MIchael's Quest

Home Again

Michael is back home!  His doctor took him off 2 medications and reduced another, I’m very happy about that.  Michael’s doing okay – I know I keep saying those words and it might be difficult to decipher what that really means, “okay” is obviously different for him than it is for most of us.   He’s feeling better, no fever, no head pain and less tremors, he’s very happy to be home.

People with severe brain injuries battle spasticity, their muscles tighten up like a cramp you would get when you’re swimming, it’s painful and makes functioning very difficult. To help in this battle there are various muscle relaxing drugs and methods, the downside of these drugs is fatigue, drowsiness –they make you feel like you really need a nap and can make your arms and legs feel like they weigh 100 lbs each.  Baclofen is one of the most used drugs for this, Michael has a pump in his abdomen that administers baclofen to his spinal cord, this makes for less of the sleepy effect but still gives him the 100 lb arm part – and some of the sleepy part.  After a while, maybe a couple weeks or a month the body usually adjusts to this, mostly. So, Michael’s balcofen was increased and he’s adjusting to that now, this means he’s a little less alert and he’s a little slower moving around.  Hopefully he’ll get through this quickly as he has before.

Thanks for your care and for your prayers, I appreciate it and he does as well!

Kirk

http://thepoweroflove.us

Michael is coming home

I’m going down to bring him home on Wed.   Well,  we didn’t find the specific reason for his head pain so there is still some un-easiness in this but he’s doing well, not complaining of any pain now for a week or so. They did adjust some of his medications, hopefully this took care of it and I’m happy to see these reduced.  The therapists at Rusk were surprised at how well he’s doing, this is good of course, but he has been capable of doing more than the things they were surprised at.  So, I’m thankful for the opportunity, therapy and doctor attention he’s had the last couple weeks for sure but there are still some questions lingering.

I know he is very much ready to come home,  it will be good for him to be here.

Kirk
Thepoweroflove.us

Michael’s 1st Week at Rusk 2009

I spent the weekend with Michael, he’s doing okay. He’s ready to come home but realizes he’s there to get some help.  This stuff has to be a pain for him.

He’s only been there a few days so they’re still in the process of adjusting his meds.  I’ve read some on a couple of the meds he’s taking and it could be he needs less of a couple or maybe less of one – that can get pretty confusing.  He has one for memory, one for alertness, but then he also has a med to cut down on the spasticity.  Since the spasticity drug will make him sleepy it’s possible that it will work against something that is supposed to help alertness. He is getting a good workout everyday.  

Everything is good – so far so good.

Kirk

Wed May 22, 2009

I just called to check on Michael and he's doing good.  We took him to Columbia yesterday, got checked in and answered all the usual questions, everything went well.  When we were getting ready to leave it seemed he was trying to say something, he was taking deep breaths and pushing sound out - no words just sound.  I asked him if he was okay, if he was good with us leaving, if he was comfortable; his response was yes to everything.

We've been through this before, I feel good that we're getting help with things that are bothering him, I feel good that he's at Rusk where everyone is so good at what they do, so caring and Michael responds so well to them.  It's all good but it's still difficult to leave him there and come home, 130 miles away.   I will try to post here as soon as I get new information - maybe I can sneak some pictures of him in therapy and post them here.

Quick update

Well at least I'm hopeful we'll be on the road to Columbia MO - I have to remember to put the MO in there as some have thought I'm talking about the country of Columbia.  - we are awaiting approval from Michael's insurance. 

Update 4/17/09

Christine took Michael to Rusk this morning to get checked out.

His Baclofen pump is working fine, but the doctors would like to admit him for further testing and re-evaluation.

Insurance will have to approve this first.  So, if all goes as the doctor is planning, he'll come home now, stay at Christine's and on Monday go back to Rusk.  The doctor wants to adjust his meds, this will require him to be there for observation, he also wants him to get a MRI to be sure nothing is up that a CT scan didn't show and have the therapy staff evaluate him.

I don't like that something is wrong, but I always welcome the opportunity for him to stay a while at Rusk, he has made progress while at Rusk that he's never made any other time.  Over all, this won't be real convenient and I wish someone could look at him and say "I know what's wrong" and then fix it, but those things aren't very common, so this is not bad news at all. I feel more confident that Michael’s problem will be solved in the care of the doctors at Rusk than I would any other place.

Thanks for your continued care as we continue on – so far so good.

Kirk

thepoweroflove.us

More of Something

The pain that Michael had a couple days ago is back.  I’m not sure, it would be better said that I don’t have any idea what is wrong, the only thing I know is that I’m tired of him hurting. Pray for his comfort and that those who examine will diagnose the problem and correct it.

Thanks for the concern and prayers, it is much appreciated!

Kirk

thepoweroflove.us

I hope Spring is coming!

We had a little excitement today.  Michael’s has had something going, he’s been different but I don’t really know what to say other than that. He’s at Christine’s this week and yesterday I went over to get  him ready to take him to church with me and he had a bad headache, plus the back of his head was extremely sensitive.  He said he felt fine other than that but I was,  I am a little concerned .. he has a shunt in the back of his head that is there to drain excess cranial fluid –the shunt is a “just in case” thing, but if his body doesn’t absorb the cranial fast enough then it will create pressure on his brain, this is dangerous.  If you heard anything about Natasha Richardson then you are aware that pressure on the brain is very dangerous.  So, because of this I was concerned and planned on getting him in to see the doctor that put the shunt in.  This morning, Christine said he woke up about 3 and was in obvious pain, said that his head hurt, she called his doctor who said to get him to the ER.  So, we did.  I always worry about these things.  There have been a couple times he’s been admitted “just to check him out” and then he ends up getting sick or falls behind while in the hospital. Plus he just does not like being there.

Michael was not happy about being there today and was worried about being admitted, like I was.  He was upset about this so much that he would not confirm that anything hurt, everything was fine.  It seemed to me he was answering so he could leave.  I talked to him – as I was talking to myself – we agreed to let it go and let God take care of both; the finding out if something is wrong and the fear of a hospital stay.

Well everything worked out, after blood tests, x-rays, CT scan, they said they didn’t see anything wrong and we were released.  It does seem something is up, we’ll just have to keep a close eye on things from here.  Thanks for checking and thanks for your prayers!

Kirk

Spring is coming!

Michael is doing well, he has remained strong and healthy.  I'm going to start getting him into his Standing Frame on a regular basis.   We haven't gotten him standing regularly for some time now - lots of different reasons and excuses.  That's the thing with making progress, there are excuses and reasons, if we don't eliminate the excuses then the reasons make progress very difficult.  The Standing Frame supports him so he can stand with all his weight on his legs but it prevents him from falling, it's really a pretty cool device.  The weather is changing!!  I'm hoping to get him outside more, the nurses will be doing this also, we're lucky to have a nice walking park close to the house when he's with me so he can see birds - that he loves so much - and just get outside.  We've been told over and over that stimulation is the best medicine for brain injury- you can't make dead brain cells alive again but you can stimulate live ones and that can do amazing things. Things are going well for Michael at my house or his mom's it's good - God is good.

So you may have heard about Natasha Richardson who feel skiing, the report is now that she is "brain dead".  I hope this isn't accurate, that God is with her and steps in for her recovery.  I also hope we take note that life can change in an instant.  Today we have lots of things we're fighting for, upset about,  happy about, things we plan for tomorrow, for next year.  For any of us in an instant life can change and all those things that made up our life are suddenly irrelevant.  God reminds us of this in James 4 - 15.

James reminds us that in a moment life can change and we can see that every day we live.  Romans 8 reminds us that nothing can separate us from the love of Jesus Christ, which is free to us by accepting him.

Life Sucks Sometimes

Jesus is my Lord, Master of the Universe - he is God of all and he is my friend but life sucks sometimes. I can also say; Life sucks some times but Jesus is still God, he knows, he cares and he's my friend. Both are true, completely! I don't even think this is a paradox, we just see it as one because we think it should all be good and easy. There is more to a relationship and faith in Jesus Christ than making our life good. The knowledge and trust in Jesus Christ is powerful, it IS life changing, there is nothing in this life that can take away from that and he does "make it all okay". Still, I think sometimes people who are going through stuff or who are sympathetic to others who are going through stuff might even be offended by our Christian version of "Life's Good". One might say that it doesn't make any difference whether Jesus is God or not, it doesn't change my situation, Life still sucks, I still hurt. This is somewhat true, maybe it's kinda the point. We base our life on good and bad a lot. We pretty much categorize everything in life as good and bad, we may justify the bad with "reasons" but we still label it good and bad – black and white. Maybe God can see color where we see only black and white and maybe every shade is a unique opportunity to know him differently.

I’m not making light of pain, not at all.  I experience some pain and it hurts, it is real and it doesn’t go away just because I trust God.  There are people I love that have some bad stuff in this life, I know they hurt and I hurt with them.  I look forward to a day when I can hear my son’s voice and we can talk together. Life sucks sometimes!  But, why does this throw us? The Bible is full of example after example of hurt and pain and suffering.  Personally I think that God doesn’t get into the things near as much as we do, I do not believe he is nearly as concerned with the things as we are – we can’t see past them, he wants us to see through them to him.  We probably more see him in the things and blame him, or we get stuck on why, we’re stuck on the things.

If we will stop focusing on the things, the whys, the hurt, the pain as well as the fun and success and start focusing on Jesus Christ we can have a better, deeper relationship with him.  The things will still be the things, at times life you will probably feel “life sucks” but your friend, my friend, who just happens to be, creator of all, Master of the Universe will be right there with you, with me, going through the things with you and with me. Romans 8 is awesome -

Rom 8:18 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Rom 8:38 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, 39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

Life on Mars

I think we can learn something from the show Life on Mars.  If you don’t know the show you should check it out. Sam, a policeman is hit by a car and left in a coma, but then he wakes up in 1973. I’m not sure why the writers picked 1973 but the story is good and can be a picture of life for me, as a follower of Jesus Christ.  In the most recent show Sam, the guy in the coma in 2008 makes a step toward “accepting” his situation in 1973. He says that he’s going to start living in 1973 because there are people who are worth it – then he says as long as  he’s living there, in 1973 he’ll always be looking for his way home.   This is so good for those of us who are looking for another home, not in a different location but a different time.  Sam realizes there is a lot to live for right where  he is, in his current circumstances, in his current time. It’s interesting that, at that same moment he realizes this, his boss in 1973, calls him friend. 

As a Christian there is a lot to look forward to, a lot to hope for in another place and time, there are friends that I miss, one especially that I really would love to see and talk to.  We hear the song “I Can Only Imagine” and we can relate, we can only imagine what it will be like to see Jesus, to have no more tears, to finally live as we as humans were intended to live. We will see those who we have lost, to have those who we love whole. I look forward to this, for my son, for my family, for my friend, for others.  Still I am here, I am living here and now and there are people all around me here and now, relationships, circumstances - life. Sam sees those people and decides they are worth it.  I wonder how many of us can’t see those around us, they aren't woth it..  We’re here in this time and place – whatever this time and place is and there are people all around us to love. I should, we should – as followers of Jesus who are looking to go home – we should live as Jesus lived in the time and place we have. Forget about all the "why" stuff and live today where we are.  When we accept where we are God can begin using us where we are.

God is Enough

I keep coming across this same thing – no, that’s not accurate – I keep crashing into the same thing, and it is “God is Enough”.  That says so much but can, and often does, speak so little.  Here is my best way to say it;

Imagine everything you ever feared could happen already did happen – Everything!  At this point Jesus Christ is still enough and he still loves  you and still cares.  We just don’t get this!  We identify with the Thing we want, the Thing we want to change, someThing is wrong, someThing is bad, someThing we are worried about surfaces and we seek God, and we seek him because of and for that Thing.  For many, if God doesn’t address and heal or solve that thing then God isn’t God, for many life becomes waiting on God to heal or solve that Thing, God is God but his timing is just different than theirs.  I am crashing again and again into the thought, the principle that God is enough, regardless.  Regardless of the Thing and regardless of noThing, regardless of anyThing, Jesus Christ is Lord, he is God.

This can feel like a lack of trust or faith can’t it.  I mean if God is God and I ask and believe for some Thing, then he will is faithful, right?  I just have to have enough faith, be patient.  But here we are again going to the Thing and not to HIM. 

Here is what really nailed me on this – Hebrews 11 “The Faith hall of fame”, here is where God brags on some who have had “faith” throughout time

35 Women received their dead raised to life again. Others were tortured, not accepting deliverance, that they might obtain a better resurrection. 36 Still others had trial of mockings and scourgings, yes, and of chains and imprisonment. 37 They were stoned, they were sawn in two, were tempted, were slain with the sword. They wandered about in sheepskins and goatskins, being destitute, afflicted, tormented—

What gets me here is those who had dead raised to life are in the same place as those who died, those who got the Thing they wanted are in the same place as those who got no Thing, and in God’s description, there is no difference, both are bragged on as having faith.  The common component in these IS faith.  So, faith cannot be trusting God for some Thing to happen.  If we can go here we can quit wasting any energy in “why did he allow this”, why did he do this or that Thing. We can quit wasting energy on “when will God do this Thing?”

My God, Jesus Christ is enough whether the Thing I hope for happens or the Thing I fear happens, whether the Thing is better than both or worse than both.  If my faith is “in Jesus” then the Thing is irrelevant. It is not about the circumstance or thing,  Jesus is enough regardless!

Good stuff in 2008

This has been a good year for me and my family.   For Michael, for all of us - we have a lot to be thankful for. 

We've gotten some stuff that has made life easier and better. 

We've gotten our van converted - this has been awesome, it makes moving Michael much easier and safer, it allows us to do more and there is opportunity to do much more with the van.

We've gotten a lift installed - this is also awesome!  We're able to get Michael in and out of bed much easier, much safer and as with the van it allows us to do more and we have the potential to do a lot more with it.

Christine had gotten some help and improvements to her house, she's got a ramp that allows for easier and safer movement outside the house, this has allowed Michael to get out more, she's gotten some help around the house also, it's been good for her.

Michael has been very healthy and he is content.  Philipians 4:11  We can all learn a lesson from him here. 

I've realized Michael is "okay".  This continues to amaze me, really I just don't get it but Michael is good with life, good with God, he is happy.  He goes through times where  he isn't, he goes through times when he's mad at everything.  Michel reluctantly will acknowledge that there are times when he's mad at God but that is for a time and then it's done.  Generally I'd say he does better than I do, but this has been and continues to be an amazing lesson to me and teaches me more about my son and my Lord. 

I've learned a little bit to just "BE with God".  I've learned a little bit to not worry about the past or the future, to not try to figure it all out but to live in this moment here and now.  I'm not saying this is 100%, nor do I believe it should be but it is good for me to let it go some times, to realize that I don't know it all and understand it all.  Sometimes it doesn't fit, it doesn't make sense to me.  This isn't that God doesn't fit, or doesn't make sense, it isn't my LORD who has to change it is me.  He is not required to reveal everything to me or to make me understand, I am required to follow and obey him, to trust him.  Sometimes I think - oh I see now and I've got it down, then soon I realize - ehh maybe not quite completely as I thought. I can see in the Bible and in my life that God uses processes, he doesn't just "poof" make it happen, he is much more than that. I thank God for what he has shown me and mostly for his patience with me.

Just because it isn't sin, doesn't mean it isn't stupid!

Just because God forgave the sin, doesn't mean he's taking away the consequences!

God isn't magic -  God is REAL, more real that what you think you know or think you see.

Obey him, Trust him, BEEEEE with him.

Choices

You've probably heard the saying that life is about the choices you make.  I think choices play a big part in life. Some times we need to learn to live with the choices we have;  I have wasted a lot of time throughout my life complaining about things I don't have or things I do have that I wish I didn't, I was wasting time thinking about things that I can't change, about choices that I don't have instead of the ones I do.  Some times we have to learn to live with the choices we've made; the choices we make today will affect our lives tomorrow and beyond, they will likely affect those around us, those who we love the most as well.

The choices that we've made in the past, we should accept and live with them, but we can't undo them, we can't redo them.  I have spent a lot of time and effort wishing I had made different choices in the past, feeling guilty about the choices I made in the past instead of living here and now and putting my efforts in making good choices today. 

When I worry or complain about the choices I don't have, when I stress over the choices I have already made, I freeze and don't do anything, I try to make up for things I can't change, I think some of this is good, but it can quickly be too much. 

The thing I have needed to learn is that all I have is this day here and now, I can't change it, I can't change where it came from but I can make choices today, here and now that are wise, that honor my family that are in obedience to and honoring to my Lord Jesus Christ.

Gaps

I don't know about you but I am a Bible believer, yeah I believe what it says to be true, accurate, literal - where the context is literal - I believe it to be inspired and perfect.  So, with that I see gaps, there are gaps all over the Bible where God doesn't give us the whole picture.  Some might say there are no gaps the missing pieces just haven't been found yet, ahhh - maybe, but I don't think so.  I believe God has intentionally left gaps for us to fill and we are to fill those gaps with personal conviction and application.  If you think about the the fact that the Bible was written in a different era, a different space and time this fits. 

