30 December 2009


Julia and I have been working with the Leapster 2 every day since Christmas. The first two days, I had to do a lot of encouragement. The Kindergarten program that I bought really does take a kid through the basics in how to use the pen, the arrow pad, and the A button. Julia was frustrated at first, especially when she had to use both the A button to jump and the arrow to move in a direction as she jumped. I tagged the Leapster to the end of our reading work and we sat of the couch with a blanket over us, cuddling down together. We worked with the Leapster for about 20 minutes together. Today, Julia is sitting beside me and doing the Leapster by herself. She is getting better at the four games on this program and can "buy" the monster parts with the tickets that she earns. She is beginning to get it! She is stil working with level 1 for all of the games but I expect that she will move up as the games get easy.

I have read about Leapster and how kids learn and use it but did not expect Julia to catch on so fast. Oh, I am pleased. There is a educational component in each game -- sometimes not a big one but something. Any reinforcement of letters, numbers, words, math is time well spent for her. AND it seems to be based on following verbal directions, with a button to repeat questions. And she is paying attention and little by little is listening more, as in "pop the orange heart with the lower case p." This is complex listening that I didn't know she was able to do. Now, she is not perfect and needs to listen more carefully, but she is doing just that. And she is enjoying the rewards.

Cheshire and I are having a day out -- shopping, that is, returning her Christmas presents and getting what she wanted, then hair cuts, dinner and a movie. Julia is getting Daddy time before therapy today. Oh, this should be fun!

28 December 2009

To answer Sarah's two questions:

Yes, Cheshire got home safe and sound and only a half hour late. Incredible! And we are so happy to have her home for the week.

And the Leapster 2 -- so far so good. I think it is a very good learning tool. We bought two programs -- Kindergarten and Pet pals. The first really teaches use of the leapster in general -- something which might help me. Julia can be either patient and go through the games/exercises or really frustrated with it. But she needs to learn when to use the arrows and jump buttons. Some kids might fall into this without any trouble. Julia needs to practice. I've been sitting with her when she plays and then leaving her alone when I feel she's done enough. So far she has played with it beyond my time with her but not for a long time. We have a way to go before it will occupy her on a long trip. From what I've read, there is a learning component to every game, with some more prominent than others. There is also an online check in for parents to see how the kid is using the games. That will not be of much value to me until I let her work with the leapster without me.
Monday morning, a 9 o'clock therapist and we are still in pj's. The therapist, although new to us, is cool about the pj's. Julia is ready to play. I did some very last minute pick up and sorting of toys which were spread over three rooms. I don't at all feel like cleaning but there is a necessity.

I am an awful housekeeper. And you know, I just don't care that much. I love a clean house, but I wish someone else wanted to do it.

I talked to Cheshire about what I do for reading work with Julia and she suggested I do more word games and word use, and pull back on the book reading. Because I usually can't do reading work every day -- when we have hours of therapy after a full day of school, I don't make Julia do more . . . . But rethinking that right now, I wonder if that is the exact time to do book reading because Julia does it cuddled up with me.

Back to original thesis of not doing reading work on busy days, I get exhausted too, and on those busy days, I want only to become a couch potato and turn on tv. I am resolving to do less of that -- we need to both read and play games. Maybe couch slug time should be our time to read to Julia.

27 December 2009

Julia slept until 8:20 this mornig.

26 December 2009

The woman in China

Tonight, as I was putting Julia to bed, Julia started talking about "the woman in China." She talked for a long time. I am not sure if she was imagining or remembering, but what she told me did not include dinosaurs or any other fantasy that she usually talks about. She told me that the woman in China told her that she did not belong in China. She belonged with her parents. The woman liked her and kissed her and said to get into the car. The woman was a teacher. The woman took care of her but told her to leave to go home. The woman said she had to leave China and go to Wisconsin (We lived in Indy when we went to China). The woman told her not to come back to China. The woman found our house and brought Julia there.

Julia then said that she was angry and scared and afraid. She did not act on those emotions. She asked me if I was happy that she was in Wisconsin. I told her yes, I was very happy. She asked me a few other questions, if I loved her, if she had to go back to China, and where her home was. She asked whether the woman was going to come for her. I told her over and over the I loved her, that she was home, and that she was safe.

Julia went back to talking about the woman in China, saying some of the same things she said before. Then, she turned over and went to sleep.

The day was not easy. Julia was resistant about everything. I don't know whether it is the side effect of the drug or just where she is right now.

A little bit of Christmas

Julia's aunt and uncle send two playmobil sets. One is a hospital room and the other an operating room. She had been playing with it since she opened it. Another favorite was the kid microphone. Julia is having so much fun with this.

An so is Daddy. Look at that face as she looks at her Dad.

