Peter David's Blog, page 73

Your Semi Daily Peter David Report for Jan 15 2012

UPDATE ON PETER:

Yesterday he walked 25 feet with a crutch but no other assistance. This is yet another big step in his recovery. They have also upped the number of hours that he is in rehab therapy, which is a good thing indeed. He also finished a script for a project I can talk about shortly. So he is working on getting back to us and is just working on various projects. Dragon Dictate is working for him and what he needs to do at this

time.

UPDATE ON THE SITES:

Yeah, we got hit pretty badly with some malicious code that really screwed up the system but Glenn and his team have been working on the sites and getting things back up. My web log is still down so just remember I am Puppetmaker40 in live journal and I copy what I do in my other weblog.

Until I know things are stable, I am not doing the Phluzzie Raffle.

And since I have been asked here are what Phluzzies are

These are my signature puppets. I can do all kinds of colors for them. They are hand puppets big enough for adults. They are not for small children as they do have small parts but bigger kids love them.

Caroline was wondering if anyone might be interested in an original Caroline drawing to help her Daddy.

Crazy 8 Press is still the place to send people to get Peter’s books. The momentum has been amazing and the further we get this out on the net, the better for Peter and us. You all need to take a moment and pat yourself on the back for all the help you have been in this.

I know the donate button is still pending. It is a combination of a couple of things that have to be sorted out before we can put it up and actually get the money. If you haven’t heard what happened to author Jay Lake recently (and we send him many good wishes for his battle again a very aggressive cancer) and Paypal, you might want to give this a read.

Ariel wants to organize an online auction, which she is at the beginnings of. She will be posting about it here once that is sorted out.

JK Woodward is organizing an art auction for Peter. JK and Peter have worked together on Fallen Angel and other projects for a number of years. More on that when I have the details.

UPDATE ON THE REST OF THE FAMILY

Shana is being a good daughter and keeping an eye on her dad and his care while he is rehabbing. I couldn’t be as calm as I am now if it weren’t for Shana.

Gwen got to see her dad last week and Peter really enjoyed her visit.

Ariel is back at college and ramping up for the next semester. She has a good support system up there that is helping her with various things she needs help with.

Caroline is getting back into her groove at school and her after school activities. She does have some sad moments and some sad dreams but that is to be expected. She is use to having both her Daddy and her Mommy around the house all the time. Right now she is dealing with a Daddy sized hole in her life. They talk every day via Facetime so she can see him.

I am doing OK. There are moments when things seem overwhelming but I can get back to just being whelmed pretty quickly. I am going to the gym to keep my body moving and get my exercise mood up-tic to counter some of the rest of this mess. I am eating and taking care of myself. As I have stated before, I am so grateful for all your good wishes and kind thoughts. Knowing people have my back in this is such a big help for both me and Peter.

I am grateful for every piece of paperwork that gets done.

It Is The Little Things That Make Me Happy Right Now

Fezzig: You just wiggled your finger. That’s wonderful!

Wesley: I’ve always been a quick healer. -The Princess Bride

I have learned or relearned more about how our muscular system and nerve system works in the past two weeks than I have in years. After one has a stroke, there can be a couple of days of aftershocks as the body and the brain sort out what happened to it. The total effect of the stroke might not be known for a while.

Where Peter had his stroke is where the motor control of the body really routes to the rest of the spine and through out the body. In his case, the right side of his body was severely affected. From the time he got to the hospital on Saturday and till New Years Eve, we weren’t sure about a lot of things except he was alive which for me was the important thing and that they were working on keeping him that way.

By News Years Eve the crisis had passed and the damage was done. As we watched the ball drop in Time Square, we seem to turn a corner. He never lost sensation in any of his limbs but he didn’t have any motor control. As the New Year rang in, he was able for the first time in a couple of days to move his hand to close it around the fingers of Ariel who was holding his hand. He then light gripped my hand as well.

From that point he has been working on that grip which has been getting a little bit every day. However if he wanted to extend the fingers, he had to help the hand to flatten out. We all worked hard to keep the tendons from tightening up on him making it harder for him to spread his hand flat. Once the tendons either lengthen or shorten, it makes it just that much harder to get range of motion back in that part of the body. So we have been fighting his body to keep him where he was before the stroke.

