Got a call last night from Joanne's physical therapist (who I will refer to as D. to protect her anonymity). She was calling from the hospital to say that her sister had just had a major stroke and was in the operating room getting a craniectomy to relieve the pressure in her skull. D. can't be nearly as old as I am so I am guessing her sister is younger than 40--maybe by a lot. And she is going through exactly what Joanne went through a year ago. We don't have a lot of details but the right side craniectomy took four hours and she is now in ICU. I am sure they are watching her ICP (inter-cranial pressure) numbers just the way we were with Joanne on this day last year.

I will post updates, but please pray for this family. D. has done amazing things with Joanne and she is dear to us. We hate to see her, her family and her sister suffer through such a tragedy.

Toben

A year ago today, January 16, we almost lost Joanne. Her inter-cranial pressure was through the roof and her brain wash literally "smooshing" itself. I have been up most of the night flashing back to that day, what we talked about as a family, about our prayers and the hours we sat at Joanne's bedside willing her ICP numbers to come down. I know I have never been so afraid in all my life. And for some reason that fear visited me again last night. I was gripped by it.

I have not spent a lot of time looking backwards. Nor do I spend a lot of time looking very far forwards. I do pretty well at staying in the moment, focusing on "today" and what we need to do to make it through. That is enough. But for whatever reason this day has taken me back a year.

I want to think ahead. I remember one of the things that Joanne and I used to do a lot was dream for the future. We would talk about what we wanted to do and where we wanted to go. We talked about the girl's future and what we hoped for them. And it was always good, encouraging and exciting to have these talks. We don't really have them any more. Our hope is that we make it successfully through another day.

However on the drive back from Winter Park yesterday we did a little dreaming. Joanne wants a vacation.  We talked about where we might go and what we might do and how we would pull it off. At this point Joanne can't spend too much time in the car before she really starts to feel a lot of pain and traveling on a plane would be a nightmare--I just have visions of TSA patting down Joanne! Besides that, sitting on a plane wouldn't be much better than sitting in the car. And Joanne hates to fly anyhow.

But that's not the point. The point is that it was really fun to look forward a little ways, to dream a little. I think we need to do more of that.

As far as looking back goes, it is all divided into two groups for me: hospital and home. Joanne was in the hospital from January 11 to May 15. So those are the "hospital days." Then there is after-hospital. The hospital days were the hardest for us. I remember snapshots from each of the three facilities that Joanne was in. I will not go into that much, but I have distinct mental picture's from each one; an image or two that are burned into me.

Being home is always better. There have still been plenty of challenges, lots of hurdles and lots of hard work on Joanne's part. But at least we are under our own roof and life has become a new kind of normal.

Last thing: We couldn't have survived this last year with our friends and family. There is not enough space to express the gratitude that I have. I will single out Gran and Papa for a minute here: their presence, support and hard work has saved the day. Without them we would be up a creek without a paddle. And there are my folks and the love that they have poured out on us. And there are special friends (I won't name names but you know who you are) who have been with us from that first day in the hospital and continue to walk with us. And then there are the countless other friends who have been the source of so much prayer and encouragement. The cards, calls, text messages, emails, and facebook posts have been overwhelming.

So here is hoping that the daylight will dissipate the fear and that I will focus on the fact that Joanne is still here (!) and not the fact that she almost wasn't.

Prayer requests:

1. Joanne has a cold. We have worked very hard to keep her germ free since she has been home and we have done a pretty good job of it. But somehow she picked up a bug. She has literally gone through two boxes of tissues in the last 24 hours. Please pray that she will start to feel better.

2. We are waiting to hear from insurance on what OT and PT will be available for us in the coming weeks. We are at the end of our time with the current team (who we love) and are waiting to hear from Kaiser as to whether or not we can continue on. Please pray that they would show favor.

3. Strength, strength, strength!

Toben

Happy New Year. 2012 is really here despite my fear of turning the page on the calendar only to find out that it was still 2011. We had a good Christmas, different but good none the less. Nana and the girls decorated the house for me which is one of my all time favorite Christmas things to do. I'm already brainstorming ideas for next year.

One of the biggest changes was that we did not give any gifts this year. I usually make all the gifts we give but my workshop in the basement has been out of reach for me and it's hard to sew with only one working hand. Instead we gave family members imaginary presents. For example, Audrey received an imaginary puppy. For Emma, we imaginary knocked out the wall between her room and the guest room to expand her space into a suite of rooms. She's very excited and doesn't seem to understand the imaginary part. We sent Joanne's folks to Wale's for a month this summer to stay in a B&B and hike along the coast. I gave Toben and AR15 and tactical training. Toben gave me 100% healing. My sister received welding lessons and a metal and woodworking shop. Wade received snowmobiles for their mountain house. It seemed like a good idea to give these imaginary gifts but in actuality it felt sort of lame.

