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.)

Telling The Girls

The girls went to Grandma A's house last night for the evening and mommy and daddy went to Benihana's for dinner with some close friends Pat and Steve. This morning Grandma C came out and spent A LOT of time cleaning which was a great help. About 10:30 Grandma A brought the girls home and they played in the play room most of the afternoon.

They played while mommy and daddy got up their final nerve to talk to them. Just before dinner we brought them into the living room and told them about mommy being sick. We started with what they already knew, mommy's leg, and that it was not going to be getting better. Rebekah kept saying "mommy go boo boo hospital." We told them that mommy has als so that they would have a name for it. Sarah kept trying to say that als (daddy has decided that als doesn't deserve capital letters) was cancer. Our family may be a bit odd, but a just-turned-five year old should not have to even know about cancer. Rebekah kept saying "scooter help mommy." At first we couldn't understand her as "scooter" is a new word for her but she explained herself very well saying "scooter in back of van."

We talked about how some people would say that mommy was sick and some people would be sad when they talked with us. Then we told them that as mommy got sicker they would have to help out. They both wanted to know what they could do to help out and we explained that they were getting to be big girls now so more cleaning and taking care of their own things would be in order - they didn't seem to be so keen on that. We also talked about how mommy can't get into their playroom when it is a mess so they will have to keep it more clean. Finally we let them ask any questions they had (they really didn't have any) and explained to them that they could always ask any questions they had or tell us anything they were feeling.

Quite honestly it was far more difficult for mommy and daddy than it was for them. Obviously they aren't old enough to grasp loosing mommy; but at least for a very short while they don't have to.

Happy Birthday Sarah

Yesterday mommy and daddy had a meeting with Rebekah's Psychologist hoping to get some ideas on how to talk to the girls about mommy's ALS. The good news is that we were already on the right track as to what we were thinking; the bad news is that we did not get any magical ideas to make it easy. We are not surprised but we did hope. We did get some good insight on kiddo perspective though. We will probably work on talking with them this weekend.

On a more wonderful front today is Sarah's 5th birthday! Happy birthday Sarah!!!

The Weekend

A lot has happened this weekend. "Cousins" Ann, Joe and JJ came out again to help us out around the house. They have parked their motorhome here and have come multiple times over the last few weeks to help with the cleaning, cooking, etc. JJ does a great job of playing with the girls and they like that a lot. Grandma A. came last night and picked up the girls about dinner time and took them to church this morning and brought them back this afternoon.

Daddy has spent the weekend proctoring examines for two separate Emergency Medical Technician (EMT) state exams. It was the last thing that he couldn't get off his calendar and he enjoys helping to make sure that the pre-hospital medical providers that we are putting out there to assist you are competent. And since we had help here at the house it didn't seem like too much to be away.

Even though she had help here mommy spent much of the weekend on her feet (with a 4 legged cane) trying to do things. Even getting laundry done, a bit of cleaning or organizing is a chore. Today, Sunday, with help she actually made it out to the garden (which we have been neglecting the last few weeks) and bags and bags of vegetables were brought back for dinner. Joe cooked us up some tomato/cucumber salad, fried zuchinni, corn and fresh green beans and it made a wonderful dinner. Ann and Joe even did all the dishes too - thanks guys!

Mommy is paying for the time up and about. Her leg and especially her foot are causing quite a bit of pain right now. While she could sit on the couch with the girls and read bed time stories, she could not get off the couch without great problem. Daddy had to do night time routines with the girls and get them in bed.

This week (Wednesday) we are going to meet with the behavioral psychologist with Rebekah and then hopefully alone to talk about telling the girls what is going on. Mommy Debbie is going to meet us at the hospital to help with Rebekah - Sarah will be in school. Pray for God's strength and wisdom on how to deal with this.

Finally, this week is Sarah's 5th birthday. Hopefully it will be a great one for all!

Friday Updates

Hope you all have had a good week.

This week has been a lot of whirl wind running around trying to figure out our future. We still are not sure when we are going to be telling the girls. We have an appointment at the ALS clinic in a couple of weeks and at that clinic we expect that they will have a lot of support staff that help with all of the end of life as well as medical issue type things. In addition we are meeting with Rebekah's behavioral psychologist next week and will talk with him. Between all of that we are hoping to get a grasp on the best way to share with them what will be happening in the all too near future.

