Lack of Reason or Logic

Over the years I've tried to figure out how to describe Kimmie's disabilities, her limitations. I tell people how she spells and reads sight words on a fourth grade level, has an amazing memory, knows her way around town, and has a very good sign vocabulary. They are always surprised. She's much smarter than people realize. But how do I convey what's lacking? How can she know so much but be as significantly disabled as she is?

The answer that we've come up with is that she simply lacks reasoning skills, is unable to follow logic patterns, and doesn't understand consequences.

Math is a logical, reasoning based subject and it tends to be her weakest. Of course, we aren't sure if it is her weakest subject because she doesn't understand it or because it does not interest her.

Kimmie knows what happens if she pushes a certain button or flips a switch, but more complex consequences she cannot grasp. For instance, if she throws a DVD box, we take it away and put it in the top of the cupboard. If she gets mad and has a DVD box in her hand, we will try to warn her that if she throws it we will take it away; however, she cannot follow the sentence through to the consequences. All she hears is throw and that's what she does. When we put the movie up, she doesn't seem to understand why. This has been repeated many, many times over the years and she still cannot link the movie being put UP, to the action of her throwing it.

Kimmie is amazing at following the calendar, remembering what day of the week it is and what number the day is. She remembers events, what day of the week they occurred and in which month--like going to the dentist on a Thursday in October or having a shot on a Monday in March two years ago. But if she wants to do something today and we tell her we have something else and cannot do that until another day, she'll have a melt down. If we tell her we are going to take sister someplace, drop her off, and go to a restaurant or go shopping, Kimmie is very happy. She loves to shop and go to restaurants, but waiting through the first activity of dropping her sister off is often too much for her. She can't understand and follow the progression of events.

Memory based things she is good at. Things that take more processing, analysis, well, that's where she's lacking.

Maybe that helps you understand Kimmie's disabilities, how she can be so smart and so disabled at the same time. And writing it out will help me explain it in the future when asked.

--Mom

Christmas Tree

Well, we finally have our Christmas tree up. Whew!

I was going to put it up last weekend. I asked Kimmie if I should put the Christmas tree up. She said yes. I told her there would not be any gifts under it yet, would it still be ok to put up the tree, if there are no gifts? "No."

It upsets Kimmie if there are no gifts under the tree. So, last weekend, I wrapped instead of putting the tree up. For a week we have had a pile of gifts in the corner. Kimmie has checked on them regularly to make sure they are still there. (While I was wrapping, she showed me the Winnie the Pooh paper I was to use to wrap hers.)

Yesterday, we finally had time to put the tree up. Kimmie was all smiles and especially liked seeing the gifts under it. She checked on our progress regularly. Tree. Tree with gifts under it. Tree with lights. And, eventually, tree with lights and ornaments! She was very happy. She still checks regularly to make sure the gifts are there.

Oh, and the stockings are up, too. That made her happy. I even put gifts in them. We'll see if they last until Christmas. One year we found her sitting with a gift from her stocking in front of her. She had not opened it. She just had it out and sat there looking at it.

Bethany is counting down with Kimmie each day. The math is a little too much for Kimmie, but she knows Christmas is 25, and she knows today is 12.

--Mom

Photo Shoot

A few weeks ago we took the girls to have some pictures taken. Big sister needed a good "head shot" for an event she's participating in, and Kimmie, well, we wanted some good pictures of her. She's a hard one to photograph and it had been a long time since she'd taken a really good school picture. Plus, she's considered a senior this year, so we really needed to get some senior pictures taken. She'll be a senior again next year, too.

I picked the studio because they do a lot of photos of babies and small children hoping they would be able to deal with Kimmie.

Kimmie did amazingly well, in spite of wanting to play with all their props. I was moving from one side of the room to the other trying to get her to look or sit or stand facing this way or that way. The photographer had to be quick to get a few shots taken before she was off to investigate some other prop she'd spotted and wanted to check out.

But all in all we were able to get some very good pictures of her. Whew!