Yesterday he could open his hand on his own. Not with his other hand or someone else spreading his fingers, his right hand responded to his brain’s command to flatten out. Now he has to work at it, but he can start to do it. The more of this he can do without assistance, the better it will be for him in the long run.

He still has a long road but he keeps moving forward with determination.

He also started getting back to work again. He had the time and energy to conduct some business and answer some e-mail that I really didn’t have the answers for. His replies seem a little more terse than usual but that has more to do with trying to get things done so he is short with his wording to get the idea across. He is doing what he can to get himself back to where he was.

I am grateful for every finger wiggle and toe twitch.

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How to Help Peter version 1.0 and some housekeeping notes

First off, Caroline and I are home. The trip was as uneventful as trips go and that was a good thing. The TSA staff in Atlanta did a really good job of keeping the line moving in an efficient manner with a good dose of Southern Hospitality. The Delta staff was helpful to us getting us on and off the plane. We had a very nice seatmate, a Delta Pilot, which always makes the trip easier. And the guy in front of me didn’t move his seat back so my knees were comfortable the whole trip. The car service picked us up and got us home. The cats were so happy to see us. Caroline’s cat, Fig, attached herself to Caroline once she came through the door and spent most of the rest of the evening within arms reach of her.

The only thing that was missing was Peter. Caroline really noticed it when we were going through security. She kept looking to her left. I asked her why and she thought about it for a minute and said that’s always where Dad is when we go through security. Her lower lip quivered for a minute but she took in a breath and slowly let it out and we went on.

As of today, I am moving back to my web log for the day to day about daily life and what is going on. I will be posting here on Peter’s site with an update on Peter probably about once a week or more if there is something big to talk about. On my web log I will be talking pretty much daily about life, the universe and everything which long time readers will tell you that is pretty much what that web log has been. If you are on live journal, I am Puppetmaker40 and have been for many years now.

UPDATE ON PETER:

He is now, with assistance, walking both forwards and backwards. He is working on balance and trying to get the right leg to cooperate with what he wants it to do. There was a minor set back with the arm that is being worked on. He does have a better range of motion than he has had since all this started so we are cautiously happy about it but he has a long way to go.

We were fortunate that they started working his body before he left Florida hospital. They managed to keep him to a point that he could start rehabbing. There are still some issues that just occurred because he lost muscle control on the right side of his body. He never lost feeling on the right side so that is seen as a positive. However there is only so much that can be done and he is working back from that.

UPDATE 1.0 On How You Can Help Peter

A number of you have asked where you can send cards, well wishes, etc to Peter.

Send them to his PO Box and I will be sending things onto him at the rehab center once or twice a week.

The address is

Peter David

c/o Second Age, Inc.,

P.O. Box 239,

Bayport, NY 11705.

By Monday we will have the donate button up and running.

There will also shortly be announcements about an online auction and a few other activities that will help Peter. I have to be a bit vague because we are still trying to get all our ducks in a row.

I cannot thank you enough for promoting the Crazy 8 Books. It has been a great comfort to us. And I am glad to read that people are enjoying these books.

I am thinking of making a couple of my Phluzzie puppets and doing a raffle for them online. I am working the details out on that one. My question for the group is “Is there any interest in this?”

EDIT HERE IS A PHOTO OF SOME PHLUZZIES

So please check by on Monday where I will have more things in place and clearer ideas of other plans to help us help Peter.

Again thank you for all your positive energy and help. I really have no idea how I would be making through this as sanely as I am without y’all.

Remembering to Breathe

I have been taking a Tai Chi class for a while now. It has helped balance, joints, and body awareness. One of the things I have learned is how important it is to breathe and how not breathing correctly is not great for the body over all. I haven’t been the best about breathing normally recently. I find myself breathing very shallowly or holding my breath without realizing it. I have to pause and consciously remind myself to breath normally.

Part of this I think comes form all the recent unknown that has dropped into our lives. Waiting for Doctors to tell me news both good and bad and hoping that the good will out weigh the bad. Getting almost to the next step and then being stopped by various things. Not knowing when I will be able to go home and pet my cats. Not knowing when things will return to normal and knowing that they never really will but I would like to know what the new normal is.

