Michael is an awesome son, brother, friend, and a class act.
Loved by many, this is the story of how he will make his way back.
Sludacris
Saturday, November 19, 2011
Settled in
Friday, October 28, 2011
Home Sweet Home
Monday, October 17, 2011
Homeward
Michael has been spending a good deal of time with us at the apartment. We wanted to see how he would do out of the facility and he has been fine. We took him yesterday to Red Lobster to eat. When he was small we used to take him out of school one day towards the end of the year and declare it "Michael Sluder day". It usually involved a movie or something like that and eating the feast at red lobster. It was his favorite. My boys have never minded orderering steak or lobster as long as pops is paying.
I also took Michael to a golf driving range yesterday, kinda as a test to see if he remembered how to hit a ball. We used to play together some. At first he watched me and didn't want to, but I gave him a club and told him to give it a try. I didn't say a word, and he took the club and hit the ball just like he used to! He grasped the club the same and proceeded to put it way out there. The range had targets and on his last shot he aimed for the 100 yd target and hit it! He was very exhuberant and wanted to quit on that one. We were only there for 20 minutes but he did great.
Wednesday is a day we have looked forward to for awhile. We are hopeful, but we also realize it means a lot of work ahead for our family. We are thankful to have family and friends that have stepped up for Michael and us. Over the next few months, I hope the house is full of Michaels friends that will spend the time with him that he needs. He is fun and needs folks his age to do all the stuff you do for fun and learning. He may not know you at first but he can learn. He knows most of the folks in his facility because they spend time with him. That is the key.
Anyway, I just wanted to let you know we are headed to Nashville.
Pops
Saturday, October 8, 2011
BIG News
Whew! Just typing that brings so many conflicting emotions. I am so excited to have Michael home. I am nervous about him making the transition and how it will work. I am anxious to see what new challenges will surface (and I know there will be many, that is the nature of this beast called brain injury). But mostly, I am so so happy that he will has improved to the point that we have arrived at this place.
The first time Michael came home last December, we were covered in love by awesome friends. Ultimately, the reality is that my parents are now accepting (gladly and gratefully) an adult son that will need them way more than they expected. Because of that, they need their friends way more than expected too. And Michael's friends- what an amazing group of people- he will need you too. Dredge that love back up from the months of absence and setbacks and hopelessness, and bring it on. Pretty please.
If you are still reading, I want to share something with you that I heard this week at a conference. It floored me. In Luke 15, Jesus tells the story of the prodigal son. If you have ever been a churchgoer at all, you probably know it. The father in the Bible welcomes his son back with open arms with an enormous party despite tremendous pain and bad choices that he had made. That is a picture of how God loves us. Did you know that the father never speaks to the son? Not one word. Not all the time the son is gone, not even when he comes home. He speaks to the servant and gives instructions on how to welcome him, but never to the son. The speaker (Jon Acuff) said that is how it works sometimes when we are in the worst pain and we feel like God is not with us, not speaking to us. He feels silent, and the reason is not because he doesn't care or doesn't know how much we are hurting. It is because he is planning a party. It feels so amazing to have hope.
Monday, September 26, 2011
Partaee!!!!!!!!!!!!
It was so heartwarming to bring some joy and laughter to these young men who are facing a difficult recovery. Just wanted to thank the Edwards family for the gift they sent. Michael really enjoyed it. Also, Michael received his first memory from Logan Redden and it was so sweet. He listened to every word, and we were all teary eyed by the time it was finished. We are putting it a memory box for him to read later. Thank-you so much Logan. We are seeing improvements daily and are very encouraged. He couldn't be more loving and affectionate. I am so thankful for that. He is starting to remember his brother and sister's names. He is also starting outings off campus once a week. Post from the "Partaee Animals" I will post pics when Loren shows me how.
Friday, September 23, 2011
Out and About
Wednesday, September 14, 2011
Memories
Monday, September 12, 2011
Reflections
I have read two books in the past month about people who died, went to heaven, and were sent back. One was about a little boy "Heaven is for Real" and one about a grown man "90 Minutes in Heaven". Now, I know that some of you are rolling your eyes at this and thinking "Whatever, crazy talk." And that is ok. I believe it. I can tend to be the cynical type about certain things too, but these stories rang true to me and really, why would I choose to not believe? I am going to be (really) honest and tell you that there have been times over the last 9 months that I have wondered and asked God why He let Michael live. He has been through so much pain and his quality of life is so drastically changed, why did God send Brandon Hively into that apartment to rescue him? Brandon told me in the days after Michael got sick about that day. He felt a strong urge and almost a voice in his head saying "Get Michael out of there!" That is not an accident.
