Settled in

It has been exactly 1 month since we have been back home with Michael. He loves being at home and spending time with us which we are so thankful for. He is going to therapy on Wednesdays and hopefully they will add a second day soon. I have found a great counselor for him to talk to and she can manage his meds as well. It seems like every evening he questions us about why he was away from home so long. Even though we explain it over and over, he can't believe he was "sick" that long. Almost every activity we do with him is some sort of therapy but we try to make it fun. He is very helpful and performs severasl chores around the house and yard. He is so sweet and affectionate and that is something else we are very thankful for. He does have very limited conversation skills,due to his loss of knowledge. We are having to work on appropriate social behavior and slowly he seems to be retaining it. He is relearning body parts, names of objects, and how to take care of his daily personal grooming needs. Sometimes, when we are out in public, I feel super sensitive to people's reactions around us. I realize that most folks don't know about Michael, and that coupled with the fact that he looks normal, makes it awkward at times. This son of ours didn't deserve what has happened to him, and we will dang well make sure he has every opportunity to get back what he has lost. Please continue to pray for Michael,as he has alot of work ahead of him, as do we. Thank-you all for caring and following this blog, but mostly for your prayers. Post by Mom

Home Sweet Home

It has been 9 days since we arrived home and things are going quite well. I can't count the number of times Michael has said, " I am so happy to be home ". Those words are priceless! He is extremely sweet and willing to do most anything we ask. He has started his out-patient therapy and is spending time with family and friends. He loves sleeping in his own comfy bed, and is getting really good sleep. Let me just say that this will be a great Christmas! Post by Mom

Homeward

Rosi and I are doing a little packing here in Conroe. Michael is due to be discharged tomorrow from Touchstone. We have tickets for wednesday afternoon on America's favorite airline, Southwest, to fly home.

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

BIG News

This is the news that I have been waiting for months to be able to announce. If all goes according to plan, Michael is set to be released (when I put it that way, it sounds like he has been in the slammer) on October 18th!! 

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.

Partaee!!!!!!!!!!!!

We had an awesome party for Michael on Saturday! My sisters and Chelsey were here to liven things up. Of course, all were invited and one by one they strolled or rolled in for the festivities. We started out with some Marvin Gaye on the boom box to get us in the party mood. As you all know Michael and us Samson women, we had to bust some moves! Lots of smiles and laughter. We probably spent 30 minutes alone just hitting balloons at each other. Michael thought it was hilarious when one would hit him in the head and crack up. Michael had a special Birthday hat that he proudly wore during the entire party. We played pin the features on Michael, and we think he was peeking when he took his turn (what a surprise)! We all sang before he blew out the candles, but he made a wish first. Interestingly enough, he knew what that meant and did so without telling what he wished for. I think the funniest thing that day was the cakecapades. Everyone got a large slice along with ice cream, and he ate his without wasting any time, then reached over and took another. When I had my back turned, he dug in with his own fork to take his third and last piece, because we whisked it away while his eyes followed it out of the room!
 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.

Out and About

Michael had his first off-site outing yesterday. Went to a local park and played basketball. It went great! Next week he is going to go out to a restaurant. This is huge. It is a step towards his homecoming, which we are all pumped about. I hesitate to guess at a timeline, but I think it is pretty safe to say that this Christmas will be a MUCH better one than last year.

Memories

It seems like I'm always asking for help, but I just got an idea, that should be easy to do. Heres the thing. Michael doesn't have hardly any memories, so he basically needs to start over. He really doesn't know who he is as a person. So that is where ya'll come in. If any friends and family would write to him with a memory of your own, something you did together, an event or experience you shared, maybe something he did for you that shows him his character, or places you've been. Anything that might help him recall who he is. I think it haunts him to not remember if he is a good guy or not. We can read these letters to him now, and down the line, he will be able to reread them himself. Make your memory letter simple to understand and short. This would be such an awesome thing for him to have. This is his address: Touchstone Neurorecovery Center; 9297 Wahrenberger Road; Conroe, Texas 77304-2441 He also can take phone calls anytime on the weekend between 9-9 or after 3:00 pm. on weekdays. The number is (936)788-7752 ext. 251 or ask for the Winsor House The code you may need to have if asked, is 17078 To his friends who have been unable to visit: this is something all of you can do! PLEASE help Michael remember who he is! Post by Mom

Reflections

Aaron and I got to spend this past weekend in Conroe with Michael. It was a great weekend, I will update you all about his progress, but I have been doing some reflecting this morning and want to share.

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.

Lets Party!