Caroline wants to go back to school. She wants the routine and seeing her friends and teachers. I would like to get back to the house and some of the sort of routine that I have.

Now we know when we are going home. We have plane tickets tomorrow to fly back tomorrow. She wants to go back to school on Friday.

Peter is adjusting to the routine at rehab. He likes that he is wearing clothes rather than hospital gown and that he is being allowed and encouraged to do as much for himself as he can. He knows it is the beginning but at least it is beginning rather than sitting around wondering what he is going to do next.

We slowly are picking up the pieces of our lives and figuring out how they fit together. We are remembering how to breathe.

Remembering to Breath

I have been taking a Tai Chi class for a while now. It has helped balance, joints, and body awareness. One of the things I have learned is how important it is to breath and how not breathing correctly is not great for the body over all. I haven’t been the best about breathing normally recently. I find myself breathing very shallowly or holding my breath without realizing it. I have to pause and consciously remind myself to breath normally.

Part of this I think comes form all the recent unknown that has dropped into our lives. Waiting for Doctors to tell me news both good and bad and hoping that the good will out weigh the bad. Getting almost to the next step and then being stopped by various things. Not knowing when I will be able to go home and pet my cats. Not knowing when things will return to normal and knowing that they never really will but I would like to know what the new normal is.

Caroline wants to go back to school. She wants the routine and seeing her friends and teachers. I would like to get back to the house and some of the sort of routine that I have.

Now we know when we are going home. We have plane tickets tomorrow to fly back tomorrow. She wants to go back to school on Friday.

Peter is adjusting to the routine at rehab. He likes that he is wearing clothes rather than hospital gown and that he is being allowed and encouraged to do as much for himself as he can. He knows it is the beginning but at least it is beginning rather than sitting around wondering what he is going to do next.

We slowly are picking up the pieces of our lives and figuring out how they fit together. We are remembering how to breath.

Now We Move Forward

Yesterday morning was more exciting that I would have liked. We had to get one more Doctor clear Peter for rehab. There was then a slight hold-up on the other end of things at the rehab who were waiting for clearance from the hospital on the white cell count. Once everyone was satisfied that he was OK, we started the process of getting him from point A to point B which had a lot of hurry up and wait attached to it.

In the middle of all this I got Ariel to the train station to take the train from Orlando to Bridgeport CT. I am happy to report that she made it back to her college and made a new friend on the train as well.

Eventually we did get him to his current location. I like the rehab center and how they do things. This is probably the best fit for him and will get him back to us as soon as possible. They outlined the plan for his recovery and told us what a typical day was for him. Caroline got her questions answered as well.

But this is still the beginning of a very uncertain journey

Eventually we had to say our good-byes to Peter. Caroline didn’t take the parting well. Today she is a little off her game and a bit sad which is nothing unexpected.

Today Caroline and I drove to Atlanta and returned the rental car which was more of an adventure that I would have liked but the person at the counter was amazingly helpful and did everything she could to get the price down.

Now I get to check in daily with various people on staff and with Peter about how things are going. Today was mostly evaluation and the beginning of the game plan to return Current Peter David to pre-stroke Peter David. They did having him walking again.

I want to say again how much I appreciate all the support you have been giving us. It really helps to know that people have your back. I have read every comment, e-mail, message that has come across our e-mails and am touched by how many people have Peter in their thoughts. Y’all (I can use it, I grew up in the south) are a great group of folks and I will never be able to thank you enough.

And he is cleared for rehab

We are waiting for transport to get him to rehab. He has been released by the doctors for rehab.

Just wanted to update this.

Kath

Peter WALKED!!!!!!

That is the big news from yesterday. He stood up and with assistance he took his first steps since this whole thing started. They were few and we had to convince him to stop and sit down but he did walk. We had a good happy cry after that one.

In other good news, he spent most of his day sitting up in a chair. Baby steps but each is a jewel right now.

We are waiting for two other doctors to sign off on getting him to rehab so cross your fingers that we will be doing so. I will know some time this morning and update this post as to whether we are going or not. I am packing everything up and assuming that we are going so we can go from Orlando to Jacksonville with him and set him up in his new digs.