After spending some quality time with him, I am more than convinced that Michael is not done here. Maybe it is to provide inspiration to others, to cause his friends to reflect on their lives and love people better, maybe it is for our family to become closer. All of those things are true. I like to think it is because God has a miracle in store for Michael. Maybe not that he will magically wake up one day the old Michael Sluder, but that he will become someone different, stronger, more fully alive because of what he has experienced. Faith is a choice, and I choose to have faith in God to do something miraculous in Michael's life, and I choose to have faith in Michael's ability to overcome. Otherwise, he would be in heaven right now.
Ok, so here are some progress notes:
8 months ago, Michael's speech was almost pure gibberish. Today, he is speaking clearly 90% of the time. He can communicate his needs and wants, pour out affection on others, and have a full conversation.
8 months ago, Michael had lost a ridiculous amount of weight, had no idea what food was and wasn't, and had almost forgotten how to eat. Now he is putting away three square meals a day and they are having to limit him to that! He is healthy and strong physically.
2 months ago, Michael was violent, verbally abusive, and sexually inappropriate. His behavior is radically different today. He is loving, gentle, apologizing profusely for accidentally stepping on your toe. He is no longer inappropriate. (Although I am curious to see his reaction to some of his upcoming female visitors that are not his mom or sister.) I don't know if it is the medication change, the cytoxan, or just time to heal, but he is a pleasure to be around.
Michael knows Mom and Dad almost all the time and loves them SO much. He can identify Jordan and me in a picture. He can put together complicated puzzles and do addition, subtraction, division, and multiplication in his head. He can read on about a second-grade level. He can write. He can make 3-point shot after 3-point shot. Get him started with "I said it's great... and he will finish "to be a Tennessee Vol!" I love that. Some things you do not forget.
Michael's short-term memory remains the greatest struggle and obstacle to coming home safely. We have to know that he will accept mom and dad as his parents, cooperate with them, and recognize that home is home. Pray for that.
I love my brother. I miss who he was, but I am grateful that he is still here with us and love who he is now too- sweet, smart, still handsome and still a fighter. Just gotta keep the faith as we move forward.
Saturday, September 3, 2011
Lets Party!
Wednesday, August 24, 2011
Better
The rehab has made some significant changes in Michael's meds and the result has been great. He is much calmer now and more what I would call normal. He shows little signs of aggression, and in fact leans much more towards his loving side. He wants lots of hugs and affection, which we are glad to provide.
Michael is also showing some early signs of being able to remember some things. He remembered the first and last name of the tech staying with him today, which is a first. He is also beginning to remember family names. Repetition.
The only negative is that it is difficult for us to leave because he wants to go with us and gets emotional. We are hoping he will accept it and not beg us to leave. It is hard, but we are truthful and he will learn. That will be a sign we are closer to him being able to come home.
It also came a huge thunderstorm and rain here this evening. Its been awhile since we have seen that in Texas.
Monday, August 22, 2011
Baby steps
I often wonder how Michael's boss feels about what his own personal lack of concern for Michael, has done to him and our family. It is probably a good thing I don't know who he is. Some of you may be saying, "Rosi sounds angry" and let me assure you, that I am. I watch my beautiful, bright son struggle every day to remember how old he is and how to find the restroom. He was recruited to go to work for this company and this is what he got from them. He could afford his own apartment for the first time in his life. He was so excited to be able to buy nice furniture of his own. Over these last 8 months, we've been paying it off for him so he could enjoy it again one day. I am going to change gears because I know I sound negative.
My nephew came this past weekend and had a great time with Michael! He really enjoys when family and friends spend time with him. I would like to encourage those friends of Michaels who haven't visited, to do so. This is not the time to abandon a friend in need. We have a 2 bedroom apartment and car here for anyone to use while they visit. Mike and I would like to spend more time in Nashville with family but we need someone to be here for the weekend. It is all down time and is boring and lonely for him if no one is here. Rajib is coming for the 2nd time this weekend so Mike and I can get home. He is so good with Michael. Thank you Rajib! Let me finish on a positive note. Michael is asking very good questions now that point to continual awareness which is a phase of healing. He leaned over to me at dinner and said "The bad thing about me is that I can't remember anyone's name."
Post from Mom
Wednesday, August 17, 2011
Conroe
I think our final tally at Uno tonight was Michael 7, Rosi 7, and Dad 2. Not sure how that happened. I think they cheat. Rosi says she has a strategy but we didn't want to hear it.