One of the rules I have learned in Bible study is consistency - God makes it fit - The Bible is consistent front to back, if you think you've found an inconsistency, keep looking, God is trying to get your attention to somewhere else.  Apparent inconsistencies are like gaps they cause us to think.  Hmmm, what is going on here?   Or, how come  he doesn't just come out and say it?

This idea of intentional gaps is consistent with how God is in life.  There are areas of life where God lays the answer out clear, the problem is not knowing the problem may be obeying but it is clear.  There are other areas of life where God does not give us specific information, his principles apply but he doesn't tell us exactly what to do - Gaps.  We are free within obedience to him, with in trusting and submitting to him, to make choices within those gaps.

In my life this is true, usually I don't like this, I would rather God put the solution, the answer the direction right in front of me so I don't have to decide, I am confident that my deciding will screw things up somewhere.  With Michael there are many gaps, should I  push him more, should I get this device or aid for him?  Should I step in, in areas where I think he's not being cared for at the moment?  Should I be quiet and let others make decisions?  I have freedom, I also have reasonability - what do I do? I think and re-think, I some times decide, then I re-think (although I try to do less of this one)  Maybe our Lord just wants us to do something on our own for him, he wants us to make some of those hard decisions, and the easy ones with him in mind instead of simply telling us what to do.

I pray that you and I will trust God in the gaps, not blame him for leaving us, not do just what we want to do and leave him, but trust him and live in the grace and liberty that he's given us.  In these gaps we can freely express our love and trust toward him.  We are not dictated exactly what to do, we are free to love him, in the person he made us to be.   -Think about that, isn't that the kind of love that you want to receive?

Little hills? Kirk is OLD!

We're getting some good use out of the van!  Over the weekend Amy and I took Michael for a walk at the Legacy Park trail, it was a little warm but just did about a 20 minute walk, it was really nice.   Sunday we went to church, then Michael and I headed for the trail again, it was cooler on Sunday so I thought we'd go for a longer one. I hadn't been on much of the trail at Legacy but I had been told it's really good, there's lots of little hills.  Yeah!  So, I don't know if I just underestimated how much effort it takes to push a wheelchair up and down a "little hill" or if I'm just Old, way out of shape.  It was a pretty good work out.  Guess walks with Michael will accomplish 2 things at least.

I want to say thank you to all those who prayed for us with this van thing!  This is really a nice dose of freedom for Michael.  Now, I have to work on getting his ramp better for nurses to use - it's a little steep, I appreciate your prayers on this one too.

Thanks for stopping by!

Kirk

Measurable Progress

Well,  Kirk hasn't been good about keeping postings, so I'll update everyone :)

Kirk and Connie were without their van for about six weeks... it was in Detroit being made handicap accessible.  They had a special ramp installed, removed some seats and went to a great expense to make sure Michael can be transported safely.

Up to this point, Kirk has always had to go with Michael, as he is the only one of us that can lift him into the van.  It is very strenuous on his back and has caused him some pain.  Now, with the van converted, Michael can travel without him, as long as there are two adults there (one to drive, the other to attend to Michael).

Kirk and Connie are being very generous with the use of the van.  Last night, Nurse Deborah and I took Michael to VBS at my/Michael's church.  Michael was excited to go.  He used to be very active in helping out at VBS - from working in the kitchen making dinner for all the volunteers, to helping out with the plays backstage.

He seems to be the star of the evening before VBS even started.  This is the second time since his accident he has been to his home church (he goes with Kirk and Connie sometimes), so everyone was excited to see him.  He had some pizza sauce while Deborah and I ate and later had a group of kids surrounding him.

Nurse Deborah was great with the kids - they were asking all kinds of questions - Why is he in a wheelchair? (He fell and hit his head).  Can he talk?  (Well, yes, but not like you and I do... his "talker" doesn't work anymore, so he talks with a computer).  Can he walk? (No, that's why he has this cool wheelchair.)  What is that purple mark on his neck? (It's from a trache.  When he was first hurt, he needed help breathing and the doctor's put a tube to his lungs there.)

On and on it went.... When his computer was charged up, he was able to answer questions himself and the kids like the voice it spoke with... It sounds like Gov. Arnold - real deep and monotone.

Michael was very patient with them, but told us later he was a little embarrassed.  That comes with the territory, but I think after the kids get used to seeing him, the questions will stop and he will be seen as just a normal young man.

Many of the adults stopped by also to say Hi and shake his hand or get a high-five.

Overall, I think it was a good experience for him.  Mom was nervous - I always am when he has a new experience.  I'm sure I'll get used to it after a while.

Nurse Amy, who works on Sunday mornings, has agreed to come to church with us.  We hope to make it a regular thing on the Sunday's Michael is at my house.

Pictures of Michael at VBS will come shortly

Christine

Through the Storms and In the Storm

Last night as the storms were rolling in I prayed that God would protect my family, friends and even their houses, yes I named each specifically and yes, I trusted God for that. This morning, once again I thank him, I praise him that no one was hurt, nothing was damaged, the storms moved their way through around us. I asked God for that protection, but I can not say that I believe I am promised or guaranteed that protection. This is where it can be confusing. I do believe God answers prayer, I do believe prayer moves, even changes the hand of God and I believe it is clear in his word that God desires, even commands us to ask him and to trust him. Look at James 5, especially verse 16, look at the conversation with God and Abraham as God is about to destroy Sodom and Gomorrah.

Still, I am sure that somewhere in the storm last night there is at least one person who has committed their life to Jesus Christ but this morning they have storm damage. I am convinced that there is at least one saved, God honoring, Bible believing Christian, without un-confessed sin in Greensburg Kansas or Windsor Colorado where the whole town was wiped out awhile back. There is at least one person in our military killed or captured and imprisoned by enemy forces whose heart is right before God, whose sin is confessed, who has accepted Jesus Christ as their Lord and Savior.  I'm sure we all know people who have died or lost it all, and we know their testimony. So, while I do believe God answers my prayer and the prayer of believers, I also believe God reserves the right to do as he wishes. I believe many are confused by this and try to fix their confusion with stuff like this... we'll say, 'God will allow trials but he'll get us through them', or we'll think as long as we do not have un-confessed sin then he'll keep us protected from harm.  Well, at least real harm, he'll keep us from the really bad things and get us through everything.  Where is the line drawn that separates really bad? What does "get us through it" mean?   

What pieces of this life does God count as important (as we do) and guarantee  Family, friends, health, happiness? What parts of this world are "what it's all about" to Jesus? Is there any THING in this world that we can claim as protected by God? Who are God's enemies? I believe our confusion comes when we start looking at the things, the circumstances  as I read in an excellent blog this morning "we chew on the bread and spit out the God's word"

If I think about the things and the circumstances then I'm stuck with the questions;  "how can I trust you for this, this thing", "if I don't know you're going to do it?"  "What is it, IT, that you want me to trust you for."  But, in this thought and in these questions I'm getting the things ahead of my submission, ahead of my relationship to God.  We don't trust him for the things, we trust HIM and give him the things.

For me, when I don't get it or can't figure it out (which seems more often now) I default to obedience and try to not worry about why and what if and all that. God tells me to trust him he tells me to ask, to bring my petitions before him. 1 John 3:22; 5:15. If I am not trusting him I am in sin - so if I try to do it all myself and don't include him I'm in sin. See Romans 14, especially verse 23.

He tells me to submit all that I have and all that I am totally to him. 1 Cor 6:20; Rom 12:1.  While these 2 things will, without any doubt they will conflict with each other, they also provide clarity to me, the provide freedom to me and even joy if I really give myself and my request to him.

It does not matter what happens, how bad or good it is, or it seems; getting through doesn't matter, how it comes together doesn't matter, when it's all said and done doesn't matter, what matters is; Jesus Christ my Lord and my friend is here with me  No Matter what.  Psalm 139, Psalm 56:8

Michael is ok

June 2008

I guess when the title is a date that means not much is happening - could be a good or bad thing.

Well we're about done with therapy and the Rehab Institute.  Michael has made some progress with his head control, with voicing and with his arm movements but it is slow, hopefully we can be consistent with a plan at home and continue the progress.

I still haven't moved on the van cause I'm still hung up on the financial side of it.  Some time in the next few weeks we'll be sending it off though and once we get it converted it will be much easier to move Michael and with that he'll be able to get out more often.

We're off to Columbia for a checkup tomorrow.  There's a young guy named Justin who was in a car accident, he's in the University Hospital in Columbia.  Christine got the info on him, he's going down a similar path to Michael's but it appears his injury wasn't near as bad.   Justin Foster is his name, please remember  him and his family in your prayers.

Thanks for stopping by,

Kirk

It continues...

Updates - Therapy continues.  Michael makes quick progress, then it slows down.  I wish I knew why that is. We get excited about a new step he's taken and it is so quick and big that it seems he's been there all the time, maybe waiting on us.  But then he'll slow down, even back off.  It is clear that stimulation makes a huge difference.  Stimulation being anything that stimulates the senses. 

We have so many things we're trying to do, so much that we want to do but each has it's own road-block.  With improving therapy, converting the van continues at the top of the list now, but the dollars are still a roadblock.  I'm looking at ways to finance this still.

Over the weekend my sister came over and spent some time with Michael and with Addison - Here's a good example of the love and support  we receive.  Looking at the pictures, it seems that they all had a really good evening. Thanks, Sally and Mark for being there!!  This is a good picture of Addison and Michael.

About the van...

So, in my complaining about the cost of converting a van for Michael I didn't give any good information about it. The conversion is about 16,000 and it costs about 1400 to get the van back and forth, where the work will be done. The conversion we're looking at it is rear-entry the company is Freedom Motors in Michigan.  There are a few different ways to convert vans and companies that do the converting.   I like this one cause it keeps the frame intact and the wheelchair stays in a channel, which will help keep it in place more.  With this Michael can also sit facing forward and be up where everyone else is.  Some of the conversions for minivans make it difficult or impossible for the wheelchair to face forward, I don't like that for many reasons. One being, Michael never liked sitting sideways when riding in any vehicle.

With a converted van we will be able to travel more safely, I could get tie-downs  for the chair now but those cost a few hundred dollars alone.  Michael will be more comfortable, in his chair that can recline to different settings for him.  You and I can simply scoot side to side to get more comfortable when we're sitting, Michael can't do that.  It will also be a big difference in time.  Right now it takes a lot of time and effort to get him to the van, move him from the chair to the seat in the van, get him settled and positioned in the seat, then put the chair in the back, get it secured as well as possible.  Then  when we get somewhere, the process is repeated, as it is when we start back home and when we get home.  If the weather is too cold, hot or rainy then he has to sit there in it while we're doing all this.  As well, right now, if I'm not around then he can't go.  Neither Christine nor Connie could take him anywhere if I'm not there.  This will help him to get out more often, also be more comfortable and safe in process. 

What do you think?

Kirk

Little More Therapy

I heard from Rehab Institute today, guess we have a little bit more therapy coming.  Michael has made some real improvements on holding his head up, pretty impressive.  I had him sitting up, very straight, in  his chair, no strap, not even the thing to rest his head on and he was holding his head really good.  As he tired out I put the piece up to keep him from pushing to the right, that helped him enough and he never needed the head-band strap. This is pretty good.

I would like to see him get more help with communicating.  He could do so much more for himself if he could communicate better.

We, all of us who care for him, are going to have to communicate better and be more consistent.  And, more importantly, I need to realize more and more and more that success and therapy together are in God's hands.  The definition of success is ultimately his, not mine.

Thanks for stopping by -

Kirk

Junk

I guess "Stuff" is better than "Junk".  I don't know, I also guess I'm venting a little bit tonight.  Michael is hurting right now, something has him in so much pain that he's tight all over, but, of course I don't know what it is. So, I don't know what to do.  It's not all that unusual.  No matter what one's outlook is on life, what one's relationship with God is, it still is not good to know that your son is suffering and to know that you can't do anything about it.

So, my second thing of junk is the van.  One of these days I'll be praising God for the van conversion and all that it will bring to Michael.  But, right now I'm just sulking at the cost - 16,000 dollars.  That is a lot of money, for us it means a few years of payments.  I don't really feel I have a choice, we need it, Michael is stuck at home too much, doesn't get out, to church or just out enough.  It's pretty dangerous driving around with the wheelchair in the back, it wouldn't take much of a collision or even an fast stop or sharp turn to put everyone in the van in danger.  But, now I'm sulking at the cost.  Sulk sulk.

There is a lot I don't know and a lot I don't like.  I do know my LORD, my savior is here with us and none of this junk  :) is beyond his reach.

Tomorrow I hear from therapy about the plan from here.

Kirk

thanks for stopping by.

Updates

My friends Steve and Brandie are home and recovering.  Both of them were hurt in a motorcycle accident, Brandie and Steve have a lot of fun together, maybe they'll be replacing "riding" with something else - but I'm not sure about that.  Both have to take it easy but they are recovering at home.

Garrett Bloom, the boy who was taken with a serious staph infection is also home.  I don't have the details, but I hear that Garrett is doing very well, he went home last week.

Thanks to God for hearing our prayer and allowing recovery.

Michael is continuing with therapy.  The therapists at Rehab Institute are awesome caring people, I'm looking forward to some real progress, God willing, for Michael.

Thanks for stopping by,

Kirk

Solitude Weekend

I did something different this weekend.  I went, with a few friends from church, to a monastery to get some alone time with God. First I have to say thanks to Connie for offering to and taking care of Michael so that I was able to do this.  It was good!  This isn't a new idea, but it's sure been awhile since I've done this. So, 9 of us took a 2 hour drive north, we spent some time talking together and getting to know each other, then we got up early Saturday morning, we got together as a group for some direction from Dan our Pastor on the process of solitude, then spent the day in quiet alone time talking to God, listening to him.  We came back together to share what happened.

My time was spent considering some things about God, and considering some things about Michael.  I read a book, suggested by Dan, called Adam. Adam is a man born with disabilities that never allowed him to learn to talk and prevented him from doing many things we think of as "normal".  Obviously there are many similarities to Michael, but differences also.  The thing that got me in this book is the idea that Adam was just fine the way he is - he didn't need to be "healed".  Now, I don't know if this is something that God is speaking to me or not, if it is something that God wants me to be more submissive to or not - it is a road that I am starting down though.  No, this doesn't mean that I am "settling" or that "I've given up" or as some might say "I've faced reality"  it simply means that I'm listening to God and submitting myself to him.  I think this is a principle we all must learn: We bring our requests to God and leave them there, with emphasis on leaving them there. Maybe leaving them there is really more of what the prayer is all about.  He commands that we bring them to him, he also commands our submission to him. 

In this thing Michael is doing quite well. For some time Michael has been more content with things than I have been.

Along with the time alone with God, all of us experienced the sight of some ominous windmills.  These were huge, everyone has something to say about them.  I'm not sure what the deal is there, is it that they are so white or is it that they are so big?  I don't know but it was interesting watching them and interesting hearing the comments that everyone had about them.  So thanks to all for the great weekend!  Thanks to Jesus Christ for allowing it, for being there with me, thanks to Connie for taking over with Michael - I think he enjoyed that too, and thanks to the group that shared the time and the stories with me.

Kirk

Keeping on...

As I said in the last post - here we go, well we're goin!

Michael's first couple days at therapy were good.  The Rehab Center seems great, Therapist seem great, I think this will be really good for him.  As I've said to Michael more than once, it's up to him to get the real results.  In thinking about this I realize many, if not all of us, struggle with the same things he is - the prize or reward is maybe a little more important for Michael. 

Here's what I'm saying...  Have you tried to lose weight recently?  Have you tried at least one method and not made it past the 2nd or 3rd day?  Think about this! I can say for myself, especially in the last few years where this thing of losing weight has become a challenge, that I really, genuinely want to be more healthy. I feel I NEED to, I'm tired and even disgusted with myself for the shape I'm in and even more for the fact that I won't or can't stick with it.  It's not that I can't do this, I have no medical condition preventing me, I just don't.  Well I think, for Michael it is much the same, with the exception that he does have some medical conditions that make his quest more difficult.  I imagine, just as I do, there are times when he is set on doing whatever it takes.  Then I imagine, just as it is with me, there are times when he just doesn't want to mess with it.  Again, I must state that these latter times with him are, I believe, much more difficult. For me it is being lazy or wanting to taste some food, for him it is complete frustration cause he has to think hard and push hard just to move his hand from his side to the computer in-front of him.   Here's how it was described to me:

When you or I want to reach out and touch a specific point in front of us, we simply do it.  When Michael wants to reach out and touch, say the area of his computer that says "Yes".  He has to think of every step, one at a time and remember every step.  He has to think of lifting his elbow, then straightening his arm, then lifting his hand toward - (at this point he has to remember what he was going to reach for in the first place) then he has to process, what does "yes" look like, how far to extend his finger, he has to deal with the pain as well as the frustration in all of this. When Michael feels - I don't want to do this right now - it's a different thing than when I feel I want some chips and cheese.

