Change of Course (in what I think is the right direction)

What a difference!  The heavy duty narcolepsy drug ("be careful with this stuff, it can make you stop breathing") failed (well, didn't "fail" we just found another thing that didn't work) so we are going to try something different.  We both feel good about the chosen course.

Because of all the problems Gretchen was having sleeping the doctor wanted to see Gretchen today.  When we got there she was shaky and would have a periodic involuntary spasm of the diaphragm that sounded almost like a cough.  He was ready to send her to the ER but she convinced him she didn't need that.  The discussion centered around the need to get things under control while getting to the root of the problem.

The neuro/sleep doctor decided we needed to see someone who can diagnose some of the hidden problems associated with the recovery from a traumatic brain injury and find the right treatment plan.  We mentioned a doctor that had been asked to consult previously and the neuro/sleep doctor seized on that (apparently they like one another and have worked together before) so as soon as that office opens on Monday they will arrange an appointment.  It should be noted that when we met with the consulting doctor before he didn't think he could do anything for Gretchen, of course she was on a bunch of sleep meds that also masked what we hope is the root cause.

The neuro/sleep doctor doesn't want Gretchen to continue on the narcolepsy drug (boy did that cause a panic, one hour is better than nothing) but he wants the new doctor to come up with the right meds and not have to do a bunch of withdrawal (we really don't want that either - in light of how it went before) so he put her on one of the old standby sleep meds that is compatible with a large number of medications.  Hopefully since she hasn't been on any regular sleep meds for a couple of weeks this will work fairly well (or at least be an improvement).

One big praise: Once I re-explained what the neuro/sleep doctor was thinking and reminded Gretchen that she was able to sleep when she first got home from the hospital she actually began to lose the shaking (internal and external) and spasms.  She knows that she is not going to magically start sleeping through the night but I think that she now sees the hope of a long term solution.

Please pray that Gretchen will be able to rest and maintain that peace that she is feeling right now and that she will be able to get some rest each night (we're not looking for a miracle - though that would be nice - just more than a couple hours so she can see progress).  Also, Monday is when we will hear back about the new doctor and Monday afternoon is when our new countertops get installed (remember the kitchen renovation?).  The last thing that we need is for the appointment and countertop installation to be at the same time (Gretchen only needs to be at the doctor, I need to be at both and I am not quite that good at multi-tasking).

Also, please let me know if you are reading this and if you want me to continue with updates.  You can either leave a comment or use the contact form on the right of the page.

Time to reactivate?

I have been pondering posting again for a while now.  I think it is time because we need prayer and more miraculous work is being done.

First to get everyone up to date.  Much has happened since last I posted.

In fall of 2013 the three of us camped our way across the country to visit my family in Washington.  It was a wonderful and devastating trip.  Before the trip Gretchen's insomnia was beginning to improve, as was her confusion.  The trip put an end to that (and she still hasn't recovered).  Seeing my family was good for all of us but there was too little time in Washington and at our stops on the road (well, except the stop in Three Forks, Montana - more about that in a minute).  We even had two breakdowns on the road but each time God provided for us, especially in Three Forks where the power steering pump disintegrated right as we pulled into a truck stop.  AAA found us a motel and repair shop right across the freeway.  We were able to stay past checkout time with no charge (the van wasn't ready yet) and Gretchen got to share the story of her stroke and God's faithfulness with the owner.

Gretchen has continued to improve in many areas, including the confusion that plagued her, but following the Washington trip the insomnia began to get worse.  Multiple doctors treated her and gave up.  She wound up on so many meds that she was beginning to get some interaction issues.  But we plugged on and short of the insomnia and its effects Gretchen was showing incredible improvement.

Summer of 2014 saw the beginning of a kitchen remodel (it was really just a refrigerator replacement that got out of hand) and a trip by the boys to Oshkosh, WI for Airventure - a week camped out under the ultralight pattern by the airport.  Gretchen held up really well.  The insomnia was still a problem but once she was asleep no one was there to wake her.  A week after our return the three of us headed to Michigan for a weekend with her dad's side of the family.  She sang at the reunion and everyone was astounded by how well she was doing.  As a result of her stroke she is even closer to these distant relatives.