We shot a bit of basketball today, too. Michael still has his touch. He was very complimentary of our efforts and kept saying how much he loved me and his mom. I think he realizes what his family means to him now.
The end of the days are tough, cause he wants to go 'home' with us. He took it very well tonight, though, and we said we would see him tomorrow. Also, his cousin Seth is coming in from Michigan for the weekend. They will have fun.
All Ok. We love our boy and he makes sure we know he loves us too.
The apartment is not too far from his rehab and is available to whomever wants to visit Michael. Just let us know.
Thursday, August 11, 2011
Quick Update....
Mom is flying down today to meet Dad and spend some time with Michael this weekend, then they will both head back home (Gallatin) for a much-deserved and much-needed break.
Thank you all for your continued support.
Saturday, August 6, 2011
Hope emerges
Wednesday, August 3, 2011
Limbo (again)
Michael sometimes recognizes me/us and sometimes doesn't. When he doesn't, he will constantly ask if we know his name and how old he is. This is to convince himself that you know him and he is Ok to be with you. The doctor is familiar and gave this a long name. He says there are ways to try to cope with this and will get me some more information. That is what happened the other day when we brought Michael to our apartment. He could not recognize our faces and then didn't trust us, so he fled. It isn't unusual for him to be with me and then ask me if he can speak to his dad. I just say sure and go out in the hall and call his room. He is OK with my voice on the phone but just cannot put the face with it. Temporal lobe problems.
We are currently in the taking two steps backward phase. I have to only hope that this will all work out, but it is far from over.
Pops
Friday, July 29, 2011
Empty
Thursday, July 28, 2011
What the heck is happening?
Monday, Pate (rehab center) gave my parents a week to find a new place for Michael. He is more aggressive right now (ironically, they attribute that to the healing process and more awareness....) and has hurt some members of their staff.
This morning (Thursday), they called mom early and told her that they could no longer keep Michael safe and needed him gone today. My parents made plans to pick him up and we started the ball rolling towards bringing him home to Nashville. Lots of phone calls and plans being made.
Mom and Dad went to Pate and picked Michael up. Almost immediately after arriving at their apartment, he became belligerent (no short term memory and paranoia are issues, so he did not know who they were), hit mom and dad, escaped into the parking lot, caused a scene. Cops were called. This obviously is a very clear sign that Michael is not ready to come home. They are currently at the hospital where he will likely spend the weekend and the first part of next week while they make arrangements for a new rehab center. Dallas is tapped out, so it will be somewhere far away. (California is the only option I have heard as of right now).
This puts our family in three different places. Big bummer. It leaves me reflecting (again) how quickly our lives changed last December and how much pain and confusion this has caused. I am having to draw upon deep reserves in order to remain hopeful or positive.
That's the story for today. Thanks friends and family for caring.
Loren
Sunday, July 24, 2011
Please help
Wednesday, July 20, 2011
Changes
We began with putting together 24 piece puzzles made for toddlers and now he can go through a 300 piece puzzle fairly quickly. The therapists say he is making real progress in his speech and cognitive therapies.
His periods of aggitation seem to be more short lived nowadays. But he is a handfull at times.
This is all positive and keeps our hopes up. So he still has significant gaps to fill, especially in the language and memory areas, but we feel we are moving in the right direction.
Pops
Wednesday, July 13, 2011
Dang!
I missed Michaels arrival at the ER but they figured out real fast he does not do well in closed places and is real strong for his 150 pounds. It took 8 of them to get him under control, but by the time I arrived he was doing OK. After that, it wasn't too bad. His neurologist worked with the hospital and had him admitted to the ICU, where they can keep him sedated with a drip. He slept well there last night.
Today Michael was scoped and the good news is that all his insides appear normal. In fact, the doctors cannot find anything really wrong and are not sure why he may have had blood coming out. Blood count is normal, etc. So as of tonight he is still sedated with a breathing tube inserted. The plan is to remove it tomorrow morning and unsedate him. Hopefully if all goes well we will return him to rehab tomorrow afternoon.
This is unfortunate because we feel Michael has been making real progress and these events always set him back. 2 steps forward, one back. Ramble some. He is beginning to ask insightful questions about what has happened to him and why is he here. He can take a 300 piece puzzle and conquer it very quickly. His desire to 'go home' is becoming stronger than ever and it just breaks out heart when we can't do it. We look forward to the day when we can, but that is a ways away. The biggest obstacle is still his lack of short term memory and language deficiencies.