When I see this in him, for a second or 2 I think of all the other people there are in this world with similar issues that we normally take for granted.  Instead of simply asking God to 'take care of them' we need to do something ourselves.  We should genuinely "agree" with God in this and move our butts in that agreement. I confess that I'm as less likely as anyone reading this to move.

I ask God to show me his point of view and help me move toward it.

Thanks for stopping by,

Kirk

Just Like Kindergarten

I have always enjoyed the memory of Michael's first day of Kindergarten. Christine "did it up" well with celebrating, we had a banner up that said something like congratulations, I think there were balloons involved.   Michael made the day and the memory when ran in to the driveway grinning from ear to ear and announced, in a voice full of fun, "I LIKE school".  I think it was the last time he felt that way.  The day was fun and somewhat scary with all the worry we have as parents and watching our kids leave the nest for the first time.  Well yesterday. our experience with therapy was similar.  Christine was very nervous about the ride to and from the Rehabilitation Institute. There was worry and excitement about how he would take the process, and how the therapist would take to him.  At the end of the day Michael was exhausted, it was obvious, but he confirmed with a thumbs up and with smiles that he had fun.  If I could hear the actual words from him, well - wow, that's an awesome thought - that would be a huge point of celebration. The first day went well, the therapist and staff at the Rehab Institute are all great, they are all excited about the opportunities they see for Michael. Every person we met impressed on me, "how good Michael looks", how well he's been cared for, how healthy he's been and how fortunate we are.

I realize that I don't thank people enough and probably don't really appreciate things enough, I know I don't say it as I should. I'm thankful for a country that gives me the support that I have from insurance to Medicaid and nurses, for support from friends and family and church we have been so fortunate in all of this.  I thank God for working in all these people and circumstances to take care of Michael.

Now the work begins.  I am hopeful that Michael will be motivated through the initial hard point, I believe once he's past that he'll amaze everyone.  I appreciate your prayers and trusting God with me in this. I'm hopeful for increasing his use of his computer to communicate, progress in using his mouth and voice to communicate, for progress with control and comfort for all his muscles.  In the end the goal is to  help Michael decide for himself and communicate those decisions - Independence.

Here we go....

Fun Day for Michael

Here is a post from Christine. There are so many simple things that we take for granted and in that don't realize that other people can NOT do that.

Yesterday Michael had school on the deck outside.  He loves being outside.

He also had a big adventure.  His nurse, Deborah, took him for a walk... nothing unusual about that... but the walk was about 2 hours!  After walking around the block, they went over the the strip mall - by Sheridan's.  Deborah was explaining to Michael what each of the stores were and he decided he wanted to go into Soccer Zone.

They were walking around looking at the shirts and all the stuff... feeling the different textures... the staff was very interested in how Deborah and Michael interacted and how he communicated with her.  They asked if they could give him a ball with their logo on it... Sure... so, Deborah said "Michael, she wants to give you a ball.  Reach out and take it."  Michael took a moment and reached out to take the ball.. with a big grin.

He was still grinning - and holding the ball - when I got home.

I love that grin.

Prayer for some Friends

I just got information that some friends of mine, Brandie and Steve Olson, were injured in a motorcycle accident last night.  I have been told that their injuries are not life threatening. Brandie injured her spleen, Steve has a broken scapula and a couple ribs. Steve now has a chest tube in to fix a collapsed lung.  In a world where it seems difficult to find someone who truly follows the principles of Christ, Brandie and Steve are very good examples of what the label "Christian" really means. As parents, as a couple and as individuals they are Christ Followers and they are real.

Lot's I'm thankful for

There has been a lot of "thank you God" stuff going on today.

First I got an email from my mom, she feel and hurt her ribs, finally she found out that nothing is broken or fractured.  I'm sure this news doesn't make it hurt any less but I am still thankful for it. Please pray for my mom's complete healing and for her comfort between here and there.

Next - this is some awesome news!  Christine got a call from Diane, Michael's case worker, with news that nursing will be covered for his therapy.  Christine commented that I didn't seem that excited - sorry, I wasn't all that surprised but I am excited and very thankful.  God has been graceful to us, to Michael some more and I thank him for that!

There are still some things to work out in this. Michael's first session will be an evaluation, he needs to show more and more that he is willing to put the effort into his progress.  Now I don't say that with the any thought that Michael is slacking off - If anyone has a reason to not put effort into life  he does. The thing is, none of us have that reason, especially when our LORD our God and King IS putting effort into our life.

Thanks again for checking in on us - feel free - please do let me know that you are.  Leave us a note.

The Latest on Garrett - More Good Stuff!

Dear Friends-

What a wild and exciting week it has been on the intensive care unit! Garrett has had a great week and has been making progress each day.

His lungs are continuing to improve and he is taking increasingly long breaks from using the ventilator. Yesterday he went two hours breathing on his own, without any ventilator support. Although this tires him out somewhat, he continues to strengthen his chest muscles and lungs. Each day the doctor sets a new goal regarding the time off the ventilator and Garrett is easily meeting that goal each day. The last chest tube was removed on Monday and his chest scans look good. His pain medications/sedatives have gone from five in the beginning to two as of yesterday. He still experiences withdrawal symptoms such as fevers and nausea, but these symptoms now seem milder than previous withdrawal symptoms. His doctors continue to whittle down his pain medications each day.

Garrett has now been assigned a rehabilitation team and starting last Monday they began to "give him the business". He has occupational therapists, speech therapists, and physical therapists. He also has a psychologist and pain management professional included in his team. Speech therapy has been working with Garrett to help him speak clearly while his trach is in place. He is speaking words and sentences that can be understood, but has the energy to speak only a few words at a time. Occupational therapy is working with him on fine motor control and introducing him to different liquids and food he can begin to eat orally. Yesterday he had WInstead's chocolate shake (courtesy of friend Betsy Stephens) and a few frosted flakes that he fed to himself. Today he will attempt Cheetos.  Garrett's physical therapist has him sitting on the side of the bed and then sitting up in a chair for a few hours each day. Garrett went on his first road trip and was able to leave his room on the ICU to take a short trip down to the nurse's station and back in a wheelchair. His nurses were crying and hugging me. I was crying and the staff kept cheering Garrett as he went down the hall. It was pretty awesome.

Now that Garrett is more awake and alert we have been sharing the fantastic cards and greetings that have been sent to him. The cards brings out small smiles and a raised eye brow at times.He looks forward to seeing his brothers and it is heart warming to see the boys all together in Garrett's room. It is also fun to see small bits of his personality coming out.

Garrett now understands that he has been in the hospital for over a month and is starting to understand pieces of what he has been through. We are still trying to understand what we have been through and where we are going next. It is very difficult to estimate when Garrett will be strong enough to leave the hospital and we are just taking each day as it is and celebrating the success of that day.

Thank you again for the support and love you have sent us. 

Dawn Bloom

Hopeful for Therapy

Okay we're going after therapy for Michael again. 

We've been cautions, hesitant about going after therapy because we've been told there is a problem with nursing care while he is at therapy.  As I've said before, we've received most excellent care and support from insurance and from Medicaid - I am extremely thankful for that.  Still, I believe it is also extremely important for Michael to have regular therapy, his doctor has confirmed this over and over again.  We are losing ground!

In a couple weeks Michael is going to go to Rehab Institute here in KC for initial visit, evaluation - with the plan and hope of continuing his therapy 2 to 3 times a week.  Dr. Rupright has prescribed this, all who are working to help him progress agree he will benefit from it and will most surely suffer without it.  So, we're going to go for it and hope and trust God that this will work out, please pray and trust him with me  on this.

I've recently been talking a lot about this thing - this trusting God thing.  What do we trust him for, what can we trust him for?  If we are "trusting him" what do we do while we're trusting him.  Last week, I was heading out to the store; as I turned the corner away from the house, I thought "did I shut the garage door?".  So, I think next can I pray and ask God to keep my house save and warm :) and be sure my garage door is shut.  ----- This isn't trusting God - this is laziness, this is being irresponsible.  if it isn't important enough to me to turn around and make sure the door is shut, the why am I putting it off on my LORD.  I think at least once I've had a discussion about this kind of thing with Michael and with Addison.  Something like - "your mom isn't your servant, do it yourself".  My parents said this to me a few times, I think most of us have said this to our kids a few times.  Do I love my son?  Do I love Addison?  Of course!! I care about them, want them to be happy in every way.  This is pretty simple - just because we ask and trust God for something doesn't mean we give up our responsibility - doesn't work that way.

So, please trust God with me, with us as we try to take a step in helping Michael progress and get better, our step is trusting God as well as doing all we can do, then we leave what is his to him.

Thanks for dropping by!

Kirk

Prayer Request - Garrett Bloom

I know there are a few people praying for Garrett Bloom, the young mad who is in the hospital with the dangerous Staph infection.  I just received a little info on Garrett - I was told they've put in a Tracheostomy but he's off the respirator. Being OFF the respirator with a Trach is a very good thing, it is often very difficult to get off the respirator.  I remember waiting for weeks for Michael to be off the respirator, it seemed every time they thought they would try to take him off of it, something - like a staph infection - would push it back.

I appreciate your continuing prayer for Garrett. As well I appreciate your prayers for my son Michael and our family.  We’ve been extremely thankful at how healthy Michael has been, as well we’ve been fortunate to have amazing nurses and care for him. It seems you hear so much bad about our country’s healthcare, insurance etc, well our story is quite different. We have been truly taken care of in many ways. Michael is doing well, I’ve given him back his Yes, No buttons, positioning them by his thumb – pushing his thumb up he can press the Yes button and pushing his thumb down he can press the no button. He’s doing great with them - It’s been a long time since I’ve had to tell Michael to be quiet. - We are still working on the Mercury, Michael’s computer / communication device but the Yes / No buttons are helping him a lot- they’re just right there. The buttons are also helping him do better with the Mercury. Michael’s smiles are inspirational, the fact that he does smile, that he feels there is something to smile about is just awesome.  I expect some time he’ll be the one writing you here.Thanks for your care and for your prayer!Kirk

Merry Christmas from Us :)

http://www.elfyourself.com/?id=1164321695

November 16, 2007

just want to say hi

Hi

Still here

Psalm 51:15

Great Attitude

Michael's Quest

2 years ago today!.

I just shake my head in wonder.  This wasn’t an unusual conversation with Michael.  Michael most always seems and indicates that he’s okay, he’s expecting God to heal him, he’s waiting on that and he’s patient. He’s more patient than I am most of the time.  I’m pretty proud of him, especially when you stop and think that at one point he wasn’t patient, he was completely impatient and ready to quit this life.  God is awesome.  Yeah if I had the chance to change everything I admit I would, that’s probably why I don’t have the chance.  God is God, I don’t expect to be able to understand him or his ways, to really know what he values.  I look for more, I want to know him more but mostly I’m just in awe of how he is God.  I thank him for all he’s been!  I pray that at some point Michael will be able to speak his story to you, to me, to others and I pray that through his story people will come to decide to follow Jesus.

A sunday in July

How would you like to say "Yes" and "No"

If someone asked you that question, what would your answer be?  It would probably be similar to what Michael's answer was, accept he couldn't say it very well.  His response was something like MMMMMMMmmmmmmm.  I'm not sure if that is the correct spelling or not. He wants to say it with his voice!!  Michael doesn't put a lot of effort into any other communication, thumbs up and down, blinking, even his computer, his concentration is talking with his voice and he's not motivated for any other communication. Pray for us on this one! So I told him, if you can find a difference between how you "say" yes and no, then MMMMMmmm would be a great.  He proceeded to make different sounds - I imagine MMMMMmmmm to most would be described as a moan.  We came to the conclusion at that time that a long moan could be for yes and a short one could be for no.  Seems pretty simple for you and I, but it is extremely difficult and often very frustrating for Michael.  Today that is what he's going to be working on - I hope this will carry into tomorrow.

Michael is doing good. 

Christine is set to move this weekend, she's excited but more nervous about everything working out exactly as she expects it to.  whispering: don't worry, it's  probably not going to.

Thanks for checking in!

July

Christine has sold her condo and purchased a ranch-style home for her and Michael - here is what she sent me on it...

The house is in Lee's Summit, about 1 mile from of LSNorth.

The house has 2 bedrooms - Michael will have the master, which is about 12 x 16.  That's enough room for all his stuff and equipment.

The house is on the "correct" side of the street (east) - yes, there is one!  That means that the backyard is in the shade in the summer and the driveway is in the sun in the winter (less shoveling).  The house has a newer deck in the back and comes complete with a RAMP.  This is an extra I wasn't expecting to find.  Having the ramp in the back of the house was something I wanted for security reasons.  A ramp in the front simply advertises a handicapped individual lives there.  This is safer since it's just me and My Michael at night.

Also, Michael has been getting in the pool every Monday for a while now.  I am so thankful to everyone involved and all effort put forth for him on this.  Thank you so much - Deborah, Beth and also the driver.  I hear great compliments on how smooth the bus driver makes the ride to and from swimming! Thank you very much.  Today I went to watch and it was great.  Michael is very relaxed and he is able to move his legs and arms much easier in the water then he could do out of the water. 

Life goes on and on and on and on

Things have been pretty smooth for Michael the last few weeks, no problems - thank you God!  He will have a nursing change, at least for a month or so, and he doesn't like that very much.  The nurse has just come on the case seems very nice, very attentive to him and to learning how to work with him best. Again, we are thankful! 

Christine sent me some news on Mathew, Michael's room mate at Rusk - it isn't the best news and it reminds me to be thankful.  It is very easy to get caught up in how hard this is, before I take a step in that direction I must aknowledge that things could be much worse.  Please pray for Mathew and his family, they're going through some rough times right now.  Here is the update:

This has been a rough week for Matthew. On Monday his stitches from the surgery to replace the catheter to the baclofin pump were removed. Unfortunately things didn't go as smoothly as expected. Soon after this he began to have discharge from the incision area and puss was gathering. Matthew also had a fever. He was taken to the emergency room, sent home and then went to the hospital in Columbia the next day. He was taken home again and during the night the discharge increased dramatically and the incision opened so much that his parents could see through to the baclofin pump inside Matthew.

Matthew was admitted to University Hospital in Columbia and they began weaning Matthew off the medicine administered through the baclofin pump in preparation for removing the pump altogether. This was very rough for Matthew. The spasms and pain began throughout all his muscles. The surgery was Friday morning and he came through the surgery fine. The tough part is the withdrawal symptoms from the baclofin medicine. Matthew is on pain medication, but he is still very uncomfortable.

The doctors are estimating that they can put the baclofin pump back in Matthew's body in two weeks or so. The question will be where to put it. Matthew doesn't have much body fat so they had to insert the pump in muscle tissue previously. Please keep Matthew in your prayers as he recovers from surgery and has to deal with muscles spasms and tone that causes pain for Matthew. Also keep Matthew's parents in your prayers as they stay by his side and care for him - comforting him through the pain and discomfort.

Prayer Request

This is kind of an update to my last post.  It appears that one of Michael's nurses will "no longer be on the case" - so we are told from the nursing provider.  I don't know why this is, I don't know if she decided to do something else of if Carestaff decided she would do something else.  Either way we will miss Jesse a lot!!! She has been great with Michael, great for Michael!  I pray Jesse will do well and God will bless her in whatever she does! 

We have been so fortunate with the care Michael has received!!  Carestaff has done an awesome job! “Care” probably isn’t the right word here either.  A nurse for Michael also needs to be a therapist to work him throughout the day. As well she or he needs to be a pretty good conversationalist, sometimes it is difficult keeping a conversation going with someone who doesn’t talk back.  Yeah I know, there are some who would be perfect at this part.  J  These nurses have done so well, listening to the doctors, PTs, OTs, Speech Therapists then working with Michael in the ways that those professionals have prescribed. Again, I can’t say it enough, we have been very fortunate!

Deborah is awesome with him, I am so very thankful for her, she also is great with Michael and for him. She loves and cares for him, she's great to us as a family.  I really appreciate Deborah, I can rest in assurance that Michael will be well cared for and "worked" in every way. I realize this isn’t always an easy job.  There are times when it is pretty frustrating, times when it is exhausting.  Michael doesn’t try to make it difficult but there are times when his spacticity is so much that he is difficult to care for.

So now we’re faced with finding someone new.  Please pray that God will direct the right person for the job to Michael, pray that Michael will be receptive to all this and find the good in it.

Thanks!

Hey...

Just saying a quick hey. If you were looking for us at the Amy Thompson run, we didn't make it.  I've been hit pretty hard with something, a sinus infection, flu whatever it is I wasn't able to get up and get going for the run, and I am trying to stay away from Michael so he doesn't get this.  We don't need him in the hospital for another 2 weeks!

I appreciate your prayers for us, please add this health thing for me and Connie, it makes taking care of Michael difficult - it's hard to take care of him when you don't want to touch him or breath around him.  We've also had some difficulty with nursing recently, I appreciate my employer's patience, I konw Christine would say the same.  So, please include these things in your prayers!!  I trust God will work all these things as he sees fit.