One thing I haven't mentioned.  Not long after she was home Gretchen got started on Facebook.  I was not in favor but accepted it.  I cannot deny the miraculous re-connections that have happened through her stroke and Facebook - many people who may or may not have been Christians when Gretchen was in school with them are now talking about matters of faith and her faith has been a solid influence on many people.

I mentioned the multiple doctors trying to help with insomnia.  One of the last ones was a compromise when she couldn't get the one that was recommended to her (he wasn't taking new patients).  After a few visits we were getting fed up with him and made another try to get in to the one she wanted.  Miraculously she got in.  Turns out, the doctor we were fed up with was closing his practice with no explanations (we like to think her case drove him over the edge).

The new doctor has taken Gretchen off the sleep meds and is trying a narcolepsy drug that shuts the brain off at night so that it stays awake during the day.  The weaning off was scary but God brought her through that and the week of nothing.  We are now almost at full dosage and still quality (or quantity) sleep eludes her (she has averaged less than an hour of sleep a night for the last two and a half weeks).  She is on the verge of a breakdown and yet her focus is on ways to help her friends who are suffering.

Please pray that Gretchen will be able to sleep.  God allows her to function and appear normal to most people (some can't believe she is as exhausted as she claims) but several times a day she completely falls apart.  Please pray for Peter because watching your mother go through sleep deprivation has got to be difficult. Through all of this God has sustained me and I have marveled and been touched by Gretchen's faith through all of this (she lost the dear friend that lowered her blood pressure with a touch - see the August 14 section of the "Copied from GoogleDocs" post -  and I have told Gretchen that she has become that person to some of her friends who are struggling/suffering).

skiing update

Now I remember why I don't share lodgings with large numbers of Boy Scouts (or any other large number of teenage boys).  It is almost 11:00 at night and they have not yet begun to settle down.  Hope of rest is not high.  I will add more to this tomorrow before I post...

Funny thing, as soon as I finished the snippet I wrote last night I decided to say something about the noise.  As soon as the door started to open the room went silent, like magic.  I chuckled, commented about how interesting it was that the door opening silenced the room and then reminded them that people needed to sleep.  All was quiet until morning.

I got up early to get a shower.  I had just turned off the water and heard an alarm.  I couldn't believe it because it was 6:30!  A few minutes later the talking started and it was all over downstairs.

We finally headed for the slopes around 9:15.  Good thing it was only 2 miles to the ski area.

I thought that there would be ski instruction for the new kids so I headed for the chair lift to get my feet back under me.  It has been at least 25 years since I went skiing and I was amazed at how fast it came back to me.  Unfortunately it was just fend for yourselves so right about the time that I was ready to head for more difficult slopes I realized that Peter was not getting any instruction.  So I headed over to try to teach him.

I was dressed for actively skiing.  Unfortunately Peter was not ready for active skiing so I spent a lot of time standing around.  Even the most patient parent will begin to get irritated when they are cold and dealing with a fearful child.  To make matters worse, the beginner chair has a steep end to it and Peter was not up to dealing with that.  I put too much pressure on him and caused him to crash.  It was spectacular but he was not happy so we went and got something to eat.

After we ate Peter went to one of the beginner areas with another adult and I headed for the beginner chair and then on to the top.  The beginner chair kept stopping so I jumped out of line and headed for the top.  I really should have headed for the top early on (before helping Peter).  Conditions were icy and so I had to take it much slower.  Next time, Peter gets lessons so I have time to get one good run in.

In spite of everything, Peter decided it was a good time and wants to do it again.

Now back to me...

I appreciated Gretchen's desire to post last weekend.  She is doing quite well.  She is far from completely recovered but she is able to function.

