Wednesday

I had a strange dream last night that is haunting me today and I am very anxious today. I wish it would mean something, like a heart was there for David.

I have worked out for two days! Yes, if Cheshire was not here, I probably would not have done it two days in a row but maybe we can make it 3 and then maybe next week, I can make it 3 again. Even after 2 days I feel good, sore but good.

Julia ate breakfast and a little bit of lunch.

She is still making valentines which are pieces of paper with a decorated heart in the middle and surrounded completely and filling the entire rest of the half page with letters which are supposed to be words. I can find Mom and Dad and Julia sometimes in all those letters. She is "writing." Maybe we will get to some easy spelling soon.

I work with Julia as much as I can -- that is, when there is time on the weekdays and on the weekends usually without fail. We read, play with words, do sight words, and do pages out of a kindergarten workbook. Julia sometimes resists at first but falls into the work and does it willingly. I assume that she is working slower than her age peers. I think she is. I need to go over things more often and find more than one ways to teach her anything. She move slowly forward and she doesn't forget. Once some knowledge is in her head, it is there to stay. I even see this with sight words.

And when she loves something, like those wicki sticks, she wants to play and create for all of her time. It was nice to see today that with both me and Amy, Julia was able to transition from her creations to something that the grownup picked out. Transitioning is still hard at school many times but she gets better and better with it at home.

Ginny, one of her teachers, told me today that Julia doesn't want to do her work in the sensory room. She has done most of her serious work there since the beginning of the year. For a long time, it was the only place that was quiet enough for her to concentrate and focus. Now, Julia wants to stay at her table with Peyton and Kurt and do her work. She still gets loud at times or refuses to do the work and Ginny says that she only has to remind Julia that if she disturbs the other kids, she will have to leave the room. Julia complies. This is new.

Cheshire is home for the week! Yipee! So nice to have my girl to talk to and hang out with. This is/was Cheshire's birthday present to me. What could be better! Better was today when she got me to the Y -- If she can get me there at least one more time this week, I will meet my paulty twice a week goal that I've been failing at.


Oh, the trials of being fat. Why can't I just give Julia a few of my pounds?

I wish I could get someone to perscribe Aderrall for me! I could probably lose any and all appetite pretty quickly -- at least to judge by Julia. We cannot tempt her with favorite food, enriched food, or CHOCOLATE! Getting her to finish a small bowl of ice cream is a chore. This side effect of the Aderrall has diminished once she gets use to the meds before. I hope it does the same this time and soon. I have heard that we could take Julia off the drug on the weekend and see if her appetite improved, but I don't want to play with her head so much. What does it feel like to be able to concentrate one day but not the next? I don't mean to insinuate that Julia knows the kind of effect the meds have on her, but to switch the pills out when she is not at school seems unfair to her. This is something that I know nothing about and should research.

Later: Julia had a decent food day today! She was hungry for breakfast and ate cereal with milk and a peanutbutter and jelly sandwich. She did not eat much of her lunch, but had a good dinner. We are getting some Ensure into her each day which also helps.

Julia is talking about being born in China. She says she was a baby in China and she waited there until her parents -- that's us -- came and found her. She asks me whether she was in my tummy before she was born and I can tell she knows the answer. I tell her that she was not, and she asks about Cheshire. I tell her that Cheshire was in my tummy and that another mommy in China carried her. She considers this and does not comment. Then, I tell her that I wish that I had known her when she was a baby, and how, if I had, I would have scooped her up and taken her home to hold her and feed her and keep her warm and happy. We've gone through this conversation twice now and by the end she is just listening but does not comment.

I found some Wicki sticks to buy for Julia -- they are also called bendables. They are waxed plastic sticks that are bendable and stick to each other. They come with directions to make two dimentional objects and 3 dimentional things. Julia did the two dimentional stuff yesterday with Ellen and today she and Stephanie madea whale and a mermaid, both three dimentional. Julia did a good job at working cooperatively with her therapists and she followed directions.

Gong Hay Fat Choi

The last two years for Chinese New Year we went to a big party that our local FCC holds. Julia has had a good time at those parties but they were also loud and crowded and Julia was not able to regulate herself during those parties. I decided to take a step back this year. We read two kid books about Chinese New Year, we talked about there is an animal for each year, that she was born during the last year of the dragon and how this new year is the year of the tiger. A few days ago, we started making lanterns to celebrate the new year. Julia made a few with me, and the rest with her therapists. I hung the first ones yesterday and the last three today. Most of them are decorated with animal sticker and glitter, but today, Ellen suggested that she draw the Chinese calendar animals to put on her lanterns.