Another sign of progress is that he is also a little paranoid. He will ask anyone around him 'What's my name?' I think he does it to make sure that whoever is around him knows who he is. Jordan was here last weekend and we tried to take a short 'family' trip with J, Michael, Rosi, and me to Sonic, but it was unsuccessful. He wasn't sure who we were so it scared him a bit to be leaving with us, he became aggitated and we had to go back. Maybe next week. Small steps.
Michael is about a week away from when his chemo may prove beneficial. We will see.
Pops
Wednesday, July 6, 2011
Hospital visit
Other than that, Michael is progressing, but the gap is still huge between now and being able to come home. He is conversive and healthy, but has practically no ability to put names to objects and remember stuff. One thing approaching normal is that the girl patients at the rehab like Michael. They come by and ask for hugs and vie for his attention. He is mostly oblivious, but when they get his attention he will show some compassion.
Rosi and I miss everyone and hope you are all doing well. We are doing what we need to do for Michael, and right now that is what matters. We will catch up later.
Saturday, June 25, 2011
Doing OK
Michael likes to laugh now and cut up. He is very lovable and fun to be around. He speaks well and shows me glimpses of getting thru this. Don't get me wrong, there are still big gaps between where he is and normal, but he has come a long ways since this all began. If the chemo provides relief on his ability to communicate and process info, then I will be very hopeful. We will see.
Loss of memory is a big obstacle. Michael's motor skills are great. He can shoot pool or play ping pong like he always has. He does things that look very natural and were learned long ago. He also shows cognition and calculating skills when looking at the plays he should make in pool or playing uno or jenga, all of which he is very good at. But then we go into the bathroom and I will say lets brush our teeth, and I will have to show him what is the toothbrush and how to put the toothpaste on and how to brush his teeth. By the time we do it again he will have forgotten. That is what is puzzling to me, and it is only thru constant repetition that he learns some/many things.
They are also weaning him off of medications and he is doing well with that. His awareness is bringing a strong desire for him to "go home". Lord knows that is what all of us want, he is just not ready. Hopefully he will continue to progress and we can indeed take him home later this year.
Staying the course,
Pops
Wednesday, June 22, 2011
Waiting
Saturday, June 11, 2011
Small steps forward
Tuesday, May 31, 2011
Surgery
Other news is that he is going to undergo a regime of treatments for the NMDA problem. A test came back positive again and the treatment is basically a type of chemo. It may help him to get better sooner, and should not hurt him. We will begin that treatment in about 3 weeks after he gets over the surgery.
Other than that Michael is doing pretty well. He has made improvements in many areas, but not as rapid as I had hoped. Maybe the NMDA treatments will help. I still hold a lot of hope for my young man.
Pops
Saturday, May 21, 2011
Breath of fresh air!
Sunday, May 15, 2011
Healing up
We are still awaiting some NMDA test results that if positive would require significant treatment. In a way we are hoping for the tests to be positive because it would explain a few things. We should know in a couple of days and will let you know. Otherwise, medically he is mending from many rubs and abrasions. He has one major problem with a finger but it is healing and hopefully when it gets better he will not have to worry about infections and such from open wounds.
For now I can tell you Michael still remembers how to shoot pool, play ping pong and basketball, that kind of stuff. Wild what he naturally can retain. He also has not lost his lack of patience. One of the other patients was playing uno with us and was kinda slow in making choices, so Michael just kind of looked at him and said come on dude! But overall he is returning to his sweet self, he just wants to be normal again.
Thursday, May 12, 2011
orange you glad I'm here
Tuesday, May 10, 2011
Antsy!
Friday, May 6, 2011
It's great to be a Tennessee Vol
When I got here, he looked at me and said "Tennessee!" (A fabulous greeting, in my opinion.) We walked the halls chanting "I said it's great to be a Tennessee Vol"- any UT fan knows how this goes. He even sang a little Rocky Top with me.
So, for now the plan is:
A. New rehab- we are touring a place this afternoon.
B. Continue getting Michael back to Michael, as much as we can. There are moments where it is clear he is in there.
Friday, April 29, 2011
Better
He is going to the hospital monday to have another MRI and tests to make sure he doesn't have anything medical going on.
Summer is almost here and I know a lot of you are going to visit. He will like that.
Pops
This post is only a couple of days after the tornado's that devastated Alabama. Lots of people are hurting. We have a lot to be grateful for.
