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.

Here is how YOU can Help Peter

But first the daily Peter David Update: He was able with assistance to get up and sit in a chair where he spent most of the day. He worked with his various physical therapy and occupational therapy personnel on continuing to strengthen his arm and leg. The eye seems to be correcting itself a little but that’s going to be looked at in rehab as to what they can do besides a stylish eye-patch. He also revised an X-Factor script for his editor at Marvel, which I think made him feel good/more normal than he has been feeling.

Remember the waiting game? Well we MIGHT be moving him to his rehab facility but it is not a done deal because they don’t like some of the markers in various pieces of blood work. It may be an aberration and they are going to test him six ways from Sunday this morning to give us a go or no go on his going to rehab today. We have all the pieces of the jigsaw puzzle in place except the Doctor’s OK to go.

Hard to believe that one week ago all this started.

Now HOW YOU CAN HELP

Even though we have health insurance we have co-pays and the like. And since this stroke fell at the end of the year, we have all the new co-pays to deal with (I can honestly see those of you who have had to deal with this nodding your heads). And there are things that the insurance company just won’t cover (more head nodding). So we are at the beginning of what is going to be a very expensive year even though we are only 4 days in.

The most direct way is to buy his books from Crazy 8 Press (via ComicMix) or from Amazon or Barnes and Noble websites. These are books that he gets the money from directly and the most per book.

His current Crazy 8 Press books are:

Pulling Up Stakes Part 1
Pulling Up Stakes Part 2 (Brand new)
This is one novel broken into two pieces. This is the cover blurb
Sick of vampire books? Movies? TV shows? Yeah. So are we. Sick of the entire unlife of vampires? Yeah. So is Vince Hammond. Unfortunately, Vince is in it up to his (wait for it) neck. Because Vince is a young vampire hunter who lives with his vampire hunter mother in an entire community of vampire hunters, who in turn are part of a cult of vampire hunters going back all the way to the French Revolution, which many believe to be an uprising of the poor against the rich but was actually a massive purging of vampires from the French nobility (hence the guillotine)

The Camelot Papers
A powerful ruler who’s considered by many to be simple-minded and vacuous and has serious father issues. A no-nonsense, polarizing woman who favors pants suits and pursues dubious agendas involving social needs. A remarkably magnetic leader of men with a reputation as a skirt-chaser. A scheming, manipulative adviser who is constantly trying to control public perceptions. A man seen as the next, great hope for the people, except there are disputes over his background and many contend he’s not what he appears to be.
George W? Hillary and Bill? Karl Rove? Obama?
Try Arthur Pendragon, Guinevere, Lancelot, Merlin, and Galahad.
Whatever you think of the state of today’s politics, The Camelot Papers shows you just how little matters have changed in the past thousand years or so. The Camelot Papers presents a fresh perspective on Arthurian legend by using modern day sensibility and combining it with a classic tale to bring a new insight into iconic characters.

The Hidden Earth Saga of which there are two published and the third is in the works.

Darkness of the Light (book 1 of the Hidden Earth saga)
Height of the Depths (Book 2 of the Hidden Earth saga)

These are science fiction mixed with mythological creatures and the fate of the Universe hangs in the balance. Big epic sweeping books with those great characters that Peter is famous for writing.

There are Print on Demand for all these books if you want a paper copy rather than electronic.

More HOW YOU CAN HELP

If you already have these or can’t purchase them for whatever reason, you can still help us a lot by getting word out all over the Internet about how they can help Peter. I am asking every blogger and people who have access to an audience to spread the word.

The more we sell of these books, the easier it will be for us to pay the bills as they start to pour in.

Buying his other books does help but that is very long term and isn’t much per books but it does help especially the Marvel graphic novels he has written.

I am talking to Glenn about a donate button or something but we don’t have the details worked out and I really want to get the ball rolling on getting this information out while Peter is fresh in everyone’s mind.

We do need your help to help him. He is working very hard at getting back to all that he loves to do and we are trying to ease his mind about whatever we can ease his mind about so he can do it faster.

We are now off to the Hospital to see what the verdict is about his moving today. I will update this when we know what is going on.

I am grateful to everyone who has helped or is going to help Peter.

I really Don’t Like the Waiting Game

Since the initial crises has passed and we now have just about everyone in the know (It is interesting reading e-mails from people that Peter has a business relationship with and they don’t know what is going on), we are now in the what is next portion for this saga.

What is next is in patient rehabilitation. We are working on the where, how, and who and still awaiting the when. And they can’t give us an exact when because a number things have to be in place and Peter’s vitals have to be consistently at a certain level before they will even think of releasing him. Until that happens, we are in a holding pattern.

Where is going to be dependent on the Insurance company. (You honestly don’t know how many times I have thanked G-d that we have insurance although this is going to be expensive endeavor no matter what kind of insurance one has) The Insurance company is deciding what they are going to pay for. We have two possibilities that both take our insurance. I am waiting to hear what the decision was from that to figure out the next step.