Ariel is taking the train from Orlando to Bridgeport today. So either way, she is starting her travels home. She needs a ride from the Bridgeport train station to her dorm room. Could the Usual Suspects that have her phone number arrange to help me get her there? Contact Ariel for the details.

After we get him settled, I am taking Caroline to Atlanta to my parents’ house from which we will depart for home. I have to return the rental car and the like. Whole bunch of new details come into play at that point but I am hoping to get her back home with her cats and familiar surroundings.

Then we wait and hope that we can get Peter back to us as soon as possible.

I will be continuing to update things on Peter’s site and on my site as I have information and the like.

We are still working on the donate button but should have something in place along with an auction to pay for the bills that we are looking at with some abject terror. But more on that later in the week when I have a moment to think things through. Right now I am still going from moment to moment solving things as best I can.

If you have gotten in touch with me and I haven’t responded, I do apologize. I will be going through my e-mail and Peter’s and get back to people in a couple of days. This goes for Facebook friending and notes and a lot of other things.

Right now my focus is on Peter and getting him where he needs to be so that he can get better and come home.

I am grateful to everyone who has helped in this situation and to everyone who cares about Peter. It means a lot to him and a lot to me.

Taking it Day By Day

A few housekeeping notes:

If your comment doesn’t go through the first time, give it a little time. We have the filters set pretty tight and we have been pretty good about checking it several times a day.

I know there are duplicate comments. I will be cleaning that up at some point but right now don’t worry about it, just go onto the next comment.

I ask that you remember that the girls and Peter are reading this site every day.

Thank you

THE PETER UPDATE:

Progress is slow and Peter is frustrated which is perfectly normal for him to be so. He is working well with the PT and OT staff. They are still working on the white cell count but it is becoming closer and closer to be declared an aberration and let’s move on.

If you think of it, we don’t know our white cell count day to day. We are having our blood drawn one or twice a day and put through a battery of tests (OK may be a few of you are but you are in the minority). So a change in the white cell count could just be how his body can react to stress and believe me, his body has been stressed recently.

So cross your fingers that we get the GO on Monday to move Peter to the next step and get him working back to his old self.

He is spending more time sitting before it gets uncomfortable. The more he is up, the better it is for his body.

Yesterday was an interesting day. We made plans to get together with our friends at Disney Hollywood Studio since Magic Kingdom is still blacked out for cast members. Caroline was meeting up with her friend EM. Ariel and I were looking forward to meeting up with G, her dad and ER, his fiancé. Yes, I am being a little squirrely about the names but G and ER both work for Disney and are cast members in the parks so I am respecting their privacy. We met G for the first time by name the night we got engaged.

Peter encouraged us to go. I left him his cell phone so he could follow along with pictures and texts and if he wanted to call us which he did a couple of time to check in.

We went to the park and tried to get fast passes to Toy Story Mania but those were gone probably within an hour of the park opening to the general public. So we went over to Star Tours and got fast passes for that. Ariel and I decided to take Caroline on the Great Movie Ride which she doesn’t remember being on. She declared that she both loved and hated it. Hated the Alien which of course dropped RIGHT over our heads but loved other parts a lot. We caught up with GEE after that.

Disney Hollywood was pretty crowded. But we managed to walk around and get some lunch at one of the fast food joint. Our fast passes were good at that point. Ariel gave her ticket up to EM so she could ride with Caroline. I took the girls on and we had a good time (For those keeping Star Tours score: Imperial Droid, Pod Race, Princess Leia, Gunga city). After that we rejoined the rest of the adults in our party.

Now I knew intellectually about “triggers” and try to be a good net citizen by warning people when I am talking about subjects that might cause them some distress. I haven’t put any here because we are talking about stroke and the effects on the patient and the family and that’s the current topic here.

I was walking with G, EM, and the girls when I noticed Ariel had that expression on her face that I remember from when she was child. Something was bothering her. So I asked G to take care of Caroline while I talk to Ariel.