Christmas Eve plus some

On Christmas Eve, we all got ready for Santa's visit. Julia's doll house has been decorated for a few weeks now and the baby squirrels have a nest made of fresh pine needles. There is a tree with one decoration on it in brother's room.
Our mantle piece was decorated with a "gingerbread" house that Julia made last week. Just before bed, Julia put up her own stocking and then put up mine -- so I would not forget.
And then it was time to go to sleep and wait for Santa.
Julia woke up early on Christmas morning and she and I went downstairs. We let David sleep some. Julia's excitement as we walked downstairs in the dark was contagious; it was so very sweet. It was electric. I could remember that physical feeling of excitement and remembered coming down other stairs and into a living room with a decorated tree with what looked liked a mountains of presents crowded around it. Julia oo-ed and ah-ed. She looked at the boxes and looked at the little cards to find her name. I told her that we had to wait for Daddy and she was pretty happy to watch her morning tv shows while I puttered around the kitchen putting breakfast together so we could open presents as soon as David got up.

24 December 2009

Julia slept late this morning, almost until 7:30, and we are letting David sleep a bit later. David has off today, which I forgot and which is great! My only tasks today are to shovel/blow snow, shop for some food, and clean up the house. We have a family church service at 3 and I am hoping that Julia enjoys the singing. We have had a few episodes of standing around our tree and singing the Whoville Christmas song tht we never know all the words too. It is both very dear and really silly.

David was not feeling great yesterday, and the only time I have felt so compulsive about health was when Cheshire was a new born. Every sneeze and cough brings a gulp of fear -- This waiting may go on for months or a year. Waiting is exhausting. And I am not the one getting the heart!

Julia has become even more of a mother focused person than she has been. She still prefers Daddy to put her to bed, any night , every night. But I am her go to person all the rest of the time. Yesterday, I spent a lot of her therapy time upstairs wrapping presents and Julia didn't like that. She didn't bother me or continually knock on the door, but she was very happy to see me when I came downstairs and was much more responsive to me than she was to her therapists. We played a game together. I've noticed that Julia asks me to play with her more often, and trusts me to tell her what to do -- well, at least sometimes. We spent an hour outside yesterday, shoveling, walking the dog, and then playing in the snow. We made our first snowman -- a table top version. He is very cool but the snow has mostly covered him before I got to take a picture.

The snow is very wet and slushy today, but I will not complain at all. It is warmer today and I hope it keeps up through tomorrow so that Cheshire can fly in from NYC. I am intending an easy travel day for my girl.

23 December 2009

Can I drum?

We are watching Sesame Street and there was a bit about a drumming school. Julia is very interested, like she is when we see something about dance school or kids doing karate together. She would love to do something like. She would love to be in a class with other kids and follow directions. BUT that is so very hard for her. It seems impossible for her to do in school, for gym or music, so I have not at all considered special lessons. Maybe once we get the drug mix right. Maybe, maybe.

I am going to call the med doc today to see if we could change Julia's meds sooner than the next time we see him in February. Now, that we are on this path, I'd like to move as quickly as we can. Sometimes moderation is tough.

No, moderation is ALWAYS tough.

22 December 2009

I did not start the day in a better mood that I left yesterday, but there was lots of snow, there was Julia working on reading, and there was baking to do. And now, I am much mellower.

Whew! It is me, all me, and nothing else. This brain can be such a burden! Anyone else feel that way? I've had lists running around my head for days, weeks now. Getting reading for David's surgery, getting ready for that perfect Christmas, getting a list of activities for Julia to do to occupy her during vacation (educational activities preferred). Oy! And I am failing to put enough checks on those lists. And who wouldn't? Rationally, I have all the answers but that rational portion is drowned out by the crazy, manic, demanding task master. Really, no one is demanding some perfect Christmas.

Julia had an interesting day today. Part of my calming down was getting in tune with Julia which is not easy these days because of the effects of the meds. I can see that the Adderall is having some effect -- Julia does slow down and it is easier for her to listen and do one thing at a time. When the drug wears off 4-6 hours, Julia is back to non-stop talking on at least four different subjects at the same time. While I blew snow this morning, Julia walked the dog up and down the street. She has never done this before and I think it was a bit scary for her, but she did as I asked. Maybe by next summer, Julia can walk the dog sometimes.

We did reading work after mailing most of our holiday cards and shopping for a few baking needs. Although our newest sight words are coming along very slowly, she is preserving through the book. Julia also really like to snuggle while we work on sight words and her books. I admit that sometimes sitting together with a blanket over us causes me to doze a bit. When we are going through a book, I point to words. If I begin to fall asleep, my finger slips and Julia puts it back to where it belongs. LOL. I remind myself of David!

So I end today feeling a bit more whole in heart and spirit.

21 December 2009

Report on Monday

So maybe we all have bad days once on awhile just so we can remember how many good ones are in between those ucky days. Julia, who has a very pleasant and cooperative morning, was a demon on wheels at speech therapy. Julia refused to do anything that Kara wanted her to do. She didn't want to read, didn't want to be read to, didn't want to draw pictures about a story. Julia spent most of her time tantrumming, although she was not out of control for any of the time. When we could not calm her or get her to work, I took her in my arms and held her, hoping to disapate her anger. I held her for a long time and that did not work. Then I had her sit on the floor. She screamed a few times and kicked the door. She also punched the door once and recoiled with the pain of it.

In the car on the way home, Julia apologized many times. I was not angry -- tired and somewhat frustrated with the waste of time -- but Julia felt the need to tell me over and over that she would behave better. She was incredibly solicitous, making sure that I felt good. We went to the post office, and she waited patiently with me in a long line and was polite to the clerk.

