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.
05 March 2010
04 March 2010
Day2
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.
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
6:10
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.
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.
2:25
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.
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.
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.
Right?
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.
Well, change is good.
Right?
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.
27 February 2010
Seven characters
Julia has been pretty tough on the therapists yesterday and today. Just staunchly in her NO frame of mind. I spent about 45 minutes holding her this morning during a therapy session to get her calmed down to a place where she could play.
If only I could get inside that head!
Still working on the life book. I am using every picture I have of her early life to put together this much simpler than I thought I would do book. I hope to answer and raise some questions that are coming up now. I find it hard to write only about her or from just her perspective -- mainly because I have so little information to use. I can write about the history of the one child policy, orphanages and abandonment, and our paper chase, but that is not relevant to her now. So it goes slower than I expected but I am pleased with the pages I have finished. The tension between word and pictures feels important. I cut and add frequently.
But I am not going to work on it for 6 months. Another week perhaps. Biggest snag right now, my computer is dying. Well, dead right now. The quick fix of two weeks ago was just that -- quick but not complete. I don't want to spend any more money on it. It may be time to give in and buy a new laptop.
I was scanning the short note that was said to have been found with Julia. I am overwhelmed by the fact that this copy of a note with 7 characters and a few numbers on it is the closest link I have to her birth family. I want to translate the entire thing. I have the rough translation that it says what day she was born on, but I want to squeeze those 7 characters to find out if there is anything else. How I would love something else about her parents. I can't expect it, but to even here that the characters are written with a fine hand, a messy hand, or someone who really couldn't write well, might be something.
Although I thought carefully when we first talked about adoption and how I did not want an open adoption of any sort, I find that I was totally wrong.
If only I could get inside that head!
Still working on the life book. I am using every picture I have of her early life to put together this much simpler than I thought I would do book. I hope to answer and raise some questions that are coming up now. I find it hard to write only about her or from just her perspective -- mainly because I have so little information to use. I can write about the history of the one child policy, orphanages and abandonment, and our paper chase, but that is not relevant to her now. So it goes slower than I expected but I am pleased with the pages I have finished. The tension between word and pictures feels important. I cut and add frequently.
But I am not going to work on it for 6 months. Another week perhaps. Biggest snag right now, my computer is dying. Well, dead right now. The quick fix of two weeks ago was just that -- quick but not complete. I don't want to spend any more money on it. It may be time to give in and buy a new laptop.
I was scanning the short note that was said to have been found with Julia. I am overwhelmed by the fact that this copy of a note with 7 characters and a few numbers on it is the closest link I have to her birth family. I want to translate the entire thing. I have the rough translation that it says what day she was born on, but I want to squeeze those 7 characters to find out if there is anything else. How I would love something else about her parents. I can't expect it, but to even here that the characters are written with a fine hand, a messy hand, or someone who really couldn't write well, might be something.
Although I thought carefully when we first talked about adoption and how I did not want an open adoption of any sort, I find that I was totally wrong.
26 February 2010
Day off Friday
Julia has the day off and I want to try a few things with her before her therapists come at 3.
Julia has been drawing for 2 hours. She is working on her 7th drawing. The first one that she made, that started with a big zero in the middle is the most interesting. She works carefully, intensely, getting excited some of the time, but so obviously enjoying every minute. She now stops at time to sharpen her pencils. We have to get her a better sharpener.
Two hours and ten minutes: Julia stopped drawing and is on to playmobil with hospital and dino scenarios. I did not give Julia her meds until 11 to see if there is any difference for her afternoon therapists. They usually get her on her way down. We made a schedule that included walking the dog, cleaning up toys, washing clothes, paiting, reading work, framing a picture, and playing with makeup.
Julia's appetite has returned. It is off from the school's schedule of and 11 am lunch. She is verily happily eating two pieces of pizze and a bottle of ensure at 1. She did lose another pound in the last three weeks but I hope that she can gain back what he has lost by the time we see the doc again -- 4 weeks away.