Thanks,  Kirk

Swimming will continue through the summer!!

We got some good news this morning, Michael will be able to continue the swimming program through the summer.  !!!  Thanks to Beth for pushing for this!  The main goal of getting him in the water is to help his muscles relax, in Michael’s case there is even more benefit.  He has always been very comfortable in the water, maybe more so than out of the water   J  he really looks forward to this.  I haven’t been able to get there to see him swimming yet, I hope to get there and get some pictures to post.  I’m told that there are weights for his ankles these hold his feet down and allow him to stand in the water.  Cooool!  Again, thanks to Deborah, Beth – everyone involved in this – thank you thank you!

Update on Amy Thompson run

 Something changed on the site -- here are the instructions for signing up with / for Michael.

1. www. amythompsonrun.org

2. click on Raise Funds

3. click on Register now (even though you are not registering)

4. on the right side, look for "make a donation" - it's in small print

5. Do a search for CHRISTINE FOUTTS and proceed as directed.

The Brain Injury Association does a lot to help those with brain injuries and those to care for people with brain injuries.  One very significant thing is lobbying for support for adults with brain injuries - currently in Missouri the support is limited.  Along with that this is a fun day, a good day to come say Hi to Michael - he loves that!  I still believe he misses seeing friends as much as he misses hearing himself talk.

Soon I will post information about where we'll be meeting the day of the race - check back.  Thanks!!

It is well with my soul

I had just pasted the lyrics to a song that described how I was feeling, then I read Sally's comment.  The song that she refrerred us to is much deeper, and much more real. I think somewhere on this site is a comment with this song's lyrics and history but it's timely and worth repeating.

The author of this song is Horatio Stafford.  Do a google on him. As I remember, he lost his baby son to Scarlett Fever somewhere around 1870, just a short time later, he lost everything he owned in the Chicago Fire of 1871.  After the fire he decided to take his family to Europe but at the last minute he himself didn’t make it on the ship, although his wife and 4 daughters did.  The ship carrying his family collided with another and sank immediately, his wife was saved but all 4 of his daughters died. Horatio was on his way to meet his wife, while sailing over the place where their ship sank he wrote these words.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

A fish returns to the water

Michael went swimming today!  Michael’s nurse and Physical Therapist worked together to get him into a pool.  He’ll be able to go to this Aquatics session on a regular basis and it sounds really good for him. The pool has a good setup to keep him safe – I have been pretty nervous not knowing how he would do or what would happen if there was a slip and he went underwater.  The pool has a chair lift to get him in the water, then support to keep him above the water.  I’m told they also have weights for his legs, this way he’ll be able to walk in the water -  AWESOME!!  In the water he will need much less control and strength to support and move himself.  Aside from all of this, I know Michael and how much he loves being in the water, he has always been a fish at  heart.

A big thanks to everyone involved in this process, I know there was a lot of effort and time involved in making this happen.  Thank you!

I think too much :)

I’ve been asked to write more so, I guess I will.  Some times I feel like I just want to, like I need to just be quiet.

Michael has been tight again, a lot, I’m not sure why.  The baclofen pump is working but he is tense, something is bothering him.  I’m frustrated with not knowing what to do – a very familiar feeling.  I know most parents feel that way.  I rest in Prov 3:5-7 but I know that doesn’t mean that “things” will turn out as I want them to, I must daily give it up to God. I’m sure you can relate.  There are lots of times when we just can’t do anything, or we have no clue what to do, in these times trusting God is a little easier, since we can’t do anything.  This doesn’t remove any responsibility that I have, it just pulls him on it and when he is in on it then he is the one leading.

I've been spending a lot of time building Displays for Michael's computer, it reminds me of earlier computer days.  The displays are menus, pages made up of pictures and text to select from.  Each selection either launches a program, plays a sound or takes him to another display.  I've made a page for a simple yes and no, with thumbs-up and thumbs-down, an "I feel" page, this one is of pictures of faces with emotional looks - happy, sad, disappointed, excited, etc.  There are others, there are games, there are menus that play songs and show picture slide shows - it's really cool for him.

Monday April 23, 2007

Michael received the computer we’ve been waiting on – The Mercury – with time this will go a long way to help him communicate.  The system is pc based, with touch screen, the software includes thousands of symbols to use in building communication screens.  We can use text, icon/pictures that come with the system or pictures of our own.  The system will read the text that is displayed or play a pre-selected sound file.  So, I have one screen that has YES / NO and More, when he touches More it takes him to a screen that has some phrases, then I added a “I feel…” screen for him in the same area.  Then there are screens for games and email and a calendar.  This is just what I’ve set up to this point, there are countless possibilities!   It’s my hope that he’ll be able to jump right in with the Yes / No part and games, pictures, music (mp3 files), then as he gets more comfortable I hope he’ll be able to use it to say what he wants when he wants – we just have to take it really slow.  So, it all looks great – a huge thanks to the Dream Factory for their help.  Thank you!  The Dream Factory is an awesome organization.

So, as usual the good news is mixed with the bad.  Michael has some kind of skin thing going on, a rash and it’s making him very uncomfortable and tense, which makes it a lot harder for him to get going on the computer – The Mercury.

Thanks for checking in…

Inside-out

Amy Thompson Run

Here is a post from Christine... 

Michael’s family and friends will be participating in the Amy Thompson Run to Daylight event.  This is the main fundraiser for the Brain Injury Association of Greater Kansas City.

If you would like to make a donation, please take one of these flyers.  Donation information is on the back. Thank you for your support of the Brain Injury Association of Kansas and Greater Kansas City

To make a donation to the Brain Injury Association of Kansas and Greater Kansas City (BIAKS):

1. Make check payable and mail to:
   Brain Injury Association or B I A
   P.O. Box 413072
   Kansas City, MO 64141-3072

Please mark your check for “Mike’s Mom” so the donation is credited to my fund-raising goal.

Make a donation online (secure)

1. Go to http://www.amythompsonrun.org/ website
2. On the right side, click on “Make a donation”
3. Click on the “Sponsor Participant Online” link
4. Enter the following information:
5. First name – Christine
6. Last name – Foutts
7. State – MO
8. Click on Search; then on my name

When my page comes up, click on “make donation” and follow instructions.
If you prefer, you may give your donation directly to me and I will make sure it is mailed in and credited to my goal.
Thank you for your support.

Dream Factory House Tour (Home Tour is closed)

If you haven't heard about it, let me tell you about this..  There is a house in Lee's Summit, a big 1.8 million dollar house, that is available to tour.  The proceeds from these tours goes to support the Dream Factory.  If you have the time, go out and take the tour of this house - in appreciation of their help for Michael.   The house is out by Lake Jacomo - it's on Prarie Lea lake from what I undertsand. The address is 2355 Lake Breeze Point, it should be a fun tour anyway.  Take Colbern east to Blackwell, go south on Blackwell to Woodland Shores, to west on Woodland Shores to Lake Breeze Point. If you haven't been out there in awhile you'll be amazed at how much has changed around Prarie Lea.   I remember a 'Senior Skip Day' picnic there almost 30 years ago, Prarie Lea is a quite different but in some ways still the same.

It's not a big thing but it is a way that we can say thank you to them.  Here's a link on the house and the tour.

http://www.kcdream.org/html/news/?contentID=1200

We're Home!

We got home Saturday, he’s still has some issues with the pneumonia but he’s handling it all well.  The Baclofen pump is making a difference, helping him a lot. He does have some adjusting to do with changing back to food /  formula he gets at home.

I don’t have a time frame the communication device yet, but we’re very anxious to get started with it.

That’s it for now…

Today this week this year

So Michael is still doing good.  They say his pneumonia is fine, they aren't worried about it, but there is still fluid around his lungs.  This isn't necessarily a bad thing either but they have to keep an eye on it, make sure it doesn't get too much, make sure it isn't  infected.  So far we're good.  There is a possibility that his chest tube needs to b in a little different location so it can remove more fluid - but that isn't  likely.   The plan is to take the tube out today, then he could come home tomorrow but that plan might be changed.  It could be that they'll move the tube to a little different location in which case they would take it out tomorrow and he could go home Saturday.  Of course there is always the possibility that these possibilities are not possible.  Welcome to Michael's world, all we  know for sure is what is going on right now. Right now, he's comfortable, all vitals are good. 

Therapists are taking the opportunity to help us get a plan helping his lower body.  I think we'll come home with some more help in that area.  With the Baclofen pump working we should be able to make progress that we couldn't before.

When  this is all done, when we finally do get home, we will have accomplished the main goals.  His baclofen pump seems to be at just the right level, we have a plan for getting his knee in better shape.  Then we have a huge help with the Mercury.  This is going to be awesome!!  As usual the path we have taken is much more indirect that I expected but we are doing all we expected to do and more.

Thanks for you prayers and support!
 

Hoping for Tuesday

Michael is doing well, (I say that a lot) at least now we know what is going on and the treatment for it is right.  I am thankful and appreciative for the doctors and nurses that are working with him.  In the past we’ve had some issues with University Hospital, whatever that might have been then, I don’t have any now – he is getting excellent care.  

The care of people can be a pretty tough job.  Most of us make mistakes once in awhile at work, then we have to fix them or maybe we don’t fix them.  When someone in the patient care area makes a mistake there is often a lot more to do to fix it, family members, patients become an issue to deal with. I also imagine there are some family members that are issues to deal with even when mistakes aren’t made.  As I think of it, teachers have some of the same types of things to deal with. So here’s to all of those who make earn their living caring for people and a special thanks to those who are helping my son!

He misses friends!

I hope to bring him home on Tuesday.

A couple more days

Got mostly good news today.  Michael's oxygenation level is back to normal, he's had no fever for a couple days now, all seems great.  But - yeah I have my but-face on - but the fluid around his lungs increased some after they drained it off so they want to put a tube in to drain it off and keep it off.  I was really disappointed to hear this, I was really hoping he could come home tomorrow.  Christine and I have both missed a lot of work this year, I hope and pray that my employer continues to be understanding and that I find time and ways to make this up.  I was hoping we could both be back and have a normal week. So, Michael will be here for at least a couple more days. Well there is still a possibility that they won't put the tube in but they expect to find it necessary in the morning.

Still here - Friday March 23

Michael is doing good this morning. They opted not to drain the fluid but instead gave him some medication to reduce it, hopefully that will be all he needs.  They're going to test again this morning to see how it's doing.  Can't wait to get him home!

Hey if  you drop by to check on him here, leave him a comment and I'll read it to him.

Thanks for checking!

1 Jn 5:14-15

Columbia continues..

Michael has had another turn of events in the last couple days.  He's now at University Hospital in Columbia, he has pneumonia and some fluid around his lung. This morning they are going to drain the fluid from around his lung, then check it for infection.  He seems to be feeling better, his fever has dropped, he's resting - just watching tv.  I'm hoping that he'll be coming home tomorrow or Saturday.

There is that great info that I've mentioned with the Dream Factory, I want to get to Michael and talk to him face to face / thumb to thumb before I post all the details. 

Columbia Update

Michael’s stay in Columbia will be a little longer than we expected, yesterday the doctors at Rusk released him to University Hospital for some tests.  Michael's fever  has continued off and on for the last week, they’ve done all kinds of tests to find out what the problem is but everything had turned up negative, or inconclusive.  One of the doctors at Rusk said she would like him to go over to University Hospital, she said that they are much better equipped to find out exactly what’s going on and she is not comfortable simply prescribing antibiotics for a possible virus. 

I’m always a little anxious about him going to a regular hospital, he is usually a little bit ignored in those situations.   

Christine headed to Columbia last night to be with him, she called me this morning and said that he has a little pneumonia and they have started him on some antibiotics.  Guess that’s why Rusk wanted him to go there – the doctors at University Hospital did figure it out and very quickly.  I’m not sure how long he’ll be there but I’m anxious for him to come home now.

In the next day or so I’m going to post some information about the amazing  The Dream Factory and what they are offering to do for Michael – stay tuned. 

Lots of thanks - Awesome News!!

I have a huge thank you to give to The Dream Factory in Kansas City!!  The Dream Factory has offered to purchase a communication device for Michael.  You might have read about  this device, it’s called The Mercury from Assistive Technology. This is just amazing, awesome, wow news!!!  There are some great organizations around that have helping others as their mission, The Dream Factory is one of them.   Thank you, Thank you, Thank you!!!  I believe this will be a huge help for Michael, it will be help for him right now and it will help him to progress, this is a great learning tool as well as a great communication tool.  Awesome!  Thank you again!

The Mercury is basically a Tablet PC built for communication assistance.  Now I say “basically” because it is much more than that.  This device has a much longer battery life than your normal notebook or tablet type pc, it’s much more durable as well.  The Mercury has a mounting piece – kind of like a desk mounted picture frame - on the back of it that will allow Michael to set it on a tray in front of him, it is a full Windows XP pc so it can play cds, mp3, send email, do messenger etc.  I’ll be able to send Michael messenger messages during the day – that will be cool. It has USB ports do I’ll have to see, maybe I can hook a camera up to it and we can have some fun with that also.  Specifically for communicating, there is software on the device that will assist Michael in telling us how he feels, what he wants to do or listen to, what he’s thinking about etc.  There are games and learning software also to help stimulate his thinking process.  Addison can play games with him that will be great too.  We’ve used a few things like this to help Michael communicate, you might have heard about the fun with Yes / No buttons, we used a board that gave him 9 choices to answer questions, Deborah has started a notebook that contains pages with options to fit the choices he might have. These have all been good for him but this, well this is a computer and a cool computer.  If you know Michael you know that alone is something to perk his interest.  J    

It’s interesting how many times we’ve heard someone so impressed at what they see Michael do. Someone that only sees him from a distance might ask, “is Michael aware of you and his family?  Does he know what’s going on around him?” But, when you’re around him for awhile it’s clear that he is completely aware and usually he’s very intently listening to everything that’s said. I hear people say things like “Michael is so “in there” it’s great to see him communicate that.  He’s made us all laugh more than once when he has smiled at a comment someone makes.  You may have heard the story of Addison and the cat.  One day, a few people were over to see him, there is a small roar of conversation filling the room.  I looked over and Michael caught my eye with a smile, I stopped and looked around to see what he might be smiling about, it was only then after I listened in closely that I heard Addison – from the top of the steps clearly out of the conversation of the room – say ‘Mom, the Cat is staring at me”.  A couple minutes later – “Mom, make him quit!  Brutus is staring at me”.  I didn’t pick up on what she was saying till after Michael did, he thought it was pretty amusing.

So, again thank you so much to Kim and The Dream Factory!  Thank you!   Thanks also to Katie at Assistive Technology for all your help and for working with The Dream Factory.  This is a dream that is only just beginning, I believe your help and provision will continue to increase Michael’s dream.

The AutoAmbulator

You're heard me refer to the AutoAmbulater, here is some info on it. http://ruskrehab.com/AutoAmbulator.pdf  Unfortuneately Michael hasn't been able to get in this thing this time around.  This is a pretty awesome machine!  Mathew, Michael's roommate has been in the ambulator every day, today he stood up in the parellel bars.  Awesome Mathew!  Way to go!

Saturday

Michael is doing great.  He does have a fever, well he has it, then it goes away, then he has it again the next day. They've done a lot of tests to see what it might be and so far everything has come back inconclusive - so maybe he has a virus.  I don't think this is anything serious but then we don't know for sure what the problem is.

He just got out of the Standing Frame, he was in it for about 25 minutes and was ready for more.  He is slowly adjusting to the baclofen. As I've said before he has to learn to push through relaxed feeling.  Just a couple minutes ago he lifted his elbow up, that's the first time he's done that since the pump has been working.  His legs are relaxed - and straight, his arms are relaxed, he's not pulling to the right as he usually does.  He's also been doing good at moving his head to the left- using his magic finger.

Right now it looks like Tuesday or Wednesday to come home.

Thanks for coming by and thanks for your prayers!

Thursday March 15, 2007

Well this is a great weekend for a spring drive!  If you happen to be thinking of taking one, head down I-70 and say hi to Michael. 

 I just got off the phone with his Dr. at Rusk, they've found that he has a bladder infection, so he's going to be there through the weekend.  I'm hoping he's feeling okay and I'm told that he's doing good, just uncomfortable.  Maybe this will allow him to get some more therapy.  I know he is in good hands at Rusk.

Thanks for checking in!

News Flash Update….

I got a call this morning from Rusk to tell me not to come get Michael – his doctor is concerned about a fever and wants to check him out before releasing him.  So, now we’re set for tomorrow.  Unless I get another call.  I was told not to worry, he’s okay they just want to check some things.  This isn’t bad, he’ll get another day of therapy.  He hasn’t gotten to get in the Auto-ambulator so maybe he will get to do that today. 

More good news!  I got a call from Molly, most awesome therapist, she told me that someone is going to come tomorrow to test him out on a communication device and get him in line for getting a Mercury.  This is really good news.  At the same time, someone from a local organization called me yesterday wanting to do something for Michael and I suggested the Mercury to her.  So, I’ll just let both go on their way for now, if one  progresses faster then we’ll go with that one. 