More and more Julia is working with many colors at the same time. She uses those colors with imagination but they make more and more sense. It is as if she is finding her color feet.

Valentines Day

Daddy gave Julia an Ariel heart filled with candy. When she opened it the first thing she did was to offer to share her chocolates.
Julia and a new little dinosaur ready for Valentines Day.

Friday

Julia enjoyed the hub-bub of valentines day at school today. She gave out her valentines and the pencils that we bought at the dollar store. Love that dollar store! She drew a complex of hearts with people's names on them with a big heart in the middle of the page and a small squirrel (with a magnificent face) close to the big heart. She is spelling out mom and dad and Julia without trouble. There are other names -- Beth, Olivia, Peyton, Kurt -- in small hearts. I don't know whether someone helped her with the spelling. She is also still writing a series of letters without regard for sounds and saying that they are words. She seems to remember what she wrote even when the spelling is nonsense.

Today was the third day in a row that Julia did not touch her lunch. Really, nothing is eaten or opened. A note came home today saying that for the past three days, Julia has been very sad at lunch time. Today, she put her head in her hands and shed a few tears. When I ask her why or what she would rather have for lunch, she has not answer. She told me that she likes what we pack, but that she is not hungry. And there is no explanation for the sadness.

One of our line therapists told me tonight that she feels like Julia's personality is coming out. Ellen said that Julia is not as reactive and is showing her sense of humor. I am seeing another bump down in comfort level. A bit more of the vigilance chipped away.

Oh, I have been disconnected from the internet most of the day and last night I could not post pictures on blogger. I don't know what to attribute these glitches to but everything seems back to normal right now.

Julia is back at school today after a bit of a challenge this morning. Would she really want to
do our home work together so much if I kept her home to home school? But she was cute telling me that she wanted to work with me and not with her teachers. When she started telling me that she did not want to see the kids and did not want to do the teacher's work, I took her in my arms and held her. We did not go through her refusing to be held or any negative response at all. She settled right down and was ready to be calmed and give into going to school.

When I picked Julia up from school today, she told me, "I stopped screaming and I am calm now. I did not hit anybody today." This was the most comprehensive recital of her day that Julia has ever done by herself. I talked to Marilyn today about working on reciprocal conversation and how I don't really know how to get Julia to start doing it. Julia answers question or offers her own thoughts but does not ask questions of me or any person that she is with unless she has some direct need. Marilyn talked about where conversation comes from, how even very young babies engage adults in conversation with smiles and coos, and proposed that I play a mimicking game with Julia with her in my lap or arms, and trying to hold her eyes while we play at copying each other's sounds.

It pains me that Julia did not get the attention, the interaction that she needed when she was an infant, but she learns when she is taught and I hope so very much that I can teach her.

This morning I called it quits for our social skills group/play group for kids on the spectrum for this year. I could not get it going in the fall but have a small grant for this semester, but I just don't have the manpower, don't have a collaborator, and just don't have the energy.

I hated doing this -- so much -- but the plate is just too full and I am doing everything else half-assed to try to keep all the balls in the air. Frankly, I would have not taken on the PTO this year if I had known about the heart transplant, but having taken it on, I see the work I am doing as so important to our community.

On the up side, right after I wrote the email letting those who have expressed interest in our group know that I could not get the group going this sprig, I felt immediately energized to do some PTO work which needs to get done.

We are at the 3 months point for the transplant list, a point that the docs assured David he would never see. He has a great blood type and is a smaller man, so they thought he would be matched quickly -- of course, that what those who sent in their dossiers to China in April of 2006 thought as well. We are through our first period of acute stress which exhausted us both -- there must be phases of stress and we are on that part of the path.

Painting

Julia is home this morning because of an ear ache. We go to the doc and he says ear infection. We are done at 10:30 but I decide to keep her at home with me. To spend a day quietly and together. I would have never done that with Cheshire -- an old mother may be a good person to have.

So, Julia is home for the day and after we napped or layed down quietly, and I blew snow and walked the dog, we have lunch and do reading work. Julia was patient and did as I asked. I don't know whether she so much reads or does what I ask. I don't know whether she would try to read another thing if I did not bring out the words and book and workbook. But I do and she does. I know that she likes books, she likes to be read to and she understands what she reads and hears. Her teachers, her speech therapists and I agree on this one, but -- how do you say -- she has not caught the bug to read.

