a vacation but it will be some time away. This trial is not likely to be able to do anything for mommy but it may help others in the future.

Also this last week mommy had another diagnostic MRI. This test was more as a formality to make sure absolutely anything else that could be a factor in her diagnosis is ruled out. The doc was very clear to not get any hopes up that this might find something other than als, but we wouldn't have any problems with it if it did!!!

Last week brought us some continued degredation of mommy's abilities. Her walking is getting worse and she is often even using a cane inside the house now. She is not able to get out of a chair unless she can use her arms to pull herself up in some way. And while trying to do some cooking this week she has noticed that her strength in her arms/hands is getting worse. Using a spatula to chop up some ground beef browning in a pan was difficult as was holding some cheese in her hand to use a grater. Along with those specifics she is also just generally getting more and more tired, or said another way having less and less strength.

We continue to delight in every moment we have together and enjoy the little blessings very much as they come. Several times this week the girls have noticed mommy having a problem and really tried to step in and help her in any way they could. We really have been proud of them.

Please continue to pray for strength and comfort of both the physical and emotional kind. I don't think right now that I have the ability to address any of the emotional affects of the week but maybe soon in another post but rest assured they have been there too! We really can use your prayers and support right now.

(Please forgive any typos/poor edits as we are rushing to get out to the als clinic today with mommy and just don't have the time to go back and clean up this post right now.)

7 Shared:

At Tuesday, September 29, 2009 1:19:00 PM, Blogger Sara Left a thought...

We are thinking of you. Lots of love coming your way from the Wilkison's!

At Tuesday, September 29, 2009 6:11:00 PM, Anonymous Marie in Michigan Left a thought...

Heavenly Father, Mighty One - I lift up this wonderful family to you to watch over and take care of. You know their struggles. You know their pain. You're there with them every step of the day. I pray that you continue to walk with them through this tough, tough journey and bless them mightily. In your name I pray. AMEN


At Tuesday, September 29, 2009 9:46:00 PM, Blogger Trwaldo1 Left a thought...

We are here, let us know how we can help! We have people praying at church for you! Love, The Waldron's

At Wednesday, September 30, 2009 7:40:00 AM, Blogger Debbie Left a thought...

Thanks for the update. I'm sure it's hard to write this all out, but we so appreciate knowing how you all are doing.

You are always in our thoughts and we're just a phone call (and an hour's drive) away.

At Thursday, October 01, 2009 3:11:00 AM, Anonymous Anonymous Left a thought...

Amen to Marie's prayer.

It's been so long since I've been here and I am very sorry to hear about mommy's condition. I am lifting you all up in prayer, that you will be strengthened and comforted.

At Friday, October 02, 2009 7:48:00 AM, Anonymous Anonymous Left a thought...

Thanks for taking the time to post. I thank God for His presence in your lives and believe He is with you every step of every day. May His strength continue to shine through your lives as you continue to lean on Him. Love you guys. -- Teresa M.

At Friday, October 02, 2009 7:07:00 PM, Blogger David Left a thought...

asking God to bless you in every way with grace and mercy


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