Michael's birthday is coming up on September 15, so my sisters and I are going to throw him a party at the Windsor House. If anyone would like to send him something for the special occasion, here is his address; Touchstone Neurorecovery Center 9297 Rahenberger Road Conroe, TX 77304-2441 [Windsor House] To Michael's friends, just use your imagination. Ya'll know what he likes. He is starting to look at all the posters and pictures in his room of friends and family, and is amazed that I know everyone's name. He may have to start over with friendships, so I hope that ya'll are up for that. He has to relearn so much, so lets all pray that the part of his brain that stores new information will heal. It may have to be a miracle, so PLEASE, everyone that believes in miracles....pray without ceasing! When his cousin, Seth was here, we bought him a cheap digital camera so he could take pictures. He is helping me make a book of everyday objects that he will be using, to memorize. Michael has made great improvements since he has been at this facility. They have pretty much changed his meds and between that and the cytoxan, things are getting better. The staff at Windsor House are very compassionate and great with Michael. They can see that he is a wonderful guy and I am so thankful for that! We also have several people coming out to give Mike and I a break, over the next couple months. So thank-you to Loren, Aaron, Jordan, Ashley, Chelsea, Maisie, Rajib, Aunt Lynda, and Aunt Peggy. We appreciate you so much! Post from Mom

Better

Rosi and I had a good visit with Michael today. We went to Barnes and Noble and loaded up on stuff we hope will help him to learn. A number of educational books, puzzles, and whatnot. Michael loves academics in general and is like a sponge now. He is very strong in math and Rosi has him reading basic stuff. We put together a puzzle tonight of the US, but he has a problem with abstract things as far as understanding what the map means. (Kinda like Rosi, - oops, did I say that?)

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.

Baby steps

Well, we are on plan D for Michael and it is called Touchstone. He has been here for 2 weeks and after a rocky start appears to be settling in somewhat. Every time he is moved, it is very hard on him. I'm hoping that this Rehab has the staying power to be "The Place" that gets him back on the road to recovery. The staff are very friendly and can already see what kind of person Michael is. His aggression is beginning to decrease and at times he can be talked down when he is getting upset. The trigger is always his lack of understanding of where he is and wanting to go home. He seems to think that he has done something wrong and is being punished. We are constantly reassuring him that he is in a very good place and that he has not done anything wrong. What is different from before he started the cytoxan is that he will listen and take the info in [which is progress]. However, the problem is that he only remembers it for a couple of minutes. The short term loss is devastating. Until he knows Mike and I consistently, we cannot safely bring him home. Of course, we are hoping that the cytoxan will help with that issue, but only time will tell. My gut feeling is that because the HSV had simmered in his brain for a good 8 days before his friend, thank God, found him, it is the result of the HSV and not the NMDA.
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

Conroe

Rosi and I moved our Dallas apartment stuff to an apartment in Conroe today. Not sure if it was the right thing to do, but at this point we make short term decisions. After we got our stuff inside, we went to see Michael and he appears to be doing very well. We aren't seeing too much aggitation and he is learning more each day. If his memory can decide to kick in it will be a game changer. Patience.

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.

Quick Update....

Michael has moved to his new rehab outside Houston (Touchstone). So far, so good. It was a huge relief to find a rehab that could take him, insurance accepted, and it is the type he needs. All big things that happened the day after the love bomb. Accident, I think not.

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.

Hope emerges

First, let me thank you all for the "LOVE BOMB". It was amazing and meant so much to all of us! I had no idea that such an organization existed, so thanks so much. The last few days the social worker, Mike, and Jordan have been at work finding an appropriate facility for Michael. He will be transferred to Touchstone in Conroe, TX Monday morning [yeah]. Today, he is getting the second round of Cytoxan [yeah]. I dare to hope! Please pray that this will be the place where he can heal and recover. Let me finish on a funny note. About a week into his stay at the hospital, they decided to put him in a vale bed[netting enclosing the bed]. Overnight he managed to systematically tear it down and then helped to carry it out of his room, saying, I think I did something bad. we kind of love that fight and determination in him! That is our "Michael Sluder". Post by Mom

Limbo (again)

Well, here we are again in limbo. There are quite a few folks searching for an answer as to where is the best place Michael can go, but this takes time. I expect it will take another week. Meanwhile he is in the hospital, which is not the best place for him.

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

Empty

That describes how we feel. We have been with Michael day after day now for 7 months. We felt like our constant love and support would help him heal and come back, but its just not enough. He needs a facility that understands brain injury and is equipped to handle explosive behavior at times without harming him. That has already been done to him. He needs room to roam and physical activity such as a gym or rec room to let off steam when he becomes confused and angry. If anyone reading this knows of a facility like this, no matter where it is please let us know. We are at our wits end and very exhausted. In fact, I'm driving home tomorrow with Jordan and our dogs. I need to regroup and spend time with my other family members and let the pros handle Michael. Mike and I have both agreed that it is time to detach and let go. If we keep going at this pace, it will kill us. I feel defeated and like I'm turning my back on Michael, but I don't know what else to do. Post by Mom

What the heck is happening?