At one point she spotted a football. She grabbed it up, tucked it under her right arm, stuck out her left arm and ran across the room, just like she does at home whenever we watch football. The photographer's face lit up and he says, "I have a football background."

We laughed and said, "Sure, that would be fine."

He pulled it down and mumbled something about her not be dressed for it. We just laughed and said, "That's ok. It just adds to the incongruity of her playing football."


Happy Thanksgiving and Happy Football Season!

--Mom

PS: For more on her football moves, read December 11, 2009 post entitled "Football."

Cute

A few weeks ago I was picking Kimmie up after Sunday School. The teachers in her class were laughing. They said they asked her if she knew she was cute. Kimmie shook her head yes. That struck them really funny, that Kimmie agreed she was cute.

It's actually a family joke.

Big sister has this conversation regularly with Kimmie.

Bethany: "Are you cute?" (Imagine exaggerated inflection.)

Kimmie: "Yes."

Bethany laughing.

We've been telling her she's cute for 19 years. She has no reason to think otherwise. Yes, she knows she's cute!

--Mom

Ambulance

For a year now we have been hearing about the hospital, sleeping in the hospital bed, the brown medicine the doctor put on her back, and the dreaded blood pressure cuff.

Well, now Kimmie has something new to talk about. Riding in the ambulance "car" . . . to the hospital . . .on the bed. Oh, and the dreaded blood pressure cuff.

I think the fact that she effectively fought off the blood pressure cuff convinced the EMS guys that she was fine.

At least it is something different, well sort of, and new to talk about.

--Mom

Unexpected Adventure

A couple nights ago, Dad and Kimmie and I made one of our excursions to Sam's Club to refill the cupboards. When you have a 16-year-old, a 19-year-old, a 21-year-old and Mom and Dad, you consume a lot of food.

Our shopping trip took an unexpected turn.

We had filled our cart with various groceries and then swung past the movies for Kimmie to pick one out. She had been very good while we were shopping. She picked a movie, but as we moved to the check-out area, she changed her mind and wanted to go back. We had taken a place in line and were trying to calm her down, when out of the blue she began to have a seizure.

I was looking right at her when it started and immediately knew what was happening. I told Dad and he began to try to lift her out of the cart to lay her down. A young male employee happened to be walking by, so Dad asked him to help lift her out of the seat. The young man quickly put down what he was carrying and helped.

After Kimmie was securely in Dad's arms he told the young man that he needed to lay her down someplace quiet. (And I'm thinking, "and not concrete.") We were all looking around for some place safe to lay her down when I noticed what the young man had set on the floor--a cash register drawer of money! I thought, "I hope no one steals that while he's trying to help us."

When I turned back to Dad and looked at Kimmie I realized that she had stopped moving, stopped breathing, her lips were blue and her skin was gray. There was blood on her lip and I could not tell if it was from her lip or coming from her mouth. I told Dad her lips were blue and blood was coming from her mouth. I heard voices around me asking if we needed EMS and Dad saying to call 911 NOW. As we were moving to lay her on the floor I quickly pulled out my phone and called 911. Someone tossed a few clothing items our way which were placed under Kimmie's head.

When I had the 911 operator on the phone, she wanted to know our location. I responded with the Sam's Club. The operator said she needed an exact address. I asked the employees milling around us, and they gave me the street name. I told them I needed the number. They started calling out numbers, but they weren't the same numbers. They finally agreed on a number and the operator was satisfied.

Then the operator wanted to know where in the store we were. I said by the check-out lanes. "Which lane?" (She was starting to frustrate me.) I quickly told her lane 13, although I didn't think they'd have any trouble finding us, but I also don't think the employees milling about us were organized enough to think about having someone at the door to direct EMS. And I wasn't sharp enough to tell them to send someone to the door to watch for the ambulance.