So we are in the waiting game for now.

Peter is doing better every day. Yesterday he was able to lift up his right arm by himself and the fingers are coming back a little more every day. He can stand up but still can’t walk and the standing only lasts for so long. His face is even more normal than the day before. And he sat up in a chair for the first time since Saturday which he was very happy about and I was thrilled. The more he can get up, the sooner he gets out and onto the next step of the journey.

Keep those good thoughts coming. Peter says it is both gratifying and humbling about the number of people who are praying for them and keeping him in their thoughts and he appreciates and is thankful to each and every one of you.

Caroline has gone into stoic mode and is holding up rather well all things considered.

My sense of time is shot. I had to look at the computer to see what day it was. Time seems to have expanded and contracted all at the same time.

I am grateful for progress on so many fronts.

How do you tell a 10 year old that her father might never be the same?

New Years Day was again one of both ups and downs. The downs really sucked as we learn about Peter’s health and what is in his future. Nothing life threating however there will be major changes in how Peter is going to have to live the rest of his life.

The ups may seem minor but it is pretty big in my book. When Peter was asked to stick out his tongue after the stroke, it pointed to the right rather significantly. Today it was almost back to the middle. Also the droop on the right side of his face is not as pronounced. And best of all, he could grip my fingers tight enough that I could lift his hand off the bed which is an improvement from yesterday. I’ll take my wins where I can get them these days.

The big change was bringing Caroline into the loop as to what happened to her father and what the future held. How do you tell a very empathic and sensitive 10 year old that the father that she left at the Magic Kingdom is not the same father she is returning to?

It wasn’t easy but I did. I explained about the stroke and what had happened and, between the cascading tears, let her ask me questions. It was a long ride to Jacksonville trying to figure out how to tell her what was going on and a long ride back as I was driving so I couldn’t hold my sobbing daughter. She came up with a crazy theory that it was her fault because she wanted to come down to Florida, which I quashed quickly. I pointed out that even if we had just gone home from Atlanta, this would have happened sooner or later. Eventually she cried herself to sleep as I tried not to have tears fill my eyes as well since I was driving.

We got to the Hospital and I took her up to her father’s room. She stood in the room looking at him a little stunned. Ariel was sitting next to him and asked if Caroline wanted to sit next to Daddy. She nodded and fought back the tears that were welling in her eyes. Peter explained to Caroline what had happened and what he could and couldn’t do. Ariel explained how to stimulate the right hand and help Daddy with his “kung-fu grip”. Caroline was trying not to cry but Peter asked if she wanted a hug she nodded yes and as Peter hugged her the flood gates opened. I couldn’t understand half of what she was saying but she was pouring out all her fears to him. Peter told her that he understood and he was scared too. There were more hugs and assurances given to her.

In the end she understood what had happened and what was going to happen next. She is not happy about it but understands that this is all to get her Daddy back to her so they can do things together like they always did.

Since the blackout dates are past except Magic Kingdom, I took the girls to Disney Hollywood studios (at Peter’s insistence that we get out of there for a bit) and we rode Star Tours a couple of time and then build their father a Skippy the Jedi Droid with a pirate hat (because to solve the double vision, Peter has to wear an eye patch).

I am grateful for every improvement that Peter has shown since the stroke.

Happy New Year 2013

Peter update (I figure I will be doing these once a day for a while):

One of the scary things about stroke is that things can get worse before they get better. There is the initial stroke and then what I would best describe as aftershocks as the brain works through the trauma it is experiencing. So there can be a bit of a downward before we begin any upward. And with any good luck we are past the bottom of this and working our way back up the hill.

Peter was much more alert when we arrived yesterday morning. His eyes looked better even though he still has the double vision in the right. He seemed much more himself. He was not tiring as easily during the morning.

During the day we got both some good news and some bad news. We had some movement forward and a little back but this is totally normal for someone who has suffered the brain injury that Peter has suffered.

However before midnight we got some great news or rather saw some great news. He was able to grasp and squeeze Ariel’s hand and my hand. This is great because 24 hours earlier he could do neither. He says the most frustration thing about all this is that he can feel the limbs and he knows they are there but he can’t get them to agree to move for him when HE wants them to. He isn’t in pain just extremely frustrated.

Shana, Gwen, and Ariel have been great through all this. Shana is taking care of Caroline which frees me up to take care of Peter. Gwen is helping with all kinds of things including some information gathering that we needed. Ariel is being a rock in front of her dad even though she is very scared inside. She has been very helpful.

We all agree that Caroline is going to have to be brought into the loop sooner rather than later. We are working out how that is going to happen. She is coming back to Orlando today and she will see her Daddy.

We are still in a hold on what is happening when next.

