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, February 09, 2010



Update on Mommy

We don't have the results back yet on Rebekah's scans. We meet with Oncology tomorrow (Wednesday) late in the day to follow up on them, so we should have some news then. After her anesthesia, she usually screams at least half if not all the way home in the van. Last week, she was upset for the first few minutes and then calmed down and wanted to eat. It was quite a change from her "norm". There were some changes to the anesthesia that might have accounted for the difference. It certainly made for a nicer day.

We (Mommy & Daddy) saw a new (to us) doc at the ALS clinic Monday. After examining Mommy checking her strength in her arms and legs, she wanted to know how in the world Mommy was able to walk. It didn't seem possible to her. She prescribed a new medication to try to help with the pain. We will give it a try and see how well it helps. She also signed the Doctor's portion of the "dream" application, so we can work on finishing up the application and get it submitted.

The physical and occupational therapists want Mommy to spend a lot more time in the wheelchair in order to help conserve energy and avoid falls. There was talk about trying a knee brace to see if that would help, but after thinking about it for a little bit we're not sure it will help. We may or may not give it a try. Also, they want Mommy using the walker and not the cane when she walks. As Daddy says "Mommy is stubborn", so we'll see how well that works.

As for Nutrition, Speech Therapy, and Aug Comm there wasn't a lot of change or need for much discussion.

The respiratory therapist performed her tests. Mommy's lung capacity continued to be above normal - something like 118%. The lung test that Mommy failed last time (Negative Inspiratory Force - ability to breath in quickly) should have a score of 60. In November, Mommy scored a 40. In December, Mommy scored a 32. Yesterday Mommy scored 52. Not sure what that means. The score of 40 meant Mommy qualified for using the breathing machine.

While we were at clinic, the fire alarm started going off. We're on the 3rd floor of the medical office building. There were 4 of us in wheelchairs and the elevators weren't working because of the alarm. They wanted everyone who could exit the building to use the stairs and get out. Those of us in the wheelchairs and those with us stayed at the top of the stairs, but others did exit. Since it wasn't clear that there was a problem (we weren't seeing fire or smelling smoke) we waited until we heard more. There was an alarm that had gone off, but the firefighters were not able to locate any problem. We didn't have to be carried down by the firefighters, so that was good.

After that excitement, the nurse needed to draw blood for some tests. I'm sure the nurse was a little shaken by the alarm event. Mommy never has been easy to get blood from and it seems to have gotten worse in recent months. So after three pokes we were able to get the two vials of blood necessary for the tests. The nurse felt really bad. That seems to be the way things go.

The Nurse from clinic called today suggesting that we might want to meet with the pulmonologist. Now that we're using the breathing machine, they would recommend working with the pulmonologist. We could meet with them soon or wait for the next clinic visit in three months or schedule something in between. We're not sure what they would help with and so we are not sure what we will do for that.

Mommy seems to be on a stable dose of the blood thinner (anticoagulant), so she gets to go a month now without being poked for that one. Yay! Hopefully this dose will work and won't have to be adjusted.

Thank you for your continued prayers. We know that is the only way we make it through the days.

3 Shared:

At Wednesday, February 10, 2010 8:08:00 AM, Blogger Debbie Dunham Left a thought...

Thanks for the update. Thinking of you daily and wishing there was more I could do.

 
At Wednesday, February 10, 2010 5:57:00 PM, Blogger Trwaldo1 Left a thought...

In awe on how you are handling all things. You are a great of example of so much! Praying for you daily!

 
At Thursday, February 11, 2010 10:57:00 PM, Blogger Allie Left a thought...

Thank you for the update.. I haven't commented here in quite sometime, but, your family remains in my thoughts, prayers and heart. Your strength, resolve, and love for one another is inspiring and humbling.
Sending prayers from New Mexico.

 

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