Then we bring out the paints. Julia has not painted much. we have paints and brushes but we don't paint. We don't draw either but I've done a fair amount of drawing for our schedule and maybe that counts, but I see that her line therapists have no luck suggesting painting. So, I clear the table after lunch and reading and I suggest nothing. I bring out the box of poster paints that we have and ask her to chose 5 objects. She picks 5 ponies (My Little . . . ) and lines them up on the table. She first puts 7 ponies in a line. I ask her to count them and she realizes that it is not 5 she put down (!), and takes three away. Then I ask her to count again and she discovers she has 4. When I ask her what she needs to make 5 ponies, she puts one down. (Does she understand or was that just lucky?) I ask her to chose 5 paints and she does -- two pinks, a citron green, a blue, and violet. We put a brush in each paint, roll up our sleeves and paint. I make crude representations of the ponies, Julia works on a picture of one pony. All in pink but with a lot of color. She captures something, quite crude, but she is really enjoying herself. After what seems like a long time -- I am more than done, she is playing with shape and color -- she announces she is done. Her hands are full of pink paint and she washes very well and then she is ready to begin again.

I leave the ponies out on a piece of green paper but put the hyacinth that we bought two days ago in the middle and ask her to draw the plant. She tells me she will put a flower in her picture but first she has to paint the table. She starts with blue and something like a table appears. Then there is some violet that looks like leaves and some yellow that might be flowers. Then she forgets about the plant on the table.

20 minutes later she is still layering paint. She does not look like a kid -- these days I am seeing Julia as about 6. Most of the time, she acts like she is in kindergarten. I felt her 4 for a very long time. I am not sure that we passed through 5 or just jumped to 6 -- but this is not a kid of 6. She sits, back ram-rod straight, holding the paint brush like a pencil but without uneasy tension. She dips the brush into the paint as if she is in full control of what she is doing, as if she understands something about the paint. What does she know, what does she feel. She is incredibly regulated. Peaceful, her shoulders are down, her non-painting hand holds the paper lightly or falls to her side. She stands as she lets go of the flower and starts applying color in ever widening circles on the page. I have seen some of these kinds of pictures come home from school art class and I wondered about them.

Now I understand.

What I see is what I saw before she began drawing. She made circles, she completely covered pages with her pencil shapes and she worked at understanding the pencil and the marks it made for months before she started drawing. I don't know if she did the same thing with clay -- shapes and then animals came and went so quickly with clay the I have no progression except that one day there were dinosaurs out of clay. Someone suggested that the circles on the page instead of any attempt at image might be a sign of autism, but it was only Julia practicing and getting to know a pencil before shapes emerged.

But now the page -- pink to begin with -- is covered with green, blue, pink, and that darker pink. She uses the violet. Is is just a huge circle, is it the sun. What will this child do with oils. We have to do a lot of painting this summer.

Julia doesn't mind me taking pictures but she doesn't look up. She doesn't mind me typing as she works. I do not have her interest and to be painting all this time is far beyond me.

feeding my girl

I can laugh at myself today! I went food shopping to replenish our much dwindled supplies and to buy some things that I could tempt Julia to eat and add a bit of meat onto her gettin'-skinnier-all-the-time frame. She has lost three, almost four, pounds since the beginning of December. I am sure it is due to the drugs because when she is clear of the Aderrall, she reverts back to eating like a truck driver.

Julia has never been more than lean, and she has always been solid. She weighs more than you think when you look at her. And she grows. The kid is getting taller all the time. She has been eating three squares plus snacks since we met. And she eats good food. She has never been into junk food. She likes some cookies, ice cream, and cheese doodles, but she likes to drink water, doesn't eat much bread, doesn't like cheese (except on pizza), loves fruit and vegies and eats a moderate amount of meat. Rice and noodles are her mainstays.

Since the Aderrall, however, her appetite has gotten smaller and smaller, and now, I am supposed to supplement/enrich her diet so that she get more calories. And here is a task that I am completely unprepared for. I know how to eat healthy, I know how to diet and how to fast, but never have I helped someone gain weight.

It is against my ethnic heritage.

And so, I wound up in my local supermarket with no idea of what to buy to fatten up my little girl. I bought some regular cream cheese, some applesauce that was sweetened, juice that doesn't have water in it. I bought some Ensure. I had no idea what I was doing.