Again keep the good energy coming. He is coming back but it is going to be a long road ahead.

I am grateful that he started the New Year by being able to hold my hand.

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In the Blink of an Eye

As stated yesterday on his web log, Peter had a stroke. So we are at the beginning of what is going to be a long road. We have a diagnosis, which is a small stroke in the Pons section of his brain. Now we have to figure out where we go from here and how we get Peter back to what he was before the stroke. We know that a total recovery is slim because damage to the brain doesn’t go away but the brain can be trained to work around the damage and give Peter back what he has lost.

I am dealing with a lot of woulda, coulda, and shoulda issues right now. But we are where we are and we are working out a plan of recovery.

What happened was that we were in Disney Hollywood Studios having just had lunch at the Prime Time Café. We were walking to the front gate because we were off to Animal Kingdom to see a friend of ours perform in the Finding Nemo Show. Peter had been tired and also not sleeping well the past week or so. He had been taking naps in the afternoon to catch up on the sleep that was eluding him at night. He told me that he had blurry vision in his right eye. The way he described it to me sounded like an ocular migraine so we took him back to the Hotel and went onto Animal Kingdom. We got back and he was working on his next novel. We decided to go to dinner but he was still having a slight vision problem so I drove.

While at dinner I thought his speech was a bit slurred. He put it down to fatigue and his face always looked like that. That morning he couldn’t get his right leg to move correctly. He told us later that he had gotten up because he couldn’t sleep and tried to type and couldn’t get his hand to work correctly but he didn’t want to wake me up and alarm me. I called my mom with the laundry list of things. My mother said get him to a hospital NOW. We loaded him into the car and took him to Celebration Hospital at the recommendation of some friends.

Celebration Hospital did a great job of getting him in and starting treatment. His blood pressure was scary scary high so their first job was to get it back to closer to normal. They did some tests and a CAT scan to check for a stroke. The CAT scan didn’t show anything but they were going with their observations and the evidence that his blood work was not good and getting worse. The decision was made to transfer him down to Florida Hospital in downtown Orlando where they could do an MRI and some other tests Also Florida hospital has the best cardiac unit and they were worried that he had a heart attack or a cardiac episode (having told Peter that he might be having a cardiac episode, he put on his best comic guy voice and said, ”Worst Episode Ever.” So Ariel got to take “ride in an ambulance” off her bucket list as she went down to the hospital with Peter while I dealt with getting us out of our hotel room.

So I am betting that in this point of the narrative you, if you know our family, are asking where is Caroline while this is all going on. She was and is in Jacksonville with her sister and Peter’s eldest daughter, Shana. Currently we haven’t told her what is going on but that is going to change in the next couple of days. So she is having fun with big sister and her playmates in Jacksonville. Shana has been a rock in all this and a champ about taking care of her little sister while all this has been going on. I have been able to concentrate on Peter right now.

He went into the Florida Hospital in the Cardiac Care Unit as they try to ascertain what exactly happened. They did an MRI about midnight along with some other tests. They came to the conclusion that it was not a heart attack but a stroke and moved him to the neurology unit where he is now.

As he stated, he has lost most of the use of his right arm, his right leg is incredibly weak, the vision in his right eye is blurry, and the right side of his face is drooping slightly. But the brain is there with all its quips and quick retorts. He has had the nurses laughing a lot.

Today we figure out what the next step is and where it is going to happen. Tonight the New Year Begins and for us it is a very different beginning than we thought we were going to be having.

Thank you everyone for your good wishes, prayers and kind words. They do help. And BIG thank you to our Orlando buddies who have taken us into their houses and helped us deal with what is going on.

Continue to think good thoughts for Peter. This is not going to be easy for him or us but we will get through this together.

I am grateful that my husband is still alive.

Merry Christmas the 2012 Edition

I woke up on my own about 6:30 and went to check on Caroline who was awake and ready to get up. We snuck quietly downstairs to check out the tree. Ariel joined us shortly thereafter.

Last night we performed the rituals that I have done since I can remember.

This morning we open presents, eat eggs benedict, and enjoy being in each other’s company.

Later we are going to go see Les Miserables with my sister Sheila. Or at least that is the current plan.

This evening I will be visiting with friends and catching up on people’s lives that I see only a few times a year and they don’t blog or use social media much.

Tomorrow I am going to see my brother and his family and then we are off to Florida to see Shana and a few other folks as well.

There is a comfort in knowing what the next couple of days are going to be and what will be happening. There will be adventure and surprises along the way with not knowing how things are going to play out but that is part of life.

Right now I am watching my daughter read her new Monster High book and, occasionally, share passages with me that she find very funny. She is curled up on the couch like I use to do with my new book(s) as Christmas enjoying herself. And the circle continues.

I wish you all a good holiday and a pleasant day.

I am grateful for my mother’s Eggs Benedict. It is really really good.

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