It IS Done

Daddy and Grandpa got up at 0'dark:30 and headed north to Lacey, Washington this morning, arriving there right at 8:00. Daddy was greated by Wendy, the van's owner with a warm friendly hug and her 9 y/o daughter Amanda who was waiting for a ride to school. Amanda was happy to show daddy the van and before she left daddy knelt down in front of her and asked her if she was sure it was okay that we took her daddy's van. She was most gracious and very sure it was okay. In fact daddy learned later that before we got there Amanda told Wendy "mommy, no matter how much money they have you tell them that is enough." Wendy then showed us all about the van.

Daddy looked it over briefly, took a quick test drive and we did the paper work. Wendy was a spectacular person to work this out with, having all of the papers, bills of sale etc. all lined up to make sure both of us were protected. Daddy then left to start the 2 1/2 hour drive home. That drive was very full of emotions. Sad to be in this position. Sad that Wendy and Amanda are in this position. But also very happy at being able to give this to mommy as a gift to her independence for as long as she can. I am sure there were also emotions on Wendy's part at seeing her van go.

Just about 6 hours exactly from when daddy left he pulled into the driveway and was met by mommy and Sarah who couldn't wait to see the van. Daddy took the front passenger seat out so that mommy can get in there with her wheelchair and she took over. She is able to operate the electronic lock that secures her wheelchair, transfer over to the driver's seat and operate all the controls. Having the loaner van taught us a lot and was really awesome but having her OWN van is even better.

The van did need a new battery which we happened to have already to go as an extra in a multiple battery set up in mommy's big van. We were going to take out the multiple battery set up in order to sell it so everything worked perfectly.

Already we are making plans with what we can do with it and that is wonderful. Please pray for Wendy and Amanda who are dealing with the loss of their daddy. Please pray for us that the van continues to work as perfectly as it seems and we don't have any problems adding it to insurance or anything.

And many of you have asked how you can help. Well, this van cost quite a bit more than we had and now we are going to have to figure out how to get all of the medical bills paid. If you are so inclined and able you can always help us out with those bills by contributing to Rebekah's trust. Info here: How Can I Help?

It's Almost Done

A lot of pulling things together and a trip to the bank to get the check and daddy is ready to take an early morning trip tomorrow to go pick this up:



Daddy has spent several days talking and emailing with a wonderful family who, unfortunately, has this van available. Their story is eerily similar to ours. Their daddy, a firefighter (like our daddy,) recently passed away of the same disease that mommy has, leaving behind their mommy and a 9 year old little girl. Please be praying for them in their loss as well as us.

The van is a 2003 that has been converted for wheelchair use and has an automatic locking base unit that should make it so mommy can lock the wheelchair in by herself and then be able to move over to the driver's seat. With some modifications it can even be set up so mommy could drive from the wheelchair.

We are leaving at 5:30am tomorrow morning to fit into their schedule and pending a good test drive and check out we should be coming home very blessed. Pray that all goes well on the van and for safety for all involved.

The Search For A Van

Having the "loaner" van last week was a big eye opener that there are still some possibilities for mommy to be able to still have a little bit of independence. We never really had a clue how much that meant until it came time to return the van on Saturday morning.

Daddy felt like he was ripping mommy's independence away from her. It was felt throughout the whole family too. On Sunday morning daddy wrote about this on his facebook:
Got up early this morning. Sitting in front of the fireplace, computer on my lap looking for an accessible van. The girls came out and sat down next to me on the couch looking with me. They kept saying "mommy would like that one." When I tried to talk to them about going to church this morning Sarah says "We don't have a van so mommy can't go with us. It's not fair if we go without her."

Sunday afternoon when daddy returned with the loaner van again it was like a weight was lifted off the family again. The only issue is that this can't/won't continue forever so we have begun in earnest the search for a new van. We talked with Grandparents and we do have a limited amount of money that we can put toward a van, though probably not enough to get us something newer.

Please pray that the right van with the right circumstances will find its way to a good home. And for emotional strength as always!

Please - Do It Anyway

Driving alone early this beautiful sunny crisp morning I heard the Martina McBride song "Anyway" or "Do It Anyway." It brought me to tears as I listened to the words and absorbed the concept. Please think about it with regard to your life and while you still can - Do It Anyway.