By this time Kimmie's color was improving and she was moving around a bit. Dad was crouched over her making sure she was breathing. The 911 operator was still talking in my ear. She wanted to know how old Kimmie was. I said 19. She said 19-year old female. I said yes. Then she asked another question, I started to answer it when I heard one of the voices around me ask, "How old is she?" I said, "She's 19." Then realized I'd already told the 911 operator that. Then I hear this echo of voices around me. "She's 19?" "She's 19." "How old is she?" "She's 19."

Kimmie's color was returning but she had a lot of blotchy red spots on her cheek and on her neck. I heard someone say, "She may have bit her tongue or lip" and I thought, "that's probably where the blood came from."

The 911 operator asked me which hospital we wanted to go to. I told her the children's hospital. She then points out that Kimmie is 19. I quickly pointed out that Kimmie is developmentally disabled, had surgery at the children's hospital just last year, and that they have all her records.

Eventually I looked up to see EMS coming across the store rolling a guerney. There seemed to be a lot of men, but as they came closer there were just two. Kimmie was quickly picked up, put on the guerney, strapped down . . . . and then they started with the dreaded blood pressure cuff. She was quickly fighting mad!

They finally gave that up and rolled her out to the ambulance. That's when I realized why I thought there were a lot of men. There were about six firemen, a fire truck, the ambulance, and the two paramedics. The paramedic who was going to ride in the back advised me that no one is allowed to ride in the back with the patient, but he'd make an exception this time and let me ride with Kimmie. Did he really think there was any chance of taking Kimmie without me? I don't think they would have gotten out of the parking lot before realizing what a bad idea it was to NOT take me with him. She would have gone completely ballistic. Even with me there she was fussing and trying to get off the guerney.

Before we left the store I glanced around to make sure we had all our stuff, except the cart of groceries which we left. I realized at this time that the drawer of cash was gone. I assume the young man retrieved it. I certainly hope so.

When you pull the story apart and look at certain parts of it, it can be almost comical.

But there is not anything comical about looking at your child who has gone completely still, has blue lips and gray skin. Scariest thing I've ever seen. Took my breath away. All I could think was, "I'm not ready to lose her."

--Mom

P.S. Kimmie is doing fine. Dad and I are still recovering!

Dancing with Pooh Bear

In general, Kimmie likes "boy" movies like Aladdin, Ben10, Danny Phantom, Batman, and Superman, but now and then we override her choices and put in a more "girly" movie.

This week big sister reintroduced Kimmie to the movie Anastasia. Surprisingly, Kimmie has asked to watch it three more times.

The cutest part is when Anastasia is imagining a dance in a large ballroom. Kimmie always gets her biggest Pooh Bear, holds him in a dance pose, and then dances around the room. It's really cute.

Yesterday she was doing that when we had a guest at our house. There were lots of "aahh"s.

--Mom

Little People

Kimmie has been the smallest in our family for a long time. She has also been the smallest in her school classes for many years.

She's so used to being the smallest that she's not sure what to do with people littler than her.

Generally she keeps her distance from kids. If there are a lot of kids playing somewhere, she will just watch and not go close. If there are just a couple, she might get closer. She never approaches them or tries to play with them, but she might want to play with one of the toys.

She likes to go to playgrounds. She doesn't "play" much at them. Usually she takes the steps up to a spot where she can look around, and then she watches the children. If they get too close to her, she gets anxious. I think the reason they bother her is because they move quickly and sometimes abruptly, darting here and there. It may make her feel like she could lose her balance as they run around her.

She's the same way with animals. Dogs and cats move too quickly and in unpredictable ways. Larger animals, like horses, don't move so suddenly. She's afraid of dogs and cats, but fine with horses.

Sometimes children approach Kimmie. This really gets her aggitated. She doesn't have a clue what to do with children who try to talk to her. She's not sure what they are going to do or what they want. Often children will watch Kimmie, curious about her, especially when they see her signing.

I always feel sorry for the kids who want to be Kimmie's friend. It's hard for them to understand that she's not comfortable with them.

--Mom

Adventures in Bathtime

A few weeks ago I told Dad that I thought we needed to buy a bath chair for Kimmie.