So this has been the most ridiculous day in quite some time. I know that Jordan and I probably have our facebook friends very confused, so I am using this as a forum to just let everyone know what is going on.

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

Please help

I hav'nt posted in awhile because things are so difficult. Mike is certainly right about progress, but with it comes a huge downside. Pate is wanting to send Michael to another rehab because they cannot handle him when he becomes aggressive. I am so sad because I thought this was the perfect set-up for Michael to heal. I must admit I am angry as well; I feel like they are throwing in the towel before the cytoxan has a real chance to work. If he goes to another rehab it would be out of state and he would lose his neurologist here as well as us. I believe it will set him back again. So I struggle with the question, "Why does'nt anything go his way and where is God when we need him desparately?" If anyone reading this has an honest answer or real hope to offer me, I would love to hear from you. I feel like I am drowning in heartache and don't know how much longer I can do this. At times he knows I am his mom, but then he does'nt and asks who I am. When I tell him, he becomes very upset and at times angry. He says that I am not his mom....he knows who his mom is. I walk on eggshells with my own son. When he looks me in the eyes with his beautiful green eyes and does'nt know me, I can't even find words to describe what it does to me. I am trying so hard every day to stay strong for him and put on a smile when I see him, but I am dying inside a little more each day. I think all of you know how much Michael is loved and I can't imagine what our lives will be like without him. I do know that we can't bring him home until he can get back some memory. We would not be able to keep him safe much less at home. He would leave and there is no telling what would happen to him. Insurance is already hinting that they can't pay for rehab forever, as they put it. If they don't do right by Michael and something bad happens to him, God help them because I will hold them responsible. Post from Mom

Changes

We are seeing some positive changes in Michael's overall awareness. He is asking better questions and wants to know what has happened to him and why he is here. He also knows us much better now and is able to take in much more of what is going on around him now.
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

Dang!

Rosi and I were getting an update from Michael's therapists on tuesday afternoon when we were informed Michael was throwing up and there was blood coming out with everything else, and they had called the EMT's. Our hearts sank again, and pretty soon we were headed for another trip to the ER. AArrgg.

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

Hospital visit

Michael had a visit to the hospital and overnight stay to receive a treatment for his NMDA diagnosis. It is a form of chemo designed to tell the body to stop producing antibodies that are maybe interfering with his recovery. We are hopeful the treatment will be effective, but the earliest we will know anything is a couple of weeks or so. There are no guarantees, but the doctor and we have a pact not to leave anything off the table when it comes to his treatment. We are hopeful. I am not sure what to expect, but we just hope to see progress.

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.

Doing OK

Rosi and I see Michael all the time so it is difficult for us to see his progress. But if I think back and try to remember some of the very difficult times we had I can see we are in a much better position now. Michael is getting over his surgery and is handling himself much better nowadays. He is very healthy and strong and when we go out to visit we have a good time with him. The rehab has a rec center and usually we are the only ones in it so we play pool, ping pong and such and whoop and holler and have a good time. When we are in the big house all the patients are around and it is something to see. A couple of the gals have a crush on Michael and want his attention, but he is oblivious. Kinda funny to watch.

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

Waiting

This friday Michael sees the Dr. who performed the surgery and we are hoping he clears him for the Cytoxin treatments. We are very anxious for these to begin and see what happens. He is trying so hard to figure anything and everything out that is thrown his way. He is such a fighter! I can't imagine what it would be like to be in his skin for this long. We believe he has had this secondary encephalitis since about January 7th when his picc line was removed. I often find myself wondering where Michael would be if he was treated right away. What if an MRI was done before pulling the picc line? The most important thing I have learned thru all of this is...Advocate Advocate Advocate! If any of you go thru a medical crisis, these are some issues you should keep in mind. You can't ask enough questions. If you are not getting an acceptable answer, ask someone else. You not only have the right to ask, but the responsibility to your loved one. The medical professionals can be wrong. Push for the tests that you feel need to be performed and don't take no for an answer. OK, I'm off my soap box now. If any of Michael's friends are considering a visit, July is open other than the 8th-10th so far. He would love more visitors. This is the #(972)838-2602 ext. 2 or ask for West House where Michael lives if anyone wants to call. The best time to call during the week is between 4:00 and 8:oo and on weekends pretty much anytime. That is it for now. Thanks for keeping up. Post from Mom