Wednesday, April 20, 2011
A request
Tuesday, April 19, 2011
Thanks!!!!!!
Friday, April 15, 2011
morning coffee
Thursday, April 14, 2011
One day at a time
Monday, April 11, 2011
Don't count me out!
Sunday, April 10, 2011
Our support
We can’t afford to look at the big picture right now- 6 months ago vs. today. We must look at small improvements he makes, however minimal.
In my short time with him and sporadic phone conversations, he has improved. His conversational skills are noticeably better than one month ago when I was in Dallas. It is a step forward.
I know this journey has been 1 step forward two steps back, 1 step forward 10 steps back... but it’s not even close to over.
There is ABSOLUTELY still hope for improvement.
Perhaps I will post short updates once every few weeks if the blog stays alive. I plan to spend a few weeks in Dallas next month. Hopefully good things to report after that.
This blog has over 30,000 views.
I know there are people reading this, hoping and praying for Michael and his family whom they will never even meet. Thank you so much for keeping the light.
Let’s try and spread it.
send him goodies!! pictures!! Sports magazines!! posters!!
14700 Marsh Lane APT 113
Addison, TX 75001
Saturday, April 9, 2011
Can't sugar coat it.
All we know right now is that Michael is only a sliver of his former self. He stays aggitated much of the time and I spend a lot of time trying to hold him with him kicking and spitting at me. Eventually it stops but it may take over an hour. He has little memory of it later, but actually has little memory of anything. He doesn't know who Rosi and I are most of the time, even after all this time. Medically he is fighting infections, black eyes, etc. from his flailing. He can play simple card games and likes to throw the football. I have given up any hope of him returning to anything close to his previous capabilities.
I guess what is getting to us is that this has gone on for so long now that we see little light at the end of the tunnel and we have nothing left. Our sadness for our son runs very deep and it is always present. There is nothing anyone can do to change it, and it is impossible to understand why this happened to him and why he has never been able to catch a break. We will hang in there but you have to try to imagine the pain of watching someone you love so young reduced to nursing home status. I know many of you have experienced similar situations so I don't mean to try to throw out a pity towel, but this is my blog.
I don't think I will blog anymore or come back to this. I cannot imagine why anyone would want to be part of this living hell. Thanks for everyone's support.
Mike
Wednesday, March 30, 2011
New digs
Friday, March 25, 2011
Lalapaloosa?
Thursday, March 24, 2011
Code 8!
Monday, March 21, 2011
Finallyyyy got tot see him :))
Warning: this post is all over the place*!
I hadn’t seen Michael since January. I knew he’d come a long way since being in the Dallas hospital for several weeks; but he appears to be, at least physically, in worse condition than I or any of his friends saw him in January.
His motor skills and coordination have been affected from the supposed reinfection/ relapse he experienced during/following his 2 week stay at Vanderbilt. He has lost a lot of weight, and struggles more now with vocabulary than before. He sometimes has violent mood swings (could be partly caused by a certain medication he’s taking which may be adjusted soon)... He doesn’t speak much. Doesn’t look like himself...
HOWEVER, I honestly feel more hopeful and encouraged about Michael’s recovery than ever before.
This is why:
Despite the severity of his symptoms (which improved even over the 4 days I was there) there is a newness in his eyes: more awareness, feeling, certainly more emotion...
I believe he understands what is being said to him - no just the meaning of words, but the intent behind them. This felt new.
If he chooses to respond, it’s after careful thought. He is deliberate in his delivery and, most of the time, gives a logical and relevant response.
Another new development (to me) is his effort to recognize and verbalise his feelings. “I am happy” or “I am not sad” are phrases Loren and I heard a few times over the week. Oh, and when Loren or I would rub his shoulders, he let out a long “aaawwwweeessoommmeee”.!
*While Loren was cutting Michael’s hair, Loren and I gave Michael a concert, bless his heart.. We sang some Johnny Cash and Dave Matthews, then eventually progressed to rapping...Michael was enjoying seeing us make fools of ourselves. He said, “I am happy” a couple of times. When we started into the Fresh Prince theme song, Michael rolled his eyes, laughed and shook his head. He let out a big sigh and looked down. I saw a few tears streaming down his face.
I said, “Are those happy tears?”.
He looked up, smiled, and said, “Yessssss”.
:)
Also new:
*He is seems aware of social dynamics around him- responds negatively to tension in the room, or positively to people laughing or showing kindness to one another. He HATES it when people talk to him like he’s a child, which happens a lot right now.
--This frustrates me. Michael is still Michael- intelligent and capable. He’s just sick right now..
