UPDATE 10/19

Michele has had a great week so far since being back from her day trip home on Sunday.

Today, we took the van to her appointments, and she was able to travel by wheelchair. We visited with the Neurologist (Dr. Zacharias) and the Ophthalmologist (Dr. Utlaut). When we returned from the appointments, Cindy was waiting for Michele in her room. I gave her the updates as Michele nodded her head to agree with what I was saying, occasionally rolling her eyes as I told about the various problems we had to deal with during our visits. Overall, the news coming out of the visits was very good. Here are the highlights:

• The 3rd nerve in Michele's left eye has some damage. The nerve will heal on its own as the brain continues to make connections and she continues to heal.
• Michele can wear the patch on her left eye as needed to help her see the TV, pictures, and the computer better.
• In a couple of weeks they will assess whether a shunt adjustment needs to be made. The doctor agreed that moving the shunt up will allow them to see if Michele makes additional progress. If it for some reason sets her back, they will move the shunt back to its current position.
• She does not have fluid on the brain which they were concerned about a few weeks ago.
• When Doctor Z asked her to move her legs she was able to lift each foot all the way up. Dr. Z said that
because of her ability to move this way, she
will very likely walk again.

Michele is all caught up on emails and enjoys listening to them, but is not yet ready to respond to them herself . . . but keep them coming! It is great to hear what you are doing and how you are thinking about her and praying for her.

She is really doing some amazing things that show her personality shining though. Today, I was talking to Alyssa on the phone about her plans for the afternoon. Alyssa was planning to go to youth group, but wanted to visit Jordan in the hospital. I told her that it seemed like visiting Jordan was a good idea and Michele was nodding her head in full agreement at my decision.

Cindy put her ear buds in so she could listen to music during her nebulizer treatment. As she was getting her treatment, she was tapping her finger away to the beat of the music.

Yes that is me doing nails in the last picture! I found that I am good at many more things than I though I was even able to do. The motivation is very simple. What my wife wants and needs she will get if I have anything to do with it. As I tell her every day I love her with all my heart and I will never diviate from that not even for a second in time.

John

UPDATE 10/16

I have been busy so below is an email from Cindy about her visit with Michele on Thursday.

John

It was a really nice afternoon with Michele!

She got her food turned on at 12:15 and I put her boots on at 12:30. She and I both napped from 12:45-1:15, and she continued napping 'til 1:45.

I gave her a facial and we turned on some TV. On a commercial I asked her if she remembered what John's cell phone number was . . . I was wondering if she could write it on her board. She moved her left hand around as if to say "I'll write it" and she wrote 303-665-9157. The first "5" could have easily been an 8. She smiled when I told her that was right and that she was amazing.

Carla came in at 2:30 and first did 5 swallows of pink lemonade. (By the way, I mentioned the acidity of the OJ from Wednesday, so she is going to steer clear of that in case it was heartburn). Carla was making her work on quick swallows - not leaving it in her mouth too long so she wouldn't accidentally choke. Michele did FANTASTIC. Then, Carla had Michele say the days of the week. It was AMAZING how clearly she said all of them . . . especially FRIDAY! We all laughed when I said that it must be her favorite day of the week. Carla then had Michele name everyone in her family. She named everyone. Her mouth movements were perfect, although most of the names were in whispers . . . until she loudly and clearly in her own voice said "Mom" and "Dad". We laughed and cried and Michele was obviously happy with hearing her own voice so clearly as well.

Carla then did 5 more lemonade swallows with Michele and moved on to sisters. Carla said you have two sisters - who are they? First, Michele said "Cindy". Carla said right, who's next? Michele said, "Michele". We both smiled . . . Carla said, right, there's Cindy, Michele, and who else? And Michele said, "Amy". Carla said, let's try nieces and nephews and Michele shook her head no. I said that one of her nieces visited her yesterday with her boyfriend. Carla said, oh, what is your niece's name, Michele? Michele looked up and tried to think about it and then looked at me. I said, well, that's a hard one because we all call her Kenzie but her Aunt Michele always calls her by her full name, MacKenzie, and that is a long one. But, Michele took a deep breath and said MacKenzie in a whisper. Beautiful. She also said Taylor.

