A first at the hospital.

We are back in the hospital today for Rebekahs quarterly testing. She will be having multiple xrays and then a general anesthetic for an MRI. Then the wonderful wait until next week to confirm that we are still cancer free.

This is the first time mommy has had to do this in her wheelchair adding another level of complexity to a day at the hospital. Trying to control two little ones in public is bad enough bit trying to do it in a wheelchair is even worse. It make it just a bit difficult when they both take off in different directions!

Pray for clear scans and for just making it through the day.

Back To Reality

We are just about finished packing up and having to leave this wonderful place and head back to reality.

As if it was just here for us to give us a beautiful white blanked during our retreat the snow has been melting and revealing the ground and asphalt clear and ready for us to drive away. The passes look wet and should be passable without concern of ice or snow: PassCam

That last thing we will do here before heading back over the mountain is to go to a court hearing to finalize another one of daddy's babies to their new family. With the swipe of a pen the Judge culminates months (and sometimes years) worth of work and emotions, legally sealing a family together forever. It is an honor to be able to help with that.

Please pray for us for a safe drive and for the emotions that come with being back in reality. Tomorrow we have a large number of appointments for mommy and those are always hard. Also please pray for mommy's breathing. Something we have been ignorning (or at least trying to) was a phone call we got just before leaving last week. Mommy's breathing tests on Monday were not as good as we would have liked and the nurse called telling us that they feel there is a need to assist mommy's breathing with a bi-pap machine. This is not exactly something we wanted to be hearing.

Snow is good...

Ok, trying to make up for all the lack of posts the last few weeks in just a matter of days. We woke up to snow this morning - always good to cheer you up - at least us. Unfortunatley mommy couldn't join the girls and daddy outside but they did have some fun.





Yes, the girls are enjoying themselves. In a small bit of coincidence, the hats that the girls are wearing were brought back from Korea and given to them by mommy Debbie and her family - the people whose home we are staying at.

This afternoon we have an appointment with the doctor in Sunriver to have mommy's blood checked. Pray for good results.

Edited to Add: Oh heck, while we are at it we might as well give you a bunch more pictures that we have taken over the last few weeks.

This morning the girls helped daddy put traction tape on the ramps daddy made for mommy's wheelchair to get it into the van:


Last weekend we met some new friends, Carly and Courtney, who are high class barrel racers and 14 year old twins. Mommy and daddy sat with their daddy on the plane coming back from Atlanta a few weeks ago. They live a long way away but were about an hour away from our house competing so they invited us to come and watch. After their races they gave the girls some rides on their top notch horses. THANKS to the Hibbs family!!!

Handicapped Rants

Right now we are sitting in one of our most favorite places on earth, Sunriver, Oregon. This beautiful home that we are in has been an absolute retreat for us from the rest of the world several times since coming here for the first time in the middle of Rebekah's treatments. Mommy Debbie and her family own this home and let us share it's joys and healing powers several times a year, something for which we are absolutely grateful!

Since it has been a while since we posted about the progression of mommy's als let's just jump to the fact that she needs to be in a wheel chair most of the time that she is out of the house now. (See a newly inserted "old" post a couple down from this one - November 6th.) She isn't always, but needs to be. On the way over here to Sunriver we stopped at a restaurant to give a break and use the potty. Daddy ordered a few snacks and mommy headed out to the van with the girls. While daddy was standing in line waiting for the food Sarah came running in the door and said "Daddy, mommy needs your help she fell down in the parking lot..." Sure enough mommy was laying out next to the van on the ground on her knees. Daddy helped her up and we made sure she wasn't bleeding (on blood thinners and all.) It was a bit scary but daddy went back in, got our food, and we were on the way again.

Today we went out "shopping." Window shopping mostly but shopping none-the-less. One of the places we stopped at was a mall in Bend. ADA requires that handicapped van spots have 8 feet to the side and an uninterrupted cross walk from there all the way through the parking lot and up onto the curb. The ones at this mall do not qualify and mommy had to wheel through the lot in her chair where several cars, all in a hurry to get somewhere I guess, wouldn't stop for her, came too close to her, etc. It was frustrating and it was difficult for daddy to refrain from making a big deal about it.