When her at home therapist came over, she transformed once again. After playing with a little pile of pine needles that she had saved from what had fallen off the tree, Julia would not do anything that Morgan wanted her to do. We finally decided to make paper chains for the tree. Morgan and I started cutting paper strips and glueing rings of paper together. Julia came around and she and I worked together on one end of the chain and Morgan did the other. Most of the time, when therapists are at our house, Julia much rather talk and interact with the therapists. She has asked me to leave at times. Today, I was the only person Julia wanted to talk to for a long time. And there was much too much of, "Mama" "Mama" "Mama."

After Morgan left, Amy came. Julia started out playing with Amy and the doll house. They played a short game and Julia managed to get a sticker for that. Then there was nothing else that Julia wanted to do but decorate the tree, and so, Julia and Amy put the single decorations on the tree. I will do a little adjustment here and there, but they did a great job.

When they were finished and Amy was about to leave, Julia wanted us to hold hands and sing Christmas songs. She is so excited.

Oh, gosh, what a strange day. At the end of the day, we are watching tv for a few minutes before Julia goes to bed. She is talking like a machine gun at her Daddy.

What will tomorrow bring?

What should concentration look like?

I am trying to notice whether the new drug, Aderall, helps Julia. Now that we realize how wrong we were about the Guanfacine, I do not trust myself to observe anything.

What does an increase of concentration mean to a personality like Julia's? Was her detailed picture drawn during Sunday school more concentration? What about when she whispered tht she was bored to me during that too long for her lesson? And then, assuming that Julia is responding to the medication, what should I be seeing? Certainly, not Julia sitting down to do a page of subtraction. What does concentration look like for a child who has not understood why she is going to school, who does not really want to learn anything more? What am I looking for?

Today, Julia and I have the morning to ourselves. Then at 1, we have OT and speech, and come home to therapy here. This morning, we have the tree to decorate, holiday cards to get out, and the livingroom to clean up enough for the therapists this afternoon.

20 December 2009

I set aside some time today to write. I thought that I might want to do something creative or at least a good, long blog entry. Ach! What that means is that I have be really wanting to sit down and just write whatever I wanted for a good long time. Julia has a therapist this afternoon for 4 hours. Surely I could carve out two of those hours to indulge myself, but Julia lost (in the house) the little blue bird and we spent time searching for it, I had email to catch up with, and clothes to fold an an upstairs to straighten. So, I wonder how much I really was aimed at writing today and how much I wanted to just claim the time or avoid other tasks.

I hold the idea of starting a writing project. I'll see if it stays longer than a moment.

19 December 2009

Julia was watching the tree guy cut off a slice of the tree trunk and get our tree ready to go home with us. I love the concentration. I wonder at times like that what she really sees. Is it the same as we see? Is it something else? She is probably more of herself than sheha been in a month. Talking too fast and too much; having a very hard time listening and staying on any task. She also spent mot of the day with her nose in her shirt -- a habit that had practically disappeared at the beginning of this year. I know that sometimes habits come back and this is clearly sensory, but it is hard take a step backwards.

Picking a tree

We went to a tree farm to get our tree but decided to look at their already cut trees -- Even in snow pants, boots and gloves, we are city kids. We looked at a few and Julia picked her favorite.
Daddy approved and took the tag inside to pay for the tree.
Once inside, Julia found a store full of sparkling and beautiful decortions, snow globes, and music boxes.
She looked and picked carefully and brought home a tiny blue bird to put on the tree.
Which of course, Daddy paid for.

18 December 2009

Last day of school before Christmas vacation. Julia is excited to be out of school for awhile. She loved wearing her red dress again -- it has become her Christmas dress and she thinks it is a Chinese dress -- the red and mums make it look vaguely Asian. I did her hair in two little buns with ribbons and bells and she pronounced herself a pretty little Chinese girl.

I like when she says that. I like when she is proud of herself for who and what she is.

We started Julia on the stimulant today. She has been bouncing off the walls for the last few days, and there was no reason to hold off. It is interesting that I do see some effect of the last medication in her attention to David and I. That has stayed. We'll see if it remains.

I interviewed for a plum of a job this morning -- real legal geek work with the chance of doing some justice. The interviewer pulled my resume out of a stack about 3 inches high. I hope they are not interviewing all of people attached to those resumes. This is the first interview I've done in a long time. I had a great time talking to the two interviewers. I'd like the job.

'nough said.

17 December 2009

16 December 2009

Oh yes, we watch movies! Sometimes I think many too many. Before we got cable (not that it helps all that much to find appropriate programming), our tv reception was awful. As a family, we have always watched movies -- a lot of movies together. New ones, old ones -- when Cheshire was very young, she thought that Shirley Temple was a contemporary! Well, maybe not, but she could have.

Movie time -- which can happen every night if all goes well -- is the best time of the day at our house. Sometimes it is not that long -- not even the length of a movie -- but the three of us cuddle on the couch (Cheshire, you gotta get home!). Julia loves to snuggle into David's side or with my legs curled around her. She likes plenty of blankets to be warm and then she like to talk during the entire movie!