Small steps forward

Even though Michael is back in the hospital from a complication from the surgery, I still feel hopeful today. Michael is making progress in spite of having nmda receptor encephalitis. That tells me he is a fighter! He had 2 friends visit this week. Landon and Ashley came to spend time with him and they had a great time! He loves it when friends visit. Thanks to those of you who have taken the time to do so. We really appreciate it. He has a wonderful sense of humor and is very affectionate. We are anxious for the treatment to start, hopefully in a couple of weeks. Please everyone pray for a good out come for him and no secondary infections. A word about Pate. It is a wonderful place and is staffed with folks who get it. I can tell they really care about Michael and we feel very good leaving him there. It has a family feeling and that move was definitely a good one. Michael has not had any injurfies since he came there. He even told me " I have friends here. " I loved it! That is it for now. Thanks for all the love and prayers. Mom

Surgery

Michael is scheduled to have surgery for friday. He has had a complication and they need to go in and repair some parts. Just another fringe benefit of his situation.

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

Breath of fresh air!

Not only is the location here at Pate, a breath of fresh air but so are the staff. We are amazed at how different Michael is responding to everything here. He is being treated with respect and compassion, and is totally meshing well with all 15 other residents. We play games and try to include anyone who is able to participate. He frequently pats another resident on the shoulder while passing. One man in particular has takin a liking to Michael, probably because he has a son his age. We call him the cowboy because he really is! He plans on showing Michael how to put birdhouses together. We have gotten to know all of the folks here and their stories,and it has opened our minds to a whole new world that we never gave much thought to before. This place has a "Family" feeling to it. We brought our Michael Jackson dance WII game this morning and entertained all of the residents and staff. We try to do alot of fun things when we are here visiting. It is so nice to see him smile. He is still as sweet as ever. We are still waiting on a test result, but meanwhile Michael is being well taken care of. Please continue to pray for his doctors to find a diagnoses so he can be treated once and for all. It is a good day. Post from Mom

Healing up

Michael is settling into his new digs pretty well. It is quite a different setup with open spaces and kind of a busy, community living arrangement. It is working well with him because he is just one of a crowd and is not singled out. He just fits in with everyone else and nobody gets excited if he wanders around. It is a large ranch with a nice recreation center, walking, and a hoops goal! We have seen almost no aggitation in the last couple of days, if he wants to leave we just give him some time and space and he walks it off and we can then redirect him to play some basketball or play a game. Less stressful on him and everyone else.

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.

orange you glad I'm here

Good news! Michael was moved to his new digs at Pate yesterday. It is a scenic, 95acre ranch. I saw horses, goats, and a donkey, {he and Michael should get along well}. The house he is in has open living spaces in the middle, and bedrooms off both ends much like a lodge. We are hoping the open spaces and ability to have choices will suit him better. We decorated his room with the stuff everyone sent and it looks like Michael. He did very well up until about 7:30 {at which time he needed meds and shut-eye} when he told everyone in a loud voice "just leave". The problem with his request is that he shares this abode with 15 other people. The staff quickly moved the other residents. Michael spotted the oranges on the counter, and someone whispered to Ashley, "I think he is going to throw it." You guessed it......he did. It was actually kind of comical, him standing in the kitchen throwing oranges at the staff. They quickly scrambled to remove the apples off the counter. He calmed down after his meds and shower and went to bed. I spent the night with him on a rollaway, and he slept 12 hours staight. This place has a rec-room with a pool table, ping pong, large screen TV and other games. I think we will spend alot of time down there when we visit. Post from Mom

Antsy!

We are still waiting on insurance approval to move Michael to a new rehab. As you can guess, he is getting very antsy! He is on an oncology floor, so they have to keep him fairly sedated but, the care he is recieving is great. His wounds are healing, he is getting much needed rest, and he is being cared for with compassion and respect. Please everyone pray that we get him into a place where he can start to recover. Ashley is here for the week, and he enjoys her company alot. On a humorous note, Michael still has that competitive drive when playing games. If he is losing, he trys to play a card that is obviously not correct, and when we object, he says "thats not cool". That is all for now. Thanks everybody for all your love and prayers! Post by Mom

It's great to be a Tennessee Vol

Updating from the hospital. I am watching Michael put away an enormous lunch after a morning spent playing Jenga, Uno and Domino's. I came in Wednesday to help transition Michael- we are in the process of finding a new rehab facility for him. I can tell that he has made neurological improvements since my visit in March (speech, aggression, confusion are all better). The speedbump that he is dealing with at the moment is primarily physical. Without saying too much, it is important that we find a new rehab facility for Michael.

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.

Better

It is hard for us to see Michael's progress because we see him every day, but I would have to say we are seeing little things he is doing better. He speaks better and with longer sentences, and a lot of the little things we do every day are just at a more normal pace and behavior. He still has challenges like some pretty bad wounds on his fingers that will take some time to heal, and he still has no memory. He is affectionate and likes to receive calls and have visits.
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.