Along with that, I am getting reports that he is doing very well.  Dr. Rupright is very pleased with the pump adjustment, therapist all say he is working hard and making progress.

Then I just got a call, letting me know that someone from the Rehab Institute here in KC wants to evaluate him for a day program.  Good stuff!

This is quite a change, it’s nice to be putting cheerful stuff here.

Thanks for checking in!!

Monday - Today, I think it's 2007

 I don't know what day it is any more even my computer is confused.

Michael has a couple more days at Rusk, they’ve made a few adjustments on his pump in effort to get him just right.   It was too high when I got their on Friday but the next adjustment got him a lot better.  It’s a give and take, if it’s too low then he is tight and has to fight the tone, if it’s too high then he is sleepy, lethargic and unresponsive.  I prefer a little tone over unresponsiveness.

Mathew, Michael’s roommate has a device called the Mercury, it’s basically a tablet pc with software for communicating.  The device has a touch screen so Mathew can just point and drag pictures with his finger to say what he wants to say.  The device also has some games and all kinds of things, it’s really cool!!  I’m hoping Michael can get one of these, since this is a computer he is  a little more interested in it than he has been in other “point to what you want to say” things we’ve used.  Mathew’s mom brought it over for Michael to try out, she opened a trivia game which had a few history questions – “who was the first president” “who discovered electricity” – questions like that.  The device displays the question and also reads it, then the possible answers pop up which are pictures and text.  To get the right answer you just point and touch the display.  Well, Michael got all the answers right, pretty cool!!   This seems to be just right for him!

We’re still planning on going to get him on Wednesday evening, when he gets home he’ll be able to work more effectively without having to fight the tenseness.    That will be a huge relief!

Thanks for stopping by!

Going Good at Rusk

Just talked to Everett and Denise, things are going well.  His tone (spasticity or tenseness) is better.  Molly said that he helped out but putting his foot on the floor when going from the bed to the wheelchair. I haven’t heard if he’s been in the Auto-ambulator yet.

Thanks for checking in!

Whatever Today is...

Yesterday morning I got an email from Michael’s doctor stating that Blue Cross denied his stay at Rusk again.  Grumble, grumble, grumble.

Then we hit the road, once again and headed for Columbia for his post-surgery checkup.  Everything checked out ok.  The Dr. who did the surgery  is an Orthopedic Surgeon so I asked him about Michael’s knee and he gave some good information. Dr. Farid said to page him when we were done with the checkup appt and he would meet me somewhere to evaluate and adjust his Baclofen Pump. – How many doctors would do this?? -  He adjusted the pump and set it to give Michael a bolus -  a burst shot to see how it’s working. 

Last night the Baclofen kicked in and it’s obvious that it’s working.  Whew!  This is a relief, a big relief.  This morning I could still see a difference, Michael is more relaxed all over. It’s a nice relief for him and it will make therapy easier, hopefully it will make it much more productive. It will be different for Michael.  When he is very tense, they call it “tone” or “spacticity”, when this is very high Michael can’t relax as you or I do so he has to guide the tone to do what he wants to do.  If he wants to move his arm, instead of pushing or pulling it he has to direct the push and pull that is always there.  When the Baclofen is working right he will have to do it completely different, he’ll have to learn to push through the relaxed feeling to do what he wants.  The best way I can relate to this is thinking of times when my arm “falls asleep”.  Not the, tingly feeling but that dead feeling where it feels very heavy, it takes a little push to be able to move it.  From what I understand, this is what Michael has to work with – when the pump is working right.

Oh, I left something out…  On the way back from Michael’s doctor called me and said that Blue Cross changed, they did approve a 7 day stay at Rusk.  Yahhooooo!!!  Thank you Lord!  This should be very good for Michael, he’ll get some great therapy, he should get the pump adjusted – just right, hopefully we’ll have some direction and progress on his knee and I’m sure he’ll be able to get in the Auto-ambulator – the walking machine.  I’ll try to get some pictures. The pain part is that I have another drive tomorrow morning to Columbia – on the road again. It’s well worth the return it brings for Michael! 

I appreciate, as always, your love and support, especially your prayers.

Never Give Up

Yesterday no nurse was available so I stayed home with Michael.  It was a good day and I’m pretty sure that the Baclofen Pump is working. I got to see him working with his Leasa, his teacher –she is just awesome with him!!  She had his hands laying on the laptray and asked him to slide each hand back and forth from the outside of the tray in to touch his stomach.  He did this with both hands – this is Huge!  He is getting more and more out of his left hand.  A few months ago he couldn’t do anything with it. He works so hard on it, he puts his whole body into moving that hand.  He also stretches it out completely now more often, he  stretches his arm and fingers completely out.  Leasa gave Michael homework, he was supposed to practice opening his mouth and pushing air through it. 

Can you imagine this, imagine how frustrating it would be to have to work hard, to put your entire body into doing something as simple as breathing through your mouth????? 

Well a lot of the time, Michael can’t do this, but he keeps trying.  All last night when I reminded him of his homework, he tightened up, he tried hard, his whole body got tense, but he couldn’t do it.  But, this morning I went in to hi to him, I was telling his nurse about yesterday. When I told her about his assignment, Michel opened his mouth and not only breathed out, he made a sound. Wow!!!!!!!!!  This is big!  He was proud of himself, he had a big smile on his face as if to say, see I can do that. 

He keeps on!!!  If you’ve been around here, then you know what got Michael in this condition.  It would seem that he was ready, willing, wanting to quit – to give up.  I can tell you with complete accuracy and confidence – This is not Michael now!!!  There is no “give up” in him.  On any given day  he has to fight harder than most of us have to do in a month or more and a lot of the time it is for very little gain.  I am very proud of Michael, of who he is and of his daily fight for life.

Still hopefull about Rusk

I've been emailing back and forth with Michael's doctor at Rusk and we're hopeful that he'll get another shot there.  Christine got some good information from the Insurance company - Michael's doctor was excited about it, so we're making another try.

 This morning we went to the Pain Management Center here in KC to get an adjustment on his Baclofen Pump, hopefully this will give him the relief and help that we've been looking for. He seems a little better tonight, nothing obvious though. I'm a little worried that something is still wrong with the catheter.

 Suzzane and Sandy, Hi!  It's nice to hear from you, hope things are going well, I'll send Michael the message.

Saturday February 24, 2007

I've been pretty disappointed with the results of our trip to Columbia.  I thought, I hoped that this time, just this time, maybe, things would all go the way I had hoped.  That didn’t happen at all.  Not only did Blue Cross say no to Michael getting a well needed and well deserved refresher rehab stay at Rusk but the Baclofen pump still isn’t doing what it is supposed to be doing.  He’s had this thing for over a year now and has yet to get any benefit from it.  Really the entire process of this Baclofen pump has been more than a total waste of time, it’s cost Michael a lot.  As a result of this thing he’s gotten blister on his heel that took 8 months, easily, to heal, we’ve had to go round and round with Insurance on covering his stay at Rusk after the pump was put in- and we have a pretty huge bill because of that.  Michael has missed a year’s worth of therapy because of the pump.  The whole reason for getting this thing was to give him better progress, to relieve his stress, his tension.  What a fiasco it’s been.  Maybe we need to get a prayer team around this pump and exorcize it.  – That last statement was a joke….  It has been a complete, literal pain in Michael’s side. 

But – enough of my whining! we are fighting on – and it does feel like fighting – for Michael to get some relief of tension and to get some Inpatient therapy.  We’ve made some good contacts this week and gotten some good ideas.  I’m going to get him to see someone locally to adjust the pump next week.  So that’s the update.

Jesse, one of Michael’s nurses, and I were talking about movies that Michael likes.  I was telling her that when he was little, he could be upstairs in his room and from the other side of the house, downstairs I could– from any place in the movie -  I could turn the volume up for just 2 seconds, then turn it back down and wait.  Within a couple more seconds Michael would be running down the stairs saying is Back to the Future on.  This is not  exaggeration, we did this a few times.  As Jesse and I were talking about Michael’s taste in movies she said, I tried to play Harry Potter for him, he said he didn’t want to watch it, when I kept going I think he got mad at me.  I had to laugh at that.  Yep, that’s Michael.  He has always had something about that movie that he didn’t like.  It was almost as bad as a Sony Play Station.  J    Michael’s quote “Nintendo rules, Play Stations are evil” 

Thanks for checking in, come back and see us again.

Blue Cross says NO

I'm not sure what happened or how it happened or what the reason is but Michael will not be able to go to Rusk as we thought.  I just received a call from Rusk and they told me that Blue Cross had denied his admission.  It's hard to take cause we were so sure, they were so sure - anyway that's the news.  Maybe some time later we can try again. 

 Right now Michael is laying in the bed next to me sleeping (we're in a LaQuinta Inn in Columbia). I hope sleeping is good for him, I hope his dreams are good.  I feel for Michael in all of this, he seems to take it all in stride. So, I am hopeful that MIchael's baclofen pump will be working and that will be nice for him.  I'm also hopeful that this trip is good for him, that the change of scenery even a different place to sleep is good.

Hopefully we'll no one at school and none of his nurses made any permanent plans and we'll be able to resume his home therapy on Monday.

I'm good, God has taken care of us all along and I trust in him.  A friend of mine at church reminded me of a verse in Job, ch15 v13 Though he slay me, will I trust him.  I don't understand it, but I trust him.

Good news!

It is nice to say that.

It seems we’ll be trekking back and forth to Columbia again for few weeks.  Christine talked to admissions at Rusk and they are expecting him Friday afternoon.    Thanks for your prayers on this and thanks to God for hearing them.  We still have some hoops to jump through….  Michael’s surgery is set for early Friday morning, pray that everything goes well in his surgery and that everything goes well after so that he gets to Rusk in time to be admitted.  Last time we did this there were multiple hang-ups between University Hospital and Rusk which left him in at University Hospital for a few days – which left him with a blister on his heel that stayed for 6 months or more.

There are a number of things coming together for Michael it seems right now.  His toe-nail is repaired and shouldn’t hinder his progress, if the Baclofen pump catheter is repaired he will have much less tenseness to fight through and the therapist at Rusk are just plain awesome.  All this will be great for him!!  I have to say that the care he’s received for the last year at home has been great too.  I’m pretty picky when it comes to this kind of thing, I’ve been told too picky more than once.  So when I say his care is great, it does mean something.  Deborah has been with us from the time he came back home and she has been so good for Michael, I thank God for Deborah and all she has been to him.  I’m very thankful that she plans on being with him when he comes back home again.  Jesse started caring for him a few months ago and she is awesome as well.  Both of these women have gone above and beyond in their care, they are nurses , therapists and loving friends all put together.  Both of them are demonstrate Christian qualities – the kind the Bible tells us to have, not the kind we hear about on TV.  I am very thankful for love and care Michael and our family has received from Deborah and Jesse.  Gail has also been great, she takes care of Michael on the weekends and again, she’s been just amazing.  Thanks to each of you!!  I’ll miss you for the next few weeks but look forward to seeing you again when he’s back. 

I can’t say thank you to anyone without including Leasa Coulter, his teacher from LSHS. Leasa is comforting and motivating to Michael, she has helped him come a long way. As well the therapists that have worked with him from LSHS, Carrie, Beth and Deanne have been great. They are all so very caring and also good at what they do.  They have really helped him.

Thank you to everyone!

Here we go...

The trip to Columbia was good, it seems every trip includes some kind of excitement.   Yesterday brought 2 changes, first we learned that Michael’s Baclofen pump is not working, he will need surgery to fix this.  Second, Dr. Rupright suggested that he come back to Rusk for  awhile.

So, right after Dr. Rupright saw Michael Carl from admissions came in to start the process of getting Michael back to Rusk for a little bit.  This is awesome, Michael seems very ready for it, he even said he wanted to.  We were told that it might be possible to get him there by next Monday.  Whew…  fast!  But, of course Blue Cross has to approve this.  At this point, Christine and I thought it might be too fast, we have a lot going on next week with attorneys and Social Security and Podiatrist appointments..  

Oh, I forgot to mention that piece.  Michael has an ingrown toenail, on Monday he is getting that fixed – ouch ouch ouch please pray for him….

So, back to the story.  Next week is busy, we decided to move the admission to Rusk – if Blue Cross approves it – to the following Monday, it would be the 26^th.  Pretty exciting stuff, great for Michael.  Out goes the admission guy, in comes Dr. Farid, Michael’s physiologist. After asking us how things are going, he suggests that we check and be sure that the Baclofen pump is actually getting Baclofen to Michael’s spinal cord. The result of the test, nope it’s not.  Christine starts firing away questions.  A few minutes later we have an appointment, next Thursday and Friday to get his pump fixed.  With that the hope is we will take him from University Hospital to Rusk where he’ll be admitted for a couple weeks – hopefully he’ll get more than that.

Sound confusing? 

So, I would really appreciate your prayers!!! 

For Michael’s ingrown toenail procedure

That the insurance company to approve all of this.

For safe travelling for everyone that will be going back and forth to Columbia

For timing in admission, release and admission with Rusk and University Hospital

For all of this to bring Michael good success

Most importantly that all of these things (Romans 8:28) would work according to God’s plan and Michael’s progress.

Happy Birthday to Michael

Today is Michael's 18th birthday.  Wow, my little boy is 18.   There are so many thoughts that go along with that statement.

 I'm sorry I haven't done more recently here!!  I know there are a few people who look regularly to get information on how Michael is doing and what's going on in his, maybe even my life.  I really, very much appreciate that care, very much!!  I hope that soon, I will be able to get here regularly.

 For now, Happy Birthday to Michael! Thanks to everyone that came by his party!!  

...More to come soon.

Sunday January 8, 2007

 Well we are into the new year - hope yours is going well.

Michael is doing good.  He's still got something going on with his right leg.  Maybe it's a pulled muscle, I don't know.  We got it x-rayed last week and everything looked good on that. Anthony says we should check with an Orthopedic Doctor next.  I wish he didn't always have something to deal with!! But, then again I am very thankful that he has been very healthy otherwise.  He's had no problems, not even a cold.  Yesterday he started something new.  All of a sudden his voice is coming from his mouth, not his nose.  Previously it has been rare that he has gotten any sounds from his mouth.  I hope this sticks!!! It is very nice to hear his voice, it is real nice.  He just got a new device to use for communicating.  It has 9 boxes, when you push one of them a pre-recorded message plays.  So he can push something that says Yes, No, I'm uncomfortable, Change the channel and others.  This is nice, before we've only had 2 buttons and with that I've record what ever works for the moment, but there are obvious limitations with only 2 choices at any time.

Michael's clock collection grew over the Holidays.  Thanks for that, he likes them a lot

Tuesday December 26, 2006

I’m pretty sure that Michael does better with his new life than I do.  He rarely says NO – that he’s not doing well. The last week or so he has been doing a lot of thinking,  a couple times he has said that he is sad.  It’s difficult to tell for sure how he’s “feeling” – then this is a pretty normal thing for a 17 year old. 

He enjoyed Christmas, he gave a smiling response to his presents.  I don’t know if I’ve mentioned it here but Michael has always had thing for clocks – watches, stop watches, pocket watches – any kind of clock always gets his attention. So I  have started a collection for him, he has 8 or 9 clocks hanging on the wall in his room, eventually they will be all around, on every wall. We got him a huge clock for Christmas, as Addison said, it looks just like the clock in Back to the Future.  I think he’ll enjoy this now and as he makes progress as well. 

I’m going to take him today and get his knee x-rayed.  Something is not right with it, I  hope  we get that figured out today.  We also have to do something about his spacticity, it doesn’t seem to get better with an increase in Baclofen or at least it doesn’t stay better. I appreciate your prayers specifically on these two things.

Hope you had a great Christmas!  I pray that throughout the year you will remember, or find the real Christmas meaning – as I continue to pray that I keep it.  Jesus isn’t just the reason for the season – He is the reason  Period.

Monday December 18, 2006

Michael was growling and snarling this morning.  He had a snarl on his face so I told him this is what you look like and tried to imitate his expression.  He smiled.  I said, you can't smile and snarl at the same time.  That's probably pretty profound, sounds like a song for a Disney movie. 

  When you're smiling, when you're smiling, you're face can't make a snarl.

 He and I agreed that sometimes it feels good to growl, not inside, to literally grow.  It makes you feel silly enough that you just have to smile.

Sunday December 17, 2006

One of these days you're going to go to this site and read Michael said Hi Dad or something like that.  I praise God for that day, I would like to be able to write that today.  Christmas would be a good time for talking.  :)

Michael did move his left foot.  He moved it around a little bit, I asked him to do that again and he did.  The next day I asked him to move it, he wiggled his toes a little, so I tickled his foot, then he moved it, pulled it away.  He's sleeping better most of the time and it seems we've got the right mixture / kind of food finally. He continues to work hard at everything he's asked to do and his nurses, teacher and therapist are all happy and excited about the things he does.  His attitude and sense of humor are both very good.