We are doing our reading work -- word bingo for Julia's current sight words. Amazingly, she did not reject the game out of hand like I would have expected. This is the same time we played this at home (I don't know about school) and she handled it well. We will do some reading and then some works book pages in math and reading (still in the kindergarten books). And then, I promised her a new make up game.
Julia has been drawing for 2 hours. She is working on her 7th drawing. The first one that she made, that started with a big zero in the middle is the most interesting. She works carefully, intensely, getting excited some of the time, but so obviously enjoying every minute. She now stops at time to sharpen her pencils. We have to get her a better sharpener.
Two hours and ten minutes: Julia stopped drawing and is on to playmobil with hospital and dino scenarios. I did not give Julia her meds until 11 to see if there is any difference for her afternoon therapists. They usually get her on her way down. We made a schedule that included walking the dog, cleaning up toys, washing clothes, paiting, reading work, framing a picture, and playing with makeup.
Julia's appetite has returned. It is off from the school's schedule of and 11 am lunch. She is verily happily eating two pieces of pizze and a bottle of ensure at 1. She did lose another pound in the last three weeks but I hope that she can gain back what he has lost by the time we see the doc again -- 4 weeks away.
We are doing our reading work -- word bingo for Julia's current sight words. Amazingly, she did not reject the game out of hand like I would have expected. This is the same time we played this at home (I don't know about school) and she handled it well. We will do some reading and then some works book pages in math and reading (still in the kindergarten books). And then, I promised her a new make up game.
25 February 2010
Thursday
This will be short. I am working on Julia's first life book and I want to finish it as soon as I can. Still, I am sure that it will be another week before I am done.
*Saw the drug doc today. He suggested an antidepresant -- an SSRI -- to work on Julia inability to handle transition. I want to read some about them before we add a third drug to her routine. We are staying with the Aderrall 10 mg rx and adding .5 mg Guanfacine in the evening, giving her .5 mg mornings and 1 mg at night.
*Julia had a tantrum today at school. Morning transition from drawing to math. She took a shorter time to calm down but had to be taken out of the class room for her to calm down.
* Talked to Marilyn further about Julia's inability to do reciprocal interactions. Looking to see what we can do to make up for her earliest neglect -- mimicking mommy and daddy as a very young baby. I am going to try makeup this week. More on this later.
*Drawing. Just more wow! Need to take more pictures. A surfing penguin in an ocean of blue and brown -- the brown lines to show motion.
*Lots of hospital make believe.
*Saw the drug doc today. He suggested an antidepresant -- an SSRI -- to work on Julia inability to handle transition. I want to read some about them before we add a third drug to her routine. We are staying with the Aderrall 10 mg rx and adding .5 mg Guanfacine in the evening, giving her .5 mg mornings and 1 mg at night.
*Julia had a tantrum today at school. Morning transition from drawing to math. She took a shorter time to calm down but had to be taken out of the class room for her to calm down.
* Talked to Marilyn further about Julia's inability to do reciprocal interactions. Looking to see what we can do to make up for her earliest neglect -- mimicking mommy and daddy as a very young baby. I am going to try makeup this week. More on this later.
*Drawing. Just more wow! Need to take more pictures. A surfing penguin in an ocean of blue and brown -- the brown lines to show motion.
*Lots of hospital make believe.
24 February 2010
It's snowing. Okay, no biggie in Wisconsin in February, but it has been a different kind of snowing the lat few days. Maybe this is normal February weather but we have not seen it in Madison during the last two winters.
Every day in the early afternoon, it begins to snow. Light flurries mostly, and it snows though out the rest of the day until night fall but only accumulates about a half inch or so. And then the next morning the sun comes out and by noon, the sidewalks are clean because the snow has melted. At least the snow has melted on my sidewalk. Many . . . Most of my "real" Wisconsin" neighbors have shoveled the walk before they go to work or take the kid to school.
Of course, after announcing our perfect daily snows, we will probably get 5 inches tonight. Still, there is a definite push towards warmer weather, just don't forget your gloves. Not quite yet.
