31 March 2010

Julia's behavior has been uneven and difficult this week. I attribute most of it to letting go of the stress of the last month. We have had three tantrums -- one with Marilyn last Thursday, a second one this weekend , and a whopper today triggered by our proposal to do errands, have lunch and go to the gardens. She was tough -- She was able to head but me on my nose. Oy, it hurt! We sat together, me holding her in our safe hold, for almost a half hour. She calmed down somewhat but refused to do anything slow her engine down, and then escalated again. That happened three times. She cried, she told me she was scared of going to town because she would get lost, she told me she wasn't going back to China. She cried harder than she has before -- mostly because of frustration.

We are without therapists for the next few days. I am hoping that we get a fill in or so, but if not I'm sure that we will lose some ground.

At the same time, Julia has been flirting with her eyes. This is hard behavior to describe. And she has done this before but not as much as she is doing right now. She will stare into someone eyes, and giggle and laugh. When she does it in the morning, she will flap her hands and move about. Julia was doing this last week with Lisa, and this week with David and I. The behavior has increased, and at first I was concerned because it looks strange. I honestly wondered if it pre-saged some sort of seizure, but now it feels like she is experiencing something new when she looks into our eyes. It is as if she if reading something in our eyes. I could imagine that there is something new going on behind her eyes, like she is making new neural pathways, like something long dormant is waking up. Maybe this last is nothing but a mother's wishes. Maybe.


Oh, there is nothing like the first pictures of spring. Pig tails, pink boots, and a Daddy's arms. These pictures are from a few days ago when we still needed jackets to go outside. Today, the temperature got into the 70's and warranted a walk in our Olbrich Gardens. Not much in the way of flowers out yet, but the air is warm, and there are lots of green pushing its way into view. David walked for almost an hour with a few sit downs, and this was after a morning doc appointment, errands, and lunch.

29 March 2010

Monday morning and the garbage is out and picked up and I haven't set a foot outside. I am getting to join the old ladies who put the garbage can out before I go to bed the night before. Actually, I never do that but we wanted to sleep in today -- spring vacation and all -- and we had a full garbage can.

David answered the phone this morning. Was it the first time? He was able to maneuver from the kitchen sink where he was washing dished to the phone which is a few steps away. Very simple thing, but another step. Maybe he has done this already when I have not been home. Sometimes I feel like I am recording the evolution of a baby -- recovery is gaining another infant-hood.

Once again, Julia and I are doing our home work. After three days, she is back to where we left off before surgery. I want to write a lot more about this. Maybe tonight. Now, we need to get dressed and get outside in the gorgeous sun shine!

We are going to the zoo, zoo, zoo . . . you can come too, too, too . . . .

28 March 2010

The three of us spent the day doing errands. Our therapist called in sick and so we headed out earlier than we expected. David was able to be out and about from a bit after ten until after three today. We moved slowly; and David did not go into all the stores that we visited. We moved into the Blackberry world of phones, found a copy of Ponyo, bought thank you notes and a new dinosaur. When we got home, David took a nap but he was in very good shape for the evening. And David put Julia to bed last night and tonight. She was so happy, she was glowing. My Daddy's girl.

26 March 2010

Friday! Friday! And after 10:45, the first day of Spring Break for Julia. I intend to have a week long week end -- sleeping late, long breakfasts, walks, a touch of gardening, maybe a movie, and playing, playing, playing with Julia. She needs it and so do I. In the rush of the last three weeks, I have spent very little time on the floor playing little pet shop, dinos, or doll house. She really gets plenty with her therapists, but it is mommy that misses it.

David went to his first working PT appointment today. He exercises for about 25 minutes in two chunks of 10 and 15 minutes. He will be exercising 3 times a week and the PT expects that he will be doing an hour and a half very soon. The rehab clinic is also near to our YMCA, and so, this will be a perfect time for me to use the gym. I can do an hour and have plenty of time to get back to David.

Did I report on the biopsy yesterday? David had no sign of rejection again this week. Two weeks of good biopsies means a drop in his prednizone -- a small drop to be sure but since it is that drug that is causing many of his current ailments under the name of side effects, he is hoping for less of those side effects. The prednizone is reduced to nothing over 6 months if the biopsies are clear, and most patients are finished with us within a year.

David has also finally accepted that he will not be back to work within a week or two -- yes, he wanted to be! The docs prefer that if he is feeling well enough to expend energy, the energy should be spent on physical exercise. So, PT over desk work.

Julia's behavior continues to worry, but I talked it over with Marilyn and she feels that much of it may be Julia's delayed reaction to all the stress. I am hoping that this next week we will be able to get our little threesome back on the same page.

25 March 2010

Thursday morning and I have to let go of Lisa later today. David is sleeping in. He has had some rough nights, waking at 2 or 3 in the morning unable to go back to sleep. He has tried to stay away from his pain meds with codeine with the idea that his mind would be clearer, but his doc told him yesterday that he needed those pain meds right now. Taking them, he is able to breathe deeper and cough better -- not as much pain.

He is not finding it easy to be a patient, a patient patient.

Julia is having a rough week. Her teachers had said she is "not available for school work." No reading, no math -- drawing, just drawing. No easy for them at all. Julia bit one of her therapists on Sunday -- once again aggression rearing its head. First of all, I feel so badly that she bit even though there is nothing that I could have done. The bite broke the skin -- so a harder bite than she has done in a very long time -- and as Julia is Hep B+, the therapist went to her doc, found out that she had no immunity, got the appropriate remedy, and started the vaccination process all over again.

I see these behaviors as having to do with our life getting closer to normal and Julia being able to let down and act out her stress. But it doesn't help my own guilt.

We have a pleasant day of few must dos today; tomorrow is too full. I am supposed to interview for the UW program that I would like to do next year. I can't decide whether to cancel because any thing I do tomorrow will be rushed, let the interviewers know that I have limited time, or just try to fit everything in. I so want to be a part of this program.

24 March 2010

Waiting at the Cath Lab for David's first outpatient tests. We spent about an hour and a half talking to our heart transplant coordinator and then one of David's docs. David was prompted to ask questions and report every complaint and uncomfortability he has been experiencing. It was great that so many of them were definitely within the realm of the expected. His blood pressure is high and he will be medicated -- high blood pressure comes with a new heart. His tiredness is not surprising, nor is his continued weakness. He is still retaining fluid in his ankles, but he is being encouraged to drink more than he has been drinking and to take more medication. We hope that the result of the biopsy is good and he will be able to reduce his steroid intake. Prednizone, his steroid, is responsible for many of David's complaints. With each good biopsy, David's dose of Predizone will be reduced, and so we are hoping a good report tomorrow.