He's been playing the game Connect Four, they've had him playing checkers too.  There have been a few nights that he's woken me up to the sound of him blowing through his lips - another one of those things that seems so simple yet takes Michael a lot of effort and concentration.

We are all doing pretty good, at least I think so.     Thanks for checking on him, thanks for your prayers and support!

Kirk

Monday December 11, 2006

It's been so long I forgot what I wrote last time.  Sorry!

Well Michael is still doing well, he's getting better with his left arm / hand, better holding his head and better with his jaw control.  We're looking to get him some more Physical Therapy in the house and that should help. 

Michael has a great teacher helping him daily - from Lee's Summit High School! Michael responds to her well. It is so nice to have people working with him that truly care, I can see that in Lisa.

Michael is spending time with me and with Christine and we're getting into the groove of going back and forth.

I have something I would like you to pray for.  There is something going on with Michael's left leg, he consistently says that it's his knee.  We need to get it checked out, get an X-ray- whatever we need to do. It seems to bother him constantly.  There are a lot of things that, I'm sure, are very frustrating for  him and I I'm sure one of them is being in pain or uncomfortable and not being able to communicate that to us.  He doesn't put a lot of effort into complaining but when I ask, he will tell me if something hurts. So, if he isn't complaining about it then it might just go on.  I don't like this!!!!  With his leg specifically, he has enough junk to deal with that I don't want him to have be in constant pain on top of it.

 Thanks for your care and for your prayers!

Tuesday November 21, 2006

I keep thinking - a year ago today I was...  and remembering Michael being at Rusk, the good and the bad.  Kylee is right there are some amazing, caring people there, other hospitals, even some other churches could take a lesson from them.

 Hi Jill - how is it going?  Are there any Thanksgiving type celebrations there?

Well yesterday Michael got sick - vomited - 2 times, I hope this isn't going to be something that is a problem with the new food. I wonder if there is something we do differently or something different about the g-tube bags.  Mostly I really wish he didn't have to deal with it.  But, Michael takes it in stride, he had a smile on his face a few seconds after and he definitely does a better job of handling it, no more coughing for hours or days after he gets sick. On the good side, he had the best sleep he has had in a while and woke up with a smile on his face.

 That sure makes the day better!!!  I can come to work with a smile on my face thinking about that.

On the way to work I was listening to Chris Rice, this guy writes some good songs. 

We're getting ready for Thanksgiving, I'm looking forward to it.  This morning Deborah mentioned to Michael that he might be able to try some good Thanksgiving food, he smile big and let out a sound that clearly said he wants some of that.

Friday November 17, 2006

Michael went for another trip to Columbia this week, it's always good to see everyone there and he got to show off a little bit. He got another adjustment on his Baclofen - the stuff that helps his muscles to relax - it's helping a little.

He continues to do more, little by little. As I've said again and again, we have to be patient, like the wave with his left hand - he might wave real big one day and then it is very hard for him to do that the next day.  He's working on making sounds and moving air in and out of his mouth instead of his nose, that's a big one.  We continue to work on his ability to communicate with others and our ability to communicate with him too.

Christine, Connie and I met with  someone to help plan out Michael's transition to becoming 18, it was very good, we learned a lot.  With all the good information we also got a glimpse of  how well this process has gone for us.  God has really taken care of us financially!!  We all need to thank him for that continually.  With all that Michael is getting and all that he requires in a weeks time we could all be toast financially, now and then we hear that not everyone is as fortunate as we have been.  God is awesome!  He and his word are where all my hope is.

 Proverbs 2
The Value of Wisdom
 1 My son, if you receive my words, And treasure my commands within you, 2 So that you incline your ear to wisdom, And apply your heart to understanding; 3 Yes, if you cry out for discernment, And lift up your voice for understanding, 4 If you seek her as silver, And search for her as for hidden treasures;  5 Then you will understand the fear of the LORD, And find the knowledge of God.

Monday November 13, 2006

Michael is back with Dad now, it's nice to have him home. with me - not to say that he isn't at home with Christine. 

This morning as I was leaving Deborah came running out telling me I had to come in and see him, "Michael is waving with his left hand"  I went back inside and he was smiling and making sounds and she said well he stopped now but  he was waving, just a little with his fingers on his left hand.  So I told him - way to go - and waited a little bit.  Sure enough he moved his fingers up and then moved his 3 little fingers in  a wave.  This is huge!!  His left arm and hand seem to be coming around little by little.

 Michael's sound seem to be more like words and sentences now.  Maybe it's just me, but something is different. Up to now when he has made sounds or "voiced" as it's called, the sounds have been like moans, like he's just moaning with nothing more specific to it. But, recently there seems to be something he's thinking more though behind his voicing.  Hopefully we'll see more of this.

(Pro 3:5-7) Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the LORD, and depart from evil.

Tuesday November 7, 2006

Michael is at Christine's this week.  I hesitate saying anything else .  I'm glad that he and his mom will have some time together but I do miss him. 

I've been told recently that I need to be less critical and more positive.  While I was in the process of grumbling to myself and out loud about that a very good friend of mine, who was totally unaware of all of this, gave me something from the Bible.  He quoted to me Philippians 4:8 and 9.  God gives us a list of things to think on, then a promise of peace if we do this. He's not saying that we should ignore anything negative things and be irresponsible, he is simply saying, well you can read it,  Here it is...

(Phi 4:8)  Finally, brethren,

whatsoever things are true,

whatsoever things are honest,

whatsoever things are just,

whatsoever things are pure,

whatsoever things are lovely,

whatsoever things are of good report;

if there be any virtue, and if there be any praise, think on these things.

THINK on THESE THINGS!!!

He goes on to say

(Phi 4:9)  Those things, which ye have both learned, and received, and heard, and seen in me, do:

and the God of peace shall be with you.

That really says it all.

A year ago today...

It is so easy to think about how bad life is, it’s easy to forget the good things.  As one who claims to be a follower of Jesus Christ maybe it shouldn’t be that way, but it is for me.  It’s easy to look at Michael and only think about what he is missing or about how much it takes to care for him. It  doesn’t seem to come natural to look at how far he’s come.  Don’t get me wrong, I trust God, I know he is here with me, with Michael and all our family.  I know that he desires to be right there with you. But, it is still very easy to take on the poor me, everything sucks attitude.

A year ago today I was sitting in the back of an ambulance on my way to Columbia Missouri.  I didn’t want to be there!!!  Of course I didn’t want to be in the situation, I didn’t want Michael to be hurt, but taking Michael to Columbia and LEAVING him, well at that point I felt as low as I have ever felt in my life. Not only had my son lost his life and anything he had with it, but now he was being taken away from me, to someone else’s care.  A year ago we had hoped that Michael could stay here in Kansas City, we hoped that he would be able to go to Mid-America Rehab.  We had heard about this place called Rusk, in Columbia, but it didn’t really matter how great it was supposed to be.  I think I remember talking to Christine and saying, “That’s too far away, it isn’t an option”.  But, Michael needed to be farther along than he was before he could go to Mid-America Rehab, they required that he, at least, be able to track with his eyes. At that point there was no tracking with his eyes, there was no control of any body parts. A year ago Michael’s body temperature was controlled by a cooling blanket, his eyes were open but there was no confirmation that he knew anything about his world, there was no confirmation that he had any awareness.  Of course I was convinced that he was aware of us, but I was continually reminded by doctors and nurses that it was unlikely.  A year ago Michael weighed about 110lbs, his heart rate was between 110 and 150, his breathing rate was more than 20 times a minute.  A year ago his immune system  was depleted, he had one infection after another, he had a trachea sticking out of his throat, he made no sounds,  he couldn’t even breath on his own.  In most of this, I was okay, trusting God, a “Cheerleader” was how someone put it. But for me moving him to Columbia was, at least I thought this was more than I could handle.  Something interesting and revealing happened on the way to Columbia.  We were about half way there when Michael’s eyes caught mine and never left, he fixed his eyes on me and followed me.  I moved my head to the right and to the left, he never took his eyes of me.  He was tracking.  When I saw this, I was mixed with emotion.  I was thinking wow, he sees me, he’s looking for me, he’s looking to me.  He’s there!!!  He’s aware of what’s going on around him!  But then I thought – uh, why couldn’t he do this yesterday or last week???  If he had, then he could stay in KC.  A feeling of assurance came over  me, of God’s presence  and direction.  As I look back on this year, there is little doubt that he was there with us, that he has been here with us.  Columbia was not the tragedy that I thought.  It didn’t take us long to see very clearly that Rusk Rehab in Columbia is a very special place and that God would use those people to help bring Michael back to us.

In the midst of all my emotion going to Rusk, I was won over pretty quickly.  As they wheeled Michael into his room, his new home for the next  few months, one of the nurses immediately reached down and “unplugged” the trachea, within a week, I think, the trachea was removed and he was breathing on his own.  I knew he could do it!!

Michael still has a long, long way to go!  But, today instead of 110lbs he is about 140, his heart beats about 60 times a minute, he breathes about 16 to 20 times a minute, his temperature and immune system are normal.  Yeah he can track with his eyes  J, not only that he can give you a look and he can smile. When he smiles it makes everything a little bit easier. Michael can get upset at you and let you know it.  Today Michael has use of his right hand and arm and he’s just getting started with his left arm and his legs. While he was at Rusk he worked hard, everyday to regain himself. Today he is still working hard and it is very difficult, but he keeps on keeping on.

I still miss what used to be. I have a picture of him with his cousins on my desk, most of all I miss that for him.  I miss that he can’t be with those that he cared for most like he  used to.  That is life to him.  Looking at this picture you can see his contentment, right before the picture was snapped Michael reached out and wrapped his long arms around Craig, Joanna and Beth, he’s smiling, content, you  can see him saying “This is good” with his eyes. Yeah I miss that for him.  But as maybe you might do sometimes with things in your life, I forget how far he’s come, I forget where he was a year ago today.  I must remember to celebrate what God has given me!  I have a son, he is here, he is alive and with us today. I love him and I am very proud of him. I thank God for him every day.

Thank you for going with us on this journey, thanks for your prayers and support!

Thank you Lord Jesus Christ for everything!

Thursday October 26 2006

Once in awhile Michael really amazes me! I wish I understood all that is going on with him! I really wish I could know what he's thinking.

I imagine every parent of a teenager would say the same thing.

I wish he could talk to me.  Hehe, I guess a lot of parents of teens would say that too.

Today I went to meet his teacher, I got to meet a couple of the therapists too.  They were doing some evaluations, trying to see what he's capable of and trying to begin a plan for helping him.  As part of the evaluation, his teacher gave him a piece of paper with 5 sentences on it.  These had normal size print, I would guess 11pt font.  She asked him to check the sentences that were true.  He took quite awhile, but he checked one, then took a little longer and he checked another.  Both were accurate!!  This is awesome, amazing.  It shows that he can see, he can read, he can process what he sees and reads.  There are times when this seems clear to be true and times when we wonder if he can do either.

While we were watching him and waiting, there was talk about why he wasn't selecting anything and it was suggested that we be patient and just give him more time, not throw 4 or 5 questions at him at once.  You know, I've heard this again and again, but I and everyone else that works with him forget this simple principle.  You see, sometimes you can fire question after question at him and he responds quickly and accurately.  So when he doesn't do that we look for other things than processing time. We look at the position of his arm, can he reach with the pencil he's using to respond or the button, we wonder if his vision is less that perfect, sometimes we even think he just can't process or can't read.  He needs a new shirt that says something like

Give me a minute and I'll get back with you!

So, today was pretty exciting, it is nice to have loving, caring capable people working with him. I hope he is taking in how many people there are that care about him.  And, I'm sure he is.

Thanks for your prayers and your care!

Saturday October 21, 2006

Michael has had someone from school working with him for a couple weeks now and we are seeing a difference.  His teacher has him moving both hands together, he holds on to his left hand with his right and he moves them both back and forth.  This is really interesting, he is able to do more with his left hand.  He also continues to make strides with his head and neck, he's moving it from side to side more and holding it up completely more.  The other thing she has him doing is getting sound and air through his mouth.  I noticed that he was putting his fingers to his lips a lot. My reaction was to discourage this, but then found that he is trying to show me what he's learned.  Leesa has him put his hand to his lips so he can feel air and feel his lips move. Good stuff!  Little pieces of progress, more progress.

Michael is smiling a lot. He gets tired of hearing about his bowel movements and other bodily functions, I'm sure he's more tired of hearing everyone discuss them all the time. I think sometimes we are down and sad, thinking about how he's not the same, but Michael seems to be in good spirits, doing just fine.  He's not settling by any means, he is working hard, but he's not down and depressed. He is making efforts to communicate this to us, it's like he's saying. "I'm fine Dad, I can do this".

This is a challenge for me, for sure!!!  I do want to be here, encouraging him, I do want to live where we are now, not be stuck in what we had in the past, but it is difficult.  I miss Michael, I don't like that he's stuck here seperated from the world, the friends he knew.  I ask for your prayers that I would be support for him and never transfer my sadness to him.  God promises to direct me, I ask for that especially.  We all appreciate your prayers!!  Michael and I talk about that.  He always confirms his appreciation for prayer as well he confirms that he is praying for others - this brings a smile to his face.

Friday October 13, 2006

  Michael and I used to go through the drive-thru and have 'dinner' finished before we got home. He liked to throw the paper that he tore off his straw into the paper bag full of french fries, I would reach in grab a hand full of nice salty fries, stuff them in my mouth along with his straw paper.  He just snickered, but he would make sure and do it again the next time.

 Michael keeps working hard. He's working on his left arm and voicing mostly.

On Wednesday we took him to the last swim meet at Lee's Summit High School.  He was really anxious and excited about going,  It was good for him. I always leave those kinds of things wishing that more kids would talk to him but he said it was fun, he smiled a lot.  I know he really liked seeing coach Holder again.

Tuesday October 10, 2006

Happy Birthday to my brother Buddy!

Michael is in his second week of school, I see and hear good things!

He’s still moving his head better, he gets better and better with it.  Mrs. Coulter has him exercising his jaw, making sounds, blowing through a straw and a whistle.  He’s getting up in the standing frame.  Lots of stimulation!

I did find out that he has another urinary tract infection or maybe he just never got rid of  it, but now we have a very thorough doctor working with us.

Psalm 31:22 In panic I cried out, “I am cut off from the Lord!” But you heard my cry for mercy and answered my call for help.

Tuesday October 3, 2006

There are a lot of times that we forget how far we've come, I guess there are even times when we wonder how far we can go.  Michael continues to do little things that he hasn't done before but then again he's not ready to get up or to play Halo again.  He's not told me "I love you Dad" but he has come a long way in the last year.  God has brought us a long way.  Just as a reminder of this I've pasted the post from a year ago tomorrow.  I remember the morning very well, I was easily excited about much less than today.  I believe, as I did then that God isn't finished with Michael, that he has something for him, I'm trusting him for that. I believe he'll be able to say thank you instead of me some day.

Thanks for your care and support, thanks for your love.

Here's the post from last year.

Tuesday, October 04, 2005

Friday Semptember 29, 2006

Hi Laura, we miss you too!  Hope everything is good.

Feel free to leave a comment telling me to post.  I keep starting a post, then don’t get to finish.

Once in awhile, Michael will just answer yes or no to everything you ask him.  I guess it’s his way of saying that he’s tired of questions.  Yesterday morning I was asking him if he was okay, if he was comfortable,  too hot, too cold –you get the picture.  He kept answering yes to everything so I asked him if his name was George.  He said yes and grinned.  When Deborah, his nurse, got there she said “how you doing Michael”.  I told her, he’s not Michael today, he’s George – another big grin resulted.  So he was Michael – who’s called George for the day.

Last night Deborah commented that he seems happy, he’s smiling a lot.  It could be that the muscles in his face are more responsive, I’m not sure but he does “look” like he’s happy a lot more.

His left arm did even better this morning.  He stretched it out and bent it 4 times for me. I don’t understand why it ‘s better for him in the morning than the rest of the day.

Thanks for checking in!

Tuesday September 26, 2006

I didn’t realize how long it has been since I posted something here…

Michael keeps making little bits of progress.

Sally caught him running his fingers through his mustache and said “Michael, are you saying No?”  Picture this, he has his thumb on his upper lip and he’s moving his head side to side feeling his mustache.  He may have been thinking how good his mustache is but we all thought – “hey , he’s shaking his head no”  So, he performed his new talent for everyone 4 or 5 times, he was smiling pretty good.  J  The next day, I was talking to his nurse and he’s doing the same thing, it seemed that he was saying “hey, let Deborah know what I can do now.”  At the end of the day Deborah, who is his nurse, reported to me that he used this new talent to tell her no a couple times during the day.  Again he smiled.

Which brings me to another piece of progress, his smile used to be sideways, only the right side of his lip lifted up, now it’s just a normal looking smile.  Well, it’s not normal looking, he looks better than normal.

He is much better at supporting and controlling his head.  A lot of the time he has complete control of it, even sitting straight up. When he gets tired it’s not complete but he continues to get better.  Yesterday he was in the car, sitting up straight and holding his head – just like normal.  It was pretty exciting!!!!  I have to be careful when driving.