A request

Lisa Payne is working along with Barrie Hollins on something fun for Michael. They need all of his friends help. Send greetings to Michael in short and sweet or funny video clip via Lisa's email. payne0295@bellsouth.net You could be dancing or just goofing off like you might do if you were withhim. Also if you have any great pics of trips you've taken or events you've been at together, email those as well. I'm sure you all know how to video and email from your phones, so please do so. I would love to see something from every friend Michael has-it would be so awesome! Thanks in advance. Post from Mom [Rosi] P.S. This morning when I called his apartment, he actually answered. His RAs told him to pick up the phone and it was a great surprise to me!

Thanks!!!!!!

Thank-you to all who have sent something for Michael. His bedroom looks awesome! Just a little positive tid-bit.....when he arrived at CNS a month ago, he weighed 126 lbs. He now weighs 145 yeah! He had an appointment with Dr. Greenberg yesterday and he will be running follow- up tests [MRI,Lumbar puncture,& EEG] next week to make sure everything has been done that can be. I'm so grateful that he is keeping his word on following Michael's recovery. He said that Michael has made large improvements since his hospital stay, however their are large gaps and deficits that need to be addressed. Thank-you for calling him, he really seems to enjoy the sound of familiar voices. This is his direct # [972]594-0549 to the apartment. Ask for 21 when the office answers. I can't wait for his friends to start visiting him. His brother, Jordan is coming this weekend and I am going home to spend time with Loren, Aaron, and my sweet grandsons [Mike is soooo jealous]. Thanks to all of you who are planning a trip out here, I feel like it will bring some joy into his life because, it is sorely lacking. He is not happy here at all. Until he understands the reason he is at CNS, he will continue to feel like he is trapped. That is the best way I can describe how he feels. Sometimes he asks "What have I done wrong?" It breaks my heart for him and I explain once again that he just got sick. Please pray that at least his memory will start to come back, so he doesn't have to go thru this every day. That is it for now. Post from Mom [Rosi]

morning coffee

This morning, Michael and I sat on the sofa watching his graduation video. He had his protien shake and I my morning coffee. He was enjoying it so much, he kept patting my arm and by the time it was finished, my pj's were soaked. We laughed. He has such a sweet soul! I can tell he appreciates all the time Mike and I spend with him. It will be so great when his friends start to visit. Speaking of friends, put your heads together and let Lisa Payne help you create a video or dvd. She actually offered and she is excellent at it! Michael would love it! I also just bought a WII for his apartment along with the Michael Jackson dance game and an NBA game. Any other suggestions? Thanks for the posters of "Fight Club" and the "Strokes" {?} hope I have that right. Michael's RAs are really getting to know and care about him........makes me feel good! Love to all of out there. Rosi [mom] p.s. Lisa's cell# is [615]957-6225 if you want to help make a dvd or video for Michael.

One day at a time

I think I've learned to stay in the day. Looking forward is overwhelming, and looking back is disastorous. I'm going to celabrate all the small steps forward with Michael. Yesterday, I saw him smile, while playing Jenga, more than I have in months. He has gained 11 pounds in a month. He is sleeping quite well during the night. His combative episodes are fewer and much less intense. I feel like the staff is getting to see the real Michael more often and following our cues as to how to react to him. All these things are positive. I'd like to thank those friends and family that have called him. He really enjoys hearing familiar voices. If you struggle with what to say, just recall stories from your past with him and make your questions basic yes or no answers. Many are planning to make a trip out to visit him..........it will be so awesome for Michael. It looks like May will be pretty busy. Anyone wanting to visit just give me a call- [615]483-3354. Michael can also recieve mail at this address: 3915 P0rtland Road Irving, TX 75060 Apt. 21 Thankyou all who have sent something to decorate his apartment with. He still has alot of room...hint-hint Love to all of you for supporting us and Michael thru this tough time. Rosi [mom]

Don't count me out!

Mike's post was mostly accurate and definitely honest, but, I believe if Michael could express himself, he would say "Don't count me out!" I don't want people to give up hope and stop praying for him. I believe as long as he has breath in his body and that I and we believe in a heavenly Father....their is hope. So we will stay the course and make Michael feel safe and loved while he works hard to return to us. Mike and I have extreme caregiver's fatigue and feel all the responsibility of his recovery on us. Staff, therapists and nurses have all said how important family and friend involvment is to ones comeback. So the reality is that we never get a break to just do normal things and spend time together as a couple, and it is extremely draining. I wish CNS was in Nashville where we have so many friends and family to help out, but such is not the case. Please take Maisie's advice to heart. Send mail, posters, pictures, collages, DVD's, goodies and most of all, come to visit! Michaels's phone number is (972) 580-8500 ask for apt. 21 He is inside most evenings and all weekend. He seems to perk up with a famiar voice. The conversation may be a little one-sided but thats OK. Ask yourself, if you were in his shoes, would he stand by you? Our address is 14700 Marsh Lane APT. 113 Addison, TX 75001 Post from Mom

Our support

Mr. Sluder's post is an accurate representation of my experience in Dallas.