Peter and I are on a ski weekend with his Scout troop.  It has been many years (25+???) since I have been skiing so I may regret this.  This is the longest Gretchen has been alone since before her stroke, I may regret that as well.  Please keep all of us in prayer...

Gretchen does quite well until the point where she gets too much going on and then her brain goes into overload.  That happened last night while she was helping pack things.  She was trying to pack some things and got completely mixed up and couldn't figure it out.  I decided to sort it out and tried to take over.  She wanted to explain everything she had done but I didn't have time for it.  Given the fallout it would have been faster to let her explain...

Life has been difficult for me lately.  Too much stuff going on and not enough time.  I am worn to a frazzle.  People keep telling me to take care of myself first but the world won't stop to let me take a rest so I have to keep going.

Gretchen is not able to do major organizing right now.  I have suggested organizing a couple of kitchen cabinets to undo the chaos that has been building (things have been put away where there is space, not where they belong).  We will see how that goes.

Well, I need some sleep before tomorrow...pray for all of us.

And now a word from our sponsor...

Well, not exactly our sponsor, but Gretchen wanted to add a few words since it has been a while since I posted.  A lot has happened in the interim and perhaps I will post again soon, but for now Gretchen has the floor:

To all of you who have cared and prayed for me during this time:

I thought it was time I updated this blog of Brian’s with my own sincere thank you and general update.  My family all tell me I have come a long way in the last half year.  I have to believe them, since they can see the whole picture far better than I.  It is a bit scary for me to realize that a half year has passed, since I was told that the majority of my recovery would be in the first year.  That means I have 6 months to complete this recovery!  Yikes!  I was alarmed and amazed about a week ago, when I walked across the street to see my neighbor, and, on the way home, I got lost.  I somehow thought we lived up the road, but couldn't find a house that looked right.  Finally, I decided I had better look around a bit more, and finally located our house, and knew that was it.  How could this be?  I don’t know, but I have to just keep on trucking.  Since that time I have been on quite a few treks around the neighborhood with Peter, and even a couple without, to try to rebuild that inner map.  I know that it will just take time, and walking around, practicing my navigation skills.  At least I live in a safe neighborhood.

It continues to be my prayer that I will trust God completely for my recovery, and that I will be content with His recovery and His timing for that recovery.  I have anxiety about my homeschooling abilities at this time, but Brian is working closely with me so that I might be able to handle it.  Also, I pray that he will have the strength, etc., to keep up with all the extra things he has to handle, as a result of my current inability to handle many of the things I normally would.  I am hoping very much to get help from one doctor in particular, but it would be a favor for him to help me out.  So we’ll see.  I am also hoping to get some help with my insomnia, as this has left me rather exhausted.  There are a couple of things contributing to this insomnia, and I can’t do anything about either one of them.

There have been some great blessings which have come as a direct result of the stroke, so I am thankful for these things, and have to say that, although I would not have chosen to have the stroke, being the weak human that I am, it was worth it for what has been gained.

Thanks again for everything,

December 23, 2012 - almost there...

Christmas is almost here and I have not been so glad of its arrival since I was a child.

Early on I tried to talk Gretchen into cutting back on what we did for Christmas this year. The idea was to minimize the gift giving (not eliminate, just keep it simple, like homemade Christmas cookies) so that we could focus on keeping Christmas relatively relaxed. Gretchen insisted that we needed to buy gifts for everyone because they were going to get gifts for us. What she didn't realize was that she had already given them a significant Christmas gift – she survived and was getting better.

I had hoped that we would be able to have a nicely decorated house and be able to invite friends and family over and give them baked gifts (Peter and I always bake Christmas cookies and Gretchen and her dad used to back spritz). Instead we ran around buying gifts and I finally had to tell Gretchen that we would not be baking cookies this year since all the shopping had taken a toll on me. She wasn't happy but I firmly held my ground to eliminate on more item to get done in the last few days before Christmas. We did still decorate the house, we just didn't get to share it with our family and friends.