Once in the stores the difficulties continued. Mommy's wheel chair is a mid-wheeled model and quite narrow. Much more narrow and far more maneuverable than a standard wheel chair. But most of the stores had aisles way too narrow for her to be able to get around in. I guess that just don't care if handicapped people shop there. Ross' was one of the worst. At one time mommy as backing out of a side aisle into a main aisle with very little space and some rude lady looked straight at her and walked right behind her taking up the little bit of room that she needed to turn around. The lady clearly saw her and just plain old didn't care.

Then when checking out at Ross' mommy went to the only checkout that had a counter low enough for her to be seen over. Right over this checkout there was a sign that had the handicapped symbol and said "This checkout to remain open at all times to assist our customers with disabilities." Mommy politely waited quite a while being ignored by the 20 something clerk that was 5 feet away checking out other people. Finally the clerk said to her "do you have a return or something." And when mommy said no, she wanted to buy something the clerk said something like "well you should come to a lane where there are cashier's then." Mommy almost left but bought the socks she needed and then spoke to a manager who didn't provide much more courtesy. If you are anywhere around Ross' in Bend, Oregon stop in and let them know what you think about their behavior; it wouldn't bother us in the least.

After stopping by a few others stores we noticed a place called "Advanced Mobility." They build vans, lifts, etc. as well as modify homes and businesses for handicapped access. Daddy went in and talked with the only guy in the store about our problem - getting mommy's wheelchair in and out of the van. It is doable with the ramps that daddy built but just barely given how high the van is. Daddy asked him if there were any other options short of completely rebuilding the van and, unfortunately, he said no. Daddy then talked to him about how to make our ramps less slippery and he said "I have just the thing for that." He took daddy into the back room and came out with a partial pale of traction paint. He said "we used to use this a lot and it will work real well on your type of ramps but we don't use that kind anymore. Take this home and use what you need and anything you don't need bring back whenever you are in town." He even gave us a roller to apply it with. He wouldn't let us pay him a dime for it but we did buy a 32" grab bar to install in one of our bathrooms. Funny thing is that most houses have studs 16" on center but most grab bars out there are 18" or 36". That makes it really hard to actually get them on a stud on each end as is required! Anyway, as bad as Ross' was, Advanced Mobility was AWESOME! Let them know too if you feel like it.

We also spent a little bit of time looking around to find a place for mommy to have some blood tests done on Friday as we will still be here and her doctor is really worried about her blood levels with the thinners she is on. With the recommendations of some friends we think we have just the place.

It is somewhat bitter sweet for us to be here as we are concerned it will be our last time. There are quite a few stairs to get to the main living level and that is obviously difficult for mommy. As it stands she is getting up and staying up there. The girls are in rooms downstairs and daddy is doing all of the duties for them plus carrying all of our stuff up and down. But it is all worth it for us to be able to share this wonderful place yet again. THANK YOU MOMMY DEBBIE AND DADDY BRIAN!!!!!

20 years ago

Twenty years ago this week I, Mommy, was in college and studying in Germany. We were in West Berlin attending a week long institute on the situation with two Germanys. One day we spent the day in East Berlin and had the opportunity to see a little bit of the way of life there. That evening, we saw a very large demonstration. The next day, we woke up and were to attend classes on "everyday life in East Germany". Because the East German government had opened the borders and allowed their residents to leave, they didn't know what to tell us. Instead, they drove us to the wall at the Brandenburg Gate. That day, we were able to stand on the wall. I, with some of my friends, stood on the Berlin wall. They were starting to chisel away at the wall. It was an amazing time in history and incredible to be a part of it.

I can remember going to McDonalds in West Berlin and it was packed. There were so many West Germans buying food for East Germans. It was heartwarming to see the generosity of the people. The lines were long and it took a while to order.

A few days later, we finished our classes and needed to head back to Heidelberg, where we lived. We were on a double decker bus with about 50 students and several staff members. What should have taken about 8 hours (or so) took well over 24 hours. It was stop and go traffic. Some of the worst traffic that I have ever seen. People were literally getting out of their vehicles and walking around visiting with other drivers. Because of regulations, we were not allowed off the bus. The route we had to take from Berlin to Heidelberg took us through East Germany and into West Germany. There were many MANY East Germans doing the same thing. It was not a fun experience.