"You can spend your whole life building
Something from nothin'
One storm can come and blow it all away
Build it anyway

You can chase a dream
That seems so out of reach
And you know it might not ever come your way
Dream it anyway

God is great
But sometimes life ain't good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
I do it anyway

This world's gone crazy
It's hard to believe
That tomorrow will be better than today
Believe it anyway

You can love someone with all your heart
For all the right reasons
In a moment they can choose to walk away
Love 'em anyway

God is great
But sometimes life ain't good
And when I pray
It doesn't always turn out like I think it should
But I do it anyway
Yea - I do it anyway

You can pour your soul out singing
A song you believe in
That tomorrow they'll forget you ever sang
Sing it anyway
Yea, sing it anyway
Yeah, yeah!

I sing
I dream
I love anyway"

Watch the CMT video of this song.

Daddy Has To Become Mommy

On a daily basis we are coming across things that mommy has always done and that daddy has to now. This evening was no different, except that it was on a much larger scale.

Daddy, who is not feeling well himself and cannot tolerate smells at all, was sitting on the couch with Rebekah when all of a sudden Rebekah began to throw up. And not just a little spit up but quarts and quarts over and over again. Like usual, daddy instantly shouted out "Mommy, come quick!" and then it hit him - she can't. And sometime all too soon she won't be able to come at all.

Daddy told Rebekah to sit still and ran and got towels, dozens of them it seemed. Mommy did make it over and cleaned and cleaned with the supplies that daddy was able to get for her. And then, at mommy's direction, daddy headed off to the bathtub to start drawing a bath. During the soaking of Rebekah it hit him that he cannot remember ever giving her a bath before as that has always been a mommy/girls kind of thing and lately mommy has been teaching them to shower.

Of course all the mommies out there are laughing out loud at daddy, but from his point of view its very scary.

a BIG answer to prayer...

...and we do mean BIG!


Saturday was a frustrating day having come to the conclusion (forced) that mommy is going to have to be in the wheelchair much closer to full time. Thank you so much for all of your prayer support - it has been felt.

Yesterday was a big emotional lift up as we followed through on a lead from the ham radio community. Steve and Sharon had talked to Grandma M about the possiblity of loaning us a van to use. They use it on Sundays to take their mom to church but generally not during the week and they wanted to help us out.

So at least temporarily we have this van available to us during the week:




Mommy got her wheelchair in and drove it home last night, making several stops and getting in and out. It is going to give her a new found independence. It has room in the back for the girls' carseats and mommy's wheelchair goes into the passenger spot as you can see from the photos above. When mommy is driving (which for now she still can) she can scoot from her wheelchair over to the driver's seat and when daddy is driving mommy can stay in her wheelchair.

There are a few peculiarities with it that never mattered if the driver was not the one in the wheelchair but will make a difference for us so we are hoping to take the van to the accessibility place today to see if those can be worked out. Please pray this morning that they are "easy fixes" or at least CHEAP fixes.

THANK YOU STEVE AND SHARON! 73.

"Mommy Boom"

"Mommy Boom!" That's what Rebekah came running into daddy's office saying this morning. Mommy fell in the hallway and couldn't get up - and she was using the walker. And she hit her head on the wall and has a bad headache. Mommy asked daddy to go get the wheel chair out of the van for her use in the house. As has been said, the docs and the therapists have been begging mommy to use the wheel chair even in the house to avoid just this situation but mommy is a tad bit stubborn.

Even though it is doable in some areas, she still can't get everywhere she needs to in the house. Furniture still needs to be moved to get into her bedroom. The bathroom still isn't very accessible and worst of all she can't get her wheelchair into the kitchen at all. She also can't get into the laundry room but that one probably won't bother her too much.

Mobility problems are obviously continuing. Earlier this week daddy posted the following (or something similar to it) on his facebook:

Earlier today I was so up. Now I am so down. Mommy is "stuck" at the hospital w the girls. Stuck because she can't get the wheelchair into the van and can barely get in herself. She needs help and the parking crews that normally help her are gone and she has to wait for transport folks to come to her aid. In the past... they wouldn't help because she is "outside" the hospital and not in "their" wheelchair. And I'm an hour away. We are going to have to do something different about transportation as she just can't do it alone in our van anymore.

So pray for us. Pray for mommy's independence. Pray for solutions for the bathroom, the kitchen and a van. Pray for $ to make these things possible. Pray for the emotional difficulties of dealing with this. Pray for the physical difficulties of dealing with this. Pray for frustrations. Just pray.

Rebekah - NED

We saw the oncologist today to follow up on last weeks scans. All of the scans (MRI, Panorex, and Chest Xray) look stable (no significant changes from previous scans). So that means No Evidence of Disease (NED) which is a good thing. Doc didn't have the results from the heart tests so he will work on getting those for us.

