Thankfulness

There are many things that I am thankful for...

I am thankful that Rebekah's scans showed no evidence of disease and are stable. Those are always good words to hear. Her endocrine labs look good and we won't be making any changes to the medications right now. She grew 2 cm in the last three months.

I am thankful for my voice. That I am able to sing praise to my God, to read stories to my girls and so many other things...

I am thankful for girls who want to help Mommy and aren't afraid of the equipment that comes to our house (like the wheelchair, scooter, walker, cane, etc...) Rebekah wants me to go to the hospital to get all better. Oh if only it were that simple. I am thankful for girls who want to give to others. We put together two shoe boxes for Operation Christmas Child for girls about my girls ages who won't get much in the way of Christmas presents.

I am thankful for a husband who loves me no matter what. One who takes me places and gets the scooter or wheelchair in and out of the van and hauls the bags in and out of the house and does so many of the things that I just can't do anymore.

I am thankful for friends and family. They call to see how we're doing, bring food, offer to come and help with whatever needs done, offer specific things or to help with specific tasks.

I am thankful for the peace that comes in knowing that when my time on earth is done, I will be in heaven with my God and my Saviour and there is no better place. I also know that my God is a God of comfort and He will be with the family I leave behind.

I am thankful for friends around the world who pray for me and my family. Friends who we've met and friends we have never met.

I am thankful for medicines that can help us feel better and fix some of our problems. I am thankful for researchers who are looking for cures for cancer and als. Both girls have coughs, so they are on cough medicines. I am on many medications.

It has been a rough week, so please continue to lift us up in prayers.

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.