Anyway, my last day in Dallas, Rosi and I had lunch with Michael at the rehab center. A therapist came into the room to greet Michael. She was very sweet, but she spoke to him loudly and slowly, repeating each sentence twice. After she left the room, Michael rolled his eyes and gave me this look like “Is she serious?!”, then let out a frustrated sigh and shook his head. I joined his frustration, “I know!... You’re not seven... you just don’t talk very much right now.”
He nodded yes, and patted my leg.
Michael communicates well through facial expressions, hand gestures, body language. Plus his trademark mannerisms leave little to question. I think he often prefers to communicate nonverbally.
I want to mention that the aides and therapists at the rehab center LOOOVVEEE Sludog! When I was there having lunch, they busted the door open blasting some club music, and started chanting “Go Michael! Go Michael!” Out of nowhere!! Michael loved it. We all started chanting, Michael joined in. He was beaming, had the biggest smile on his face :)) I love that these are the people spending hours with him everyday.
Michael struggles with names still. He didn’t know my name last week, but I felt like he knew who I was more than ever before. He treated me exactly like he always does. -even being a little protective at times.
When I told him I was leaving, he understood that he wouldn’t see again me for quite a while. He hugged me for a few minutes, tightly, eyes closed... He was sad. I was sad...
He kissed me on the forehead and said, “miss you, call me”.
Yes, I’m concerned about him always, but not as worried anymore. He’s in good hands there. The nurses and techs love him. Mike and Rosi are with him every single day. All infections are gone now, so it’s just healing from here. Granted, it may be a long and difficult roller coaster ahead, but I don’t hesitate to say I think the worst is over.
Dallas is good.
Up up here we gooo
LOVE
Maisie
Sunday, March 20, 2011
Downside
Tuesday, March 15, 2011
Back at CNS
Maisie and I were able to hang out last night and again this afternoon with Michael, and I feel really hopeful after visiting with him. He greeted Maisie very warmly...
We looked at his scrapbook- he found an old picture of his friend Rajib particularly hilarious.
We played basketball inside and football outside. One of the best parts of being in this facility is the freedom-
Michael is no longer trapped in a little hospital room, but is allowed to roam with his aide.
BUT I do feel more hopeful today than I did last week about his eventual recovery. He is fighting hard. Maisie says she will update in a few days.
Thursday, March 10, 2011
Ups and Downs
Monday, March 7, 2011
Fun
He is also a lot of fun to be around, downright funny at times! The nurses and therapists all have taken to him as well. He and his Mom love to make silly faces at each other and laugh (OK, I do too), and he spends a lot of time out of his room. We went outside this weekend (the weather here is great) and threw the football and just enjoyed the fresh air. Lots of hugs of course. A huge difference from where we were a few weeks ago, to say the least.
I really think he gets it when I explain things to him. He loves for us to just talk and he listens well. He then gives me that knowing look and has told me that he understands. He also is increasing his vocabulary and I think this is where therapy will really help. His mom has the scrapbooks to pour over and he repeats your names and we tell all the funny stories about all his friends! He has gained much awareness and now "wants to go home". Whew, same here, buddy.
Wednesday, March 2, 2011
A good day!
Monday, February 28, 2011
Not bad.
Michael is once again setting the pace for his peers. He has shown pretty dang good progress over his short stint in this rehab. He has also shown a dislike for being restrained and having stuff plugged into his veins. It may take him a couple of more days to get everyone trained correctly but he is working on it.
The therapists say he had a great morning. They asked him who he was and he gave them the look and said "Sluder". He was chatty with them and was able to read the numbers off of die and some stuff like that. Later when I got there he looked great. He was looking for his "stuff" and looked at me and said he had to get to work. A little later he wanted to leave and said he wanted to go home to his place. All this we have seen before, but not for quite a while. It is definitely a step back in the right direction and came much quicker than I expected. Unless I miss my guess, I imagine soon the rehab place will have a flight risk on their hands. Not sure how we are going to handle that.
He also had a good shower and really likes to have us rub his hair. It leads to instant sleep - kinda like me. And Rosi and I have been reading to him from one of his favorite authors, Cormac McCarthy. Not easy reading, but he likes it. He smiles a lot now, too. Aggitation can happen suddenly but I believe it is just part of his healing. Lots of ups and downs.
Did I mention Jordan came over last weekend. Michael loved having him here, something about being brothers and all, I guess. It was good having him visit.
So, all in all, not bad.