Julia and her whole school went to see a live stage production of Lilly's Purple Plastic Purse. It was based on the kids book by the same name written by Kevin Henkes. Julia loves that book and almost all of Henkes' books, and she LOVED the play! From what the teachers said, she was willing to wear her ear plugs and her earphones to the beginning of the play and took them off when she was comfortable. When she got back to school, she started drawing a wonderful picture of Lilly and her teacher, Mr. Slinger. When she came home, she added words to the picture and made sure they were all spelled correctly. It was great.
Every day in the early afternoon, it begins to snow. Light flurries mostly, and it snows though out the rest of the day until night fall but only accumulates about a half inch or so. And then the next morning the sun comes out and by noon, the sidewalks are clean because the snow has melted. At least the snow has melted on my sidewalk. Many . . . Most of my "real" Wisconsin" neighbors have shoveled the walk before they go to work or take the kid to school.
Of course, after announcing our perfect daily snows, we will probably get 5 inches tonight. Still, there is a definite push towards warmer weather, just don't forget your gloves. Not quite yet.
Julia and her whole school went to see a live stage production of Lilly's Purple Plastic Purse. It was based on the kids book by the same name written by Kevin Henkes. Julia loves that book and almost all of Henkes' books, and she LOVED the play! From what the teachers said, she was willing to wear her ear plugs and her earphones to the beginning of the play and took them off when she was comfortable. When she got back to school, she started drawing a wonderful picture of Lilly and her teacher, Mr. Slinger. When she came home, she added words to the picture and made sure they were all spelled correctly. It was great.
23 February 2010
Tuesday morning
Sometimes it is just time to dig in and do it! And that is today, right now, this minute. I mailed in Julia's enrollment in special olympics and I hope that we can find things for her to do with that group. I also found a university program that I want to apply for. It's called the MCH Lend program and the purpose is as follows:
Now to the Y and shopping for windows.
The goal of the Wisconsin Maternal and Child Health (MCH) LEND Program is to provide interdisciplinary and disciplinary leadership training for graduate students and community professionals to improve systems of care that promote the prevention of disabilities and assure access to services for children with neurodevelopmental and related disabilities and their families. This is accomplished through interdisciplinary and disciplinary advanced clinical and leadership training of graduate students in the core disciplines, continuing education, technical assistance and consultation for community professionals. Trainees gain competencies in interdisciplinary clinical care, family needs and preferences, and the public health system.
Now to the Y and shopping for windows.
22 February 2010
Monday
Not at all a good day for me. And for Julia, well just so so.
Julia had a frown for math time today on her behavior chart. She did not want to do math, threw her pencil and paper, and scratched Sheila, her aide. Sheila is the model of patience -- she is an adoptive mom and has at least one kid with some severe needs. Julia also had a hard time in gym today. They are working on basket ball and Julia enjoyed that last year. Today, the noise in the gym was too much -- Julia has become more sensitive to noice and even with ear plugs, she is scared of the vibrations in the gym. She also expressed lots of fear that the balls were going to hit her. She was too afraid to do anything but sit in the corner and zone out. And she preferred to stay inside during recess today and do the math that she missed in the morning.
Julia is in a no mood today. This was her modus operandi during her first two years at home. Ask her anything and her answer is no. Booo! Boo Ya! in Chinese, and then no's as she learned English. It is not as intense right now, but it feels the same. The mood feels the same. And so, is it fear? Of what? Is it the drugs? Is the noise simply driving her nuts?
Breakfast and supper are okay. Julia is still not eating much, if at all, for lunch. We are giving her ice cream after dinner. And she is doing well on the whole milk lactose free.
As for me. I did nothing today. Malaise. Not good at all.
One of the reasons that I have not worked on a life book for Julia up to this point -- other than that she had absolutely no interest at all -- is my anger and utter saddnes about Julia's life in China. This anger and saddness is heavy on my heart tonight. And it is time to work on a lifebook for Julia that we can read together.