Spending every single day with Michael like Mr. Sluder and Rosi do must drain every ounce of their energy and emotional reserve - a constant reminder of Michael’s tragic state. I absolutely cannot begin to imagine their impossible position, and agree that posting on the blog is only an added expectation and burden. We should honor that. They have been so selfless through this whole process and it is up to the rest of us to step up right now, continuing to push him, love him, believe in him, and most importantly to recognize him as... well... Michael. We will all experience doubts and fears, and ups and downs, but we hold on to hope because we have to.

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. 

Maisie

send him goodies!! pictures!! Sports magazines!! posters!!
14700 Marsh Lane APT 113
Addison, TX 75001

Can't sugar coat it.

I haven't posted lately because I really don't know what to say. Rosi and I are past trying to be strong or trying to be positive, we are simply down to the point of just trying to get through the day. You simply become very numb and don't care about much of anything. Rosi cries through much of the day and even though I try to go to work I cannot focus. I get asked 20 times a day about Michael by folks who I know mean well, but have absolutely no idea what they are asking.

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

New digs

Michael will be moving into a new apartment without a roommate, tomorrow. He will also have 2 Resident Assistants, which hopefully will help with some of the issues he has had. I must mention that CNS is doing everything to acommadate Michael so that he can learn and hopefully thrive. He is an especially hard case because physically, he is for the most part, healthy [and strong] but mentally not so. He is a flight risk anytime he gets it in his mind he is leaving. We are hoping that soon he will learn to accept where he is and begin his journey back. His speech improves every day. We see his emotions coming back and his ability to express his feelings in a simplistic way. Yesterday, Mike was reading to him from one of his books [The Road] and he started to cry and of course we both were comforting him. I said "Everything will be ok" and he responded, "I'm happy,just having ya'll hang out with me." Whew! That tugs at a parent's heartsrings. I wish CNS was in Nashville where he would have many visitors. We play music in the apartment alot and bust some moves, and of course he has a few of his own. His roommate seems to get a kick out of us. I will miss him when Michael moves. Maybe I'll plan a party in Michael's new place for a few of the guys. By the way, we recieved two collage posters today from of course, my friend Lisa Payne. Thanks girl, they are perfect...colorfull and I especially appreciate the larger photos because Michael has broken his glasses again . So bigger is definitely better! We are waiting for an appointment with a neurological Opthamalogist. It appears that Michael's sight is significantly changed. I wanted to mention that the collages are from his Europe trip with Jordan and Corey.....awesome and the other is of family and friends. Now that he has the whole apartment to himself, we can decorate all the walls, so come on friends-get creative. Make silly videos or DVD's that he can watch and laugh at. Did I mention we have an extra bedroom and comfy sofa, also a nice pool and HOT TUB! Oh yea Come see the sludacris anytime. We welcome you. Post from Mom

Lalapaloosa?

Friday night is music therapy in the lobby. Mike, Michael, and I joined in the fun, but we think Jordan was sorely missed. Maybe next year, hey bro? Michael's mood swings seem to be getting better. He enjoyed the poster of Hawaii that I'm putting together for him. I blew up several photos and made a collage on a corkboard. He was sleeping when we left. He goes non-stop all day from the time his feet hit the floor in the morning, which is usually early, until his body finally overrules his brain. We'll be back in the morning..........I might bring Maui. his black lab. I'd like to extend an invite to any of Michael's friends who would like to see him, and don't mind making a road trip, to come on out. You can stay with us in our apartment. It is so good for him to spend time with friends. Thats it for now. Sorry this was so boring but isn't it awesome that I have no bad news! Mom

Code 8!

