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