It was the park and seeing Star Tours that caused her to just let loose the flood of tears I have been waiting for since this whole thing happened. I have been joking with her about her brave little toaster face but I knew that she was hurting and sad and angry all at the same time. I let her just talk and tell me her fears and frustrations with all of this. She was playing the blame game with herself with all those lovely woulda, shoulda and couldas that have become part of my regular thinking along with Peter’s. We had a long talk about that it wasn’t her fault and all the good things she had done for her father and the rest of her family since this all started. She felt better I think for letting it all out.

Caroline’s trigger was the Christmas light show they are doing on the back lot of Disney Hollywood Studios. She was watching with wonder at all the lights and the music and looking for the hidden Mickey’s in the lights. It is very impressive. She turned to me with tears in her eyes and said, “I miss Daddy. He would love this.” I held her among the holiday revelers all around us as she cried it out. Ariel got the idea to tape the whole scene so we could show it to her Dad, which made Caroline feel a little better.

We rode Star Tours a couple of more times thanks to Fast Passes. Ariel thinks she is doomed to Hoth since she has seen it EVERY TIME she has been on the ride. But she did get some different secondary pieces.

I dropped the girls off where we are staying and went back to the hospital. Peter called me to check in when I had just turned off the car in the hospital parking lot. We spent some time together and watched the repeat of SNL. I told him about what had happened at the parks and that the girls were doing better. He told me about his day and I talked to the night nurse who is a real pip. She and Peter get along really well.

I came back and poured myself into bed and had one of the better night sleeps than I had been having.

Today we go back and see how Peter is doing and take it from there. One day at a time and one foot in front of the other.

I am grateful for all the support systems we have around us that are helping us with this crisis. And I am so VERY grateful to all of you for spreading the word about how to help Peter. It is working. I ask for your continued help in all this.

From Caroline’s Point of View

Peter Update:

Two steps forward and one step back. We had everything in place to move him to rehab however his white cell count was up and the hospital won’t release him unless they know why it is up.

Peter under went a battery of tests, which took a little long (OK a lot longer) because the computer system was down so most of the day was hurry up and wait.

Over all he was pretty out of it. He did his rehab and the other things that he needed to do but he dozed most of the day between people having to wake him up for the things he needed to do. He was much more alert at night and we watched some videos together.

Today we find out the results of that test and what is next. We are hoping to move him to the rehab on Monday since this gives the hospital two days to get him back to where he needs to be for rehab. Cross your fingers that his bed is still there then.

Now here is Caroline (with me typing) about what has happened

At first when I found out, I didn’t feel very well and I thought this was going to be the worst vacation ever since my Dad was in a hospital bed.

When I saw Dad in the hospital bed I was scared and upset. But Dad made me feel better. He hugged me and talked to me.

He told me that he was going to be going to a different hospital so he could start walking again. He was going to be all right but he may be gone for a month.

Later Mom and Ariel took me to Disney Hollywood Studios, I barely talked to anyone because I was worried about Dad. Ariel tried to hug and comfort me but I just pulled away.

Then we went on Star Tours. I was still really angry and worried about Dad. After the ride I felt much better. I could laugh again. But I realized I was having fun and Daddy wasn’t there. Mom told me that Dad was happy that I was having fun so we went on the ride again. After that in the gift shop I built a droid and Mom built Skippy the Jedi Droid for Dad and put a pirate hat on it for fun (Dad has to wear an eye patch).

On the 2nd Day we went to the hospital in the morning and I spent time with Daddy. I was helping him with his hand exercises. Later Mom took me to Animal Kingdom and we watched the Tigers who were very active. I felt safe with my Mom at Animal Kingdom. I felt a little better about all that had happened.

On the 3rd Day we stayed at the hospital all day and watched “Big Bang Theory” with Daddy. I felt really good that I was near Daddy all day and could see his life in a hospital. I was proud at how hard he was working to get better.

On the 4th Day I found out that he wasn’t going to rehab until Monday, which made me happy and sad. Happy because I got to see my Dad another couple of days but sad because I know he needs to go to rehab to get better and come home.

Overall I feel happy because I realized it wasn’t my fault that Daddy had a stroke but I also feel really sad because Dad had a stroke. I love him very much and I want him to be OK again. I am praying for my Daddy to be my Daddy again.

(Kath back here now. I will be reading her the comment that relate to her from this entry.)

I am grateful that Caroline can talk to us about what she is going through.