Carla gave her 2 more sips of lemonade and told Michele that she is going to have to set her goals higher because Michele keeps exceeding all of the weekly goals she is setting! Michele was very happy and worked very hard. It was amazing to see. We also talked about Alyssa's upcoming birthday and Michele told Carla that she was going to be 14 (she said 14). Carla asked her what type of cake Alyssa liked. Michele was struggling to say it so she wrote "Bunna". Carla repeated the letters to her and then Michele said "Banana". I don't know if that's the kind of cake that Alyssa really likes, but at least she said it!!!

After Carla left I got Michele comfortable and told her it was time for me to go. She started trying to say something to me but I couldn't understand what it was. I asked her to say it to me one word at a time but I still couldn't understand. I went through all of the body stuff to make sure she was comfortable, but that wasn't it. We were both getting frustrated. I said does it have to do with your music or the TV? She clearly said "Yes". OK, now we're getting somewhere!!! I said would you like me to turn your TV on? She said a clear "Yes". Sweet! Now we're making some progress! I said, "do you know what channel you want it on?" She also said, Yes! I flipped on the TV and then went through each channel slowly. She was moving her left hand around as if to say, "keep going, keep going". I finally ended up on Dr. Phil (the show we always watch together) and I say OH, DR. PHIL?!?!?! She smiled BIG and said YES! I said OK, so say Dr. Phil for me so I know how it sounds, and she said it perfectly. Whew! We were both sweating up a storm trying to figure that one out, but she really smiled at me when I finally got it! I said that Dr. Phil would be on 'til 4 and then I think Oprah is on . . . to which she closed her eyes and nodded her head. She already knew that.  I told her that Amy would be there mid-Oprah.

I really do try and keep these emails short . . . but they just get away from me. Lots of great accomplishments - again - today! Overall, a wonderful afternoon! She gave me the I Love You sign when I left, and when I kissed her on the cheek, she kissed me back.

Love,
C

UPDATE 10/11

Below are 2 emails written today by family. I think they speak for themselves.

John

AMAZING AMAZING AMAZING!!! I couldn't believe my eyes AND EARS tonight! Michele was absolutely entertaining this evening!!! John was there when I arrived, painting her nails. She was so annimated, smiling, raising her eyebrows, and yes - she stuck her tongue out at John again (at his request) and we all laughed. The look of accomplishment on her face is overwhelming.

She said "I love you" and "bye" to John. Just before she is going to say something, her eyes get really big and she's really thinking about saying something, then she takes a big breath, and out come the words.

After John left, he eyes got really big again, so I got close to her, and she took a breath and said, "I like your hair" pointing to her head. I couldn't believe it! I had my hair colored yesterday and was waiting for someone ALL DAY long to notice... and there it was. My sister... my amazing miracle of a sister told me with a smile that she liked my hair. Instant tears. Mike RN walked in and asked if everything was okay and I told him what happened.

Michele was AMAZING all night tonight! I put some new songs on my IPod and she turned her head from left to right bobbing in a groove to the music!!! Then she strummed her leg like a guitar and was wiggling her toes. I kept asking her if she liked the song that just played and she can shake her head YES like I've never seen before. Dr. Horton came in and she answered all of his questions, as well with Mike RN discussing what kind of meds she wanted. She completely lifted her right leg off the bed while I took the boots on/off.

When I left, tears in my eyes kleenex in hand, Mike caught me in the hallway and said "are you still crying?" We both agreed that Michele is a different person today. She has turned a corner. She is truly amazing.

On my way home, I called John and Cindy to tell them the amazing things Michele did. It wasn't like off and on, she was ON the whole time I was there. Cindy told me that before she left on Sunday, she said the rosary out loud to Michele and they both prayed for a miracle. Cindy begged Our Blessed Mother, as Michele is a Mother herself, for a miracle. That prayer was answered.