23 March 2010

So nice to write that I have very little to write about. David is healing -- slow but steady. He had his first PT appointment on Monday. He will be seeing his PT three times a week for the next three months. The PT will set up an exercise program for him, but on Monday, she was also able to give him some guidance regarding what he could do at home. And so, David is taking a few short walks around the block and to the lake. Today, we went out for a lunch of stone oven pizza. Tomorrow, we'll hit the library. Who knows what Thursday will bring?

Lisa is with us for a few days. She came to take care of us and she is doing a good job. She fits seemlessly into our household and we will have a hard time letting her go. We take each day as it comes -- getting Julia to school, taking David where he needs to go, cleaning up a little bit, washing dishes and clothes, taking a few walks, a few naps, and watching movies. Almost perfect?

21 March 2010

This evening, Julia asked David to take her upstairs to get her ready for bed. Our usual evening routine is that David and I take turns putting Julia to bed, but when David was in the hospital Julia never mentioned it and since he has been home, she has not asked. So, methinks that Julia sees her Daddy getting better. It will be a little while before David is ready to take up his Julia duties again. Julia did not fight or whine when Daddy told her so, but she is waiting.

Yesterday evening, David and I went to the reading of his play, "Kiritis." Before he was released from the hospital, David asked his transplant coordinator whether he could go to the reading, and he was told that if he felt up to going out, there was no reason to keep him home. And so, he rested during the day (the entire day), and we were able to borrow that theater's wheelchair to take David from the car to the theater and back again. Going out and sitting though the reading taxed David's strength, but he enjoyed every minute and gained much from the support and enthusiasm. A short article in our local online paper can be read here.

Although we have been in the company of lots and lots of medical personal over the last month, and those people were friendly, giving and supportive, it was startling to feel the energy of a Saturday night, the energy of an audience, the pulse of the life that we love. We have been in a strange isolation, something self imposed and completely self involved. And although I don't mean that we did not/ do not need this time to care for David, but that such a separation from the busier life that we usually lead.

After the play was over, there was a talk-back time with the audience. Before the questions began David wanted to say thank you to those who have helped in so many ways. He wrote out a short list and I read it to the audience. It was sweet and well received. Among other thanks, David thanked the medical care he has received at UW and that this level of care should be available to everyone who lives in our country. That brought a cheer and applause. Ah, Madison. Our place just right.

19 March 2010

Two weeks, a few days and still napping

I did errands today, riding all over town, one end to the other doing things that I have been trying to get done for what seems like a long time. Just tasks which have come up since the transplant and not urgent and so pushed aside. I also returned the extender toilet seat and shower seat that I bought at the urging of David's nurse and OT. Apparently I do have a super husband and he is fine to stand and sit like the rest of us.

David is tired. He has been sleeping in huge gulps of sleep -- most of the night and long deep naps during the day. He is picking up the New Yorker and rummaged through the pile of books that friends have sent. His concentration is returning. His pills, insulin (transplant patients who take steroids for anti-rejection meds, have a medically induced diabetes), and charts for vitals take up some time four times a day. I continue to wonder how people with less ability than we have cope with the self-care that comes with this gift of new life.

This evening David's blood pressure is higher than the recommended reading and he needs to call this in to his coordinator. I don't know whether our small pressure machine that is faulty or accurate, and I am not sure what his coordinator will do, but it is part of the instructions and he is following them. David has not seen a doc since his release but he has appointments next Monday and Tuesday.

David is enjoying the new flat screen (our first) tv that he wanted and I bought after surgery. Actually, good friends bought it and set it up on my general directions (Don't let me forget to pay you back, Mary!). David was tickled to see it when he first got home, and even I have to admit (the one who has always said that a little tv is fine with me) that the picture quality dazzles. Last night, we watched Kung Fu Panda (real adult viewing) and just WOW -- clarity, detail, color. Some maybe there is something to this new age of video.

In Julia news, she is have a moderately good week -- mostly good reports from school, pretty cooperative with her therapists, and mellow and loving with us. Amidst all of the stress, she has been able to maintain herself pretty well. She has really enjoyed being outside during the warm days of this week, and has been willing to do new activities with her therapists. Her drawing continues to evolve. I have to take some pictures. Much more detailed color is appearing in animals and fruit. Yes, she is drawing fruit. I think her art teacher at school had the kids doing still life, and pears, watermelon, and bananas are appearing everywhere -- not in neat bowls but in the jaws of dinosaurs and the hands of cats. She uses her colored pencils to produce deep, rich colors and does not forget that watermelon has tiny black seeds. She talks about drawing stars in the eyes of her happy characters.

Kinda' funny Julia art story: Marilyn, our attachment therapist, has pictures that kids draw on one of her walls. Julia contributed a picture of a wolf with sharp teeth, a furry tail and shiny eyes wearing a long and fancy tutu. It is not an unhappy picture at all, but another patient asked Marilyn to take it down because she was scared of it. I take this kind of picture for granted, but looking at the more typical child generated art that adorns the wall, I can see how some other child could be scared. There are no ponies, no pastel colors, no pretty yellow sun. Just a Julia wolf in ballet clothes.

My girl!

18 March 2010

Breathing easy

David came home last night . It was almost 7 by the time we walked out of the hospital -- David in a wheel chair -- carrying the stuff he accumulated in 15 days at the hospital. Where did all that stuff come from? He had two stuffed bags full of medications and accessories -- the last time we took so much out of a hospital was when Cheshire was born. Do hospitals still send more parents home with diapers, bottles, and formula, or was it just Manhattan in the mid 80's?

David reveled in sitting on his own couch and sleeping in his bed, although he did the climbing stairs a bit too much and is pretty stiff and achy this morning. He is sleeping now and my eyes are beginning to droop as I write. I am not exhausted but can probably use a few naps myself over the next few days.

Early this morning, Julia crawled into bed with us. She woke me, shaking my arm, "Mommy, David is sleeping in bed." She then quickly turned over and was out again. This morning when I left her in school, she was happily drawing smiling T-Rexes and calling me back to give me "just one more kiss." She was very wary of having David home, she did not run to hug or kiss him, but she was happy this morning.

17 March 2010

Lunch with a new heart

Biopsy results are in and David's rejection number is ZERO. Other numbers are also great and the right side of the new heart is doing a lot better. David will be homeward bound late this afternoon or tomorrow unless his surgeon says otherwise. For those law school grads, David feels like he got the A-star in Heart, and indeed, it is a wonderful feeling.

