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]