It it a wonderful evening ritual.

Julia's art teacher caught me in the hall yesterday morning. I had talked to him during the first weeks of school about getting together but have never gotten back to him. Yesterday, he told me how talented Julia is. It was all nice to hear and I do appreciate it. One thing that he said, thought, struck a new chord. He told me that Julia was her own magnet school, and that if it was up to him, everything taught to her would be taught in terms of art work. I have been thinking that one year I would homeschool Julia -- not now, because she needs the socialization and professional skills that the school can provide way more than she needs my teaching -- and maybe this is a way to develope a curriculum for her.

15 December 2009

I don't have a behavior report from today so I don't have an objective view of Julia's day. According to Julia, she had a "fine day." I asked her about work and she said she did some reading and math. I asked her about lunch and she told me she didn't spit, throw her juice box, or hit anyone. Julia really doesn't lie. When I asked her about yesterday, she told me all the bad stuff, so . . . .

Tonight, David brought home G Force -- the gunea pig spy movie. Today is DVD release day for the movie and David's been preping Julia. He will make her a movie geek yet. It is silly and funny and Julia is enjoying it.

14 December 2009

Julia did not have a great day at school, and boy, is she ever hyper tonight. But, but . . . she is more herself than she has been for weeks. She has been testy, sweet, bright, flighty, nasty, and loving. Right now, she is even more responsive in her round about way. All in bigger proportions than we've seen in awhile. Giving a drug, not giving a drug -- this is hard! Yes, Julia needs to be able to regulate herself, but how much of her do we lose when we do that.

Big questions about giving up disability, limiting behavior which could limit creativity. And I know, I know, she has to slow down enough to be able to create and live in the world. And learn to read!

I could have both sides of the conversation raging inside my head and still not figure anything out. Yesterday, I was more willing to play with Julia's head to get to some sort of normal, but I had not had any sighting of that spicy dragon who we put to sleep for a little while.

Julia's morning was good. She did her work and seemed to be going along pretty well, until she was supposed to put on her snow pants for recess. Then, she refused with lots of noise and hitting, and ended up in time out with no recess at all. During lunch, she entertained her table with stories of dinosaurs who catch bunny and yank their heads off and eat them whole. When this was unappreciated by a fellow student who asked Julia to stop talking about dinos who ate bunnies, Julia spit juice at the girl and threw the juice box at her. So, not a good lunch.

Luckily, I picked Julia up for OT and speech before she burned down the school.

At OT, Julia was distracted but was able to follow Annie's direction to cut out snowflakes. I am hoping that we can make more at home to tape on the windows. During speech therapy, Julia was able to answer the W questions about a story -- something that she could not do last year. She also played a low stress game with play dough, body parts, and cards. Julia played the game without getting lost playing with the play dough.

And tonight, two therapists built wooden puzzles with Julia.

Julia is talking louder than usual -- like she used to. She was in motion all evening, and did not slow down until she hit the bed. David put her to bed so I have to find out if she mellowed out or if she crashed.

Tomorrow, she will be down to .5 mg of guanfacine.

Monday Wakeup Words

I dropped Julia at school this morning. Today, she is noticeably hyperactive, at least to me. I let her teacher know that we have stepped down the guanfacine and that she might expect more talking and spinning wild stories from Julia. Beth said she much perferred that to a Julia who was closing her eyes as soon as she sat down. Bless that woman!

I have my list -- dream listing as well as waking listing -- and ready to go this morning. First off, a school newsletter holiday letter to draft and a report for my PTO board. Right after that, I have to find a place to fix my snowblower.

Julia has speech therapy and OT today. I am interested to see how she does.

13 December 2009

Hard, hard day. Nothing specific. Just spinnings in my mind. Lists, reminders, an inability to hold on to any thought deeper than the shallow end. We did not do church today, let David sleep late. Julia watched tv, then helped me make pancakes -- sampling the first pancake that came out of the pan. For a very long time, Julia has asked for food but never assumed that she could just take something when she was hungry. This was more than a little kid always asking mom for food also that is only my feeling, and now it is changed. Watching Julia sample a pancake is a particular kind of joy.

The guanfacine has been stepped down to 1 mg a day. Julia seems to be very hyper tonight. Did the guanfacine do that much? Or is it the movie -- princess and the frog -- yesterday, that she id still talking about, and the dinosaur show that we are watching? Tomorrow, we will step down to .5 mg. It will be next weekend before we start with the stimulents.

The "love and imagination" that I wrote about in the raltionale, are Julia's. She showed us her ability to imagine from very early days. And love as well, when she met us, he decided that she wanted us and then hung on.

12 December 2009

Visiting Santa

I could use a lot of words to describe Julia meeting Santa today, but these pictures are so much better. Julia was excited almost beyond herself, but she was patient. Look at her waiting.
And then they met. She almost couldn't believe it. It was very nice that no one rushed her because she needed time to approach Santa.
At first, she could not be still.
I took these pictures but there was also a photogrpher taking pictures. Julia wanted to take a good picture. She worked at being still. My girl has such bright eyes.