Friday, February 25, 2011
Most Likely to Succeed
Thursday, February 24, 2011
Rehab (x2)
The bigger news is that the doctors have finished up the treatments and tests and we are now in a new room in the rehab floor! Yea. It is a big difference in making just a short move (up one floor). The hospital is all about tests, diagnosis, poking, prodding, exploring, and medications that are not very nice. But his doctors and nurses were very nice and did get Michael much better than when he arrived here. For that we are very grateful.
The rehab folks have a different mindset in that their job is to work your butt off to make you better. The therapists have been visiting Michael but now they will have him for a minimum of 3 hours a day to work on his skills. Another yea.
I am not sure we will ever know exactly what happened to make Michael so sick. We know he had a nasty case of HSV, but me thinks there was something else that followed that made him sicker. Unfortunately, there is no definitive test or analysis that you can point at and say Aha, that's it! All I can say is that at this moment in time, he is clear of viruses and has had his blood treated and immune system boosted. There should be nothing working against him and hopefully his brain can get about the business of healing. His MRI's show a lot of inflammation so it will take some time, but I am already seeing improvement and some words are coming out loud and clear.
I am betting on him and hope he kicks some ass.
Monday, February 21, 2011
Walking
We tried to get him to walk and we couldn't coax him to do it, until finally in the early evening he decided to walk and we made about 5 trips around the floor. He stood up tall and had a normal walk. I told him we would be back tomorrow and he nodded OK.
Sunday, February 20, 2011
Dont be Afraid
We are seeing some definite improvements. Physically he is beginning to gain strength. We took a walk last night. His gait is normal and he is just still weak. He also has taken to playing toss with a ball around the room. He has his old Hurricanes QB arm coming back! It won't be long before he will difficult to contain in a hospital room. Good problem to have.
He is also much more alert and aware. He is nodding his head to questions and seems to know exactly what you are telling him. He lets loose with a few words and answers sometimes when you don't expect it. He also got frustrated today when he couldn't get up and let loose with a 'dammit'. His determination is high and will see him through.
Aunt Peg came in from Michigan for a few days. Michael greeted her with a smile! She said he loved the hand massages she gave him. He gets quite a bit of pampering. Rosi gives him a foot cleaning and massage every day along with a shampoo. I give the shave. He loves all of it and it relaxes him. Of course, we enjoy making him feel good as he has been put through the wringer.
We are moving into a larger apartment tomorrow and settling in for the long haul here. We want an extra room for visitors and for Michael when he gets better.
Enough for today. It was a good weekend.
Oh yea, the Dont be Afraid title is what we tell Michael in those moments when he looks overwhelmed and frightened. He had a dream the other day and was laughing and smiling during his dream, but when he woke and realized he was in a hospital he looked frightened. We asked him if he was afraid and he nodded his head yes. We held him close and told him not to be afraid, that we were there and everything is going to be OK. He likes to be held sometimes.
"When the whole world is saying its over, the Master says No, I have just begun. Don't be afraid." (youtube "Don't be Afraid", by The Cathedrals)
Thanks, Butch.
Wednesday, February 16, 2011
One Less Thing
We are at a crossroads with his treatment. He has had tests results come back with negatives for HSV and NMD, so what is left is to have another Lumbar puncture to check for stuff in his spinal fluids. If they come back in the normal range then we are set for therapy and rehab. If out of normal, then I am not sure where we go. One thing I have learned is that this is not an exact science and you take each situation as it comes.
At any rate, Michael is alert and aware. Doesn't sound like a lot, but today we had him up for an hour or two and he said his name and a couple of other words. It tells me that there is someone in there that is fighting to get out. Also, the hospital has multiple therapies coming and going, which we welcome. They actually come down from the rehab center upstairs and spend time with Michael. We are working on getting him eating and walking and other basics. It makes for busy days for Michael but he is really responding to the stimulation.
Kinda funny last night as Michael and I got into a wing chun battle with our hands. He kept pushing my hands away and I would push back. He would twirl his wrists and move my hands and I would do it back. We did that for about 30 minutes and it was fun.
Tuesday, February 15, 2011
Calling all Believers!
This morning Michael spiked a fever, probably due to fluid in his lungs. They are treating with a broad spectrum anitbiotic until they can figure out the source of the problem. More waiting.... It feels like all we do. One day blends into the next for Mike and me. Both of us wish we could take Michael's place, but we can't. We do our best to put on our upbeat 'faces' before we enter his room. We want him to see only hope and love in our eyes.