16 March 2010

Tuesday morning

David's tests went well today, although we will not know the results until tomorrow. He was wheeled down to the tests instead of having his bed transported. The docs may cut short the full 7-day round of the strong anti-rejection med. Food is tasting better, although David continues to have pretty severe heart burn. On the gastro-intestinal front, everything is moving on its own which is nothing to be sneezed at. David's pacer -- pacing his heart -- which has been set very low for the last two days, allowing his heart to keep pace by itself but insures that David's heart rate would not fall below 50 beats per minute, just came out. And he looks better and better.

15 March 2010

Monday, now Tuesday -- 13 days after surgery

I started this on Monday, yesterday, and thought I'd finish it last night, but once again I fell asleep with Julia and never made it to the computer again. So, now it is Tuesday, even though this post will say that it was published yesterday.
Julia asked to sleep in her own bed last night. Wonderful! I have been worried, just a little bit about her wanting to stay in our bed once David comes home, and she has seemed to need it since he went into the hospital. But last night, I headed for my room to put her to bed and she asked to go in hers. In some ways, Julia knows herself and follows her needs. I am always happy to see that she can take care of herself.

David walked up and down 6 stairs Monday morning in the stairwell of the hospital. Ah, the things that go on in stairwells. I've always loved singing in stairwells. I think I broke up with a early college boyfriend in a stairwell. I remember the stairwells at the boys high schools we visited having that sweet, smoky smell, and then of course, they were a good place to have a few minutes alone. And now, David is walking up and down those same echo-y, cement hard, cold, neutrally colored steps. He will be practicing for the rest of the week because we have so many steps at home. Our house, cute as it is, is no place for someone without the means to get up and down stairs. If one of us loses use of our legs, we will have to move.
The hospital doesn't have rehab facilities (and David is not quite ready for a gym) but his PT invited him to her office where she has a few machines for him to work with. I am sure she will watch him like a hawk -- his reputation precedes him -- but he would like to be on the stairmaster as soon as he is able. His ambition right now is to get to the reading of his play, Kiritis, on Saturday. We will ask the docs what they think and then use common sense -- I hope we get the chance to use common sense.

According to David, the heart is doing fine but the rest of his body is freaking out. David says that it feels like a brass band is pounding in his chest. His skin is not as dry, his hands and feet are no longer cold -- a pumping heart is impressive. How many times have I said this? And again, he is still experiencing pain at his incision site and his gastro-intestinal system is out of whack. None of this is exceptional. David does have med induced diabetes, and is on two forms of injected insulin. Lots of teaching time is devoted to getting David use to his many meds to take during the day and also to inject himself with insulin. David had a plethora of meds before the transplant, he took them day and night and I don't think there was a similar effort pre-surgery. There has been multiple people coming in to teach David about his meds, his needles, and his testing devices. There are also changes to his meds ALL the time. They usually note that David is an easy student to teach, and I wonder how those who have a greater challenge learning to live with transplant. Is this a question when qualifying someone for the transplant list?
He is beginning to communicate with people again, that is, talking on the phone and emailing. He will be back to reading soon -- hard to see an untouched New Yorker in David's room. We have finally understood the reason for all the stupid tv shows! They are totally undemanding for the medicated, post-surgery body and mind! What comfort! I would think they could merely devote one or two channels to this sort of programming, but it seems that a medicated, post-surgery mentality may represent some sort of ground zero of the tv-viewing world.

Julia had early release on Monday from school, and I brought her to the hospital after school. She drew -- what else -- working with a small dinosaur stencil book. I think someone gave us this book before Julia came home. She has been unwilling to use stencils -- or maybe, she did not understand how to use them. When I was cleaning out my mother's house, I found some old geometry "rulers" with shapes cut out to trace. There was also two stencils for chemical formulations. Julia started playing this those this weekend, and I thought it was time to bring out the dinosaur stencils. And I was right. I am hoping to get some food into her this afternoon, before we return to OT and speech today before her at-home therapy.
At speech, Kara tried to get Julia to make up questions about a situation. At one point Julia said that she did not understand what Kara wanted her to do. I think that many times when Julia gets loud and uncooperative, it is a lack of understanding. Sometimes she gets new activities very quickly, but not always. The not always times are hard and she still is scared to take a chance on activities that she doesn't understand. Tell her that I/we know she will be able to do it, just doesn' work. It is her inner core of self-protection that kicks in. The behavior comes off as stubborn and uncooperative, it can be hard to see it from her standpoint.

Echo-cardiogram and biopsy today As the day goes on, they have changed their optimist going day from Thursday to Wednesday, but I think Thursday or Friday is more possible. Each time the staff talks about going home, my stress level goes down a little bit. And when that happens, I get tired. LOL! What a response to good news!

Food keeps on appearing at our door on appointed days. There is always more than we need for one day's supper. And so we have a meal and leftovers. And I am grateful for all of it. I can spend the little time I have with Julia really with her and not shopping and cooking. I have also not been in any mood to think abot cooking. If I could eat the same thing every day, I would be fine. I don't know if the same is true for Julia.
The day is stunning outsdie. Sunny and getting warm. Just perfect spring weather! We have no therapists today, so when Julia gets out of school, I want to take her to our little zoo. She can run around, watch the river otters and giraffes, and maybe I can snap a few pictures of my girl

14 March 2010

A picture's worth . . .

Now that David is looking and feeling somewhat better, I'll share a few pictures. The first is of David at 6 a.m. on March 3, as we made out way into the hospital.

And this is sometime during that first morning as we waited for surgery. This was the last time David was unconnected to tubes and hoses.
March 4, the day after surgery. David was still pretty heavily sedated which only led to trouble. Notice the vacant look in those eyes. But honestly, his color was not bad for less than 24 hours after surgery.
Notice the IVs that David is hooked up to. There were a few more machines on the other side of the bed as well. This is still day 2 and before he attempted to get up and wound up falling. That second day gave all of us a totally unrealistic of the challenge ahead. There would follow quite a few tough days. No pictures from those days, and that is probably just as well.
This morning the four of us had brunch together! I brought bagels, cream cheese, oranges, and poppy seed cake for us to feast on. This was Cheshire's last morning with her Dad, and Julia much preferred drawing to eating. It was great to all be together.
Julia and her Daddy. She can't wait to get him home. When she woke up this morning, Julia patted Daddy's pillow and asked when he was coming home.
David and first born daughter walking the halls. David is walking without a walker or wheel chair to steady himself. His IV tree is reduced by more than half and he seems like he is enjoying himself. This is a far cry from his first few walks when it took four helpers to get him around the nurses' station.

