Joan of Arc

Tricia's class held a wax museum. Each student researched a person from history and wrote a paper about them. They also dressed up like the person and wrote a speech. The museum patrons walked among the statues and at certain intervals could push a button in front of the statue and it would give its speech.

Tricia picked Joan of Arc. (Thanks to Uncle Scott and All a dollar for costume help). Tricia put alot of time and thought into her presentation. She painted a brick castle wall as a backdrop and decorated her desk with a tablecloth and props. Her teacher commented to me that she had allowed the children to pretty much pick anyone. What had surprised her was the similarities she could see in her students and the person they chose. She felt like Tricia had some of the same characteristics as Joan--strength and courage.

It wouldn't have been in Joan's character to smile though. (For the record, I did try). War with France was serious business and people in the olden days didn't smile in pictures. Besides how expressive can wax be?

Tricia-Elementary School

Tricia started 6th grade this week. She has a sweet teacher, Mrs Geiber who Krysta also had in 6th grade. For the last few years she has shared an aide with another girl who is a year older. The other girl loved having the aide handy and independent little Tricia didn't, I mean really didn't. This year with budget cuts and Savannah off to jr high, the school thought they'd try Tricia aide-less. It makes me worry a bit more but Tricia is happy about it.
She has started caring about how she looks and likes to decide on her hair-style and clothes for the day and finds accessories and hair do-dads to match. Her biggest disapointment was that her closest friend Diana is not in her class this year. Well maybe the biggest disappointment is that her grade isn't in the new addition of the school because it is so "clean and new and has cool lockers, just like high school".

Days of '47 Float Party

Free uncrowded parking--
drinking fountains and handy restrooms.
Floats, floats and floats.
Creators on hand proudly showing beginning to end.
The sketches, the scale, the raw chicken wire, dense foam and glitter--pounds and pounds of glitter
and the final works of art up close and every angle.
A marching band, clowns, balloon creations, face painting, and cinnamon toffee nut smells.
All in the air-conditioned expo center
Next year you're all invited.
It's the best parade of the season!

What girls need

A few months ago I asked the question, "What do girls need?" I got many great answers at the time.

On Sunday Krysta came home from church so excited for girls camp. "Candice is going to make sure we can go canoeing this year and we're going to certify or something like that and look at constellations and help cook..." She loved that plans were being made and there were fun things to look forward to. (And I love that someone found a camp certification manual this year.)

Tricia often asks me at bedtime what we are doing the next day. It's happening so often that I am consciously trying to think up things to tell her to so she can look forward to it. I caught a glimpse of her calendar and realized that she is labeling events herself--birthdays, holidays, fun events at school. We have been having Achievement days right after school on the first and third friday of each month. With this regular schedule our attendance has been very high. Tricia had pre-labeled her calendar with several more months of achievement days even though they hadn't been planned by the leaders yet.

So, girls need things they can look forward to. I'll bet they wouldn't mind a surprise here and there but when they know things in advance they get to enjoy the event longer.

Waiting

I packed my bag the night before--chapstick, an easy read, a few dollars, insurance card, and of course a flannel baby blanket to crochet while waiting. I packed it all into my homemade-by-my- Mom quilted bag. The hospital takes care of the patient but support people take care of themselves. I dress in layers, you never know if it will be too hot or too cold. I set my alarm early and awaken wondering if I really slept. Hurry up, Hurry up. Drive.
Check in. Hurry, wait...
What time is it? Oh, I almost forgot, time as we know it has ceased to exist. Double check with the patient to see if I can do anything for them. The patient this time, dressed in a periwinkle gown and white hose, isn't crying, throwing up, or resisting being poked, whew, that makes my job easier. I try a joke, "when you wear a dress you need to keep your knees together". Something I've said many times just never to this family member. Wait, wait, wait.
Wheeled away before I can say good-bye.
Now, the hard part, waiting.
First, I double the estimate of the surgery and promise myself that I will not worry until that time. I settle into a chair in the waiting room. Wait, wait.
I remind myself that during this time I will not be visiting the subjects of: infection, malpractice, insurance benefits, major life changes, fairness, how many times I have sat in a room like this, or any other similar or discouraging subject. Visit the hospitality cart, wonder what the expiration date was on the muffins, try one. Wait.
Get myself a drink.
Call home. Wait. wait.
Try to ignore the phones ringing, appointments being scheduled, and especially the surgeons telling others that their patient is done. Crochet and wait, crochet and wait, crochet and wait.
Hum, interesting conversation: Deseret Gym did what? The Boys swam in the nude during the '50's? Really? Intrude into conversation with harmless looking older men. Listen to them talk about the polio scare of their boyhood and their great grandmother who crossed the plains with the first handcart pioneers and lived long enough travel to Florida by airplane and how frustrating it is to miss a temple assignment and just sit and wait for his patient to have her surgery and he was the batisimal supervisor and he thought he was going to be able to do his shift but the hospital kept calling back and changing the time and then he'd have to call his coordinator, again... and I hope he didn't mention how inconvenienced he was to his patient.
Wait, wait...
It is almost time to start worrying. Wait, wait.
" Stanford?"
"Yes, that's me."
"Follow me to the conference room "
( That means he wants to talk privately. I'm used to it..."it was a difficult surgery, her muscles are like sewing wood instead of silk--I don't know how she will heal"..." It was a difficult surgery we did everything we knew how to do and still couldn't get her hips back in"..."It was a difficult surgery and we didn't get as much correction as we wanted to.")
"Everything is fine, It wasn't the easiest gallbladder to remove. He was quite inflamed and he had a huge stone that was about this big. (visualize pointer finger to thumb) Just wait for about 45 minutes more and then you can meet him at his room." I breathe a sigh of relief and go out to wait some more.