Julia had a frown for math time today on her behavior chart. She did not want to do math, threw her pencil and paper, and scratched Sheila, her aide. Sheila is the model of patience -- she is an adoptive mom and has at least one kid with some severe needs. Julia also had a hard time in gym today. They are working on basket ball and Julia enjoyed that last year. Today, the noise in the gym was too much -- Julia has become more sensitive to noice and even with ear plugs, she is scared of the vibrations in the gym. She also expressed lots of fear that the balls were going to hit her. She was too afraid to do anything but sit in the corner and zone out. And she preferred to stay inside during recess today and do the math that she missed in the morning.
Julia is in a no mood today. This was her modus operandi during her first two years at home. Ask her anything and her answer is no. Booo! Boo Ya! in Chinese, and then no's as she learned English. It is not as intense right now, but it feels the same. The mood feels the same. And so, is it fear? Of what? Is it the drugs? Is the noise simply driving her nuts?
Breakfast and supper are okay. Julia is still not eating much, if at all, for lunch. We are giving her ice cream after dinner. And she is doing well on the whole milk lactose free.
As for me. I did nothing today. Malaise. Not good at all.
One of the reasons that I have not worked on a life book for Julia up to this point -- other than that she had absolutely no interest at all -- is my anger and utter saddnes about Julia's life in China. This anger and saddness is heavy on my heart tonight. And it is time to work on a lifebook for Julia that we can read together.
21 February 2010
I want to start a life book for Julia. I have been thinking about it lately. Julia is asking more questions about China, being a baby in China, and waiting for us to come and get her. I think it is time. Marilyn also suggested that I begin. So, yesterday I started gathering pictures and seeing what I had. I usually complain that Julia came with so little, that there was nothing of her past, her life in China before us, but as I went through our file there are bits and pieces of information and I will have something to make this book for Julia.
20 February 2010
Bendaroo art
Most of these figures are copied from the instructions provided with our set. Julia started to branch out by making the little octopus, the crab and the baby whale which did not photograph all that well. Julia had a lot of help with some of these. As Julia made more, she needed less and less help.
Julia made the cat without instructions and all by herelf.
And now we are running low on bendaroos. I have to find some a bit cheaper than this set cost.
Julia made the cat without instructions and all by herelf.And now we are running low on bendaroos. I have to find some a bit cheaper than this set cost. Saturday morning
I am still pissed that I lost my last post. However . . . .
Today, I am going to learn to scan photos on my new printer, take some pictures of my bathroom and the old kitchen cabinet in the basement, and make a big pot of beef stew for our church supper tomorrow evening (the recipe says that the stew benefits from standing over night and I usually don't do that. Of course, we will eat it tonight for dinner as well without standing over night).
It's snowing, slowly and lightly but snowing nonetheless. Julia is with a therapist now until noon; David is going to a blocking rehursal for his play until 2. After the therapist leaves, I am planning an at home quiet afternoon with Julia: painting, reading work, and bath will take us most of the afternoon.
Lovely, lovely day.
Oh, I miss my Cheshire. She left yesterday and I started missing her as soon as I dropped her at the airport. It was nice to get her text message later on that she was back on NYC soil and missing us. I don't know how else to say it but that Cheshire completes us. When she is home, I feel like a complete family -- not that there is not room for others, not that at all, but that we are a happy, content circle. I hope that one day she settles closer to where we live or that we move closer to where she is. I am so fortunate to have such a daughter -- I know that my mother never had this kind of a relationship. She never asked for it, but she never had it either.
Julia is bursting as usual. Yesterday morning, Julia barged into Cheshire's bedroom to say good-bye to Cheshire. Julia told Cheshire that she was going to miss her and then asked to take the pink bear (which is really Cheshire's but also used by Julia most of the time) into her bedroom. Halmark moment? Indeed. Very sweet.
Last night, I read the book, The Jolly Postman (an old favorite of Cheshire's) to Julia. It is a little book that has letters to different fairytale characters. I had not read the book before to Julia thinking that she would not understand the concept. She loved it last night and woke up this morning eager to draw/write a letter of her own. Julia's colored pencils are her best friends these days.
The last two weeks or so, Julia has been covering pages with "words", actually letters, in an attempt to write more. I think I've said that I can usually pick out Mom, Dad, and Julia amonst the letters. This morning, she is drawing little pictures on the sides of her letter like those in the book. I don't always know what will inspire Julia but when I find something she does take off.