13 March 2010

Saturday morning

Julia has therapy this morning at home and I am staying home to do a little bit of cleaning up in the house and my desk. Cheshire is at the hospital where she is still spending nights. Julia and I will go over at noon, have some lunch together, and maybe watch a movie. We can use the family time. Julia has been very concerned because she has not seen David since last Sunday. She patted his pillow on the bed this morning when she woke up and asked if she could see Daddy today.

My girl has such a heart. In fact, both of my girls have incredible heart. It is so amazing how the compassion in both of our daughters has grown and matured. We are a very lucky family.

I am tickled that I have a few heart related readers! Some are old friends, some are newer friends from a yahoo group, but I think a few, okay, maybe one, just found Spicy Dragons. Welcome all. Did I write this before?

One of the comments that I received included:

Right now is a MAJOR adjustment phase. The Dr's and nurses adjusting and tweaking meds and the patient physically and emotionally getting used to these adjustments. It can be an overwhelming, humbling and very emotional process.

This is a perfect description of our week. Overwhelmed, humbled, and emotional. And this is pretty intense for the caregiver as each tweak and adjustment brings change, and at least for me, each change of the "numbers" -- pulse, blood pressure, sugar, etc. -- is poured over and analyzed. I am very grateful that I was pushed to set up systems to support me. I am also very happy to have found the means to deliver news and updates in the way that I enjoy the most -- writing -- instead of talking on the phone to many, many people. I have a few calls each day to and from people who I can pour out my heart to and who fill me up with love and energy. It is just the right balance.

Listening to Julia play with her therapist this morning. She is playing school with her many, many dinosaurs. She is setting up a dino librarian who is reading to a class, and a field trip complete with a crate for lunch boxes and travel buddies for all the student dinos. One student dino hit another student and is sitting in time out and thinking about slowing down her engine. Wonder what went on in school this week?

12 March 2010


Big Sigh! Today, was better/ is better. My heart surgery comment-writing friends have told me, and I have read on my own, that the process of healing is very up and down. A good day, a bad day. Lots of pain and then a little relief. Today, we have the relief! And oh, how we needed this day. David is still very weak and his endurance is short. After activity of the early afternoon, he slept deeply for an hour and a half. And that too, deep sleeping, is good too.

David went for two walks today, each longer than all the walking he did yesterday. He is able to order his own meals from room service. I helped him with a sponge bath today -- not the nurse. And David is sitting at his little computer writing email! Food was better today as well -- he ate an entire breakfast, asked for egg salad for lunch, ate homemade -- not at our house -- pumpkin bread for a snack, and drank some ensure. In addition, he no longer is getting oxygen and nitrous oxide. The docs have decided to give David a whole round of Thymoglobulin -- 7 days worth. David gets pre-meds to ease any reaction which has appeared to help. He did get intense chills, but they were short lived.

Aches and pains, heart burn after everything he eats, and a rocky digestive system are still with us, but we have had an easy day. Another step forward.

Just one Julia story before I stop. Last night, Julia and I were in my big bed. Yes, Julia has been sleeping with me since Daddy went to the hospital -- um, she is a regular visitor in our bed and was there when we got the call to go to the hospital. Anyway, even though David is not in bed with us, Julia is taking up the middle of the bed leaving me clinging to my side. Last night, I pushed David's pillow to the way end of the bed. Julia appeared a bit upset and wanted to know if David was in the hospital and if he was in bed. I told her he was sleeping in the hospital. She asked if Cheshire was going to come home to sleep, and I told her that Cheshire was sleeping at the hospital and taking care of Daddy. Julia thought about it a second and smiled, "Cheshire taking care of Daddy, and Julia taking care of Mommy!"

11 March 2010

Thursday -- a week and a day

Today, was one of those good news, bad news days although I think -- and am not sure at this point and not at all sure from David's POV -- that the good out weighs most of the bad.

So, first, David was suffering rejection of his new heart the last few days. The biopsy revealed that David was undergoing a 3b organ rejection. Rejection ranges from 0 to 3, with 3a being the most serious. Thus, 3b is pretty rough. Added to this, the docs don't know whether this is the normal type of rejection -- 60-70% of heart transplant patients have some rejection during their first year -- or whether it is due to the autoimmune condition that may have caused the body to damage his native organ. As serious as this is, David's new heart seems to be responding to the anti-rejection meds and so no matter the cause, the meds are meeting the challenge.

David received the Thymoglobulin today again and this time without reaction. He was better prepped for it this time with tylenol, steroids and some other med, as well as having the Thymoglobulin delivered slower than it was yesterday. We don't know right now whether he will continue to receive this medication. It can be delivered for one or two days or for an entire week. We'll see how David's number are tomorrow, and the docs will decide.

Because of these developments, David will be in the hospital for one, maybe two more weeks. It seems like forever right now, but we will do it.

David walked around the nurses station twice today. On one walk, he was able to go around twice. He was tired at the end of these walks but not as exhausted as he was yesterday. The PT gave him more exercises -- small weights and grippers to squeeze. It is still hard for David to motivate himself to do what he needs to but that's why Cheshire and I are there. It is hard to imagine how weak and exhausted he is -- maybe it is good that we cannot feel his weakness. Maybe if we did, we would not push him and he needs to do as much as we can get him to do physically.

David's other challenge right now is food. He does not feel much like eating and nothing tastes good to him. However, he managed to drink some ensure today and to eat some ice cream. I realized today that it is probably not a bad idea to bring him some of the wonderful food that people are bringing over. Even if it is only small tastes of good tasting things, it gets him eating again. Today, it is chicken and rice soup and cherry pie, both homemade. He did not eat enough of either to make a difference in his calories for the day, but it is a start.

10 March 2010

drug reaction

David had a rough reaction to a drug a little while ago.

He was sitting on the side of the bed when he began to get very cold. He started shaking, his lips turned blue-ish, as did his ears. I helped him lay down and called for the nurse. The nurse who is always right outside his room and who was no where to be seen. I did not want to leave David to find someone but I opened the door -- it is amazing to see a floor that always seems to be bustling with people go absolutely dead. I am sure it was no more than a few minutes, if that, before our nurse and another came in with blankets and help. To me it was forever -- what a cliche.

The drug is Thymoglobulin -- Anti-thymocyte Globulin (Rabbit). The website http://www.thymoglobulin.com/. David's reaction was one of the common ones.

The reaction, which we did not know was a reaction at the time, lasted for ten minutes. Although I have been able to handle most of what David's gone through, this was almost too much for me. Clearly, it was not a heart attack or a seizure, but it was David suffering intensely. I could be calm, but very scared as well. This is a med that he will be on daily right now. How is he going to deal with that. Just how?