Since her scoliosis surgery, she has just not been comfortable sitting in the bathtub. Sitting with her legs straight out in front of her is uncomfortable.

Getting her sat down and back up is another issue. When you sit down in a bathtub, you curl your back forward to balance yourself. That's something Kimmie cannot do with the rods in her back. I would have to hang onto her when she's sitting down so she doesn't fall backwards. And then getting her stood back up when everythings wet . . . challenging.

To solve all those problems, we bought her a bath stool. The first time we used it I wondered if she would balk at sitting on it, but she plopped herself right down and sat there like it was her royal throne. She loved it and said it was more comfortable.

The bath stool has made bathtimes more of an adventure for me. The adventure is in trying to keep the water IN the bathtub and not on me and the floor. I've tried positioning the chair different ways, but there always seems to be a body part the water runs off of and onto me and the floor. Elbows. Knees. Shoulders.

But, all in all, the bath stool has been a huge success . . . much less strain for both of us. One of the best purchases we have ever made.

Only problem is what to do with her collection of plastic ducks. The ones she used to play with in the bathtub. Especially those special plastic ducks she picked out from the dentist's treasure box!

--Mom

A New School Year

Today is day 14 of this school year, so we almost have three weeks under our belt.

We expected it would be a rather smooth transition. After all, this is the beginning of Kimmie's fourth year of high school, her fourth year with the same teacher and her third year with the same signing aide. Many of her classmates are probably the same.

Of course, she did have a new bus driver and bus aide to break in.

However, there was one little difference this year. Kimmie's sister, for the first time ever, leaves for school before Kimmie.

For some reason, seeing her sister leave each morning really upset Kimmie. Bethany tried sneaking out of the house, but Kimmie would look around and know that Bethany was "all gone" and still be upset. Kimmie would be "mad, mad, mad" getting on her bus. At school, she would remember, and fuss because Bethany was "all gone, school."

Kimmie is very attached to her sister, but we really weren't sure why she was so upset.

Did she not realize that Bethany went to school?
Was she worried that Bethany would not be home when she arrived home?
Did she think that Bethany was at home all day waiting for her bus to return?
Was she worried no one would be home when her bus returned?

We really don't know, but for the first 10 days of school she cried and was mad every morning when she climbed on her bus. She would bring it up at school and would fuss.

But, on Day 11, she was happy when she climbed on her bus, and she had a great day at school. She has been happy ever since and has had good days at school. Whew!

We only have a 4-day streak going, and it could snap at any moment, but we'll take it for now. The bus driver and bus aide seem to have relaxed this week, and they seem to be smiling more.

Kimmie's sister wonders, "What will Kimmie do when I go off to college?"

--Mom

Baby Panda

Kimmie loves panda bears. She has for years. In fact, she has quite a collection of stuffed pandas, panda movies, panda books, panda t-shirts and panda pajamas.

She has an amazing capacity for sitting and watching documentary type movies about panda bears. Of course, what are most of these movies about? --Having babies to keep the panda from becoming extinct. We know all about the birthing and baby stages.

Kimmie has decided that she has a baby panda in her tummy. She points at her belly button and tells us there's a baby panda there. Then she tells us we need to go to the hospital to get out the baby panda.

I think that could probably be interpreted to mean that Kimmie wants a pet panda!

--Mom

Bathtime

I was giving Kimmie a bath the other night. While I was shampooing, and soaping and rinsing her, she was singing. She was probably singing to herself, not to me.

First she sang Rudolph the Red Nosed Reindeer.

Next she sang Away in a Manger.

Then I believe, from the signs I saw, that she was signing a song we used to sing many years ago. It was a Sesame Street song. I think Ernie sang it. Some of the words were, "Oh I'd like to visit the moon . . ." The second verse was about visiting the sea, "I'd go for a day, if I had my wish, but there's not much to do when your friends are all fish."

The last song she sang was from a music video, from many years ago. The music video featured deaf children. In the last song they were signing about giving God's love away. Kimmie was signing that part and doing the motions they did that represented giving God's love away. I wonder who she was giving the love to.