We spent the whole day at Gran and Papa's the day after Christmas and had our traditin Christmas meal. Christmas Eve was spent with Nana and Papa and Beth in the Springs.  For New Years I tried desperately to stay up until midnight but could not do it. I had some very specific and not so nice things to say to 2011 in closing but mostly I am just glad that 2012 is here.

AS we enter the new year, we are looking for a new routine yet again. I am still doing PT with Dililah every week. She comes to the house and we work on leg strength, balance, stretching and such. Erika is our PT. She comes to work on my left arm. Tracy was my ST but I have been discharged from speech therapy for now. I still try to read out loud every day and talk on the phone more. Fridays are still my best day with Brooke, my massage therapist. With all the therapy that I have done, massage has been the most helpful. I love Brooke dearly.

The girls are back in school and doing fairly well. Though I have to say I felt bad sending them back to school with only imaginary gifts to talk about. " I got an imaginary dog. How lame is that!" Maybe next Christmas...

We are starting family counseling later this month just to talk about how the four of us could use some processing time to figure out how to come to peace with this last year. Small world...the man we will see was my clinical psychologist from rehab at Spalding se we already know him.

No more cast!!! I got the red cast cut off on Tuesday and even though my chart said to recast it, my doctor listened to my begging and put me in a walking boot so I am on my feel again. The best thing is that I am able to take a real shower again. I have a special boot that I have to wear at night that is very uncomfortable and has kept me from sleeping well.

Toben is still at the top of my thankful list--my hero, champion and best friend. He takes care of me with gentleness, patience and understanding. My parents are still a big part of "team Joanne" and are here every day to help with exercises, grocery shopping, meal planning and such. Papa's retirement has turned into another full time job...me! He and I practice one handed typing almost every day. We are making some progress but it is very difficult. I look forward to being able to tye my own posts in the future but for now Toben is my scribe.

I feel like I am in fairly good spirits lately. The meds I am on seem to be working as they are supposed to. All in all I am weary...we are weary. I hope 2012 brings our family a much needed vacation and some rest.  Hint, hint to anyone who owns a home in Hawaii :)

That's all I can think of off the top of my head. Toben is taking me out to lunch to get me out of the house today. I took a great shower this morning so I have on a cute outfit, make up and earrings so we need to go live it up!

Prayer Request:

Continued endurance and perseverance. With the one year strokeaversary coming up it is amazing to look back and see how far we've come and how much we've been through.

Joanne

Wow is is slippery out! I drove the girls to School this morning and on the way home did a 180 into on-coming traffic in Joanne's Expedition. I missed hitting a utility van by about a foot. So scary! I was in the "school zone" so we were all going about 20 mph which definitely saved me. If cars had been coming full speed from the other direction I would have gotten plastered. Thank you Jesus for getting me home safe. Haven't seen roads this bad in Denver in years.

Ryan let me off the hook today so I wouldn't have to drive to the Springs. On top of that Gran has taken ill and isn't here to help Joanne out with the few things that only Gran and I can do for Joanne. God has truly blessed me with an understanding employer. I need to write more about this at some point. Ryan, Grounded Radio and Family Talk has been with me ever step of the way on this journey. Not sure what I would do without them!

The snow continues to fall and it looks like the roads are only going to get worse. Should be an interesting trip back to school this afternoon.

Erika the OT is here today but Speech had to cancel. So Papa and Joanne worked out in the garage/gym for about and hour and then came in to work on Joanne's one handed typing. Now Joanne is getting her shoulder worked on. Erika says that you have to start at the top and work your way down. First the shoulder, then the elbow then the wrist and fingers. Besides that, Joanne is wearing her wrist DynaSplint for a number of hours a day. All of this is supposed to work together to decrease tone and make her arm flexible/usable again. Would love prayer for some progress int his area.

I am thinking about how weird and difficult things get normalized over time. We have slept int he living roon for almost three weeks now--Joanne on the couch and me on the love seat. Emma has joined us and is now sleeping in the big chair. If you take th eback cushion off and put the giant ottoman at the end of it it fits Emma just right. So the three of us spend the night in here and it is feeling pretty normal. The first few nights felt anything but.

Joanne is sleeping well. What an answer to prayer. The first nights after surgery she didn't sleep much at all and was miserable. But now she is at least getting a decent night's sleep in. That makes all the difference.

Oh, Joanne got her stitches out a couple of days ago. They removed that cast and everything looked good. Papa took a picture of the scar and it is WAY bigger than I anticipated. It's a honker! But they said it looks fine and taped it up before re-casting it. This time her cast is red and someone sent "cast-toos" that are like stick on tattoos for a cast. They are of Christmas lights so her cast looks very festive now for the season.