Of course, this is not chemotherapy. David's reaction, though intense, lasted minutes, not hours, not days.

We are learning.

low tolerance for inconvenience

That is David, and my sister's response was, "Well, he better work on that!"

I think we are in a new phase of healing -- a phase that is VERY frustrating because it is slow and it is going to remain slow. David is doing better today than yesterday; however, his healing is a bit behind the curve for best case scenarios, not off the charts, and the med staff keep emphasizing that to each their own, but still, being on the slow side is not comforting. There has been an ongoing examination of his "native organ" (his old heart) also, and there is some question about whether David has an autoimmune condition which caused his immune system to attack his heart. This condition was written up once and our docs are getting in touch with the author.

I can't help but have the vision of the geeky med guy (and I say geek only with the best of intentions knowing full well that we have at least three geeks in our family, I don't know about Julia yet.) getting a call that our docs have another case for him to document. What joy in geekville!

Anyway, this may present a complication to be worked on. I am sure it means more time in the hospital as they will be extremely careful weaning him on the strongest of IV anti rejection meds. Our task today is to begin to get the medication schedule down. Watching David try to do this is a pretty vivid reminder that recovery will take time.

On the positive side, David walked around the nurses station last night and this morning. He travels with an entourage: I walked with his this morning and helped him push the IV tree, Cheshire carried tubes, a nurse walked behind him with a wheel chair in case he needed to sit down, and another nurse walked with the ventilator. We are quite a group, I suggested we sing some musical comedy number -- We'll walk down the Avenue, came to mind -- but was outvoted. David is allowed to get up and Cheshire said he spent a long time in the bathroom shaving last night. He was quite beautiful this morning, something a wife appreciates.

So, this is a weird combination of feeling better and not feeling well enough. David wants to be further along, he hates the demand of patience. I think he may be feeling a bit depressed as well -- he has had no condition to compare this to and certainly although we have both researched and read about this process, it is yet another process that is completely different when you are the patient, or the patent's wife for that matter.

I cannot help but by optimistic. Although news of some autoimmune condition is scary, there was no condition that was found when they did his initial testing for the transplant list. I don't know, but will ask, if such testing was done, but with all that they did test, I cannot help but expect that such conditions are looked for. In addition, from what I've read, some rejection of the new heart is expected during the first year and rejection is studied and medicated. David's condition if it is a condition, may not be tough to control.

In other news, Julia and I crashed at 8 last night and both of us slept hard through the night. I had fortunately walked the dog when I got home from the hospital, but missed her bedtime walk. I woke up with the alarm and fell back to sleep. Julia did not move with the alarm and we slept in a little bit. Even when we got up, I made a good breakfast, had her help me pack her lunch, and we sat together to eat for longer than usual. The result was that she was more than an hour late for school but it was time well spent.

Julia is having trouble with transitions at school, and at home as well with her therapists. She always have trouble with transitions but his massive change in our lives makes it a bit worse. Not unexpected, and hardly awful looking at her whole day. She is drawing a lot -- more than a lot, and has valentine cards for me and for David often. Also, birthday cards. I have to tell her about get well cards.

thymogobulin (anti thymulsite gobulin)

09 March 2010


Well, talk about feeling useless! They -- lots of nurses and staff -- took David downstairs to get his first post-op biopsy and to possibly remove the Swan Line from neck (this IV line allows direct connection to the heart). Once the Swan Line is remove, David will be allowed to move about more freely. It will be good to get him walking. He is still tired and still needs to sleep but he also needs to walk and get exhausted by the effort.

Anyway, here I sit waiting. I did this with my mother once last Spring when they took her for a test and I just sat in her room for hours. Never knowing when she would come back, I did not leave. Life today. I don't feel like it is/was a waste of time, but there is a nothingness about the time. There is a here and now, some worry and concern, and just a dim thought of tonight, later, what I should be making or eating for dinner.

David is doing well enough that Cheshire is thinking of not spending the night at the hospital. She can also use a night's sleep at home. Truly, we are all exhausted. Every time an educator comes in David's room to teach us about post-op care, my eyes begin to close. I know that David's eyes are closing, so these poor women are teaching to half asleep students. It is embarassing! I am sure they have seen it before.

Julia's therapy ends at 6 tonight and so we will have an evening together. I hope that we can eat, do some reading, take a bath, and then get to bed. I should have done all of that a few nights ago and just could not get it together. Hopefully, I will be better tonight.

The result of the biopsy is important to when David will be allowed to come home. Actually, the biopsy is part of his continual care and he will be undergoing them often during his first year with this heart.

The heart biopsy is currently the most conclusive method for detecting rejection and may show a positive result even when all other tests are negative or equivocal. It is a simple procedure which involves removing a tiny piece of heart muscle via a cannula placed in a neck vein under a local anaesthetic. The muscle fragment is examined under a microscope for evidence of the infiltrating cells which cause rejection.

We are hoping for some good results, but I am sure that if the results are not the best, the docs and staff will redouble their efforts to move David's recovery along.

08 March 2010

Footnote for today

It is getting warmer outside and the snow is melting -- not gone but melting. I want to rake the lawn but i can't see enough of it. I want to clean the front garden but . . . . okay, more snow. Anyway, I also want to chance the header of the blog because it feels like February instead of March, BUT I don't have my pictures or elements program installed on the new laptop, that I love by the way but that I don't really understand. I haven't gone back to the Apple store to do file transfer and the "introduction to your new computer" class. Maybe next week. Maybe.

Back to the regularly scheduled program: In order to improve David's right heart activity, they are giving him a new medication -- nitrous oxide -- via inhalation. There seems to be an assumption that sooner or later the right side of his heart will catch up with the rest of his body, but for now, they are going to make it as easy as they can for that new heart. This is not a long term solution and I sense some tension and worry. Another bump in the road? Possibly.

We are having talks about giving yourself over to the care that you need. For me, it means letting people take time from their days to make us food or take care of Julia, but for David it means constantly accepting other people's help, expertise, and time. I don't think a person could go through this experience without feeling the profound need for community in this endeavor. The expertise being tapped right now seems much to much for one person -- as if, we are taking more than we can possibly give back. I am humbled.

And David needs another nap.


Short version: David finally got a night's sleep, and his napped on and off all morning. I think there is still a well of tiredness to fill but he is on his way. He IV tree was cut in half and he is eating semi-solid food. Eating is still a challenge but we are working on it. This is the best day yet!