We were back in East Berlin the following February. Several of us went into West Berlin and were back near the Brandenburg Gate. The river runs through the city near there. From the river and running along the wall are a number of crosses for people who lost their lives trying to flee from East Germany across the wall. The cross nearest the river had a March 1991 date. On the other side, about 10 feet in front of the wall was a cross from February 1991 - just one year earlier. Behind it, the wall had a hole through it that was about as tall as I am and nearly as wide. It would have made an incredible picture if it weren't for the fact that it was pitch black and I couldn't get both the cross & the hole to show. But that is a memory that has stuck with me. People had lost their lives only a year earlier.

I am thankful for the opportunity to witness the "life changing" events of the time. It was an incredible time to be there and see what was happening in the two countries and listen to West Germans talk about the events and listen to East Germans talk about their lives in East Germany. We saw a man who lived in East Germany and considered fleeing (before they opened the border) and he and his family did flee. We saw him after the East German government opened the border. We asked him if he was happy to have fled. Without people like his family, the East German government would not have changed their policy. They had to leave most of their things behind, but they were happy to be together and in a better place. What an incredible story he had to tell us.

The anti-coagulants have aleviated much of the pain. We are working with the docs to adjust the level of medication so that my blood is "just thin enough". We are having to check in with the doc once or twice a week.

Walking and getting around is getting more and more difficult. If I'm not at home, I'm pretty much using a cane, walker, scooter or wheelchair. At home, I'll use the cane or walker or do some walking without cane or walker, but taking a few steps from holding the wall to holding the couch to holding the table, etc... It isn't often that I walk from one end of the house to the other without any form of assistance.

I can't pick the girls up when I'm standing - it just isn't safe. I continue to need to adapt the way I do things. We met with the physical therapist at the new ALS Clinic to look at a brace for my leg. After trying a few different ones, we (the physical therapist and I) are not convinced that any will help. I've adapted how I walk and while it might not be "normal", it is mostly working. I do, however, fall often. Sometimes I am able to catch myself, but not always.

It is past bedtime and I'm running out of steam, so I'm going to close this for now. The news reports about 20 years ago, got me thinking and I know many of you have been looking for an update so I thought I'd write a little something.

Some Relief from Pain, Some Walking Difficulty

This post got lost in the past, being saved as a draft in progress and then never gone back and looked at. Posting it up here so that you are more up to date as to what is going on.

The blood thinners (or more correctly anti-coagulants) seem to be helping with the pain. Last week, Mommy’s pain finally let up and even some of the constant pain that she had before the trip to Atlanta has gone. That is really good news! She was able to stop the Lovenox shots last week and now she is seeing the doc weekly to get the Warfarin level just right. Each person reacts differently to the medication, so they need to check regularly until we find the “right” dose for Mommy.

Wednesday we saw the physical therapist at the new ALS clinic. We wanted to get her input on a brace for Mommy’s leg and also to look at what we need in a motorized wheelchair and will the one that was given to us meet all the needs. Mommy tried on several different types of braces and walked in them. They (the physical therapist and the representative from the foot brace company) wanted to see Mommy in a brace that goes under the foot and behind Mommy’s lower leg to help keep Mommy from “locking” her knee. The two of those she tried seemed like they were going to push her over. Then she tried one that went under the foot and in front of the lower leg. It felt better than the other ones, but not sure how much it would help. In any event, the physical therapist doesn’t feel that any brace will keep Mommy from falling. One might help, but it isn’t going to prevent falls. Mommy had to do a lot of walking, trying out the different braces and letting the therapist see how she walks with the cane and no brace, etc… She fell several times and it was very discouraging.

The therapist thought that it would be much safer for Mommy to be in a wheelchair most of the time and only be on her feet when moving from one seat to another (wheelchair to couch, bed to wheelchair, etc…). Mommy’s biggest concern with that is being able to keep up some strength in her legs. The longer she sits, the more difficult it is to get up and walk and the more balance problems she has when she does walk. Since Mommy can walk, most of the time with help, it makes some sense (at least to us) to continue to do some walking. Mommy doesn’t want to give up and wants to keep fighting to keep what independence and strength she can.