On a more positive note, Gretchen sang in church this morning and she is scheduled to sing again next week. Singing is stressful for her but it is the kind of stress that is beneficial. I did tell her that if she is going to be singing in the near future she needs to have people coordinate it through me. There were some details that got mixed up and caused a lot of wasted effort trying to straighten things out. She was able to work things out in the end but it took some effort. When she gets to the point where she can again manage multiple things at once then I will let her schedule her singing engagements.

Gretchen did sing wonderfully. God was gracious in allowing her to retain her singing ability with very little effort. She does need to sing more, I think it would be good for her. There are some possibilities at other churches, hopefully they will materialize.

Unfortunately, we now have a sick household. All three of us have runny/stuffy noses and I have a nasty headache. I know that my problem is lack of sleep because I got a call to go in to work at 9:30 last night to fix a computer. I didn't get home until after midnight and didn't wind down enough to go to sleep until almost 2:00. Since Gretchen needed to be down at the church early to warm up I couldn't sleep past 6:30 this morning so I need sleep. I suspect that Peter and Gretchen are both suffering similar since they didn't go to bed until after 11:00 and I suspect it took a while to get to sleep. Fortunately I took tomorrow off so maybe we can all get some extra sleep. Please pray for our general health.

December 17, 2012 - Not about Gretchen, Peter, or me

I warn you now, this is about the latest shooting in Connecticut and some folks might disagree with me.  If you read beyond this point please keep an open mind and if you disagree please do so politely.

I am frustrated!  Where I work we need to keep the news going 24 hours a day in case something major happens that could affect the power grid.  Every time I went into an area with a TV they were covering the shooting (I think even The Weather Channel was covering the shooting).  Yes, it is a tragedy, but Man is inherently sinful so this should not surprise us (sadden us, yes, surprise us, no).  Mention the story so that we know about it and can pray for those who are hurting but the more we focus on what this disturbed person did and analyze his actions and motives for the entire world the more likely we are to have another incident because the next disturbed person will see how much attention this one got and realize that he can be somebody by killing a bunch of people.

To make matters worse, this is being horribly politicized.  There are already calls for stronger gun control.  This guy took a gun into a gun-free-zone.  Because of that he was able to keep killing far longer than if responsible gun owners had been allowed to posses guns at the school.  Over the weekend I read how the principal and a counselor had raced to confront this young man that was doing the shooting.  The principal was killed when she charged at him trying to stop him (I don't remember what happened to the counselor).  If the principal and counselor had access to firearms and knew how to use them this tragedy would have been much smaller.  Instead we are told we need to put more restrictions on responsible gun owners (which won't solve the problem because the worst school attack in US history - 1927, Bath Michigan, 38 students and 7 adults - was done with a bomb).

Ultimately, the problem is sin and the fact that many churches in the US have abdicated their responsibilities to care for those around them and forgotten their responsibility to the Gospel.  We have asked the government to take care of the needy and hurting but government can only provide things (and not do that very well) and cannot provide the love and forgiveness that the poor and suffering need.

Let me close by saying that I don't have all the facts (I avoided the story as much as possible today).  I am merely commenting on the vulture mentality of the media, the political opportunism of our leaders, and the woeful absence of most of our churches from helping our culture. (would that I had time to expound on that last item, but I am 15 minutes late already)

December 9, 2012 - it's been a while

I happened to look at the stats for this blog this morning and I see that a few people are still checking in (probably just my family, but that's okay) so I figured I should post something.

Gretchen is doing amazingly well (though, by faith we are not surprised).  She still has memory issues but she is developing strategies for coping.  All of her therapy is "finished" (speech - which works on memory - will check back before the end of the year to see if she needs more) so that is one stresser off for the holidays.