11 December 2009

My status on facebook tonight: Julia and I are cuddled on my bed watching Monsters, Inc. and eating oatmeal cookies while Daddy is downstairs at a meeting with the cast of his play. All is well on both floors.

There was a time that I would have been terribly jealous and would have done anything to be a part of what was going on downstairs. I wish that I could hear the reading, but I am so happy just being here with Julia.

Tomorrow morning, breakfast with Santa.
Just like the pain of childbirth, I forget the cold, the cold coldness of the cold during the spring and summer and fall. And wow, it is cold. A big below zero without any wind chill calculated in. I have a house to clean up, food shopping, Christmas shopping, a few calls and maybe if I am efficient, an after noon bath. Anyway, that is the goal.

Julia and I went to see her drug doc, and together we decided to change her meds. The guanfacine is putting her to sleep. I had slowed the racing mind a bit but it is no magic fix. We are stepping her down and off the drug over the next week. Marilyn suggested that we wait a few days to begin the new drug to see what Julia is like free of anything. Sensible suggestion -- one of those things that I think I should have thought of myself, but then Marilyn is the expert. The past two sessions with Marilyn, Julia has sat with me for an hour and a half, curled up beside me, looking at books, interrupting, and playing with me while I talk to Marilyn. The interrupting is not really fun, but her ease is great. Is this the drug or a new change? And do we will figure that out to an extent.

We are going to put Julia on a low dose of a stimulant for the next few weeks. We are keeping the guanfacine in reserve right now. It might be a good thing to use with a stimulant.

The use of drugs and the mixing of drugs has been so hard for me to take, but I am beginning to accept that it will take time for us to find the right mix for Julia. We did get a reaction to the guanfacine and although it was not what we wanted, it gave us some reduction of the motor running in her head. I am not optimistic yet about finding some mix of drugs that will adjust Julia's challenging behavior, but I am moving from the pessimistic pose.

On the plus side, Julia's daily behavior reports since we increased the guanfacine to 1.5 mg a day, have improved. She is getting better socially -- approaching kids in very appropriate ways at school on more than one occasion. Her latest approach was in gym class when she asked a boy from another class to practice volley ball with her. Sheila, on of her aides, said that Julia had an incredibly big smile on her face while she practiced serving the ball to this little boy.

Sheila also told me yesterday that Julia read through a level 4 book missing only a few words. She had read this book before but it was last week. Level 4 is no big deal for a second grader but Julia was at level 1 when the year started, so I am pretty impressed. In our work at home, she is learning words at a faster pace, not as fast as Cheshire did but quicker than she was a few months ago. She is getting more proficient at guessing the word from context and from the pictures. Sometimes giving me the initial letter sound also cues her to remember the whole word.

Tomorrow, Julia and I will go and have breakfast with Santa. This is an event put on by a local agency that treats kids with challenges. I am hoping for fun. Julia has a long list of what she wants. We shall see what she remembers to ask for, or if the whole experience overwhelms her into silence. Yes, that does occasionally happen. Not often.

14 more sleeps before Christmas. Julia's count down. She cannot count backwards herself, but she willingly takes the number from us and repeats it often throughout the day, especially at bedtime. I do believe that next year she will be able to do the countdown herself.

Marilyn were talking about teasing out the intertwined strans of Julia's challenges -- the trauma, the attachment, the autism, what whatever else there is tangled in that mind. The mix, the dependence, the effect of one condition on the others makes an untangling almost impossible, but Marilyn theorised that it could be that Julia decided long ago, on an unconscious level of course, that the best way to live with the deprivation that was all around her, was to escape into a make believe world. That Julia's incredible ability to imagine was her coping mechanism until it took her over and became her world. And now, it is up to us to pull her into our world without destroying the brilliant coping skills she has. Our pulling her into our world is the building of our attachment, the parent-child bond that we constantly work on. If she can completely bond with us, maybe she can let go of the need to live in her own world.

An interesting theory. Doesn't change our treatment, but put a different frame around it. Julia is afflicted with fiction.

09 December 2009

Snow Day

My original idea was to take picture of Julia in the snow, but after getting her dressed and out of the house, she really didn't want to do anything. Then I got a phone call that I had to take and Julia just stood there. By the time I got off the phone, Julia was begging to go in and I let her. Tomorrow.

I brag about Madison all the time and yes, this amount of snow with more on the way is a bit of a pain, but neighbors that come over to help me with the front walk (after they've finished their own walks) is like a rain of grace. If a plow comes through our street, David will be able to get out of the drive way, but for now, we are all home, cosy and curled up on the couch watching silly kid shows.


Snow! Winter, as personified by a beautiful witch riding on a sleigh pulled by a very large white horse, has visited with a vengence. A wet, heavy snow, much more than a foot is on the ground. It is lovely to sit in the house and look out at trees decked out in chilly finery. But to shovel . . . Oy! Unfortunately, as clerk of court, David is expected to be at work today. All non-essential offices in Madison are closed, but presumably the Supreme Court is essential and must be open. An open court does not mean the presense of judges, justices, law clerks, etc., but the presense of the clerk. Oy!

Present problem: My snow blower which I proudly had tuned up yesterday does not start. Bigger problem, at least for David who needs to get to work: although a plow came through to clean our street, it left those big mounds of snow in front of our driveway and at our corner in two places. To get David onto a useable street, we have to dig out the street. Right now, that is not happening.