Sweet child, impressive memory.

--Mom

Our Blessing

I was asked a few weeks ago, "How has God blessed you?" One of those Sunday school questions.

My answer was Kimberly. To elaborate I said that all my kids are a blessing, but I always think of Kimmie first because some people would not look at Kimmie as a blessing, and I want people to know that we do think of her as a special blessing God has given us.

I was then asked to give a specific example of how having Kimmie has blessed me. I struggled a bit answering this one because it's hard to put into words. So much of it is a feeling rather than something concrete that you can describe.

I thought about that question for several days and then posed it to the family to see what they would say. We all pretty much came up with the same answers.

It's the happy feeling you get when you hear her laugh.

It's the smile that comes to your face when she smiles.

It's the warm feeling inside when she wraps her arms around you and hugs real tight.

It's the bond our family shares as we all pitch in to take care of her.

It's the shift in perspective, in priorities. Our priorities are different. Our perspective on a lot of things is different than it would have been otherwise. For example: We'll never be empty nesters. That's ok. We have different priorities.

She's a reminder to put others first. It's hard to focus on "ME" when you have Kimmie. You know how it is when you have children, life becomes all about the kids. And if you've ever been around Kimmie, you know that "it's all about Kimmie!" So, just get over it, life's not about you or me, it's all about Kimmie. (That's suppose to be funny, so laugh.) But, more seriously, she is a reminder to look beyond ourselves.

It's the way she innocently points us to God. At 19-years-old, she's an adult, but she has the innocence of a child. And Jesus said we all need to "become like little children" to enter the kindgom of heaven. (Matt. 18:3) There are also those times when she does something or signs something, and I think, "she gets it, she understands all about Jesus." And I'm in awe that she can see what so many people can't.

This is the BIG blessing for us. It's the opportunity we have to be there when she touches the lives of others. It may be a stranger in an elevator. It may be someone we know is hurting. One day it was a car salesman. She reached out and hugged him. He almost cried. When he pulled himself together, he confided to Dad that many years earlier he and his wife had a Downs baby who only lived a few days . . .

Yes. She is a blessing.

--Mom

Disney World - Heading Home

Kimmie was really glad to be heading home. She was tired of the hotel and wanted to be home.

However, we did not make it clear to her that we would not get home that day. It took a day and a half both ways, but she wanted to be home that night. When we stopped at a hotel about 9:00 pm, she was NOT happy. "Home tell none." was what she signed repeatedly. Translated that means "No hotel." She always signs "home tell" for "hotel."

Dad rushed in to get us registered while Bethany and I gathered a few things and Kimmie. When we entered the lobby, someone else was registering ahead of Dad, and he was still waiting. We all stood there and waited--some of us more patiently than others! Kimmie stood there and yelled, screamed, whatever you want to call it.

When Dad finally had a key card, he quickly handed one to me so I could get the little screamer out of the lobby. Bethany and I took her upstairs to the room, while Dad grabbed our suitcase from the van. Unfortunately, when we reached our room the key card did not work. We stood in the hallway with the little screamer until Dad arrived with his key card . . . . . . it didn't work either.

To get the little screamer out of the hallway, Dad rushed her back to the elevator to go down for new cards, while Bethany and I stood with the suitcase in the hallway.

Kimmie did calm down after we were in the room. The next day when we finally arrived home, before she climbed out of the van, she signed, "Home tell none." We assured her that we were home and finished with hotels.

Since our trip, every few days Kimmie talks about "Magic Kingdom." We ask her, "Do you want to go back to Disney World?" She always says, "Yes." But for many weeks when we would follow-up with the question, "Do you want to go back to the hotel?" She would say, "No!" It has been a couple months since our trip, and she has finally started to say yes to going back to the hotel.

She really does like to be at home.

--Mom

Disney World - Shopping

We were a little disappointed with the shopping at Disney World.