I found some wiki sticks last weekend -- bendaroos -- and Julia has been playing with them all week. She and her therapists copies a number of the two dimentional shapes and then went on to the three dimentional animals. The set came with detailed directions which appeared pretty complicated when Julia began to use them but were well written and illustrated and taught Julia the basics of working with the bendaroos. Then two nights ago, Julia started on her own creation -- she made a wonderful cat following the general direction for making three dimentional animals. She is generalizing! Which is very important for kids with autism who seem to have touble with this concept. I have to check on ebay and other sources to see if I can find more bendaroos at a reasonable price.
I have been talking to Beth and Ginny, Julia's teachers, and to Debbie our lead therapist about drawing and regulation. All agree that drawing, clay, and now bendaroos, can be a regulator for Julia. She definitely instinctively uses drawing this way in the morning when she first come into school. But at some point, the act of creation is also super stimulating. So the engine settles into the place just right and then soars too high. Using this knowledge comes next or at least soon.
Today, I am going to learn to scan photos on my new printer, take some pictures of my bathroom and the old kitchen cabinet in the basement, and make a big pot of beef stew for our church supper tomorrow evening (the recipe says that the stew benefits from standing over night and I usually don't do that. Of course, we will eat it tonight for dinner as well without standing over night).
It's snowing, slowly and lightly but snowing nonetheless. Julia is with a therapist now until noon; David is going to a blocking rehursal for his play until 2. After the therapist leaves, I am planning an at home quiet afternoon with Julia: painting, reading work, and bath will take us most of the afternoon.
Lovely, lovely day.
Oh, I miss my Cheshire. She left yesterday and I started missing her as soon as I dropped her at the airport. It was nice to get her text message later on that she was back on NYC soil and missing us. I don't know how else to say it but that Cheshire completes us. When she is home, I feel like a complete family -- not that there is not room for others, not that at all, but that we are a happy, content circle. I hope that one day she settles closer to where we live or that we move closer to where she is. I am so fortunate to have such a daughter -- I know that my mother never had this kind of a relationship. She never asked for it, but she never had it either.
Julia is bursting as usual. Yesterday morning, Julia barged into Cheshire's bedroom to say good-bye to Cheshire. Julia told Cheshire that she was going to miss her and then asked to take the pink bear (which is really Cheshire's but also used by Julia most of the time) into her bedroom. Halmark moment? Indeed. Very sweet.
Last night, I read the book, The Jolly Postman (an old favorite of Cheshire's) to Julia. It is a little book that has letters to different fairytale characters. I had not read the book before to Julia thinking that she would not understand the concept. She loved it last night and woke up this morning eager to draw/write a letter of her own. Julia's colored pencils are her best friends these days.
The last two weeks or so, Julia has been covering pages with "words", actually letters, in an attempt to write more. I think I've said that I can usually pick out Mom, Dad, and Julia amonst the letters. This morning, she is drawing little pictures on the sides of her letter like those in the book. I don't always know what will inspire Julia but when I find something she does take off.
I found some wiki sticks last weekend -- bendaroos -- and Julia has been playing with them all week. She and her therapists copies a number of the two dimentional shapes and then went on to the three dimentional animals. The set came with detailed directions which appeared pretty complicated when Julia began to use them but were well written and illustrated and taught Julia the basics of working with the bendaroos. Then two nights ago, Julia started on her own creation -- she made a wonderful cat following the general direction for making three dimentional animals. She is generalizing! Which is very important for kids with autism who seem to have touble with this concept. I have to check on ebay and other sources to see if I can find more bendaroos at a reasonable price.
I have been talking to Beth and Ginny, Julia's teachers, and to Debbie our lead therapist about drawing and regulation. All agree that drawing, clay, and now bendaroos, can be a regulator for Julia. She definitely instinctively uses drawing this way in the morning when she first come into school. But at some point, the act of creation is also super stimulating. So the engine settles into the place just right and then soars too high. Using this knowledge comes next or at least soon.
17 February 2010
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