Rebekah has, for the last few days, had a red puffy eye. Starting last Friday she was sneezing, but that has changed into green goop in her nose with her nose running. The oncologist didn't like what he was seeing there.

I talked to the oncologist about the eye and nose. And explained to him that we were scheduled to have Rebekah's hearing tested tomorrow and see the ENT. He said he would cancel the hearing test. He did suggest that we see the ENT and get his advice on the eye and nose issues. The oncologist wrote a prescription for an antibiotic, but said we should talk to the ENT first and make sure he thought it was appropriate. So I'll need to cancel the hearing test, but keep the ENT appointment. Something to do first thing in the morning.

Because of the cold, we took some of our own toys for Rebekah to play with. Rebekah picked them out last night. She did a really good job of sitting in a chair and playing with her things and listening to Mommy when Mommy said she couldn't play with some of the toys there and she couldn't go into the playroom, etc... Mommy was very proud of her.

Life is interesting when Mommy is taking Rebekah to doctor's appointments. If we are at a hospital, Mommy can get help from the Valet staff or Security or Transportation to get the wheelchair out of the van. Both Rebekah and Sarah are doing a better job of staying with Mommy and not running off ahead. So at least at this point Mommy can still take Rebekah to her appointments. One step at a time...

Tonight as the girls were getting ready for bed, Mommy asked Sarah to help her out. Sarah took an empty laundry basket into the laundry room and got the clothes out of the dryer and then took the clothes out of the washer and put them into the dryer and then brought Mommy the basket full of clean/dry clothes. She really likes to help Mommy. Mommy appreciates the help both girls give. They both like to take Mommy's dishes to the sink or get something for Mommy. They are definitely big helpers.

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.

Waiting

Rebekah is asleep in the MRI. What a big girl, no numbing gel, no relaxing drugs, just "tubes (iv) here daddy" as she points to her arm. She sat totally still and didn't flinch or even cry when the nurse put in the iv. Then Rebekah pushed in the syringe of propyphol and her eyes rolled into he head and daddy laid he on the guerney. As she was going under she said "bye bye daddy."

I'd say waiting is hard but actually ot much easier than dealing with a very fussy crying yelling girl when she comes out of the anesthesia.

And mommy Debbie is her helping to take care of Sarah. Thank you mommy Debbie!

Talk About Busy

It's been a busy medical day. Mommy took Rebekah to the hospital for day one of three. Today they did Panorex, Chest X-ray, Heart ECG and Heart EKG. Aunt Molly met them there and helped, thank you Molly! The nice thing about Emanuel is that they have valet parking that will help mommy get the wheelchair out of the van. After they were done mommy had a real hard time getting out of the wheelchair and into the van, but she made it.

While they were doing that daddy went to the chiropractor, something he has only done once before many years ago. Over the weekend daddy was moving the furniture in mommy's office so that she can still get into there in the wheelchair and have a place to make some phone calls and do some of the medical paperwork that she is still doing. Somewhere in doing that he hurt himself pretty bad and could not stand up straight. When trying to stand up his shoulders were about 2-3" out of line from his hips; it was pretty scary. About 30 minutes with the doc and daddy walked out standing up straight and sore but not in pain. If you ever need a good chiropractor in the Portland area give Dr. Thomas Freedland a call, he is a miracle worker!!!

I big thanks to Blair who came over Sunday night to help move the desk one more time as there was no way either mommy or daddy could do it. Poor Blair will probably get called on again too as we still have to move all the bedroom furniture some the wheelchair can get it there. While on the topic of Blair please pray for him and his family and for God's guidance in some major decisions they have to make.

Tomorrow is the big medical day (2 of 3.) Rebekah gets an anesthesia about 7:30am and then an MRI. Mommy Debbie is going to meet us at the hospital to help with Sarah who gets to go with us. Rebekah is SO looking forward to being in her own wheelchair after her MRI tomorrow so she can be like mommy. Can you believe we have lost count of Rebekah's anesthesias? Somewhere about 80 but we are not sure. When the anesthesiologist called this afternoon he started out the call with "Is there anything you need to tell me?" And finished it with "I won't both reading you all this stuff I normally do because I think you know it as well as I do. Just follow the rules about not eating or drinking okay?" It was kind of funny.

Day after is more hospital visits (3 of 3 in a row) where Rebekah is seeing the behavioral psych doc. This coming up Friday is Rebekah's IEP meeting. Next Monday is mommy's ALS clinic. Next Wednesday is oncology follow up to this week's testing and next Thursday is ENT/Audiology testing for Rebekah. Wow, talk about being busy!