When asked what she wanted to do at Disney World, Kimmie's first answer was always hug Aladdin. Her second answer was shopping. She had very specific things she wanted to shop for: Aladdin playing cards and an Aladdin coloring book.

I was a little skeptical that we would find these items. However, I read in my 850-page Disney guide book that there was a store across from The Magic Carpets of Aladdin ride that specialized in Aladdin merchandise. We went there, only to find that it mostly carried cultural merchandise. There was one rack of Jasmine "princess" souvenirs. Of course Kimmie has no interest at all in anything with a girl on it.

We looked through the shops everywhere we went (the air conditioning was part of the draw), but we were really disappointed in the depth of selection. Mostly there was Mickey Mouse, Minnie Mouse, Disney Princesses, Tinkerbell and Toy Story III merchandise. Everywhere we went we looked for something with Aladdin or the Blue Genie. There were no t-shirts, no pins, no magnets, no pencils, nothing.

We began naming all the movies that Disney has made and thinking about how few of them were represented in the Disney merchandise. We really felt like Disney missed the boat by not having a larger variety of characters represented in their merchandise.

But Kimmie did not go home empty handed. Late in our trip we went to the toy store in Downtown Disney and finally found something with Aladdin. We found a playset of plastic Aladdin figurines. (What I believe to be the only Aladdin souvenir in all of Disney World!) Fortunately it was a different set than the one she already had at home.

And then there was the "Make Your Own Star Wars Sword" display. She added a green sword to her collection of Star Wars swords. (She bought the purple one with birthday money, so I think her collection is complete now, at least until they come out with another color.)

She also added a new Pooh plush to her Pooh collection and a new panda plush to her panda collection.

We may have to add on to the house to hold all her collections!

--Mom

Disney World - Pooh, Eeyore & Tigger

I have been busy and have not finished my stories about our trip to Disney World!

The first characters that we saw, that Kimmie wanted to hug, were Pluto and Goofy. We waited in line and she hugged on them with her Pooh Bear in tow.

One of the workers, cast members, commented on her Pooh Bear and asked if we had seen Pooh yet. I said no, so he pulled out a map and marked exactly where we could go to see Pooh.

We made our way to the character greeting place where Pooh, Eeyore and Tigger were and got in line. The area where they were was pretty good size. The line went along the side of the area with a rope to keep those waiting out of the greeting area, but we could see Pooh and Eeyore and Tigger.

One of the cast members was walking along the rope chatting with those waiting. When he stopped to chat with us, he noticed Kimmie's Pooh Bear and watched her hold her arms up towards Pooh wanting to hug him. The characters were getting ready to leave for a couple minute break. As Pooh was walking past, the cast member called to him to come over to Kimmie. Pooh reached down and hugged Kimmie in her wheel chair. She was thrilled. When Pooh left, Kimmie reached for the cast member and gave him a big hug around the neck. He melted.

The next thing I knew he was unhooking the rope and telling me to take her up by the front of the line so she could be first when the characters returned.

Eeyore had not left yet. Kimmie got herself out of the wheel chair and into Eeyore's arms for some good hugs.

They were all very nice to her. I kept watching the characters to see when they would stop hugging on her so I could pull her away, but they would just keep on hugging.

When they returned, she hugged on them some more.

Every morning when I get her up, she stops at the pictures we hung in her room and points at Pooh and Eeyore and Aladdin. And then her beloved Brown Bear gets lots of hugs as she remembers.

--Mom

Screaming

If you have read very many of my blog posts, you may have the impression that there is a lot of screaming that goes on here with Kimmie.

Well, I suppose you could look at it that way, but there's not as much as it may sound like.

And we're used to it, so we mostly just shrug it off.

And when Kimmie smiles or laughs or giggles, well, you just forget all about that screaming.

--Mom

Disney World - Aladdin

Sometime over the past year, Kimmie made the connection that the Disney animated characters are at Disney World. We have pictures from our trip to Disney World in 2000, of Kimmie hugging Eeyore and Tigger and Baloo, but she didn't seem to grasp where we were and that we could go back.