Then we looked at the wheelchair. It is missing some key features that the physical therapist expects that we will need. Insurance companies won’t pay for modifications to wheelchairs that they didn’t purchase. So, in order to get the features we need, we are forced to either purchase a new wheelchair ($25,000 or so) getting some ($5,000 or so) help from insurance or paying for the modifications (which aren’t cheap) to the wheelchair we have completely on our own. We can possibly borrow one from their “sharing” closet, but it will only be short term.

Health Insurance is a big issue for us. The plan we’re on now has some great features that we don’t want to give up (like price and no lifetime maximum for example), but it also has some limitations (like the $5,000 per year maximum for durable medical equipment and not paying for Growth Hormones). Any other plan (and we’re very limited in what plans might be available to us) will have its good and bad, so contemplating a change is difficult. We are approaching the end of the year and know our out of pocket amounts will begin again in January. With that in mind, we keep thinking that if we are going to switch insurance then January would be the time to do it.

Rebekah lost another tooth this week – the first from the top of her mouth. We are not exactly sure when she lost it. Monday, when she came home from school she was wiggling it and it was pretty loose. Somewhere between Tuesday Morning and Wednesday Morning, it came out. She didn’t say anything at school and they think it was still in her mouth when she got on the bus to come home. The bus driver didn’t notice anything on the trip home. Cathleen didn’t notice anything that afternoon. Mommy & Daddy didn’t notice anything that night. Mommy noticed it was gone in the middle of breakfast Wednesday morning. It is kind of hard for the tooth fairy to come when there is no tooth! We haven’t found it anywhere. It is a complete mystery. I know it was ready to come out. I just don’t know where it went.

Monday afternoon, we will go to clinic at the new ALS center. We’ll get to meet all the specialists and see what things they suggest for us and find out a little more about their clinic. It is a “marathon” afternoon with 4 hours of sitting in a room with the specialists coming in to see us. On one hand (the one that says we may get some help with some of the difficulties we are experiencing) we are looking forward to it and on the other hand (the one that gets tired after very long and doesn’t like to hear how life will never be the same as it once was) we are not.

Filling In From Yesterday

Thank you for those of you offering your prayers and support. Yesterday was an adventurous day - and around here that can have some different meaning!

We started the day going to the second als clinic in town to try and compare it to the other one, trying to see which was a better fit for us. Both clinics are very very well known and competent so we thought it prudent to make sure we were making the right choice for mommy. Basically it was a chance for us to interview them and get an idea of what they had to offer.

While talking about mommy's limitations, pains, etc. the doctor that we were interviewing said that she didn't think mommy's current pain was the type of pain most als patients experience and in fact she had some concerns. She immediately sent us over to get an ultra sound.

The ultra sound tech finished her leg (and in fact did her other leg too after his findings on the first.) He asked her not to move and told daddy "when that phones right there on the counter rings it will be the doctor wanting to talk to you" and went off to call the doc. The doctor told us that mommy had some pretty serious blood clots in her leg that were in danger of dislodging and causing an embolism. We needed to go directly to the Emergency Room.

In what can only be counted as a small miracle given the over flowing of the emergency rooms in this area with the swine flue, this major metropolitan emergency room was empty and we were seen immediately. Mommy was given in injection of Lovenox which is a pretty powerful blood thinner and we were sent home with 14 more shots to give mommy over the next 7 days. She was also started on oral coumadin (warfarin) which is another thinner. Apparently she will need to be the coumadin for a long time - possibly for life.

While the ER doc was talking to us about Frances he shared about a friend of his that has recently been diagnosed with a disease similar to what mommy has and the doc was pretty distraught about it. We talked with him quite a bit and shared stories as well as some information. The doc had been doing quite a bit of "grasping for straws" research and we talked about some studies going on in Italy. Interestingly enough mommy was familiar with this study not because of her issues but rather because of Rebekah's as the same study is thinking they might have some information relating to Ewing's Sarcoma as well as these neurological diseases. Over all we got some good information but I hope also shared some peace with the doc.