Speaking of the holidays, we abandoned a tradition this year.  Usually we go to North Carolina and cut a tree for Christmas (for the most part they only have pines in Tennessee and Georgia but North Carolina has Frazier firs) but we decided that the stress of an all day trip plus the cost was just too much to do this year (plus, this is the weekend we would have done it and I am on-call so I can't be more than an hour away).  We found what appears to be a good Frazier and spent less and still had time to do some prep.  Still, I kind of miss crawling around in the dirt to cut the tree and then hauling it down the steep slope to the car.

Gretchen was able to sing a solo at church a few weeks ago and has two more scheduled before the first of the year.  Considering that no one was asking her to sing before the stroke I think this is great!  Singing causes a lot of stress which aggravates the memory but I think it is helpful in the long run.

Please continue to pray for Gretchen.  I know that she will make a full recovery but we are called to pray.

Also pray for my family.  My parents' house sold in record time (1 hour after listing) for full price.  Some suggested that they should have asked more but they got more than what they needed out of the house and didn't have to go through the stress of repeated showings with no offers (or really low offers).  Simply put, God pulled everything together at his time.  Now there is much to do out there but I can be no part of it.  There are still health issues to be concerned about (my dad had surgery to remove cancer - it was successful but he isn't up to a lot of work) so with the prep for moving next month they will need help.

Related to my parents moving and their health issues I am having struggles.  We want to go out there to help and see the house one last time but I only have a week of vacation available right now and with all the medical expenses we have I don't think it is responsible to plan a trip like that unless there is a genuine medical emergency.  Pray that I will have wisdom and that God will make it clear if we are supposed to go out there.

I will try to post at least weekly for a while since I expect to see much changing in the coming weeks...

October 28, 2012 - a very belated post

I apologize for not posting sooner.  Finding time to work, uninterrupted, is difficult right now.  If I get interrupted I have to re-read everything I have written and that leads to rewrites which I refuse do do.

Generally Gretchen is doing well.  Memory is the big issue right now.  It is easier to say that she suffers from confusion but really she isn't confused unless her memory is being a problem.  The manifestation of it is confusion.  There is definitely improvement on the memory issue but it is still a problem when Gretchen is tired.

One very good bit of news is in relation to her feet.  I don't remember if I mentioned it but Gretchen has been having constant foot pain (to the point where she switched to taking her pain meds that were prescribed for shoulder pain to her foot pain - with doctor approval).  She was diagnosed with plantar fasciitis in one foot and tendinitis in the other (with a bit of the other in each foot).  On Friday I took her out and had her fitted for running shoes (Peter and I can only wear running shoes).  I spent $90 on shoes.  She spent most of the day yesterday on her feet and said she had no pain.

I spent most of yesterday sick with a sinus headache (I had to work for a couple hours in the morning) and Peter says he is battling a sinus infection.  I think Peter and I are reaching the point of exhaustion.  Please continue to pray for us, and especially Gretchen's memory.

October 15, 2012

Gretchen had a doctor appointment today.  When we got there we found that he had not been told by the hospitals that she had a stroke, even though they asked me for permission to get Gretchen's records from him.  The appointment went well.  Turns out that Gretchen has, what appears to be, a bad case of Plantar Fasciitis.  We are assuming that this is the result of all the time she spent in bed and then strapped to a wheelchair, essentially off her feet.  The doctor wants her to go back to physical therapy and have them work on it.  The pain is actually radiating up into her ankles so he is not positive it is Fasciitis but thinks it probably is, given where it originates.

Gretchen's memory issues are going to make me crazy.  She has lost her purse twice recently (both times it was in the house) and today she lost her calendar.  We think it was left at the checkout desk of the doctor's office but we aren't sure.  She is going to check tomorrow when she goes down to that area for therapy.

When Gretchen goes places it makes her memory worse later in the day.  When the she starts looking for something where it doesn't belong and I start to direct her to the right place she tells me that she used to keep it where ever she was looking, even if she never did.  I want Gretchen to be able to do as much as possible but unless I watch her when her memory is bad she starts getting into all kinds of things that she has agreed that I need to manage.  I know that she is trying to get it right but her brain isn't cooperating.