Longer version: David is feeling better today. He is complaining about aches and pains, not intense pain that does not stop. Saturday was a rough day with David really confronting a lot of pain with very little sleep to sustain him. He was uncomfortable and grumpy. The med folks kept saying that he was doing well, but it was hard for him to believe it. Yesterday, Sunday was better, maybe a transitional day. I didn't update yesterday because I was really flagging. David was improving slowly but it was hard to quantify -- color was better, they let him eat -- really taste -- some semi-solid food, he stood for a few minutes, and sat in the chair for a long time, but the fatigue thing was still huge. He slept some on Saturday night but not enough or deeply enough.

But today the progress is palpable. David slept last night and is getting lots of short, deep naps today. He is still forgetful but much more with it than he has been. His cardiac index is low (this is for medical folks. I barely understand it and not really able to explain it well). It is at 1.97 right now, and they would like it over 2. I does seem that the right side of his new heart is not working as well as the left side. The tried to wean him from some medication and upped it again when this Index number started falling too rapidly. His surgeon said that they would like to see him moving along a bit quicker but that they have to go with David's time not some artificial schedule.

We just finished our first post surgery education lecture with his coordinator. We will have these until he leaves the hospital. We have lots to learn about the drugs, his treatment, his exercises, etc, for the next few months and for the rest of his life. Of course, it starts out complicated and gets simpler over time. We can learn anything!

Eating has been hard. David has be hungry, not overwhelmingly but some what. However, it has been hurting when he eats -- lots of left over pain from the breathing tube. So he tastes, takes a few bits, but I went down to get some lunch and he asked for some ice cream. He has been digging into some chocolate and almost ate the entire cup -- about 2 scoops. Chocolate Ice Cream -- Food of the gods!

About food -- My friend Pat, Suzanne, and Cathy have brought us wonderful food. Healthy and delicious. Pat's soups -- well, Pat is a personal chef -- are so good. The turkey noodle soup was astounding -- a kinda unremarkable soup name masked a rich, sweet broth with soft carots that retained all their flavor and turkey that tasted like it was fresh off the bone. How did she do that? Cheshire called me to tell me about the sesame noodle, and my bowl last night was a treat for my mouth. Both complete comfort foods, both comforted us a great deal.

A few weeks ago, I resolved to make my blog more fun. I wanted to post more photos of food, crafts, Julia, and Julia's art. I wanted to put a more jaunty tone into my posts. Then there was this heart transplant. Hard to be jaunty writing about transplant, or else I am just not up to it yet.

07 March 2010

Sunday morning on waking

I must have caught up on a lot of rest these past two nights. I am awake before Julia and not at all groggy. Ches texted me last night after 10. All was well and they were watching a movie. And then I went to sleep.

My thoughts this morning turn as they have for minutes every day since we saw David after recovery to the family who lost their dear one and allowed or asked for his/her organs to be used for others. Maybe David's doner has a doner card, maybe the doner has a generous family. This is the second time in our lives that some family's tragedy has been our family's supreme good fortune. And so, now I have another family to thank deeply. We have been given two lives, our Julia and David's new heart. So much gratefulness, so much thanks. I will try for the rest of my life to live the thankfulness that I feel.

06 March 2010

Day 4 Afternoon

It is almost 3. David is dozing and boy, does he need it! He still has not slept for any length of time and they still have not gotten his tubes out.

But wait! The doc is in with him now --taking tubes out! I hope this will reduce his pain and let him really get some rest. Interesting thing about heart transplant is that they don't give much pain killer. He is taking Tylenol with codeine for pain but nothing else. This has to do with the amount of drugs running through him, but boy is it tough.

David is feeling very weak and tired. Drugs are being withdrawn, his new heart is managing his blood pressure better today than yesterday, and he is meeting the goals that are set for him. But all of this means that his body is more and more on its own. The adrenalin of the last few days has worn off and the aftermath of this tremendous surgery is setting in. A good night's sleep would do him a lot of good. Maybe tonight, or very soon.

I am losing track of my days! Cheshire and I worried about David seeming to be disoriented last night, but neither of us are much better. We lose days and forget what we have just said. I don't know whether it is fair to hold David to a higher standard considering the new heart and plethora of drugs being pumped into him. He was taken off the pacemaker and the drugs that kept his heart beating strong. He just told me that he can feel this heart beating which he finds strange. How weird it must be to have a heart that is working at least 3x better than the one that was there 4 days ago.

They brought him a food tray today for the first time, albeit with jello, tea, juice and water, but that too is a step forward.

The staff mentioned that he might be able to go home on Thursday. I will not hold them to that day but it is so very nice to hear them talk about going home. He will have a lot of restrictions when he first gets home and I just hope that he will listen to all of them. Fierce independence is a great thing in most circumstances, not after a transplant.

Julia came in today today to see David. She was in for a pretty short time. Her energy was too intense but she needed to see Daddy. She loves him so much. She made a lovely card yesterday, telling him to get better and drawing and pasting on many, many hearts. She was hugging me and Cheshire a good deal this morning too. Our friends, Robert and Mary, picked Julia up from the hospital and whisked her away. I can sit with David and Cheshire can go home and take a nap and a shower. When I stepped into the shower this morning I almost could not remember when was my last shower.

Okay, we are not living through civil war or natural disaster. I know. And I am being a bit of a baby talking about my lack of showering and sleep. Indulge me, please.

Julia and I went to bed before nine last night and slept until 8 this morning. It helped me incredibly! I've been keeping up with what I need to do, but I am hoping to find someone to clean the house before David gets home. Silly me to imagine that I would find the time to do it. And time is this crazy thing. Robert asked me what I was doing with my time with David. What? Well, I write some, wander the internet some (Still reading about kitchen renovation to sanity), I can't read and sustained tv watching is impossible. I sit mostly. Sit. Watch David. Get him water. Call the nurse. Watch him sleep. Say a few words. Sit and watch some more. Day blends into night into day again. I felt last night that I couldn't wait to have another 24 hours finished with, and it is almost another day passed. Even though David complains of pain and weakness, I see improvement.

05 March 2010

Day 3 Afternoon

It is after 2 and we are back to a good status quo. Breathing tube is out and David is talking again. He is still having trouble sleeping caused by both the people coming in and out, and by pain caused by the chest tubes, this incision, and the wear and tear on his chest after the CPR this morning. He is fitfully napping and I guess that is the best he can expect for awhile.