As we write this about mommy's issues we are reminding that we have diverged quite a bit from this blog being totally about kiddos and if that bothers you we are sorry but it is about our lives that some of you find interesting and we enjoy using to share God's love and strength.

An even quicker update ....

Will post more later but we are in the Emergency Room right now with a blood clot. Prayers would be really helpful.

Quick Update

Just a short little update to let you know where things are.

Yesterday morning mommy was up about 20 minutes when she called to daddy in his office and asked him to go get her wheel chair out of the car. So far we have not had to use the wheelchair in the house but only when we were out and about. She has been using her cane and furniture pretty extensively in the house until now. But the pain of being up on her leg has just become too much. We knew it was coming and had planned on moving things around in the house to make room for a wheelchair this weekend, but instead we spent much of yesterday morning working on that.

Today Grandma C is taking Sarah to school and taking care of Rebekah while mommy and daddy head off to a new als center. It is kind of a second opinion, not of the disease but rather to see if the care center we have started with really is the right one for us.

Then this afternoon we are going to the home of a wonderful friend whom we have not yet met that is donating a wheel chair, scooter and electric hospital bed to us. There are no words in the world the express how meaningful that is.

Tomorrow is a work day with a lot of house organizing and work outside including the building of a handicapped ramp for the front door so that mommy can actually get the wheelchair into the house without daddy having it pick it up the steps.

There are a lot of steps needing to be taken much more quickly than we wanted. Continued prayers and support as we work through that is greatly appreciated.

Tuesday

Sorry, can't come up with a better label for today.

Rebekah had school today and Sarah was at home. While at home Sarah was complaining of her ear really hurting so mommy and Cathleen took Sarah to the doctor. Doc doesn't see any signs of infection but gave her some numbing drops in case it continues to hurt.

Daddy had to take care of getting Rebekah ready for school this morning as mommy was in too much pain. After taking some pretty serious pain killers mommy was able to get up and do a few things early morning but the pain was back this afternoon and mommy is back in bed. Daddy will take care of dinner and bed time tonight.

The events of the day - CONCRETE!!!!

Here is what it looked like when we were tearing things out:


And now:


The old walk was too narrow, broken and uneven to get a wheel chair up it. Now we could land a small plane on it it seems! This picture is of Mike, the owner of MLM Construction who donated his and his crew's time and materials to make it possible. If you ever need concrete work done in the Portland area please get a hold of Mike. He is a major answer to prayer in so many ways!

And then of course there is the REQUIRED action of handprints in the new concrete. Daddy took the girls out and they picked out a corner right out in the middle of everywhere to put their hands and write their names in the concrete for all the world to see forever:


It has been a rough day but emotionally it is a huge relief to have the concrete done. Thank you all for continually lifting us up!

Atlanta Update and More

We are home from Atlanta. We got home Saturday night and were planning on having the girls spend Saturday night also with Grandma so we could "recoup." But we couldn't not see them so we met them for dinner at their favorite, Red Robin. After seeing us Rebekah HAD to come home with us so she did. Sarah was just fine to stay another night with Grandma so she did. We picked her up after church on Sunday and went to her friend (and husband from this summer's camp)'s Make-A-Wish kickoff party. Go enjoy Mickey Alex! And tell him we said "hi!!!!"

Before talking about the trip let's talk about some wonderful things that have happened. Today Mike, the concrete contractor showed up and formed the front sidewalk out and ordered the concrete for tomorrow. That should be just in time for us to build the ramp this weekend. We are hoping to be able to pick up the promised wheel chair later this week too. This was really a needed boost after a very emotional and tiring weekend.

As those of you who have read the last couple of posts know, we went to Atlanta the end of last week to allow mommy to participate in a medical trial for familial als. They have just recently obtained FDA approval to start testing of a new drug on people. In all of the country they have only been able to come up with 10 people to join the study who have familial als - it is that rare. Basically everyone that we met with (with one exception) was a PhD and not an MD. This is definitely research and not treatment for mommy. Mommy is on the medication but we don't know whether it is the real test drug or a placebo. Don't know if we will ever know.

We got pretty physically tired out from the many hours of flying from Portland to Atlanta, hotel rooms, taxi's etc. The sitting hurt mommy's leg pretty bad and she is in pain like she never has been before. Two days later the pain has not gone away.