To be honest, Mike and I both feel numb and so deeply sad that its hard to describe. If there is anyone that doesn't deserve this, its Michael. Thank you to our supper club friends who sent us a care package. We do so feel your love!
Friends, please don't forget Loren and Jordan - they are hurting as well and don't have us there for support. If there is any kindness you can show them we would greatly appreciate it.
The main reason for my post is this: Michael needs a miracle. He needs God to move on his behalf. I know there are thousands who read this blog. I am asking all of you to pray for a miracle.
Thanks,
Mom
Saturday, February 12, 2011
Who are You?
Later he wanted to stand up and we figured out he wanted to go to the bathroom, which is definitely a good thing we need to learn.
At the end of the day he was trying so hard to get some words out and you could tell it seemed just at the tip of his tongue. He finally, after struggling, got out "Who are you?" I told him I was Fred, and his mom was Ethyl. Just kidding, but to be able to actually ask a question and use phrases I thought was huge.
I am looking forward to tomorrow and seeing Michael get better. Monday we are looking at maybe walking and eating some soft food.
We are still awaiting definitive tests results but for now these treatments seem to be effective. We'll take it.
Friday, February 11, 2011
Fluffy
The treatments seem to be working. A friend who had not seen Michael in a few days was very encouraged by where Michael is now versus a few days ago. He is sitting up and is much more alert and aware. He has said a few words as well. Also, he is making what I call 'Michael faces'. We are going in the right direction for a change.
The speech therapists came by and spent some time with him. She fed him some apple sauce and graham crackers. Baby steps.
Wednesday, February 9, 2011
Technology
This phase of treatment will last for a few days, and we hope to see some results after the 4th or 5th treatment. For now, he doesn't talk but seems to recognize us. He has the tube out of his nose and we hope he will begin eating again soon. He needs to eat and get stronger.
Today was a little better than yesterday and for now that is all that counts.
Tuesday, February 8, 2011
Next Step
We have talked with the Doctor and tomorrow he is set to get a couple of things accomplished. First thing in the morning they are going to give him a peg feeding tube in his stomach and remove the line they have going to the stomach thru the nose. One irritant down. They are also going to install a line in his upper chest to administer the plasma transfer, which is the next treatment.
The last couple of days have been tough in that this is a complicated case and we need to be very pragmatic about his treatments. The treatments have risks and we need to be as sure as possible about his condition before we begin some treatments. Because Michael may have had these two conditions one after the other we are in unchartered territory. We will take this day by day.
Michael is OK. He rests a lot and doesn't have a lot to say right now.
Monday, February 7, 2011
Talked to Mom tonight and they are ready to move forward with the plasma treatments, regardless of the test results. Looking for some answers, and wanting Michael to get better!!
Sunday, February 6, 2011
Super Sunday?
No entries since thursday cause we haven't seen much change. Michael is receiving medication to treat possible HSV and Receptor E until the tests results come back in. The care here is excellent and he is clean and cared for.
The next step will be to have a plasma transfer beginning some time next week. This is sort of a dialysis of the blood to remove the offending antibodies. It takes place with several treatments over about a nine day period. Results of this treatment aren't final, but are generally considered to be very effective. If Michael had not had previous damage then I believe he would have had a strong chance to see a short recovery. But my fear is that the damage due to this entire process will leave a long tough road ahead. I have the strongest faith in my son to battle anything that comes his way and he will do his part, but right now he needs a break.
He hasn't really spoken anything for a few days now and when he is awake we don't get a lot of response from him. It seems we have retreated a long way in the last three weeks. This new phase is quite different from the last and his motor skills are being affected along with the speech. It seems a double whammy of the worst kind and to be honest Rose and I are quite discouraged. When are the hits going to stop?
Thank you all for checking on Michael. I wish I had better news but right now we are in a holding pattern and fear is battling hope. It seems every time we get a sliver of hope going it is dashed by events. We feel like folks that have been bitten a few times and are very wary of setting any expectations. We will deal with this one day at a time and I will keep my hopes close to myself for now.
Of course, all Michael will see are smiling faces and encouragement, which are reserved for him.
Tuesday, February 1, 2011
Complicated
The doctors have been quite busy with a steady array of tests. They want to confirm just exactly what the problem is, so they are rerunning pretty much every test Michael has had. The odds of Michael having two different types of E are very low, so they want to know if this is relapse, or something totally new. In the meantime, they are beginning treatments for both until he knows more. It will take about a week for us to have a more complete picture.
In the meantime he is getting nourishment and good rest.