During this angst, Julia is having a great time watching tv and speculating on what she is going to do in the snow later on today. (O0ooo, I bought her a tube sled yesterday and was going to give it to her for Christmas. I'll have to see what sledding is like today. Maybe it is time to break it out??)

David made breakfast -- bacon and eggs -- and my belly is full. Such a comfort. I could go right back to sleep now. I'm going to to another round of shoveling before I take a morning nap.

08 December 2009

before the snow storm

Actually, this was the day before yesterday. Julia in her winter gear taking a walk with her favorite doll.
Oh Gosh, I was depressed yesterday! The weight of a new heart, the wait for the new heart, and thoughts about how Julia was not responding to the medication that she is on made holiday shopping much too tense. And I was trying to shop quickly when what I needed to do was to slow down and do some easy looking. I am going out again today, before the big snow.

Not feeling overwhelmed with my list but overwhelmed when I think the call can come at any moment and the amount of the list that will still remain. When I rationally think it through, I know that I have done the most important things, and someone else can do what is really needed if the call came today.

17 sleeps until Christmas.

07 December 2009

Kinda disappointing morning shopping. Just not up to the Merry-merry-la-la. So tonight I get back on the computer to order Julia's leapster - Thanks, Robin! I had checked out a few sites, found the official leapster site to be the cheapest, no charge for shipping, and then found a promotional code that saved an addition $13. Cost was not why we deprived Cheshire of computer games, but now I realize how much we saved by insisting that computers games were a waste of time for Cheshire.

I ordered two games -- A kindergarten series and a game about taking care of dogs. I am hoping that the letter part of the kindergarten program will be easy for Julia and it will lure her to do the number parts of the program.

After almost a month on Guanfacine, I don't think that the drug is doing anything for Julia. She bounces between hyperactive, which has not modulated with the drug, and lethargic. The lethargy is almost scary to me. She can just stare off, not at all interested is the person talking to her. She fell asleep again during speech therapy and it was clear that she wanted to stay awake. She is still getting angry which was something that this drug was suppose to address. I see a slight increase in her concentration, but I am not clear that that is due to the drug and not to her other therapy. Even if it is due to the drug, it is not enough to make taking it worth it.

Julia is also talking more about being sad. It doesn't always have a focus or a reason. She is close to tearing up, not really tears yet, but such sadness.

I think it is time for a change.

06 December 2009

Just a few things about yesterday in short form because I should be making breakfast.

Yesterday, we had twice the usual amount of therapy that Julia gets on Saturdays -- 6.5 hours. I got a lot done in the house and could listen to what was going on. She played two games (for two stickers towards a Leapster), very willingly cleaned up most of the time, and spent a long time playing with dolls. Weekend therapy time is different from the weekdays. Julia is fresher which makes sense.

Dolls! Yesterday and totally out of the blue, Julia asked about "her" dolls. She does have dolls that I put away more than a year ago because she had not touched them in months. She and her therapists played dressing and undressing dolls for a long time. She even took one of the dolls out for a walk when she and I walked the dog.

Julia is obsessed with the number of days until Christmas. LOL! And so, we are slowly counting down to the big day. Never a bad think to be using numbers!

I cleared some toys Julia has not been using much from the toy shelves. Interesting to me, I put her big box of dinosaurs downstairs! Although Julia is still interested in dinosaurs, she draws them, makes them from clay, has a few work books with dinosaurs, but she seems to prefer little people and animals. The dinosaurs were her earliest inactive characters. Those dinosaurs mostly fought and ate each other. They chased each other away from nests and did not do much sharing or positive interaction. Yes, Julia worked on lots of anger feelings with those dinos. I'll see if she misses them now that they are downstairs.

Trying to come up with some perfect Christmas gift for Julia. Since her birthday is January 16, I usually buy gifts for both at the same time and split them. So far, I will get a Leapster 2 (hand held computer) and a tube sled. There is plenty out there that she wants but I want the rest of her gifts to be useful for therapy -- games for sure, games that will offer more than spinning and advancing on a board. I am looking for suggestions here if anyone has them.

And, and, and, Julia has been asking every day to get our tree, but we get live Christmas trees and usually put them up a few days before Christmas so that they look good for about a week or so after Christmas. I could get into putting the tree up early, but not this early -- we would have dry sticks by Christmas. Also, Cheshire is not coming home until Christmas day. I'd like the tree up during her stay. And so, I've been racking my brain to figure out how to please Julia's tree needs -- decorating, of course. Cleaning yesterday, I cleared the top of the toy shelves that usually holds bigger toys like Julia's doll house. I cleaned up the doll house so that she can put up new Christmas decorations there, and cleared the whole top of the shelves and put up a bunch of tiny Christmas trees that I used in our old house (but have no room for here). I'll look for some snow looking material to put under the house and trees, and we will dig up, buy and make all sorts of little stuff for those trees. Hopefully, that will keep her busy and happy until the big tree goes up.

