Good Morning!

We're going through some neurological changes right now that are different from Chris' usual behavior. For instance- his eyes have started crossing! I had to leave the therapy session- I couldn't watch it. I talked to the neurologist in charge and he said it is probably a good thing. It might mean that Chris' eyes were starting to track-which would mean he might be starting to see. So I guzzled down my alka seltzer and went back to therapy.

Chris was in the standing frame today. Its great to see him standing up. He worked with the speech therapist with his Dr. Pepper popsicles Jen and I made him. They don't look appealing to me but he likes them. He will only get a little bit of it as he doesn't really suck on them. But he gets some.

We took him out on the hospital grounds late this afternoon. He would not open his eyes outside. We'll try again tomorrow.

Barb

Hi Everyone-

We're hanging in there - Chris has remained healthy for several weeks now. Id like to think we're over the hump and we can cruise a bit. But, I know we have to remain ever attentive and cautious. Good things happen slowly and bad things happen very fast - It's the rule we all live by here.

Kerry and Toni were here today. They haven't seen Chris since UMC (ICU unit). They were so happy to see him with his eyes open and getting in and out of his wheelchair. Toni gave him a haircut - One side of his head was shaved for the last surgery so she evened it all up. You'll never believe how dark his hair is growing back.

The therapist team had him standing today in the standing frame. He did great - his breathing was nice and even and he looked so good. You can't imagine how wonderful it is to see him do these simple things. Chuck will be able to see him stand while he's here this week. It's like watching a baby learn all over again.

Love Barb.

Good Morning,

Chris had a good weekend. He had visitors from home. Luis, Yvette and her sister Joanne came in on Sunday. Marshall, Tonya, Carm, and the "new" baby, Alyssa, were all here Sunday and Monday. We had a wonderful time. Marsh and Carm came to therapy today. They got to see Chris sit on the side of the mat. His feet were on the floor and he had both his arms braced and he sat up by himself for two minutes! We had a room full of people and we were all excited. On Friday he was on the tilt table (he lays flat and the table goes up to get him into a standing position) and he was up all the way-the therapist asked if he wanted to go back to bed and he nodded his head. So we have had a lot to be thankful for this week. Mostly I'm thankful he's been healthy. We do have a problem with granulation tissue above the trach. Surgery would correct it but no one wants to do that so they are trying some medicine. But, the medicine messes up his electrolytes! But, we'll fix it!

Barb

Hi Everyone!

Jennifer is coming in this morning-Chris and I will be so happy to see her. Chuck is going to stay home over the weekend and race Chris' sportsman car. But, he will be here during the week. Marshall, Tonya, Carmella, and the new baby are coming on Sunday. I'm so excited! I'm anxious to see Alyssa. (Everyone else too)

Chris had a good day. There are always slight neurological changes going on. I never understand if they are good things or not. He started turning his head really hard to the right and making ugly faces when I tried to brush his teeth. It's different from the rest of the week and hard to understand.

I started taking Chris to the chapel every night. The hospital has the most beautiful chapel and it makes us feel so good. Chris had a new chest X-ray yesterday. Dr. Brown said it was the BEST he's ever had. He has no reason for it getting clearer. Perhaps Chris' prayers are being answered?

Love,Barb

Good Morning,

Chris and I had company yesterday. Judy and John were here all day. It was so nice to have them visit. They both gave blood for Chris' bank-just in case he needs it again- and I'm hoping he won't. That was a wonderful thing to do. Thanks to both of you.

Chris has developed some problem with his breathing with the cap on his trach. There is a chance there may be some scar tissue forming a small blockage causing some difficulty in breathing. This would mean serious surgery, which no one wants to put him through. But, we won't know without more x-rays. It could also be that his tongue and his jaws are just not working properly yet. If that's the case, we hope he will adjust in time. Otherwise, he is continuing with therapy and we see small changes.

Love,Barb

Good Morning!

Chris had a good day on Monday. His trach was plugged all day and he did well the whole time-even through physical therapy. The sounds he makes are pretty sad, but they are responses to how he feels. Right now they're all we have. We hope we'll be hearing more. One of his doctors reminded me today that "Good things happen slowly, and bad things happen very quickly." And that's true!

During his two sessions of therapy, he laid on his stomach and still had no problem breathing. We saw some positive movement to commands with his hand and some movement away for pain (sand paper on his legs). The speech therapist also tried Dr. Pepper again. Chris really does well with it! He tries to get it and has good swallows. I used to hate that he drank so much Dr. Pepper-now I am glad!

It's cold and overcast here. I miss the sunshine.

Love to all,Barb

Good Afternoon!

I wanted everyone to know that Chris is going into the weekend in good shape. After the scare a few days ago with the very low temp. (94.3) and the low blood counts, everyone was sure he had some major infection going on, but, yesterday all the blood counts jumped up and the preliminary lab reports show negative. It's the consensus of the doctors that an infection was trying to get a hold on him, but he fought it off with no medication! I'm so happy to know that he can do that!

This is Chuck writing now-

Barb went home for the weekend. Dr. Brown said as of today (7/20/97) cap off the trach from 7am to 10pm everyday. It's been about 8 hours and he's breathing through his mouth and nose very well. Chris will make some noises sometimes when he is uncomfortable. It sounds like groans and moaning. He also makes snoring sounds. Actually, it's wonderful to hear the noises. We're hoping for words!

Love,Chuck & Barb

Good Morning!

Jennifer and I just came down from Chris' room. He's sleeping right now and he's comfortable for the present. But, he has to have his position changed every hour or so. There's quite a trick to turning a 200 pound guy! We're getting lots of practice.

Chris is still in isolation-he still can go through the other areas of the rehab unit because the VRE is not airborne. But, we have to gown up to move him in anyway. He's going to physical therapy twice a day. Again we're waiting for signs of communication. There was thumb movement to a command yesterday. There are 5-6 people standing over him each day concentrating on his hand-willing it to move. You can't imagine how excited you can all get over the slightest movement.

On Tuesday, there will be a session on "capping" off his Trach. This will be short term-15 minutes or so. We're very nervous, because we will hear him make sounds and it will be sad for us.

Barb

Hi everyone!

Almost half of July is gone-it seems like time stands still, but at the same time, it seems like we've lived in this nightmare forever! How can we feel both ways? There are no answers.

Chris spent all weekend in good health and basically alert most of the time. His surgeon was in on Saturday and confirmed that the shunt was still working.

My mom went home on Saturday morning. (After two flights were canceled!) We really enjoyed our visit and she helped me with Chris and his move back to rehab. Chuck was here all weekend and he and I made all Chris' transfers from his bed to his wheelchair. It's quite a job! He still weighs about 200 pounds, so the transfers are made with a lift (hoist).

Jeanie Saxton and her friend Sally were here yesterday to visit and bring us pastries. Thanks Jeanie!

Jen is here now and I know Chris feels her love. He was very relaxed when we left him at midnight.

Love to all,Barb

July 11, 1997 Good Morning! We're back in a routine in the rehab unit. Chris is getting dressed in his own clothes again and he has a physical therapy schedule. I wish I could tell you he's doing marvelous things and making tremendous progress, but, recovery is so very slow. He has to start all over again just getting to a sitting position and back in his chair. All of that has gone very well. He has no trouble getting up and he sat in his wheel chair for two hours yesterday with no oxygen or mist to his trache. The therapist thought he followed commands to lift his head and to move his fingers on his right hand. We'll try all of that again today. He has to make some progress or the insurance company threatens to stop the rehab benefits. They want all of his doctors to send a prognosis in seven days. We'll see what they say.

Love, Barb