Luckily, we had OT today and Annie told me to add ground nuts to muffins, and protein powder to vegetables, and peanut butter to almost anything. She copied pages from a baby food book that I need to read. I don't doubt that I will figure it out but for a long time I have considered myself pretty competent in feeding those whom I feed.

There is always something new to learn.

Today, we changed meds, giving Julia 10 mg of Aderall Rx (time release) and .5 mg of guanfacine in the morning and before bed. Julia was noticeably concentrated and quiet. She had a very good playdate in the morning and then a very quiet afternoon. Julia took a bath while David napped and I kept Julia company by cleaning the bathroom closet and chatting. We played with little pets and had supper watching a dog show on tv. Maybe we all needed this kind of lazy, quiet day.

Julia in Sepia

Valentines and . . . .

Ummmm, I was going to post a few more pictures of our crafts project today, but for some reason I cannot add them. Maybe later.

So, here are the results of our efforts today. I did some of the prep work because Julia has not been enthusiastic about this project. Well, I am having fun. She did like decorating the already made (folded and cut) cards. She especially liked playing with the glitter pens. The girl is all bling!

This is what Julia preferred doing. Putting the "jewels" on her squirrels - I don't think any jewels made it on a card -- and making books for the squirrel family. If you look carefully you can see the Chinese New Year scrolls on the wall of the doll house.

Here is Emalie Squirrel, aka Julia Squirrel, Lily Squirrel, and Peyton Squirrel, with a package. She was just too darn cute to pass up a photo opportunity.

ear plugs, meds, and all smiles on the behavior chart

Yesterday, we were a bit late for school. The bell had rung when we got to school and kids were lining up and filing inside. This means that we could not avoid the noise of locker and kids as we walked into the building. I told Julia this in the car and she immediately became fearful of the noise. She was not even in the school building yet, but her fear was switched on. For a new minutes she was unable to hear me offering some suggestions, she was in high fear. I have seen her do this many times before and as bad as I feel for her, it is utterly frustrating. I have, when she was smaller, picked her up and carried her to a "safer" place. But is is almost impossible to move her from the spot of fear both physically and mentally. This is a fear beyond on flight or fight, it is standing still and waiting for the worst of the evil force to desend.

I had my trusty ear plugs in my handbag and so I offered for Julia to wear them walking into the building. At first she was not able to listen. I said it over and over, I got right in her face and told her that I was going to help her with this thing she was so afraid of. I was amazed when she listened and had me put in the ear plugs. She actually trusted me that much to listen through her fear.

With the ear plugs, Julia was able to go into the building. It was still loud but it must have been much softer than usual. She did not stop and actually managed to rush up the stairs to her classroom, something that she just doesn't do when she is afraid. She took off her outer clothing and then took out the ear plugs and was able to peaceable begin her day.

Yahoo!!!!!!

We went to our medication doc yesterday. I was armed to insist on change and a follow up appointment sooner than 2 months from yesterday. I got both, helped by a supervising doc who was overseeing my resident doc. Julia will see the doc in 3 weeks. She will be on 10mg of extended release Adderall given once a day, and .5 mg of guanfacine given twice a day.

We will do the transition this weekend to see how she does.

Julia did go to school yesterday with no medication at all because the doc wanted to see her medicated and we didn't see him until 3:30. I gave her the medication while we were at Marilyn's and really watched her come down from a pretty high state to very comfortably arranged in a chair. I have not noticed this change quite so dramatically, but I think that Julia is naturally in a more active mind mood later in the day, so the change in the morning is subtle. I had warned her teachers that she would be at school without meds, but of course, Julia had a stellar day yesterday. She has had a pretty good week with 3 great days, so she was in a good grove, but just why can she sometimes keep it together and sometimes not.

I have not decided to start celebrating Chinese New Year a moment too soon! Tonight, Julia was decorating her doll house with her therapist. She made books, little valentines to hang on the walls, and then made scrolls for Chinese New Year. I did read her a book about what goes on during Chinese New Year a few nights ago, but who thought she was listening?

In bed last night, while I was reading to Julia, she told me that she was tired. This may have been the first time she admitted to such a state.