In addition mommy has spent a lot of time looking at different medical trials that could be helpful. Unfortunately there are not any that offer real promise to us in our situation. We have decided on a trial in Georgia that focusses on familial ALS. She has made it through the pre-screening and they will be sending someone for blood and a physical exam. After that we will have to travel to Georgia (Atlanta) up to two times. It may not be something that can help us right now but hopefully, just hopefully it will help come up with something that will help others, including maybe even our girls or nephew.

It has been an emotional week as we start to have lots of conversations that no family ever wants to have. Thank you again very much for your continued thoughts and prayers as we know that is the only way that we are able to get through this.

Candlelighters Shines Again

We spent Labor Day weekend the same way we have for several years now, at Candlelighter's Family Camp just outside Eugene.

The girls had a wonderful time spending most of the weekend with their "buddies" (high school students that came to help out and give the parents a break.) If they were not with their buddies they were constantly asking for them. Rebekah kept saying "buddy come" and signing that she wanted a buddy. They really REALLY had a good time.

Sarah (almost 5) has her first "love," Alex. She has seen him at 3 camps now this summer and she couldn't wait to see him again. They informed us Saturday night that they got married and were going on their honeymoon to Sacramento?!?!?! They were taking toys, swimming suits and a couple of other things and wanted Alex's mommy and daddy to go with them. Alex's mommy was put in the odd position of having to dodge the question from Sarah as to why mommies and daddies couldn't go on your honemoon with you.

Early Monday morning we woke up to Rebekah complaining about their sleeping arrangements. They share an upper twin size bunk bed. Daddy was trying to deal with her and she was saying (to Daddy's ears) "Sarah pee'd on my sleeping bag." Daddy was not at all happy about having to deal with that but after a few times of her saying it mommy piped in and said "She is saying 'Sarah's FEET are on her sleeping bag.'" THAT was a lot easier to deal with! Although it then turned into an argument of "No they are not." "Yes they are." "That's not your sleeping bag." "Yes it is. etc... Loving sisters in action.

Mommy and daddy are on the camp comittee so they worked their tails off; for them camp was a lot of work. It takes a lot of planning and then execution to make a camp work for 300+ people and the comittee that existed this year did a beautiful job, even if we are a bit biased! Sunday night we made 580 donuts and that seemed to go over really well and we are glad.

Mommy spent most of the weekend on a scooter as she is just not able to get around. She was up out of it a few times and during those times she had a few falls; nothing hurt but not what we want. Getting up into the camping trailer is now extremely difficult for her. All of that being said, she had a good time serving the Candlelighter's families and seeing Rebekah and Sarah play until their heart's were content.

It is really difficult to think that something you are doing that you enjoy so much with your family will be the last time you do it. As you go throughout your days with your kiddos please think about that. No matter how trivial or repetitive the task, event, etc. please ask yourself "If this is the very last time I ever get to do this with my kids will we have made the best of it?" Hopefully it will help you enjoy each little thing that much more just like we are trying to do now.

Your continued prayers and support are very much appreciated as we continue along this path.

A late addition. A couple of really awesome professional photographers, Jamie Zanotti (Jaz Photography), and her friend/partner Kim (sorry I don't remember her last name) donated their time and abilities at Family Camp taking pictures of all of the families - THANK YOU JAMIE AND KIM!. They also grabbed a few candids like this one of mommy:

Growing Tall

We went to the endocrine specialists today with Rebekah. After being on the growth hormone since May she has grown approximately 4 cm. That's about $2750/cm if you are keeping track! This is a wonderful delight as she was not growing significantly at all previous to being on the daily injections. She was so proud that and keeps repeating "I Grow Tall!" She wants to grow up to be "tall mommy" which we are intepreting to be "as tall as mommy."

Mommy had her first appointment at the ALS clinic today. They repeated all of the extensive and painful electical and needle testing that she went through last week. Since we know that God is in the miracle business and we have people all over the world praying we held a secret hope here that the specialist would come back with "I don't see any ALS, someone must be mistaken. We didn't expect it and it was not to be had.

Unfortunately what he did tell us is that the ALS has progressed from her leg all the way up to the mid lumbar region in her back (middle of her back.) It's hard to say what that means in terms of prospective life span but not being in her back would be much better. As there is no real treatment for this we are scheduled back into the clinic the end of this month to meet with specialists who can help us treat the symptoms as mommy's body shuts down.

Please keep your eye out for some changes here too. Mommy and daddy talked today about what belongs on "Rebekah's Page" and what does not. We don't have the answers for certain but we may just keep a family perspective here and spin off a mommy perspective blog too. Let us know what you as readers would like?

Please pray for God's continued grace, strength and peace as enter this chapter in our lives.