Hail Mary full of Grace the Lord is with Thee. Blessed art Thou among women, and blessed is the fruit of Thy womb Jesus. Holy Mary Mother of God, pray for us sinners, now and at the hour of our death, AMEN!!!

Michele's sister Amy



Oh my Gosh!! I'm changing Michele's title to Amazing, Miracle Michele.
When I got to the manor, Michele was resting before her trip to BCH to get her tube changed. We headed out a little after 2 and then waited and waited at the hospital till they were ready for us. Michele's toes were just dancing while she was laying on the stretcher. I said to John, "look at those dancing toes" and she started to do it even more and had this big grin on her face. It was so cute.
Today she told John "I love you" and she said "Mom" "No" and "Bye". It's so exciting. You have to remind her to take a big deep breath before she tries to say anything. She also stuck out her tongue at John--he asked her to!!
We got the tube changed--back to the same one that Dr. Chetham put in two weeks ago. The one that Dr. Miller put in last week was definitely the wrong one and one of the technicians even said that it was the only one they had in stock, so that's the one they used. WRONG!
The big issue is the lack of flushing the tube before and after the feeding tube is put on or taken off. I suggest that each time a caregiver goes to the Manor, we ask the RN to come in and flush the tube. Even if they said they did it a half hour ago, get them to flush it again. That's the only way we will keep it flowing.
It was a good afternoon, even though we did a lot of waiting at the hospital. The procedure only took about 15 minutes.

Michele's Mother Sue

UPDATE 10/9

It has been a busy week. Michele's feeding tube was clogged again last Sunday right before we were to travel home for a visit. She has 2 tubes in one and the smaller one that is for her food was clogged therefore we just used the medicine tube to feed her until we could go to the hospital on Monday.

So we were not going to let this little problem spoil our trip home. I was at the manor at 9am and Michele was dressed and ready for go when I arrived. The yellow cab van was on time at 10am and off we went for our 8.5 mile trip home for the first time since January 19th. I sat in the back of the van talking to her and explaining what to expect. She was in her wheel chair and could see outside the front window of the cab perfectly and when we turned onto our street her eyes opened wide. Since I was facing her I did not see what she was looking at until I turned around to see for myself. We had about 60 family, friends and neighbors covering the street holding purple and white baloons. Many were written on with note of love and encourgment. I asked the van driver to back into our garage so we could unload Michele on an even surface and once she was out and the van left she got a big cheer for everyone. "WELCOME HOME MICHELE" words cannot explain the overwhelming emotion of appreciation I felt to see so many people routing for my wife. Michele was given her own baloon and I asked her to release her first and she did and the rest soon followed. Michele spent a few minutes outside so she could see everyone then when she was ready she motioned that she was ready to go inside. Once inside she did get sick for a moment and soon it was over and we got her in her recliner and she relaxed for the next 2 hours. She had a wonderful time and within 3 hours we were heading back to the Manor.

When I returned home I ate lunch and went to my room while many guests were still at the house and I slept for 3.5 hours. I think I hit my pinacle over the last 8 months and my body and mind just gave up on me. I have been pushing and working to help Michele for so long that once I got her home and all went well it was like someone turned my power swich off. I cannot even remember walking to my room or laying down. When I woke up I went down stairs and everyone had gone home.

Now that i know we can do this and she did great i will be working to take her home every other week. Next Sunday we are going to try for 4 hours however we will not have the fan fare we had last week. It was great for the first time and I want to thank everyone who attended as it was a wonderful experience. We even received pictures of my family in Florida that did baloons at the same time.

Michele will start working on her computer this week and she will start sending emails very soon. If you would like to help her please send her a quick note so she can reply. Please do not expect to much and she will be typing her own emails and they may be hard to understand at times. I want her to work hard on this so i will not be making changes to her emails. What you get is what she will be typing. This will be part of her therapy. So please send emails to her at miko@pinnaclelease.com and she will reply as soon as she can. Again if you have a picture of yourself so she can put a face to the emails that would be helpful but not required.