My girl is such a discovery every day. Today, we did not have therapy, and so, we went shopping for more stuff with which to make valentines. She enjoyed doing errands with me today -- decided to get bunny ears at the dollar store, talked to the guy at the dry cleaner, loved picking out a new chapstick at the drug store, and said Ni Hao at the Chinese Restaurant where we picked up some dumplings to go with my beef and broccoli. Tonight, she took a bath and rattled on about growing up -- she has gone from never ever growing up to wondering about being a teenager, about being a bride, and a grandmother. She is not interested in being a mother right not but a grandma would be good. She doesn't want white hair and will make her hair turn black if her hair turns white. She doesn't want to die soon and wants her Dad and I around for a long time. Maybe so that we can be grandmas together. She is thinking that she wants to become a teacher so that she can yell at kids. And she loves her long hair.

And none of this was Julia Squirrel, Julia bat, or Julia dinosaur. It was all just her as the human being that she is.

Ummmm.

I decided that this year Julia and I were going to make our valentines. This is something I always wanted to do with Cheshire and never found the time. Tonight, I was making and Julia was writing the names of her classmates and signing, Love, Julia. If we do a few every few days, we should have enough by Valentine's Day.

labs

Once again, started last night but zoned out and watched tv and could not finish.

So, it wasn't bad!

The blood draw, that is.

I told Julia at breakfast that we were going to go to the blood doctor when I picked her up. The doc is really a gastroenterologist but blood doctor says it all. Julia gets a big blood draw when she sees this kind of doc and she needed one today. Julia protested to me before she went to school, and from what Sheila said Julia mentioned it often during school, adding what she wanted to do to the doc who did the draw -- and those things were not pretty. She did her work; however, and worked herself into a funk, not a fury, by the time I had picked her up. Sheila (her aide) said that she was just staring off after lunch which is not at all normal Julia behavior.

Julia was scared.

We talked about it in the car going to the doc. Actually, Julia did most of the talking. My motor mouth of a kiddo was scared, was brave, was going to defend herself from those nasty needle wielding docs. I kept telling her how I would protect her, how it would not hurt too much, how it would be over very soon, etc. Julia was concern that the doc would "rip her skin" and wondered how long it would take to heal, if ever! I told her about the tiny hole they would make and how quickly it would heal.

Although Julia was pretty upset and very scared, I felt for the first time in this type of situation that she was hearing me. Even when she repeated her fears, she was less sure of herself. She was trusting me and letting herself believe what I was saying. This is incredible for us!

I have to admit here and now to not being the best of mothers. Julia's blood and liver should be checked every year to make sure her Hep B infection is under control. The last time that I went through this check up was when we first moved her. It was a truly awful day. It think it took three extra people to hold Julia down while they did the blood draw and we had reactions for the next few days. So when the doc looked at my yesterday and asked why it had taken me so long to get back there, I felt guilty but I also could explain. My girl is recovering from the trauma of her first five years and I am not going to add to that huge pile of muck that we slog through. Julia has not been sick and has not shown any signs that her liver was not functioning. That being said, I do hope that the labs come back with news that she is stable.

Julia did not march into the doc's office or the lab like a stoic soldier, but she was willing to march in all the same. She clung to me when she was scared, and was very and clearly articulate about her feelings. At one point she backed into me, very deliberately, and was visible calmed by my hug.

Really, I was very proud of how far she has come.

And the rest of the day was a bit raw but pretty good. She went to OT and speech therapies and came home to play with one of her therapists. She was not as compliant as she can be but she was not aggressive. During speech, she interrupted what she was doing and turned to me to ask whether she was going to die. She asked if I was going to die and "What about Daddy?" I answered the best the I could. For all the times that Julia's gaze is all over the place when she talked to someone, she kept a steady gaze on me and I held her eyes during those answers.

It was a good day. (behavior chart was good from school too!)

Ah, and just one more thing. I've decided that we will celebrate Chinese New Year this year. I've bought two books that I am reading to Julia -- very elementary but fun. We will make some crafts -- lanterns, a lion puppet, etc. -- and hopefully I will cook. I am not sure what yet. I don't want to make a big deal of it, but Julia is interested in China -- not her China, she says. She is interested in the Great Wall of China, in the long noodles of China, and in the beautiful clothes. This is a good start and we will follow her lead!

Julia started the day in a hard place. She was reluctant to get dressed. I tapped with her and she didn't want to do it. Her first reaction was to squeeze my arm very hard -- not a good place tostart. She ate sugar cerael this morning which I really don't like but getting her to eat right now is tough and she did eat a bowl of cereal. I told her that we were going to go to the blood doctor today right after school and that they were going to do a blood draw. She was not happy and obsessed about that until she got to school. I have no idea where this morning will go.