Mike and I were at CNS yesterday for a counseling appointment at departure time for the residents. While in the lobby, we heard " Code 8 in parking lot" and immediately rushed out, and of course, it was Michael trying to leave. We can at least chuckle about it now. It will make it so much easier when his memory comes back, so he realizes why he is there. Yesterday was a pretty good day. He is able to complete his therapy sessions. His speech is also coming back- slowly. It sounds like the therapists are quite fond of him, which makes me feel better. The Doctor is tweaking his meds which hopefully will help lesson the outbursts. We are a little concerned about his ankles. He went to the emergency room last Thursday night due to very swollen ankles. The Doc there said he has a skin infection due to a wound on his ankle, but so far the swelling hasn't gone down. His ability to fight off infection is compromised due to his immune system. We will be touching base with the Doctor tomorrow. Back to Michael's memory. If anyone would like to help jog his memory, I have an idea! The walls of his bedroom are stark except for the collages Maise made for him. Who wants to help decorate Michael's room?!!!!!!!!He needs reminders of his life. Here are some ideas..... PICTURES BLOWN UP TO POSTER SIZE COLLAGES OF MICHAEL,FRIENDS,FAMILY,PAST EVENTS,OR PLACES HE HAS BEEN A POSTER OF A FAVORITE BAND [his friends would know] ALSO A VIDEO OR DVD MADE JUST FOR HIM TO WATCH EVERY DAY - familiar faces and voices might help bring his memory back. We played the graduation video that Lisa made and he was mesmerized by it. So friends and family, be creative and lets bring SLUDER back!!!!! When this is over and Michael starts his life again, I imagine everything that you contribute will be priceless to him. This is our new address: 14700 Marsh Lane APT 113 Addison, TX 75001 Thanks Mom [Nosey Rosi]

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

Downside

I went to the CNS center to ride the van back with Michael to see if it would have a calming effect on him. Sometimes he gets highly agitated doing this activity, so we thought it was worth a try. He was fine on the ride back, but was dozing. When I asked him if he was tired he said "no" like it was a ridiculous question. He started talking about his "Dad" and asked if the bus driver was his dad. I said no, and asked if he knew who I am. He shrugged his shoulders and said no. I managed to hold it together until I got back in my car, but the realization that my son doesn't know me is unbearable.

Back at CNS

The boys and I arrived in Dallas yesterday at about the same time as Miss Maisie. I was excited to hear from Mom that Michael had been moved back to CNS (The Centre for Neuro Skills)- the rehab he had originally come to Dallas for. This is great news after a month and a half in the hospital. We are back on the road to getting Michael well.

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.

We followed up these good times with chili dogs and Uno- Michael was able to read the numbers and colors.

This is all the good stuff- there are still a lot of struggles. He does get out of hand at times, "sundowning" around 7 pm. He continues to insist (as he has for the last 3 months) that he either needs to go to work or home. He gets desperate to escape, and does not take no for an answer real well. He still does not really know who people are, although as you can see he does know the difference between staff and people that love him. His words are still jumbled, and he takes time to process. He does not seem to be able to read emotion well or be able to exhibit it appropriately. He is confused and has very poor memory. He has a lot of things to re-learn.

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.

Ups and Downs

We're never quite sure what to expect when we step off the elevator onto the 6th floor. [Rehab] Everyone there is struggling with some sort of brain trauma. Michael is most definitely giving the whole staff a run for thier money-literally! His energy level seems to be endless these days, so he walks and walks and walks...the poor floor coordinator,who happens to love Michael, tells him shes going to lose tons of weight following him around. She says "Lord Michael, your going to give me a heart attack!" She is wonderful with him. He is usually friendly with the staff, handing out hugs and smiles, but a couple times a day he has what we call an episode. We are told that when the brain is healing, and the awareness of a person's situation increases, so too does the agitation and anger. When this happens, it takes at least 5 men to get him under control enough to administer his meds. I'm amazed because he only weighs 135 lbs. As his mom, it is very difficult to watch this so I just find a corner and have a good cry. I know he is getting better every day, and that sustains me. I usually show up around 11:00 so we can have lunch together. Mike comes at 4:00 and spends the whole evening with him. The hardest momentfor Mike is when he has to tell Michael he can't come home with him yet. Sometimes Michael tears up and it is heartbreaking! Today I sat in his bed with him after an episode and talked to him,explaining everything once again. He looked at me with tears in his eyes and so I held him while he cried. The frustration for him must be overwhelming. I love that boy so much...I wish I could trade places with him. I've even prayed for that but no answer yet. I ask the question often "Why Michael God, our sweet, gentle son? I don't believe I'll ever get a satisfactory answer to that question. I look forward to the day when he consistently knows that I'm mom. Thank-you to all of you for your emails, cards, help, and words of encouragement. We do so appreciate it. Hold your loved ones close and tell them how you feel. Rosi [Mom]

Fun

Michael is doing OK. He has surpassed several hurdles. He no longer has anything "plugged into" him, is eating real food (and enjoying it) and enjoys a hot shower just like the rest of us! He has an attendant that is with him all the time when Rosi and I aren't there, so he is basically back to living like a normal person.

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.

A good day!