Tricia

Tricia is playing with the puppet theater we bought at IKEA. She added the hula skirt curtain. On the right of the picture is one of her Taiwanese glove puppets. It is a hand carved rat bride (last year was the year of the rat). When she was staying at Shriner's hospital last year a theater group from Taiwan was in town for a festival. They came up to the hospital one afternoon and performed for the patients. They met with the students that were in the school and taught them to work the puppets. Tricia picked up the techniques very quickly and has a natural affinity for things Asian and she and the puppeteers formed a friendship. When they returned to their country they decided that a highlight of the trip had been Tricia. They made her this red puppet and sent it about a year ago along with a DVD of them performing their 2008 show. This Christmas they sent her two more puppets, a boy and girl rat dressed in white wedding outfits.

Tricia's scooter

Tricia got a scooter about a month ago. We love it! This is a terrible picture of her but the scooter looks good. It has been wonderful for her and has given her a lot more independence, especially at school. It can be put together or taken apart quickly. It separates into 4 sections plus the basket each weighing 35 pounds or less. That makes it easy to transport with no adaptions to our van. Yeah! Thank-you to the wheelchair guys at Shriner's for suggesting it and making the adaptions and thank-you to MDA and to everyone who contributes to them for helping to pay for it.

Colonial Day

Tricia's class has been learning about colonial times. Today they are finishing up with rotations like butter-making and candle making and then having a feast. Tricia has been so excited and planning to bring a chocolate pie as her contribution (not very authentic but tastey). I had planned to go and help her because her aide couldn't be accessable all day but Katrina said she was willing to do it. We gave Tricia her choice and she choose Katrina. Tricia woke her up yesterday to help her make pies and as we looked for pilgrim clothes for Tricia she dug out things for Katrina to wear too. They looked so cute and happy when I dropped them off at the school. This really frees up my day, hum, what should I do?

Gratitude 1

Tricia came home from school last week and told me a little about her day. The teacher went around the room and had each child tell the class something they were thankful for. Many of the boys were grateful for their computer, the TV, or games systems. She thought those were kind of lame answers. I asked her what she had said. She said she was thankful to be at home this Thanksgiving and have dinner with her family. ( Her goal last year after having surgery was to be home by Thanksgiving. It was only 6 days after her surgery and it turned out she was still too sick. Bruce and the rest of the girls came up in the evening. They had pie day without us and had made dinner by themselves and then had brought us plates of food. They also made all of us Indian headbands to wear as we ate. They were cute and happy and made the day so special. But it was still disapointing to Tricia not to have been home for 4 months, to have wanted to go before Thanksgiving and then not having it happen.) I thought it was such a sweet thing for her to say and asked what her teacher's response was. She thought it was sweet too.

Krysta helping out

On Sunday, I decided to let Tricia have a bath in my jetted tub. Bruce was gone, Camille was still asleep so eventually Krysta got lonely and wandered in. I asked her if she would stay with Tricia while I went and got Tricia's church clothes and if she would take care of any emergency that arose--but of course nothing would go wrong because Tricia was comfortably laying in the tub, feet against the side wall with just a skiff of bubbles that the jets were making. I walked to her room, choose out clothes--seriously, I could not have been gone even two minutes when I heard Tricia scream "AAAAAAHHHH!". I hurried to the bathroom. The entire tub was covered in at least a foot of bubbles and they were climbing up the walls. All I could see were bubbles until I was right next to the tub and saw a little face in there too. Krysta had added body wash to the tub and when the bubbles got out of hand she stood there calmly scooping bubbles off of Tricia's face.

Tricia and the door

It doesn't matter how long you are in a hospital, half an hour, weeks, or months. The wonderful feeling you get walking out the hospital doors never loses its charm! This was just a short follow-up visit on Aug. 20, 2008. In the background is the revolving door at Shriner's hospital

Dr D'astous

Tricia has been seeing Dr. D'astous since she was 3 years old. He is her orthopedic surgeon at Shriner's Hospital. We sure like him. He is warm and caring and and thinks about the whole child and what is best for them overall. When Tricia was small there were really no good options for many children with infantile scoliosis. A mother from Colorado asked Dr. D'astous if he would meet with a European Doctor and learn a technique that was currently almost unused, halo traction for the spine. This doctor trained him and Shriner's now uses it to delay spinal fusions (traction then bracing then a few years later they will do the traction and bracing until the child grows bigger, and also as in Tricia's case, to get as much correction as possible before a spinal fusion. The Salt Lake Shriner's is one of the few places in the world that do this. What a blessing to have it so close.

Bear Pa Challenge

Several months ago the PR person at Shriner's asked us if he could do a write-up about Tricia and her involvement at Shriner's for a charity benefit. This began a nice little association with the "Think Outside" children's charity and their cycling event for the year--a three day almost 200 mile tour from Bear Lake to Park City. The charity was started by Tyler Hooper (he is on the right side of the check) of Centerville who had done his eagle project for Shriner's and wanted to be able to help more. Tricia and I met them at a kick-off barbeque in July and again at the finish line in Park City last Saturday. They were an incredibly nice group of people. Tyler's brother told Tricia that he had been riding up a very steep hill the second day. He was exhausted and ready to pull over and give up. Then he remembered Tricia, saw her cute face, thought about all she had been through and it inspired him to keep going. He told her he had made it up that hill because of her.

Merman Blaine

Katrina has been helping me this morning learn how to blog and insert pictures. This is really just a test. Tricia, Krysta and Camille have been doing some creative play. They spread out blue blankets and created a fisherman, alot of mermaids, and (to the dismay of all of our Ken dolls) a couple of mermen.