The other thing that was difficult from this weekend is facing more detailed information about the disease. While regular als has some wonderful (at least from our perspective now) statistics about life expectancy, familial als is not quite so good. The docs that we are working with, who have seen a lot more familial als than most, pretty much said that life expectancy from first symptoms is 10-14 months with just about no one surviving past the 14 months. We are doing everything we can - which is mainly prayer and hope - to break those odds...

Yesterday we went to Home Depot to buy some handicapped accessibility supplies. Daddy is going to be putting up grab bars by the toilets for mommy and we also bought a shower chair as standing in the shower is getting pretty difficult. Daddy is also going to be installing a handheld shower head to help with showering. While we were at the hotel we were in a handicapped room and it had the entire bathroom tiled and no break going into the shower. There was a shower curtain to help control the water but any excess spray was safe because everything was tiled and sloped back to the shower drain. The thought of having to tear apart our recently remodeled (after the fire) bathroom is daunting but we may just have to do that. Anyone know any good tilers?

And finally for this post, something direct from daddy. Stupid things make me cry. Tonight at dinner mommy told me that I am going to have to take the girls to the Candlelighter's Mt. Hood Snowmobilers party this winter as she just can't walk in the snow and the wheel chair can't do it either. It was difficult thinking about doing something with the girls alone, without mommy, but I was doing okay with it. And then immediately after that we started watching "Little People Big World" (a show about some little people that live just a few miles from us.) During that show they actually went skiing to the same mountain where the snowmobiling party will be - coincidence? Anyway, on the show they were skiing where I used to be a competitive skier and we were talking to the girls about skiing. They both asked me to teach them to ski. And with that it hit me that I might be able to but it would have to be without mommy. She won't be able to ever share that with us and no matter how much we might in the future have fun doing something (like skiing) as father/daughters, we won't be doing it as "a family" as mommy won't be there. We maybe able to be father/daughters, but I don't know how we will ever be a family anymore without mommy. Sarah asked me why I was crying and I could only ignore her question hoping I didn't really have to answer it.

Pray for the emotions, all of ours.

In Atlanta

Thank you Darlene for the prayers - you should have started earlier! It was quite an adventure getting here. We woke up late. Not sure if the alarm never went off or if Mommy shut it off in her sleep. Thankfully, we were only about 10 minutes later leaving home than we had planned. We got onto the flight, backed away from the terminal and stopped. A warning light had come on in the cockpit and they needed to have it checked out. We went back to the gate and the maintenance people looked at it and determined that we would not be able to fly as they wouldn't be able to maintain cabin pressure. So off the plane we went.

Then, we had to wait as they tried to rebook everyone on other flights. With already full flights scheduled and an entire plane full of passengers, it took quite some time. Finally an hour and a half later, they had booked us on another airline to Denver and then back to their airline for the trip from Denver to Atlanta. But we didn't have bording passes or seat assignments. Daddy had to go back out to the ticket counter to try to deal with that while Mommy waited at the gate. Even still, we had to wait for seat assignments because they wanted to move us forward, but couldn't until the passenger in the seat where they wanted to put us had checked in. We went and got some lunch and waited for the time to board. They did finally get us moved forward.

We landed in Atlanta a little before midnight Atlanta time. It should have been around 6:30pm if we had made our original flights. We were transported to the hotel and eventually made it to bed. I tried to remind myself that it wasn't that late West Coast time, so going to bed at 10pm Pacific wasn't bad, but getting up at 6am Eastern was a bit difficult.

We had breakfast at the hotel and then took a taxi to the hospital. We have met with the doc here and he has done some testing. Doc here agrees with the diagnosis - which really isn't any surprise. We have a full day of tests and procedues and are really just getting started. Then we need to be back tomorrow morning for a little bit more before heading home. Both of us are tired and fighting colds, but we're hanging in.

Off to Atlanta

We've been getting ready for our first trip to Atlanta. Mommy and Daddy will fly out tomorrow morning. We'll be travelling all day with one connection. The sitting with legs down and little room to shift positions will make it rough on Mommy. We've borrowed (indefinitely) a manual wheelchair. We'll take it with us so Mommy won't have to walk too much as well as the cane for when she is walking. It will make for interesting travels.