He is doing more with his left arm.  When he sleeps his left arm will move around,  he lifts it up and drops it.  It’s kinda funny looking  ;-).  This morning he stretched it out, opened up his hand and squeezed mine and he did it pretty fast.  I asked him to stretch it out again and he was able to. 

Psalm 69:13  But as for me, my prayer is unto thee, O LORD, in an acceptable time: O God, in the multitude of thy mercy hear me, in the truth of thy salvation.

20 Minutes standing...

Thursday August 31, 2006

The last week has been really good!  Michael is demonstrating more and more control in his arms and legs.  Remember we’re talking about very small and very slow changes, but for Michael these are awesome changes.

Sandy gave me a little book called, The Ordeal of Reminding.  Just the title of this book is helpful, it reminds me that he might forget.  This is difficult, it’s obvious that he does remember things, from day to day and beyond, but we just have to not expect that and be patient with him.

Michael continues to do better with his head and neck control. He’s getting closer to a “NO” nod of his head – again we have to remember to get him to use this and work on it.  I’ve found that he can move both legs.  His left leg always requires some help but he can relax it when I ask him and he can straighten it, with help. With his right leg sometimes he can do it all on his own, sometimes it takes awhile and sometimes he needs help.  He still is getting tight and “scrunching” up but with patience and assistance he can straighten out completely as well as stretch his range of motion and work back and forth. Last night he was more definite on what he wanted, he communicated what he wanted without waiting to be asked, this is a good thing and something that’s new.

Yeah I know, maybe some parents would rather their kids not communicate what they want so well… J  I admit that Michael gets away with things he would have gotten in trouble with before.  We even encourage some of them.  J  We’ve all told him, more than once that it’s okay to yell out something, anything.  It’s okay to say “don’t do that” or “I want this” or “leave me alone”.  Now, some have encouraged him to blurt out expletory words and jestures… I won’t mention any names here….  J J   I’d be thrilled to hear any words come out of him but I do doubt we’ll hear  or see anything like that first.  It’s nice to see him smiling.  It’s nice to hear his voice, his real voice and not just a moan.

Michael sure responds to Addison, his sister, a lot! He almost always has a smile for her.  Michael and Addison have their own handshake.  Actually Sally taught it to him and Addison has picked up on it but he never fails to get with her on that, even when he’s been unresponsive to others.

As his doctor said, “Oh, he’s in there, we just have to help him work  his way out”

Thursday August 24, 2006

It's one year today. I just now realized that.  A  year ago - right now - I was wondering why he hadn't called me from school.

Michael is doing well!  Yesterday we took our regular trip to Columbia Missouri.  Seeing the people who did so much for him is always nice.  I have so much appreciation for this group of people!  I’ve often thought they could branch out and start a business training people who care for others.  Thanks again and again to all of you, please pass that on.

Michael’s “tone” or tenseness in his legs has increased recently, his doctors made some adjustments that should help this.

Everyone was pleased with how Michael is doing.  Many got to see him smile for the first time.  There is something about seeing him smile, I guess it lets you know he’s there and he’s understanding.  Dr. Rupright described Michael’s condition to another doctor that he is teaching, he said “Cognitively Michael seems to be completely intact, he’s just trapped in his own body”  But he’s breaking out little by little!!!

On the way back Michael showed us his progress. The last time we went to Columbia Michael couldn’t hold his head straight, he continually dropped it to the side, this looks so uncomfortable.  So for the first part of the trip when something would get his attention his head would fall forward and I would help him move it back.  This is progress from falling to the side, he’s able to hold it in the center position.  After  while, I pulled over and leaned his seat back a little bit to give him some help from gravity. From that point on his head still feel forward but he was able to move it back when it did.  This is huge progress and has to make him feel good too.  I hope Bobbie and Molly read this! 

Thank you Lord for Michael’s progress!

We’re looking forward to Michael starting back with therapy, he’s back, fighting hard again.

Thursday August 17, 2006

 So, what makes joy?  What makes happiness?  Feel free to give your opinion!

There is a song I listened to -  a couple decades ago – the chorus is something like  this;

“got a poor man’s needs, beans in the bucket and love in the sheets and your sandy eyes, making it all alright”

I’ve always liked that line.  Some say a good marriage, good kids, lots of money… What do you think?

Tuesday August 15, 2006

I spent the day with Michael to day, it was nice!  He is really doing  better, moving faster.  Sally had him doing a "Gimme five, up, down, down, then one finger" handshake he did it well.  Addison asked him to do the same thing and he didn't hesitate for a second.  Today I was playing a video game while he watched and had him give me three after each level.  This was right after he had a muscle relaxing med so I told him he needed to push through it - he did very good!!  There seems to be no lack of motivation here!

Thanks

Tuesday July 8, 2006

Michael is recovering still. But, it’s just been a couple days in the hospital and it looks like he has an infection.

His lung has sealed up, they are taking the Chest Tube out this morning, I’m sure he’ll be happy about that.  I guess it is very uncomfortable.  There is something different, something that looks better about him. Up till now he’s had a big problem with controlling where his head is, usually it’s pulled to the left with his chin close to his chest. It seems now that he’s got the side to side control down, that’s awesome!  I’m anxious to get him sitting up again so he can get back to working on holding it up on his own. 

Maybe a hospital is a better place to be than a theater, it’s more likely for someone to acknowledge God in hospital.

Update, Michel is doing well!

Michael is doing well!   He has always fought off medical problems well and continues to do so.

He had a Chest Tube put in to help his lung to re-inflate, his oxygenation rate has been doing very well – above 91 for the most part.  If you want to read information on Pnuemothorax or Collapsed Lung go here … http://en.wikipedia.org/wiki/Collapsed_lung.

 This morning they clamped the Chest Tube, the chest tube was inserted to remove the fluid and air surrounding his lung thus allowing the lung to re- inflate.  All I going well so far.  If he does well with the Chest Tube clamped it will be removed later today, if that goes well I’m told he’ll be released Tuesday or Wednesday.   I appreciate your prayers on this!!!

There have been some good things about this.  We have been able to see some of the people who cared for Michael last year and show off his progress.  It’s also given me an opportunity to appreciate his progress much more.  Being in the same place with all those memories and feelings coming back, now I remember being scared, wanting any sign of life to show.  We have a long way to go, that’s for sure but Michael has come a very long way and he has show progress and improvement all along.  Even without therapy he has improved on his own – well with our help too.

Thank you for your prayers, thank you for your support.  I shake my head in wonder when I think of the amazing love we have around us.  One of my biggest hopes is that Michael will be able to appreciate this.  Thank you!

More stuff to fight

Friday August 4, 2006

Michael has had what seems to be a pretty bad headache for the last 3 days.  Yesterday he said it was better, this morning he responded yes to having one and then no to having one. Headaches are scary. We all get headaches, sinus problems, allergies – whatever else they might be. Michael has had headaches. He used to get pretty bad ones to the point that he felt sick to his stomach.  So, it’s hard to tell, well I can’t tell, it’s hard to guess.  I was at the place where I thought I needed to take him to the doctor and that’s kinda  scary, I worry that they’ll want him admitted in to the hospital just cause they don’t know or want to be extra cautious.  Well, he was all smiles again this morning, so maybe it was just a headache.

Most everything with the house has slowed down to a halt, but we’ll get things figured out and get back to it.  I’m going to add that piece to his porch this weekend – I hope – then I can start working on other things. We’re fortunate to have this house!!  I thank God for it. 

I thank him for our family and friends as well, there’s no doubt this wouldn’t be working without you!

Tuesday July 25, 2006

Ramblings...

Another step closer

We move a little closer to being ready for Michael to move.  This weekend some good friends helped me get the deck or maybe I should really say "porch" built outside his room. It all went very well, I still have the railing left to do and there will be a ramp and steps going off to the left - we're getting there.

July 6, 2006

Friday June 30, 2006

Wednesday June 28, 2006

Words

Thursday June 15, 2006

Monday June 12, 2006

Pictures

I'm going to put some pictures from the race and the house up.  Keep checking back as I only have a couple now but I'll keep adding to them.

Thanks again to everyone, I can't say that enough. Thank you!

A Prayer request from Christine

This entry will remain in the forums area under Prayer Requests

I have a prayer request for a co-worker of mine…..

9-month old Janis Joelle DeMasi was injured this weekend in a kitchen accident…. She has 2nd and 3rd degree burns over 70% of her body.  She was life-flighted to Shriner's Hospital in Cincinnati.  Janis will be in the hospital for at least 70 days.  Her parents are Fawn DeMasi and James Boomer, both in their early 20s.

The accident happened over the weekend when James was carrying a pot of boiling macaroni over to the sink to strain it.

Fawn and James are staying in the burn ward with Janis.

Great Weekend!

Closing Day for a new house and lots of surprises

So today is the day we’ve been waiting for, for months now.  We finally closed on our new house – a ranch with a finished walk-out downstairs.  It’s really a nice house, more than I thought we would get or even be able to get.  The neighborhood is great, we’re close to good friends.  Michael will have a room on the same level as everything else, he’ll be able to get out of the sound of everything that’s going on when he wants.  We’re planning on putting a entry door in his room, with a small deck so he can sit outside whenever he wants, with this he’ll also have quick access coming in the house and leaving. Michael has always wanted a porch outside his room.

It’s all great, we were anxious to get to the house….

We knew we had to replace carpet and do some cleaning…

Inside, downstairs, outside, we knew there was work to do…

What we have though is not what we expected!  It’s hard to imagine how someone can sell a  house and leave so much junk, garbage all over. I just can’t imagine it.  

So, before I go off on all that – I’ll stop.  We love the house and when we are done cleaning and painting and carpeting and fixing and cleaning it will be awesome!  I have to keep focused on that.  Still, I just can’t believe someone could… okay, I stop again… hehehe… Maybe I’ll do some before and after pictures.

This will be a busy weekend.  We’re tearing out carpet, hauling away a lot of garbage, removing trim, painting, cutting down vines, pulling up weeds and bushes. 

So, thanks for checking in, I appreciate your prayers, for us and for Michael!   I have to got start my project lists.

I do need to do some before and after pictures.

Run Registering....

Here is easy to use info on the Amy Thompson run.  Registration can be done the day of the race but it will cost more that day.  The longer you wait the more it is. All together I have about 50 people that have said they want to do the run, I hope you will come!!!!   If you're a runner and want to run the race, that's great.  You can meet up with us before, maybe after to see Michael. If you'd rather not run, feel free to come and see Michael and go for a walk around the park with us. 

19th Annual

Amy Thompson Run to Daylight

Memorial Day

May 29, 2006

8:00 AM

Loose Park Pavilion

51st & Wornall Rd.

Kansas City, MO

Events:

5K run/walk

8K run/walk

1.2 mile Family Fun untimed course

Kiddie Dash

Registration Fees:

5K, 8K, & 1.2 mile Family Fun:

• $25 by May 8 at midnight
• $30 by May 28 at midnight
• $35 Race Day May 29

Kiddie Dash:

• $10 always

Friday May 12, 2006

We have a contract on our house and a contract on what will be our house.  I praise God and thank him for taking care of us .  We have been able to keep the closing dates arranged so that we can have some time to do some work on the new house before we have to be out of the existing one.  Time for thanks and celebration!! I know there is much more coming, I am learning to trust him more. Thank you so much for your prayers!

I have about 35 people that have told me they want to join us for the Amy Thompson run, remember if you would like to do that to let me know.  I hope for it to be a great time, a time of encouragement for Michael and for those who haven’t seen him for a while. It will also be good for him to be around someone other than old people.  I will keep trying for this.

Thanks again for your love and support!

Tuesday May 9, 2006

   Ok, it appears that we will soon have our house sold.  One step down...

Mom Words

A little closer to the house

We're getting a little closer to getting a house.  The inspection was done today, as expected there are a few things that need to be done; exterior grading to keep water out of the downstairs, a lot of trim paint inside and out and a huge window in the front of the house needs to be replaced.  We had already planned on replacing the carpet on the main floor - so, we have some work and $$$$ ahead of us but I expect the house to be very nice once it's done.  It's perfect for Michael - and Addison, Connie and me.  Definitely an answer to prayer.  It's interesting how everything is surrounded by STUFF, lots of STUFF. 

Jeremiah 33:3 Call to me and I answer you and show you great and mighty things that you know not.

Ephesians 3:20-21
Now to Him who is able to do exceeding abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus throughout all ages, forever. Amen.

Every moment counts

An Update from Christine...

Although Michael has been to rehab and to his Grandparents house… A crowd of 200 was new.

Michael went to church last night with all of us (me, Kirk, Connie and Addison)… it was a family outing.

Everyone was very glad to see him… for most the first time.  Michael was nervous once we got him inside… He displayed this by pressing his head forward in the headrest and not relaxing… He was also shaking for about five minutes… Connie has a special way of calming him and then he was then fine.

He shook a lot of hands, gave a couple of smiles,  He even made a group laugh… Our Youth Pastor's wife came by and said hi… asked Michael if he missed her, then said you better push the Yes button… He promptly pushed his "no" button.  LOL  He had a smile on his face.  His sarcastic sense of humor is still there.

There were a lot of teary eyes from the other Mom's…. Glad to see him, yet it was difficult to actually put an image with the injury.  I was nervous myself about his going for that very reason, but very glad to have him there.  A comment was made that I had a very large smile on my face.

We hope to take him to church about once a month, working up to more.

Christine

Monday - April 24th 2006

More info on the run...

Amy Thompson Run to Daylight

On Halloween night 1986, Amy Thompson  was shot in the head at age 23. Against great odds, she survived. For three years, Amy fought the battle of life after brain injury. She approached each day with courage and faith, and her spirit gave hope to all. Amy died unexpectedly on Christmas night, 1989. On Memorial Day 1987, Amy's friends, led by Molly Scanlon, organized the first Run to Daylight. Since then, the Run in Amy’s memory has raised more than $1.25 million to help all people with brain injury.

This year's run is on Memorial Day, May 29, 2006.  Michael has participated in this event in the past . 

Although "teams" are not generally recognized, we would like to have a group of Michael's relative's, friend's and supporter's together for this activity.  We thought this was a good way for all of us to get together.  We will be participating in the 1.2 mile untimed course (walking).  If possible, Michael will be joining us and won't that be awesome!

I have uploaded the registration form for your information (cost is $25 if you register before May 10th) .  One entry form is required for each individual.  If you prefer to make a donation, we would be glad to take that with us on race day or you can mail it to: Brain Injury Association, PO Box 413072, Kansas City, MO 64141-3072.  Please make checks payable to Brain Injury Association with Michael's name on the memo line.

Click HERE to get the form.

If you can join us, please let us know.  We will determine a meeting place closer towards Memorial Day.
I hope you can join us

Update From Christine

Tuesday March 4, 2006

Friday March 31, 2006

No "news" to give you, Michael hasn't been scheduled for therapy yet, I hope that starts next week though.

We're still waiting and hunting for that house.

The next entry is usually one of those I roll my eyes at and keep on going.  Today it hit me just where I needed to be hit.

Two Choices

Quick Update - Back to work

Friday March 24, 2006

Yesterday was a really good day!! Michael is home again, he has a scheduled date to restart rehabilitation and there is something really good about his eyes. This experience in the hospital will help us in the future, his doctor knows more now and hopefully his doctor here and in Columbia will communicate.

There is so much for us to be thankful for but there are times when it is easy to be unthankful. It is easy to get caught up in hurting for Michael and for ourselves and get stuck there.  It's easy to let guilt paralyze you and let sorrow turn to anger. I hope my family and friends know how thankful I am for all your support and love. I hope I say it enough! I hope I say it right. Christine has taken on a lot, she has worked through her fears, she's doing it very well. Connie, I can never say enough about how she has been for me, for Michael for everyone in this. She's had it coming at her from all sides but she has stayed by me, she has fought for me and continues to do so well at loving me. she's not just the woman I'm in love with, she's my best friend. She's amazing, I guess it's kind of strange for someone to be thankful for their wife and ex-wife in the same breath. It's okay, go ahead and laugh. It's also pretty unusual for 2 women in the situation they are in to live and act in the ways they do. I think any woman, married, single or divorced, could take these 2 as examples. These 2 women have continually demonstrated how to live in intense adversity, with all the excuses the world has to be bitter, and angry. Instead they demonstrate love, caring, compassion, duty, honor, they demonstrate what a true woman of God, follower of Jesus Christ should be. As I have said before here, I am a fortunate man.

Michael IS COMING HOME again

Wednesday March 22, 2006

Monday March 20, 2006

Michael's smiles

House update

We are still in the house hunt! I mentioned we might have found the house but it needed some work.  Well it needs a little too much work for the price.  It would have been nice but, as my mom says, God has a house that is just right out there waiting for us. Guess that's why they call it "house hunting".  God is awesome, I trust he will work it out in his timing.  Thanks for your prayers for us, the situation and Michael!