Today was a good day! Michael passed the swallow test and ate his first meal today. He enjoyed blackened fish, mashed potatoes, mac-n-cheese, and ice cream. He had'nt eaten in 6 weeks. The therapists and nurses on the rehab floor seem to have a soft spot for him. It might help that we tell them alot of details about who he really is. We are mom and pops. He was active all day, walking, doing his therapies, smiling, flirting with the nurses, and tossing a ball with me and the O.T. I feel like he is mimicking us at times, possibly, while he works on retrieving his own speech patterns. For a long time his affect was flat and honestly, it was disturbing. Now he is making funny faces and hilarious sounds, so we just go with it and join in. I could be wrong, but, I think he is exercising his vocal cords and facial muscles after having not used them in so long. He is entering a difficult stage of wanting to leave again. He said very clearly, " I need to leave " and " I want to go to my place" We explained like we always do, his situation and that he can't go yet. He still has a long way to go, but today was a very good day! Mom

Not bad.

Writing this as I watch a new episode of "House". It helps me help the doctors in their trade. Kinda like well, no, I am not a doctor, but I did watch House last night..

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.

Most Likely to Succeed

I remembered the other day that Michael was voted Most Likely to Succeed in high school (HHS Class of 2005). I would now like to nominate him for Most Likely to Kick Encephalitis in the Gonads. Who's with me? (I know, this is a less spiritual post than you usually get from me, but I am feeling feisty today....)

Rehab (x2)

Michael has had quite a day. In the morning we got up and took a long walk followed by a shower! He is a strong lad and it takes my 200 lbs of solid six-pack muscle to handle him. (OK 200 +) He followed that up with some ice cream - yum.

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.

Walking

Michael was mostly aggitated today, and he can be stubborn as you guys know. His personality shows through when he just has had enough and decides to cross his arms and say no more crap today. Raised eyebrows and all.
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.

Dont be Afraid

Michael is getting the kitchen sink thrown at him as far as treatments. The doctors here are confering with lots of other experts and are determined to get to the bottom of what has been causing Michael's sickness. It is complicated and I cannot begin to go into all the considerations, but they are continuing to dig and have a couple of new insights that has them hopeful. If they are hopeful, I am all for it. His case has been anything but conventional and we are definitely getting outside of the box. We don't care as long as it is effective.

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.

One Less Thing

Michael just had a line taken out of his neck area that was used for the plasma transfers. It was a source of irritation and worry, so to have it gone is one less thing. It also was a source of an infection that Michael has had for a couple of days, so it had to come out. We will now be able to free his hands up much more and I know that will really help his progress.

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.

Calling all Believers!

This is a post from Mom.

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

Who are You?

Rosi and I got a good surprise after Michael had his third plasma treatment today. He looked at us and started spitting out words! He looked at me and scrunched his face and said "Really". I am sure my eyes got wide and he then said "No way" and "what". I said stupid and he told me back "you are stupid"! This went on for a few minutes before he got tired. It was fun.

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.

Fluffy

Well, Mom goes out and buys the ole gift shop stuffed animal, in this case it is a dog I will call Fluffy. She lovingly sets it in Michaels hands and says look honey what I got you. Michael promptly looks at it and then methodically takes it in his left hand and deposits it to the floor! Three times in a row! A dad could not have been any prouder. Mom was crushed (not really, we both laughed). Fluffy is now sitting on top of Michaels' IV machine.

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.

Technology

Michael had his first plasma transfer today. Kinda neat technology. It requires a high volume IV inserted into your jugular vein. A pump draws your blood out to a machine that has a centrifuge. The spinning of the centrifuge forces the red blood cells outward because they are heavier than the plasma. So your plasma is syphoned off and replaced with new plasma and pumped back into your vein. Or something like that. The old plasma contains the rogue antibodies that may be causing him problems. Michael did well.

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.

Next Step

Michael is having an EEG run for tonight, so his head is in wraps. He has had a couple of suspected siezures the last couple of days and they want to monitor that.
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.

Just feeling down tonight with all the waiting, tests, helplessness, incompetence, unanswered questions.... Thinking about a simpler time in our family. This picture is Michael with my now almost-7-year-old, Patrick. Just thought I'd share...

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!!

Super Sunday?

The SuperBowl is today in Dallas. Doesn't mean much to me. Our family focus is on one thing and that is getting Michael better. We wouldn't be much fun at any parties anyway. Still, I hope the Packers win because the Steelers fans are about as abnoxious as they come! I make this entry because it will serve as a milestone in the future with which we can readily associate his progress.

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.

Thinking about you brother...

Complicated

Well, Rosi and I braved the ice storm in Dallas and made it to the hospital. It was mostly a quiet day. Michael slept thru.
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.