05 December 2009

Pipecleaner Animals

Maybe momma should learn how to use her wonderful camers! Oh, I stink at photography. These pictures do not capture the cuteness of these little guys but they are the best that I can do. What you can't really see are the different colored ears, the white tuffs on the chests, and the spape of the heads. Maybe a photography class is something to ask Santa for.

04 December 2009

Yahoo! I have finally finshed doing all the first round of work to prepare for David's new heart. I have lists, assignments, big explanation email, and smaller work email out! I have keys to give our over the next few days, but this is the end of the first phase. I still have to pack little bags for Julia and me, in case we need it, and write up Julia directions for anyone who needs them. Then, I start working on Christmas.
Were you teasing me, Adelaide, when you wrote how going into school before the bell was such a wonderful idea? I am sure much smaller minds than mine had thought of this way before I did. LOL.

It is a measure of my narrowness that I tried playing a game of spider solitaire when I sat down at the computer and could not sustain attention. But I am a woman with a mission - a mission that I should be mostly done with planning by the end of today. Then, let the new heart come!!

I am putting all these lists and alerts into readiness, but it is sobering to know that they might not be used until next year. My preoccupation with preparedness is paying off. I should be mostly set up for anything and everything by tonight!

I haven't gotten pictures of the pipeclean animals. Must do. Must do. And holding on to that art teacher -- duh, yeah! He was trained as a special ed teacher and ALL of the kids love him. I have been planning to talk to him since the beginning of the school year. And I will get to it. This last sentence should be viewed as an affermation.

It snowed about .25 inch last night but Julia was so excited that you'd think it was a blizzard. And she doesn't care about cancelling school -- she wants to go out and play in the snow. This is a first for her. For the last three winters, going outside is the last thing she wanted to do. But she wants to go outside and build snow men, play in the back yard, and go down a hill. She also wants to go skating again (we did it once last year) and tells me that she will hold me up. Yes, I took a fall last year which is neither surprising or out of character for me, but she is very concerned about my well being these days.

03 December 2009

I am hitting a stride. I can feel it. I come to this blog in the morning and I want to start writing. I have not felt this way in a long time. I finish writing and I sit in meditation for a little while (sometimes only 5 minutes) but there is routine here. Sometimes I do not finish and entry and just save it, sometimes it never gets published but I am doing it. This is finding the inner life that I have great need for right now. The inner life is power and strength and keeps me going forward. I wonder how much I draw from the multitude of prayers, good thoughts and feelings, vibes, etc. that have been sent my way. I am so thankful.

My attention is so narrow. I cannot even listen to news -- I don't care about Tiger or Insurance Law or a troop build up or the opposition. Nothing. I see only a few things -- David and Julia most of all, Cheshire, preparing for David's surgury and recovery, PTO, play group, Christmas. Everything else falls away.

This morning Julia did well getting ready to go to school. When we got there she did not want to wear her ear plugs. I suggested that we go into the school before the bell and get her ready for class. She agreed and we went into a very quiet school (she commented how nice it was). She put her things away, went into her classroom, got her daily journal out, found a pencil and started working.

And yesterday, Julia made the most adorable little animals out of stripped pipe cleaners that her art teacher found. I have to see if I can take a decent picture. People stopped her in the hall after school to look at them. If she could make 100 I could sell them on Etsy.com.

02 December 2009

One of my sisters commented that I sound like our mother when I write about the need to clean -- well, she might have something there. Could it be that my mother's obsession with cleaning -- Martha could have visited on any day. She might not have agreed with the style, but it was consistent and clean! -- was her cover for other feelings. My parents weren't the expressive types, but the house was clean and there was always food to eat. That was never enough for me, and I've never looked beneath the behavior to find more.

For me, I know that this wild mood of making lists, bringing as much order as I can to our lives, and cleaning is what I must do to get ready for David's surgery. My thoughts right now are about doing what I think I must if the surgery was today -- getting phone lists and email lists to my circle, solidifying a contact for Cheshire, and getting a bag packed for Julia in case she needs to stay with someone. I have a longer list to accomplish but I am looking day by day. Somewhere on the list -- and I admit, towards the end -- is this cleaning that I feel compelled to do. Genetics? I think of it as a way to make it easy for people who don't live here to be here -- in the house -- and to make David's re-entry as comfortable as possible.

Crazy worry? Yes, indeed. But I have a list, and for me, that list of tasks is comfort. Learning is never linear. Spirals and roller coasters maybe.

Julia had a bit of an easier time getting into the school building today. Was it just the noise yesterday? Very well could be. And I wonder if it has to do with the drugs. The Guanfacine is supposed to slow her down some so that she can take in more of what is around her in an appropriate way. Julia is so very sensitive to sound, in particular the sound of metal against metal. She hates it!!! I know that it bothers her terribly to walk into school due to the sound of the metal lockers banging against each other and the general loud din of children. And I am talking about hate as in standing in one place with her fingers in her ears, eyes closed, and yelling about the noise. Not very effective, huh? However, she has refused to consider doing anything about it. I think that a great well of fear roars up and stillness is the best that Julia can do. Terror takes over and she is unable to bend her mind or body around any solution. She is a live nerve when she gets this afraid.

So, here is where the drug may be helping.