Prayer Requests:

1. Praise that Joanne is getting some sleep! Everything goes better with good night sleep. We are still awaiting the day when Joanne gets her walking cast and we can get upstairs to our room, but for now we are making it work.

2. Praise for the friends and family that have so faithfully stood with us through this process. It has taken a team to make life work and we are lucky to have an amazing team around us. I won't name names but you know who you are.

3. The girls are heavy on my heart these days. They, like the rest of us, are trying to make the best of it, but I know their little hearts are hurting. Please pray that they would be able to express their concerns and let those of us who love them help them through a very emotionally difficult time.

Toben

To ad some adventure back into our adventure-less life Toben and I have created a secret gang. We call ourselves the Shower Bandits-a crack b/e team. Well no b/e really. So far we have been invited because our shower is upstairs and we can't get there my option for a shower is Gran and Papa's house. So when they are not home we creep into the driveway, let ourselves in to the garage. glance around furtively and if the coast is clear Toben runs out the front door , sets up the wheelchair lickity-split, dumps me in it and sneaks me into the house. We gather all available towels, turn on the hot water and grab a quick shower. We're in and out and back home in less than an hour. No one is the wiser. We laugh and wonder what the neighbors think.

We always clean up after ourselves.

I am discouraged, disoriented and unsettled. I know that surgery was the right decision but it feels like we have gone backwards several months. Not being able to even hobble around with a cain is difficult. My secret hope is for a walking cast on Tuesday when I go back to the doctor. I don't think it will happen but a girl can dream. The thought of having my stitches removed makes my tummy hurt.

Joanne

We are experiencing a weird phenomenon--days are drifting into nights and then back in to days but it all seems very smooshed together. We are living in one room of the house; the living room. We hang out, surf the interwebs, watch Netflix, sleep and hang out with friends and family all in this room. There are occasional trips to the dining room and the bathroom but for the most part we are here. When we slept in our room upstairs coming downstairs represented a change in activity. We were up and ready to switch gears and face the day. But now we wake up in the same room we will be in for the whole day. It feels weird.

And the days have little to mark themselves. Each day feels a lot like the last. We are experiencing an utter lack of adventure. Today's big events might include going to the mall or grabbing Chik-fil-a for lunch. Maybe we'll head over to Gran and Pap's house so Joanne can grab a shower. The sad thing is that if we were to do these things it would feel like we had a really full day! Pretty weird when a trip to the mall, a chicken sandwich and a shower feels like a big day.

Tonight Bethany flies home from college. Nana and Papa are going to bring the girls up from the Springs and Joanne and I will pick up Beth at the airpoirt and we should theoretically all end up back here at the house for chicken noodle soup. It'll be good to have the girls back home. It feels better to have all of us under one roof.

I can't remember the last time we had Thanksgiving with my folks. We have either been out of town or at Gran and Papa's house. It will be so good to be with them and the Thanksgiving meal is my favorite of the year. In fact it might even be my favorite holiday. Christmas is great but any holiday whose focus is food and family and thinking about what I am grateful for is a pretty good.

Having family around is a blessing. Gran and Papa are headed to Winter Park with Wade and Kristen. I hope they have a blast! They have been more than faithful to our little family and we couldn't have gone through this season without them. I don't think I'll ever be able to express my gratitude for all they have done. They have definitely gone above and beyond.

Anyhow, I guess that's about it. Looking forward to some out-of-the-usual activities coming to our home. I am going to eat turkey till it comes out my ears.

Prayer requests:

1. Sleeping on couches is not the same as sleeping in a luxurious king-sized bed. Please pray that Joanne will be able to get some solid rest at night. Her sleep is very fitful.

2. On that same note, Joanne has slept some better than she did the first few nights. That is such a blessing! Definitely worthy of praise!

3. Please pray for safety for Gran, Papa, Wade, Kristen and the kids will have a great, safe time in Winter Park. They need a time of refreshment!

Toben

Things we know:

I've been in this cast for six days out of the 14 I have to my next appointment. At that point the surgeon will cut it off, remove my stitches and give me a new one exactly like this one. I will weat that cast for four more weeks with no mobility. At that time I will get a walking cast.

The surgeon said the surgery went really well but we also know it's going to be weeks and weeks before we see any results of that. I will be in the walking cast up to another couple of months. After that, hopefully, I will be back in normal shoes.

Though we know it's not true it feels like I have gone back four months in my recovery. Not being able to get around the house is very difficult. It also feels like I will never sleep again. I have never been so tired. I am running on complete empty.

Today I get to take a shower! Mom and Dad have a main floor bathroom that I Can use to take a shower and get my hair washed. I feel very ready for that.

Being an invalid is hard work!