Monday March 13, 2006

Michael is keeping his progress with holding his head and his eyes.  At times he will make progress and then because his therapy is in another area he will back off a little.  Especially now, it's hard to give him therapy in every area he is improving in.

It is more apparent that he's seeing better. A couple of times he's moaned when someone stepped in front of the TV and moved his head just a little to see around them.  This he is doing on his own.  Let's hope it continues.  Hey if TV motivates him to speak what's on his mind or move, I'm all for it.

On Friday Deborah, one of the nurses that is caring for him said that he laughed at her. It seems she was having a little trouble battling the wind and a blanket that she laid over him. Every time she put it on the wind blew it off, when she voiced her frustration with a sigh, Michael laughed and smiled. His laugh is something I reeeeally would like to hear.

He also smiled when he heard me say "Squirrels are evil".  Michael has been known to stand guard around the Bird Bath, running off any perspective bird-food stealing squirrel. His comment was "Go away evil squirrels!" When I told this story to Deborah I looked over and saw a big smile on his face.  That's so nice to see.

On Saturday Michael went on his first car adventure.  We went to my mom's house.  Everything went very well, my parents were very happy to see him there, as we all were.  We'll be doing that kind of thing more and more.  It's nice to have him home!!!

Friday March 10, 2006

Settling in

Wednesday March 8, 2006

Late Update

Monday February 27, 2006

Finally Coming Home!!!!

Michael is coming home next week, unless there is another change..  they do seem to happen pretty often.  This is quite a change from last week when it appeared that he would be here at least 3 - 4 more weeks.  His doctor said it is common to move to a higher level of function when going back to familiar settings at home.

I'm very happy and very scared.  I would have preferred to have the whole house thing done by the time he comes home, this will make it more difficult to sell the house we're in. Unless we get a contract on ours and find another one in the next 7 days. hehehe - nothing is impossible for The Lord.

It's really so crazy it's funny.  Lots and lots of unknown coming up - here we go - again.

I know you don't come here to read all that, you come here to read about Michael.  Well he's doing great - that's a quote from his doctor.  He is tense again, I'm going to keep asking about that. His legs and arms are pretty tight. The sore on his heel looks better, but it's still there and it hurts.  In Physical Therapy they had him standing for 10 minutes, it was obvious that he wasn't comfortable, when asked if he was hurting he kept hitting the yes button again and again and again. He is making much progress with control of his jaw and facial muscles, some times for a smile, some times for an expression of much dis-satisfaction.  He wiggled his eyebrows too, couldn't get him to do it again though.

It will be nice to have him home again.

Messages from real friends

Below is a message, taken from Pslams, sent to me from a friend. I know I'm not the only one that turns to God for protection and encouragement. The writer of the book of Psalms also has an understanding of God's love, his commitment to those who call him father, even with all that we have done and will do that hurts him. He's still there.

Thanks to Sally, my sister for sending me that song! I know he does know the way through the wilderness, I can relate to that in a lot of ways. When I was, oh somewhere between 5 and 10 I guess, I would sing that song with my mom when we went on family hikes. My dad took us on REAL hikes and as a child, those hikes some times seemed like going through the wilderness. :-) Thanks Dad for those hikes and the time we have had together, you gave me more than you'll know and thanks mom for the song that teaches me even more today.

Psalms 143:1-12

1 Hear my prayer, O LORD, give ear to my supplications: in thy faithfulness answer me, and in thy righteousness.  And enter not into judgment with thy servant: for in thy sight shall no man living be justified. For the enemy hath persecuted my soul; he hath smitten my life down to the ground; he hath made me to dwell in darkness, as those that have been long dead. Therefore is my spirit overwhelmed within me; my heart within me is desolate. I remember the days of old; I meditate on all thy works; I muse on the work of thy hands. I stretch forth my hands unto thee: my soul thirsteth after thee, as a thirsty land. Selah. Hear me speedily, O LORD: my spirit faileth: hide not thy face from me, lest I be like unto them that go down into the pit. Cause me to hear thy lovingkindness in the morning; for in thee do I trust: cause me to know the way wherein I should walk; for I lift up my soul unto thee. Deliver me, O LORD, from mine enemies: I flee unto thee to hide me. Teach me to do thy will; for thou art my God: thy spirit is good; lead me into the land of uprightness. Quicken me, O LORD, for thy name's sake: for thy righteousness' sake bring my soul out of trouble.  And of thy mercy cut off mine enemies, and destroy all them that afflict my soul: for I am thy servant.

Questions...

When I called Michael today he had his Yes / No buttons so I could hear him, he said:

Yes - He can hear me
Yes - He is in therapy now
No - It doesn't feel like he's smiling
Yes - His Grandmas are there
Yes -  it is Tuesday, tomorrow is Wednesday
No - it isn't a lot easier to move his right arm now ( he is doing better with it though)
Yes - He did "sit  up" yesterday
Yes - I should call him again later today
Yes - he wants to say Hi
Yes
Yes
Yes - He is waving

More progress

Smiles..

There's something different about Michael's expression. He's smiling.  Well it's kind of a smile, like half a grin.  ;-)  It is a little hard to tell for sure with only yes and nos for communication but  it is nice to see his smile again.

The blister on his heel is huge! I'm told that Michael's doctor is hunting down doctors and nurses from University Hospital.  It is strange, I looked at his foot a few hours before he left Rusk and it was fine. I didn't notice him pressing against anything at the Hospital and he is so relaxed, I don't get how he got this bad of a sore so fast.

Sorry if I've seemed down lately!  I'm sure any parent can relate, even if you're not a parent, if you really love someone, it is very hard to see them have to go through so much.  Michael's had one thing after another for so long, I hurt for him.  I wish I could do something more for him.  I pray God will extend his love and mercy to Michael, that he will continue to do so - to help him smile, give him joy and heal him.

Still on hold

Latest info

I just got here in Columbia and have the latest information.  Tomorrow morning at 7 Michael will leave here for University Hospital, his surgery is scheduled for 11AM.  It's not known if he will come back here tomorrow evening, possibly Saturday or Monday.  That is all that is known!  Yep, that's it.  It could be that some time next week he'll be coming home or it could be that Blue Cross will see that he is making great progress here and he'll be extended form there.   Hopefully his therapy will continue here and the benefit he gets from this Baclofen Pump will be realized.

God is able to work it all out and he knows better than I do, but I appreciate your prayers on this, for his continued care at Rusk and for our house to sell so we can be moved and ready for him before he comes home.

Thanks!

Even though I'm me, God is good enough

Ramblings....

Sunday February 5, 2006

Updated info

Happy Birthday Michael

Prayer Request

Christine just called me me, it seems that, as of last Friday, Blue Cross - Blue Shield has denied claim on Michael's stay at Rusk Rehabilitation. Up to this point I've been impressed with the coverage and care we've received from Blue Cross, but stopping at this point would be like a doctor administering CPR on a patient, then simply walking away leaving them to make it alone. 

I can see where the length of time that he's been there would cause some concern for an Insurance company but it is clear that Michael is making daily progress at Rusk. Michael's continued stay at Rusk is absolutely necessary for his recovery.

Michael's doctor has said that he wants to see Michael stay and that he will put in an appeal to the insurance company.

I appreciate your prayers that God would work this for him! As he has been and will be, Michael is in God's hands.
 

God is Real, not just "Positive Thinking"

My God will come through!

It seems that most of the time, we assume that how we see things are the right way or the best way, maybe the only way.  I said we, maybe I should just speak for myself.  :-)  I should know by now that God doesn't always see things the way I do, I should thank God for that. Still time and time again I will panic or complain because something doesn't seem to be going the way I expect it, the way I think it should.  I forget, time and time again that God is much wiser than I am.  As parents we all should know this principle well.  Our kids often don't see things as clearly as we do, they often can't see as far ahead as we can.   One thing I'm learning from this situation is that God is often more patient with my lack of "seeing" than I am with Addison and Michael. With love and compassion and patience God continues to put up with my lack of  seeing and understanding.  It's amazing how life testifies of the truth in God's word. To put this principle in place I must remember that God knows more than I and he loves more than I. If Michael is to leave Rusk sooner than expected, I have to trust him, I get to trust HIM still.

Thanks for the party!!!

Birthday Party Eve

I want to say thank you in advance to everyone that's making the trip to Columbia!  I don't know how much Michael will appreciate it tomorrow, there's a possibility that the excitement or stimulation will be too much for him.  It's my hope that this day will be just an example to him of how many people care for him.  I hope that in the rough times to come that the knowledge of this love will give him something more.

Today was a good and bad day for him.  He did very well in Speech Therapy; he was quicker at swallowing and better at getting his mouth open.  He had something that was bothering him a lot of the day though, we never really found out what it was. These times are hard for me, he has enough to go through and deal with without adding to it pain or discomfort.  But, now he's sleeping, he's very relaxed. 

I thank God for taking away the pain that he had today and giving him a restful sleep.  Again I pray that you have a safe and enjoyable trip.

Thursday January 26, 2006

Wednesday January 25, 2006

Michael is getting better and faster with his mouth and voice. For Michael to "talk" he must work up to getting sounds out, then he must work to get sounds coming through his mouth and not his nose, then he must work up to getting his mouth open, then moving his jaw to make a word, then moving his tongue too. There is quite a process here that all of us take completely for granted. Now when I call down to talk to him I get to hear him and the last few times I can hear him, it's Michael's voice I hear. I haven't heard any more words yet but I can't wait to have a conversation with him!

Today Michael will be going for a Baclofen test.

This will test to see how well the drug Baclofen will help his spacticity or tenseness. If successful they will install a Baclofen Pump which will work more directly in helping him relax his muscles without any drowsiness effects. This could really help his recovery. A huge obstacle in Michael's recovery is how tense he is. One reason it is so difficult for him to open his mouth is that his jaw is so tight, this spacticity is all over for him. Please pray that God will guide the doctors in this, that according to God's plan this will be successful and Michael will be able to progress with a little more ease.

Some time next week Connie and I will be putting a For Sale sign in our front yard. Our house would require too many changes to accommodate Michael. It just wouldn't be practical. So, here we go... Please pray for us in this! Pray that I will see and follow God's direction. Pray that God will send a family to us that will enjoy this house as much as we do and that he will send us to a house that will be a fit for us and one that we can enjoy living in as well as this one.

 http://www.ucp.org/ucp_generaldoc.cfm/61/4/24/24-6608/147

Good Progress

Michael has made some really good progress in the last week. Generally I'm pretty impatient in this, I admit.  First while the doctor was in his room, I was starting to tell the doctor that he had moved his left hand for me.  Before I got the words out, his doctor reached out and took Michael's left hand, he squeezed it for him and let go a couple times. Next, he said "mom” I helped him a little bit, but he did it. 

So, while I am more impatient than I should be, this weekend has gone a long way in helping my impatience out. It's pretty awesome how God has given us these things at just the right time.

Sounds like the same Michael

Tuesday January 17, 2006

January 11, 2006

Progress Every Day

Christine's Update

From Christine....

Michael is making great progress….. Last Friday, he maneuvered a motorized wheel chair down the hall.  He stopped halfway and took his had off the control.  Kirk talked to him, encouraging him and he continued… The PT turned it around for him and Michael went back down the hall and into his room.  The Center is working on a more permanent motorized wheel chair for him.  That's not to say that Michael will always be in a wheel chair… it will simply provide an easier way to get around until he gets his walking ability back - which is expected.

Michael also continues to try and have conversations.  When Kirk or I call, we put the phone to his ear and he grinds his teeth, moves his mouth and starts to moan.  It seems in response to hearing our voice and is wonderful to hear the effort he is putting into talking!

Michael also is using a machine called an Auto Ambulator (www.autoambulator.com  for information).  This machine holds Michael in a harness, similar to rappelling or rock climbing.  Michael's legs are strapped onto the sides of the machine and it moves his legs in the motion of walking.  There is a treadmill under his feet also, and a mirror so he can watch himself.  I haven't seen him in it yet (because of the holiday schedule), but I'm told he handles it well for about 15 minutes at a time.

Dr. Pepper…. Michael's favorite soda is also being used to get him to open his mouth and work on his swallowing.  Kelly and Tori thicken the soda, place some on a sponge and entice him to work on control of his jaw.  This helps in the talking and eating learning process.  The reward for Michael is tasting something as he still gets his nourishment from tube feedings.  He also has had pineapple juice and lemonade.

Happy New Year!

Happy New Year

I just talked to Michael on the phone, this was the best he's gotten his voice out when I called him, and it sounded like Michael.  It really took me by surpise, a nice surprise.

Happy New Year to everyone! I hope and pray for the intervention of Jesus Christ in your life as well as mine this year.

Something to keep in mind, Michael's birthday is  the 31st of January, I want to have a big party for him.

December 30th, 2005

Michael continues to try to talk, someone heard him say "uh huh" and shake his head with it.

It hurts to see him try and try when such slow progress, but he doesn't stop. I'm so very proud to be Michael's dad.

I thank God for getting him this far and continue to pray for his recovery, specifically his speech.

Merry after Christmas

December 22, 2005

Michael walked in the Auto Ambulator for 12 minutes.  At first he was uncomfortable, he gave a thumbs up to the straps being a little too tight, but then he seemed to enjoy it.

Molly gave Michael a pen and asked him to draw a circle, he did pretty good.  As with many things he needs help holding his elbow, he's just so tense that he needs help holding his elbow up or he pulls it tight against his side. She also asked him to make a 'M'.  He made it, it wasn't the best M but it was a M.

I continue to be impressed with Michael's drive, he's a tough fighter!

Merry Christmas

I want to say Merry Christmas to everyone who visits this site! 

You have been help and encouragement to me many times.  I may not be able to update before Christmas is over so I wish you all a happy one. The support of my family and friends has been just amazing, thank you and how many people can be thankful for their ex-wife and her family.  It's nice to have a good relationship with Christine, Barbara, Doug, Bev and their families, I want to say thanks  and Merry Christmas to all of you.
Some might think that they're coming here to read about Michael, not religious stuff.  If that is you, I hope you can see it's real life, not religion.  God has saved my son's life and given me hope for his recovery. He's reminded me many times that he's in control and he has a plan. I've worked hard at times to keep trusting God throughout every day, then he reminds me I don't have to work hard at it, just make it real.  James 1:6  I'm not sure if that makes sense or not, but it just comes down to really, really believing him. Believing him can be, and usually is, an every day battle. He has taken care of my family, especially Michael, he's helped me in every step and given me the encouragement I need when I need it.  My God is an awesome God!
At this very moment my son is walking, that's a pretty awesome thought.  Yes, he's being helped by the machine, it's just taking him through the motions but it's another step closer.  Maybe God will use this to trigger something in him.  I will try to post pictures of him tomorrow or Friday.

Big Steps

Michael will be taking bigger steps today than he has in over 100 days, he'll be walking. Rusk has a machine that allows someone to go through the motions of walking while controlling the weight that is on their feet.  I didn't expect him to be doing this so soon.  I'll bring pictures or maybe a video back next week.

Here's something that is getting me...  Do I really find "joy" in the thought or assurance that Jesus is coming back for me.  That seems to be lost, it seems to me that most of us are not looking for joy in that.  But the Bible sayss that's where real hope and joy come from.

Saturday December 17, 2005

Michael has a new roommate, Joshua; I’m guessing he’s in his early 20s. He was in a car accident almost a year ago. Michael is clearly farther along than Joshua. I talked to Josh’s mom for a while, she said that she had seen and hear Michael – “He’s doing well, you’re lucky”, she said.  Well it hit me pretty hard!  A year, wow I can’t imagine going a year with little progress.  My heart goes out to Josh’s mom and Josh, so do my prayers.

Please pray for Joshua Paul Hynes and his family.

For Michael I ask that you pray that God would give him speech and better control of all his muscles.  Pray for God’s mercy with Michael, for Michael to be patient and trusting in God.

Thank you everyone for your prayers and support, for leaving comments here, for your encouragement and support.  I’m a very fortunate man!

Michael and the Cones

It's Cold

The first word that Michael said, the second time around....  "Cold"

His nurse told me she stopped putting his shirt on and looked over at him, he had "goose bumps" all over his arm. She asked him, "Did you just say cold?"  He replied with a thumbs up.  This doesn't mean he'll be giving us his amazing story any time soon but it is a start. 

He is responding vocally much faster than he was a week ago and that is consistent.  He just keeps moving along, I'm sure he doesn't see it that way, some times I don't either.  Thank you Jesus!

It's snowing in Columbia.

Please pray for Michael's ability to speak, his muscle control and that God will continue to give him drive and patience.

Monday update on Tuesday

NEWS FLASH :-)

Christine just called to tell me that Michael shook his head no to a question. Someone asked him a question, expecting a thumbs up or down, or 1 or 2 fingers (seems to me he really doesn't like responding that way) instead of either of those he shook his head "no". After that he was asked another question and  asked to shake his head yes or now.  Wow!  This is awesome news!   I know it seems simple but again, many things that seem simple he has to figure out all over again.  Thank you Lord!   :)

Celebrating