We got to school late this morning -- the bell has rung and the kids were lining up to go into school. I decided to bring Julia right into her classroom -- maybe avoiding a bit of the noise -- and headed for the far door of the building. She seemed to realize what was coming in a very visceral way and dug in her heels. Right away, I offered her the soft ear plugs that I carry -- been carrying them for months now hoping she would use them when she needed them. She refused and I offered them again. She accepted. (I'd like to see some fireworks going off right now.) I put them in and we went into the school, up the stairs, and into her room. One of the aides in her room noticed right away that Julia was walking in so comfortably. Julia put her stuff away, without help, got out her journal and started working. She kept the her hat on and the ear plugs in.

Was it the drugs? I want Julia to get to a place, with or without drugs, that she can understand that there are tools for her to use, strategies and help to overcome challenges like her sound sensitivity. I want her to learn that she is safe and that together we can figure out how to make her life pretty good.

These steps, that would mean nothing to the parent of a NT child like I was with Cheshire, mean the world to me. Each time Julia takes a step towards the world whether it be towards me, her teachers, or her therapists, I am excited for her and in awe of her bravery.

Now back to my lists.

01 December 2009

A tough day

Julia had another tough day today. She seems tired and lost in herself. A bit zombie like. She is also irritable, lashing out with mean words and hitting, punching or stomping on feet. I called the doc and he said to hold tight until we see him next week. I'll keep taking notes on her behavior and report to him.

But even with this tough day, Julia is still herself. She is talking constantly about Christmas -- a nice break from dinosaurs and bugs. She is excited and remembers buying the tree last year. She wants to put up light outside and points out other houses with lights. She is talking about gifts as well, claiming every toy that she is attracted, but she also talks about gifts for David and I and Cheshire as well. Yesterday, she brought home a bracelet for me made out of two pipecleaners braided together. Today, she brought home a picture of our house at Christmas. There is a big tree, decorated with lights and bulbs and a big yellow star on top. There are 7 presents around the tree and a bear that Julia said was for me. Next to the tree is a fire place with a burning fire and candles on top of the mantle.

I am feeling both fragile and strong. Waiting. Is not easy. I need to connect the people who have offered help to us while David is in the hospital. I need to pack a bag for Julia, in case she needs it, and write out her schedule, and what she takes to school for lunch and what she likes for dinner. There is a phone tree to work on and an email list. And I have the rediculous idea that the house needs to be kept clean so the life in and out of the hospital will be easier.


Roaring Dinosaurs

Julia was in a fine mood this morning. She woke up, watched tv, got dressed, had breakfast, including some of mine, and cleaned up to be ready for school She hopped out of the car and put on the backpack and walked into the playground. There, all changed. She did not want to go to school, did not like me, and was happy to punch a teach, stomp on my toes, and push a student who bumped into her. All of the behaviors were within the range of bad mood and not terribly hurtful -- she does have some control -- but all were inappropriate.

These last two days, there has been more inappropriate behavior, including loud voices an hitting. The therapy team has decided to keep track of it and see if there is a pattern.

I am beginning to grasp what a ride this will be. This morning, we have a bit of resentment hanging out. The docs presented us with something that they had never mentioned. Last night, we did some internet surfing and there is very, very little out there about "high risk" hearts/organs. I feel like talking to someone on our team to let them know what it means that David and I are lawyers! Medical people may hear the words "slight risk" and focus on the "Slight". Legal minds definitely focus on the "risk"! And we can figure most things out with sufficient research, but decisions without good precedent are usually bad decisions.

I just could've used the heads up by the team that there were some curved balls coming.

Ok, on with the day!

The wild ride

David received an offer today of a heart from a high risk donor. We were completely blind-sided by this -- no one from the transplant team had mentioned the possibility that the heart might come with a warning. A "high-risk donor heart" is one from a donor that the CDC would classify as engaging in behaviors (like IV drug use, prostitution, risky sex, was incarcerated, etc.) that create a high risk of being infected with HIV, Hepatitis B, or Hepatitis C. The donor had been tested and did not seem to be carrying these diseases, but there was no way to be absolutely sure. David was told that he could say no to the heart and not lose his place on the list, but that his doctors were recommending that he go ahead and accept the heart. There was no information available as to the historical data on outcomes with high-risk donor hearts, nor about how infections were handled in the post-transplant phase if an infection were found.

David was given ten minutes to give his consent to receive this heart or to say no and wait for another heart. We spoke on the phone while I was driving from Julia's OT sesion. My gut reaction was to say no, but it was an agonizing decision. The doctors were recommending it, but so little about it made sense. It was a high risk organ from a high risk donor, but they were telling us that the risks were really very low. Which was it? And what if that organ had been infected? How would the anti-rejection drugs have affected the infection?

We said no to the heart. Yet I feel that we might have said yes if we'd received more complete information about this possibility ahead of time. Afterwards, I spoke to my sister and left messages on a few appropriate message boards. No one disagreed with our decision, but those who had been through the experience suggested that the making a quick decision without adequate information is part of the process.

During the Ukrainian mass, there is a prayer that begins, “Wisdom, wisdom!” Request? Demand? Prayer? Desperate hope? All of the above?