I love Toben. In the past there have been times when I have doubted Toben's love for me but never again. He has gone above and beyond in taking care of me. He makes me feel safe and protected.

I am worried about Toben. Her gives everything he has to take care of me and the girls and my not sleeping means no sleep for him. Please pray for extra rest for him.

While I wish I could say that lying ont he couch and watching Netflix for the rest of the day sounds like fun, I have to say that it is not. The shower is calling.

Joanne

Joanne is going to have surgery on the 15th. Initially we were told that it would be an out-patient surgery but we found out today that she will be admitted to the hospital for at least the first night and maybe more. Joanne is very concerned. She has spent so much time in the hospital this year and going back in, even for a night or two feels like a real setback to her. I honestly think its for the best and that they will be able to keep her comfortable and pain-free in  the 24 hours after the surgery, but my heart hurts for Joanne as she has such sadness and worry about this.

Obviously Joanne will have Gran or Papa or I (and maybe all three of us!) by her side 24 hours a day while she is in the hospital and my mom is going to come to our house for a few days to take care of the girls. So we have good support.

But I am writing this post mainly to ask for prayer for Joanne. She is at a very low point, and very anxious.

Specifically:

1. That a wave of peace that surpasses understanding will wash over her.

2. That the surgery will go as planned and that there wouldn't be any complications that would keep her in the hospital for more than a day or two.

3. That we will be able to figure out how to do life once Joanne gets back home. She will be in a splint for two weeks before her cast goes on and she won't be able to put any weight on it. This presents obvious challenges and we need very practical wisdom to figure out how to accomplish even the most simple tasks.

Toben

Seems like we are in a holding pattern. It is only another 10 days until Joanne's achilles surgery so we are trying to figure out the logistics of all that. We are asking the surgeon if there is a way to get an in-home consult from a therapist to help us figure out how Joanne will get around during the 5-6 weeks she will be in her cast. But my guess is that we will be figuring it out on our own and as we go. The thing I remind myself every day is that the surgery is going ot give her a great shot at walking normally and is necessary if she is ever going to walk without a cane. I tell you what, the day we put that cane away will be a sweet one!

The great thing about having met our deductible for this year is that we have no expenses or co-pays right now when we use medical services or see doctors. That being the case we are off to see Dr. Vandeloo on Monday to check out a few things. One is that Joanne's depression meds don't seem to be working very well and the other is to consult with her about the small hole in Joanne's heart and what next steps we can take to figure out if that was the cause of the stroke. Everyone we have consulted has said that that would be a very unlikely cause but it's all we have at this point. Dr. Vandeloo is pretty awesome and she seems to be the gateway for most of the other Kaiser docs.

The bad thing about our deductible is that we will have to start all over on January 1. Darn.

We had a great meal last night. A friend of Kristen's brought this amazing soup of which I have no idea what it was. It was sort of like potato soup but it was so much better then that. Could have been a squash soup. Who knows. Totally a weird experience not knowing what we were eating but loving it all the same. She also brought amazing grilled cheese with apple and prosciutto. And she brought cookies...and muffins for breakfast! What a treat! So many people have brought us meals and we deeply appreciate every one of them.

Last Christmas Gran and Papa gave us half a cord of firewood. We have it all stacked neatly in the garage and now that the weather is turning we are making fires all the time. It warms much of the house, smells so good, is mesmerizing to watch and sounds like, well, like fire. I have a feeling we'll make it through our half cord this winter no problem. We are spending a lot of time in the living room because Joanne's favorite chair is in here and it is right next to the fireplace. Not too bad a place to hang out.

At some point I need to write a blog post about Joanne and technology. She is totally attached to her iPhone (she got an iPhone 4 while still in the hospital) and she has used it to communicate with friends and stay in touch with the world. She also loves her Kindle. It is much more manageable one-handed than a regular book. Thanks to Sarah for hooking her up. One of these days she is going to tackle the one-handed typing tutorial that she got. Then she'll be able to blog again on her own, which I am really excited about.

Acupuncture...where to start. There is definitely a lot of "puncture" in acupuncture. Joanne pretty much hates it but we are seeing some results. It is reminding her brain that her left arm and leg still exist and it is supposed to stimulate the neural pathways back and forth between the brain and the left side of her body. She has a few sessions left and then will be off for six weeks while she recovers from surgery. I don't think she'll mind the break.

I guess that's about it. Oh: Joanne is sleeping a little better and waking up less. She is on a couple of medications that are really working for her pain. I can't imagine being in the pain that she is in every day. It is a constant thing. Or at least it has been until we got these meds going.

BTW, Joanne will be watching a LOT of movies while recovering, so if you have suggestions, please send them her way.

Prayer requests:

Please pray that the surgery goes well and that we can figure out how to manage around the house.

Toben