The girls will be with Grandma M, so they will be well taken care of.

Our friend Genia was here this past week to help out. We harvested quite a bit from the garden including 5 huge pumpkins. And we left two more pumpkins that weren't quite ripe in the garden. Mommy hopes to be able to work with the girls on making some pumpkin pie or pumpkin bread from one of the pumpkins and maybe even roasting some pumpkin seeds. We've been too busy the last few days, so it hasn't happened yet. It was great to see Genia and her help was tremendous. Thanks Genia!

Highs and Lows

It has been an interesting week with some big emotional and physical hits. But then those have been countered with some wonderful blessings bestowed upon us from above.

On Tuesday mommy and daddy went to the als clinic. We met lots of of new therapists and doc came and did an exam to find the current state of mommy's disease. The result of the day was that doc has prescribed a controlled pain medicine for her. It is a highly addictive medicine although he basically said "at this point we don't worry about that." Doc also wants her in leg braces when she is up and walking and in an electric wheel chair most of the time to conserve energy. One of the hardest emotional hits was his closing comment that she needs to spend the energy she has left only doing the things that she likes to do.

As we are dealing with the emotional issues we also have to deal with the financial. The leg braces run close to $1,000. The cost of an electric wheel chair is in the 25-30 thousand dollar range. Our insurance only covers $5,000 a year on these types of devices. Obviously we don't have any funds to cover the difference let alone a difference so great. Here is where God comes in. After sharing with daddy's sister the situation she shared with her pastor. The email exchange from her looked something like this:

"You two know that God works in amazing ways! I was talking to my pastor about your appointment on the 29th & how you will need a motorized wheelchair. He listened quietly & then asked if you have ordered one. I said no not yet. He smiled & began to tell me that his close friend just passed & that his wife still has all of his medical equipment- a fancy motorized wheelchair with a fancy lift seat as well as comm. Devices & other medical equipment. He is sure that the owner will help you with these needs and is going to speak to her!
Praise God!"

And a later email:

"I just heard from my pastor- all is a go- "she" [we want so much to give you her name but she has not authorized that and until we have permission we want to respect her privacy] has the wheelchair another possible skooter, the hospital type bed & some type of augment comm device! We are to let them know when you'd like them! Praise God!
He does provide for ALL of our needs!"

If the significance of this has not hit you hard as to how GREAT God is, please go back and read the paragraph above about how much these things cost and how insurance was basically not going to cover it! Only a true and caring God can answer prayers in this way.

This presented another problem as there is no access to our house for a wheelchair. There are steps leading up to the front door (which can and will be dealt with by building a ramp) but the existing sidewalk was too narrow, uneven and craked. Here is where yet again God shines. Daddy called Mike, a friend who does concrete work to ask for some advice on what to do and more importantly how to do it. After giving a little bit of direction on the phone daddy fearfully asked "how much will this cost?" The answer came "Do you trust me? Then I will have my guys come out next week some time and prep in the morning and have the concrete ordered for the afternoon. It will be taken care of." Oh my what another wonderful blessing. If you ever need a great concrete and general contractor in the Portland, Oregon area please let us know - We'll tell you all about this wonderful man!

Today daddy and friend Steve are going to spend the day tearing out what is there and leveling the ground to make it ready for the new sidewalk next week. We are going to be doing that with a new to us tractor that Grandpa made possible just this week and with the use of a Bobcat and other equipment donated by another good friend - thank you Grandpa and Doug! To top that off just yesterday another contract friend that helped us out splitting wood last weekend stopped by and just happened to mention that they have a jackhammer they bought for another job and have only used once and is sitting in their shop just up the road available for use - thank you to the Herbs! And to show how God works way ahead of time on things, another friend called us out of the blue this last summer and asked if we needed gravel. He delivered more gravel than we need and we have had extra sitting in a pile since then. That "extra" is going to be right about the amount we need to lay down under the new sidewalk - thank you Johnny! Yes, God does work through other people.

Again, if you have any question as to the ability of God to meet the needs of his people, please go back and read this post again. Our God IS An Awesome God!

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.)