His doc team may have been lulled into relaxation yesterday, but the morning's incident has them back to high alert. From the little that I know and understnad about transplants, complications are not unusual or really unexpected. His nurse is now headquartered in his room and numbers are run over and over again. the nurse just told David that they will not take the drainage tubes out of his chest today. Something that David was looking forward to very much. The tubes are incredibly uncomfortable and his hope was to get the tubes out and then some good sleep.

Funny how it all centers around sleep right this moment.

I feel like this stress of today is what yesterday should have been like -- day after surgery fears.

Watching the nurses' minute to minute reactions -- sighs, grimaces, swift then slow moments. I ask them regular questions but they don't do a running comtentary. right this second, something is not right. It may be corrected in another minute. They take more blood. David naps for 2 minutes this time. The nurse checks numbers over and over.

Before they took the breathing tube out of David's mouth, he asked for a pad and pen to ask some questions and let us know if he was okay. One of the things he asked was whether he was home when he fell. That scared me to death. I felt the chill. After the tube came out, he told us that he had been dreaming about being home before he stood up. And Cheshire and I heaved great sighs.

Sorry, but I dont have the patience for spell check.


Did I write about Julia before? I don't remember. She is at Cathy's house with one of Cathy's daughters, Chrissy. Cathy has 4, all from China, all lovely girls. Chrissy is Julia's favorite. They rode the bus home together from Camp Shalom and Chrissy always sat with Julia. they are coloring and Julia is chattering away. She told Cathy in no uncertain terms that she was not going to school today. ah, my kid. She says that many morning and we are still able to get her off to her daily scheduled activities, but Cathy took pity on the kid today. As long as she is somewhere that she wants to be, taken care of and busy. After school, she has many hours of therapy, and sometime during that time, I will figure out tonight.

David is breathing on his own but they have not taken the tube out yet. About an hour ago, the nurse decided to put an additional tube in -- a tube to his stomach.`So it is not an experience to desire. Suffice it to say that David have a very strong gag reflex.

the long version 1

the immediate update is: We got a call at 3 this morning that David had fallen and was unresponsive. Fall? Yes. He was trying to stand to pee -- without calling the nurse -- and he fell over. They surmise that he got dizzy and passed out. For a reason we will never know, his heart kept beating but his body did not respond. They had to do compressions/CPR on him for about 15 minutes before his body started working again. By the time I got to the hospital, they had stabilized him and put him back on the ventilator. The ventilator really bothers him but he will have it in for another few hours. As I write now, they say his numbers are all back to where they should be, some are better, but we are shaken.

the longer version: I am just going to let myself indulge, self-indulge, so bear with me, stop reading, what ever you are comfortable with. This writing is strickly for me.

the phone call was exactly what those phone calls are always like. they are awful, they are uninformative, and the person answering has to ask stupid questions. Does unresponsive mean that his heart stopped? I did not say die or dead, the closest I could get to my question was to ask about the heart, the organ. If I would have asked has his soul left his body, would anyone been able to answer. Do the medical professionals call it death? Is it? I spin out to ask what death means -- I find it very hard to be present here. I am both in a future where all is better, and one without David, i am in a past of regret. How could we leave him alone? It was not the nursing staff -- it was not that they were not watching. It was that he disobeyed instructions. He tried to get up by himself. To pee. TO PEE, damm it! and he had to have that catheter taken out yesterday. I know, it was uncomfortable, and I know that we all were taking his feeling better, feel well, except for the discomfort of the catheter and his chest tubes, and so to complain about both and to ask for them to be taken out as soon as possible made some sort of sense. What makes sense?

Driving on Madison's empty streets at 3 in the morning. HAve I been out on these streets at this time? Everything was quiet, one car on teh road with me, yellow lights. I went through the few red ones that stopped me as if they were stop signs. No danger and no crazy driving. I was able to concentrate -- apauled by a feeling of being where I should be and doing as I should. I just needed to get there, to the hospital as quickly as I could. I was present for those minutes.

He was not awake when I first saw him. Not conscious. the breathing tube was in again and Cheshire said that all she could see was his heart beating. He looked scary but most of what looked so bad was the effect of the muscle relaxer that allowed them to put in breathing tube. They first told us that he might not wake up until all the relaxer wore off.

the relief of yesterday; the caution of the present moment.

No one looks good with a breathing tube. david is no exception. Now the nurse has set up in David's room. No one is going to leave him alone right now. Cheshire and I sit -- cheshire in the one more comfortable chair and she is dozing. I am on a padded folding chair. If I fall asleep -- and each time I begin to relax even a small announcement that David is doing fine my eyes feel heavy -- I will fall and wind up looking like David. I look at the time and ches and I have been at the hospital for almost 7 hours. No wonder we are fading.

I go to a small waiting room on the floor filled with really uncomfortable furniture. I told Cheshire before that it reminded me of a set for Satre's No Exit -- purgatory/hell might be perfect filled with plastic. I except, however, that I will fall asleep in a second here. A nap would feel very good. A nap and another one later will definitely sustain me for the day.

more later.

04 March 2010


Cheshire and I walked into David's room at 8:40. He was sitting up in bed chewing on ice. He is doing great. The breathing tube came out at about two in the morning after he woke up at about one. David has been up most of the night, dozing every so often but not for long. He said he had many short, intense dreams, and later, one of the nurses told us that strange thoughts and dreams are probably due to the pregnizone that he is taking through this IV. They have begun to step down on this and other drugs but David will be on lots and lots of drugs for awhile.

Every so often, people come in the room, to listen to his heart (I think the hospital made a general announcement that anyone with a stethescope should come and take a listen), checking vitals and drugs. David has already seen an OT and a PT and they have given his appropriate exercises. He must be careful not to push and pull, lift his hands over his head, or reach behind himself. All of these movement can slow the recovery of his sternum.

David has an incredible amount of tubes, monitors, wires, and other stuff coming out of arms, legs, his neck, and his chest. The chest is sore and breathing hurts, but those are his biggest complaints. He also can have and wants better jello. I am thinking I will make some at home and bring it tomorrow.

And he is talking about what movies he wants to see. (Nixon v. Frost?) And planning what we are going to do (in his room) this weekend. We will bring Julia up on Saturday after therapy. In truth, David looks good enough for her to come today, but he can use a few days to feel a bit less fragile.

Julia had a hard but quiet day yesterday. She did not want to do much at school. I think they made sure she was comfortable with books and coloring and let her be. She didn't eat a thing for lunch but did okay last night at dinner -- peanutbutter on bread, noodle soup and pizza. She was walked home by one of the aides who is kind and wondertul to Julia. Morgan and later Amy came over for therapy and then Morgan returned to put Julia to bed and stay with her until we came home. Julia asked Morgan about Daddy and his heart and the hospital and was satisfied with what Morgan told her. By the time I got to bed, Julia had crawled into our bed and was snuggled down under my quilt. When we woke up this morning, Julia asked me about David first thing. It was lovely. How was he? Did he have a new heart? Was he in the hospital? I got an email from school today and it sounds like Julia is doing well today. I expect she understood the relief in the house this morning.