Right now I feel like I work all day and then come home and, after a brief break to eat dinner, have to begin coordinating all the night time stuff.  I realize that these feelings are because tonight has been a bad night in that regard and because I spent most of the weekend with a blinding headache (stress/sinus, I knew it was coming a couple weeks ago, I just didn't know when it would hit).

Pray for Gretchen's feet and memory and for my health and patience (and that I will have what it takes to keep going).

October 7, 2012 - I feel like a ping pong ball

Before I get to my post, if you read my last post (October 4) before I edited it today please go back and look at it to see what I removed and please don't discuss what was removed.  The problem is not what I posted but what non-family members posted somewhere else (the beauty of my blog is I can delete comments that are inappropriate - and I will, but haven't had to) which got read by someone and then passed on as "we are so sorry to hear about..." (this is how it was told to me when I was asked to remove the post).  I am able to be transparent in my blog with things related to Gretchen, Peter, and me because I know explicitly what can and can't be talked about.  When I post about my family in Washington I give just enough information to allow people to pray intelligently unless I have specific permission to give out details.

One more thing: Remember, if you post anything on the internet it is public (regardless of settings, all it takes is one person copying and pasting...) and it is permanent, even if you come back in a couple days and delete it (I look up old versions of things all the time).

Gretchen is doing quite well these days, except when she has memory issues.  I frequently kid her about being a 4.7 year old in a 47 year old body because I have to follow her around to make sure I know where she put things so we can find things later.  She frequently tells me how frustrating it is with her memory going in and out.  She is trying to do some things around the house and that is good.

When Gretchen sings (in church or with the radio/CD) sometimes I can hear her old voice and sometimes there is no umpf behind it.  I am pretty sure this is related to the memory but it is maddening for Gretchen and  she looks forward to getting it under control.

One good thing that is hard to notice is the shakiness in her hands is starting to diminish.  She had some shakiness before when trying to do detail things and I think that is about back to normal.

Please continue to pray for Gretchen's memory and her attitude (it has been good in spite of frustrations).  Also pray for me as I deal with this and things on the other side of the country.

October 4, 2012 - I can't keep up-updated

Okay, let me start by saying that I am glad that I can't keep up.

This has been a busy week and I am worn out (which is why I haven't been posting).  Last night I sat down to post but decided to catch up on a couple of email accounts.  One of the emails was from Breakpoint and had a reference to a comedian named Brad Stine.  I looked him up and tried to watch a couple videos but they were choppy (audio was okay, maybe I need new drivers on this netbook) in the process I also found a site with (mostly) clean jokes and sat reading them until my time was gone.  It was helpful.

Gretchen is making incredible progress.  When she first arrived home she couldn't really carry a complex thought, let alone run a household.  Less than a week later she is mostly running things.  There are still memory issues but they are getting less and less.  To those who have been praying, thank you!

We had a lot of difficulties the first few days of this week because Gretchen is the parent but Peter was "in charge".  Add to that some time critical events on Monday and Tuesday that cause confusion and I almost pulled the plug on having Gretchen and Peter at home alone.  After talking with Gretchen I decided it would be okay to see how Wednesday and Thursday went.  I was still concerned but was willing to wait.

I am glad I waited.  Gretchen is now in charge with Peter just keeping her from doing something dumb.  She does have to ask what needs to be done from time to time but she can usually do it.  Cooking regular meals is still out of the question but she is getting a handle on the day to day stuff.

Please pray for my family out in Washington State.  Specifics, though vague, removed by request because some folks have gossiped.  Also pray for my dad's prostate cancer.  I don't know the status and there was supposed to be a doctor appointment today but I don't know what this was for or what the outcome was.  Also, please pray for a friend of mine's wife who keeps having heart palpitations but the doctors can't find a cause.

Yes, I know that I am asking for prayer beyond my situation.  You people have been so effective in praying for Gretchen that I covet your help for my family and friends!