When we went outside this morning,we could feel spring coming. Birds chirped and a breeze, not a wind, blew. Julia started talking about meling snow, growing flowers, butterflies, bees and sunflowers. She ended by saying, "When I am a famous artist, I will paint a picture of sun florwers that the bees will like." It touched my heart! Julia usually talks about not ever growing up, staying small. She also usually doesn't want to talk about doing anything, even drawing or painting for all of her life. It felt like she had made some leap.

Thank you dear readers, for reading, for commenting, for visiting and sitting for awhile. the support that we've received since David got the call has been unforgetable. I am rich with connection and love.

03 March 2010


At 6:10, a nurse called from the OR to let us know that the new heart was in!!! and beating on its own. They had taken David off the bypass machine and were waiting to see if there was any bleeding before they begin the process of closing him us.

From the fact that they are making excellent time, I am supposing that all is going very smoothly.

6:40 Another call. They are closing David up. All is well. If all goes as it has been, we will see him in 1.5 hours.

Blessings! We are held by angel's hands gentle and strong.


and David is in surgery.

Cheshire is here at the hospital with me.

Nice texts messages from my sister.

The waiting had suddenly changed color. No longer waiting for things to start. Now, I can wait for things to finish. No, not finish just yet. Now, I can wait for the periodic updates. 4-12 hours is the general rule of thumb. In David's case, they are saying 6-10. Still, by tonight. Still, there is an end in sight.

Waiting for a heart was worse than waiting for the end of pregnancy or waiting for our TA -- permission to travel to China -- but worse. Way worse. But now, this wait is like others. Sure it is about David's HEART. A new heart! Incredible to even fathom. But it is a wait that has a beginning and eventually an end.

Cheshire and I are sitting waiting. Chatting about all the inconsequential things of life. I do so value her presence.

So we are sitting waiting chatting, and this guy in a red shirt comes by and asks if I am Suzanne and tells me that David went into surgery. The front desk of the waiting room -- waiting big room -- has my cell phone number, and gave me a restaurant beeper, but this guy knew to ask me who I was.

3:03 Things are going well and they are onto by-pass.

Day 1

And so it begins.

The phone rang a bit before 5 this morning (What we have heard since is that his medical team got the calls at 4:30). David jumped up to get it; I waited in bed until I was sure what it was, but I knew what it was. There is a heart. We were told to get to the hospital as soon as we could. By 6 if possible. David jumped in the shower after shaving -- now, sitting in the hospital, David is showering again. Will he shower a third time before he is taking into surgery? I called two of our therapists and our lead came over. She lives about 20 minutes away and i think she was at the house 20 minutes after I called. Julia was happy to see her, shouting upstairs to me, "Mommy, mommy, Debbie is here!" I picked out clothes, Julia got dressed with no complaint at all. That kid is very good under pressure. I made her lunch and laid out her meds. I loaded a bag for myself and we were off.

We are less than 15 minutes to the hospital, and there was more traffic than I expected at 6 in the morning.

The hospital was quiet when we came in and nothing was fast enough. We walked through jello and spoke very slowly in an empty emergency room. We got our directions and moved upstairs to David's room.

And then it started.

Weight and height, blood pressure and pulse, and the questions. People are coming in and out, introducing themselves, asking the questions they need to and wishing luck. As the hours tick by, more people come in, have David sign forms after a few questions. The few questions that David answered for the last person and the person before but each person needs to hear it for themselves. These people are friendly, concerned, and considerate. Probably hospital cordiality but sincere. Or they are good at faking it.

I've talked to a few people on the phone. Cathy first after Cheshire. Barb texted me and I called her afterwards. Yes, I do have time and could have made all the phone calls myself, but oh so nice to have Cathy take care of it and not have to repeat the story over and over. And there is not much of a story right now to tell.

What we know is that the donor heart is not harvested yet. There is no other information that they will give us. There was mention that the harvesting team may have to wait until the lungs come out. This is all we know of our doner.

By the time I went downstairs to the cafateria for some breakfast, the halls and elevators were crowded and noisy. It was the noise of morning, getting to work, getting ready to do the work of the day. I stood in the cafeteria unable to pick food; the lady at the egg station told me to have a breakfast burrito. It was good but way too heavy. I am sure it will be with me most of the day. Oy!

I rode back upstairs in a crowded elevator with David's surgeon and his gaggle of an entourage. Small town, rock star status. Because the surgeon had stopped into David's room before I went for food, the doc recognized me and I was introduced and wished luck.

So now we sit alone. David has talked to Cheshire and to his Dad. Cheshire in bound for Madison; his father is worried. It is 10 already. David is due to go downstairs in another hour and a half. Maybe. The most we've heard is that they think it will be sooner rather than later.

Today is David's father's birthday. He is 91 today.

They call this Day One.

02 March 2010

From the new laptop

I am writing from my new laptop -- Macbook pro that is shiny, new, and bigger than my old laptop. And more expensive as well, but oh what fun it looks to be. It will be awhile before I am fully integrated, everything is new -- program, terms, physical movements, and I have not made myself change over like this for a long time. My last brush with computer change was when I stopped using WP and switched to open office -- a free program that is "out of the mainstream" as my salesperson today explained. With the Macbook, I will be switching word processing, photos, and the general operating.

Well, change is good.


David brought home a copy of Ponyo from the library. It is a new release but I'm sure the line for it was not long. We loved it in the movies -- it was the movie that started Julia going to movies after a rather long strike.

This morning Julia asked about her heart candy -- the kid heart that Daddy gave her for Valentines. There were originally 5 pieces of chocolate in it and she had eaten one on Valentines Day -- moderate to say the least. David and snacked on another two and there were two left. I showed her this morning and promised she could eat them tonight. So after dinner, I took the box down and offered it to Julia. She opened the box and offered her Daddy one of the two chocolates. What a sweet child. She is instinctively generous.

Julia had a good day at school -- doing work, preferring math work to recess outside, and eating most of her lunch of noodles. She was having so much fun at school that she did not want to go home and was quite grumpy when I picked her up. I took her home and we sat together cuddling until her therapist came. She managed to calm herself but I still do not know what the grumpiness was about unless it was just the problem of transitions.