This year, when she figured out that Disney World is where the cartoon characters live, that's where she decided she wanted to go. From the very first time she said she wanted to go to Disney World, it was specifically for the purpose of hugging Aladdin.

I did some research and learned that Aladdin and Jasmine can usually be found at EPCOT in the Morrocco section of the World Showcase. Sure enough, when we came to Morrocco, there they were along the lake greeting kids.

The characters that we saw during our trip in 2000 were animal characters where the costumes are over their faces. With Aladdin being a "face" character, I was concerned that he wouldn't really look like the animated Aladdin. But, as you can see from the picture, he looked very much like the cartoon, and as far as Kimmie was concerned he was Aladdin.


Jasmine was a little disappointed that Kimmie wouldn't have anything much to do with her, but she quickly realized how special this was to Kimmie. Jasmine enjoyed watching Kimmie right along with the rest of us.

There were some flowering bushes next to where Aladdin and Jasmine were greeting folks. As Kimmie was leaving, Aladdin picked one of these flowers and presented it to her.



Kimmie has framed pictures in her room now, so she will always remember this special day.

Our only disappointment was that the Blue Genie was not available to greet. We inquired at both EPCOT and Magic Kingdom and were told at both places that he was taken off the greeting schedule. But we have recently learned, from some relatives in California, that Disney's California Adventure park has an Aladdin musical production show that is outstanding.

Hmmmm.

--Mom

P.S. Happy Birthday, Kimmie!

Disney World - Swimming

While at Disney World we took Kimmie swimming three times. She loved it!

The first time we took Kimmie swimming, I went in with her. She likes to wear a float vest. We like her to wear it, too. It's nice to have that little bit of extra security. However, we still need to be in the pool with her, and the vest is not foolproof.

Kimmie was wound up pretty good that first day we swam. I was adjusting her float vest, and she had that mischievous glint in her eye. She was laughing, and pushing and wrestling trying to get away from me. Of course, she's wet, I'm wet, and eventually she slipped out of my hands. While still laughing she splashed face down in the water. I immediately grabbed and yanked her out of the water. I caught Dad's eye and he rushed over. Kimmie was coughing and sputtering. I lifted her up to Dad who raised her up to sit on the side of the pool.

I have to compliment Disney on their lifeguards. They are very attentive. One was at our side before we could blink. He was offering to bring over oxygen for Kimmie, then he offered to call EMS. He assured us that there is no charge for an EMS call. Disney pays for it all.

Kimmie was coughing, but she was also breathing well and her color was fine. We assured him that Kimmie was ok, she did not need oxygen nor did she need EMS. He was very persistent telling us that she could be dry-drowning. By this time Kimmie was breathing normally in between coughs and signing "swim more, swim more." The lifeguard offered to call EMS three times. We finally convinced him that she was fine. Kimmie was fine, if she hadn't been she wouldn't have wanted to "swim more."

We did feel safe while we were swimming. The lifeguards were very well trained and patrolled the perimeter of the pool continuously.

The last time we took her swimming was on our last day at Disney World. We had finished at the parks. Kimmie was so tired by then that she just wrapped her arms and legs around me and hung on like a monkey. I told her she was a monkey, but she said, "No." I walked and bounced around in the water with her wrapped around my neck. After a while her eyes were glassy and I thought she was almost asleep. I told her she was a hippopotamus sleeping in the water. She said, "No."

Swimming was a nice break from the heat, but we could have done without the excitement of an almost EMS call.

--Mom

Disney World - Soarin'

We were very careful about the rides that we took Kimmie on. We did not want to take her on anything that might be too jarring for her back. In other words, no roller coasters or simulator rides that jerked around. I read up on every ride before we went to make sure.

Soarin' is a simulator ride at EPCOT. We all read about it and decided that it would be ok for Kimmie. It was described as a perfectly smooth ride. What we didn't take into consideration is that she would absolutely hate it!

She screamed through the entire ride. No amount of hugging and comforting did any good.

The images projected on the screen to give us the feeling of hang-gliding over mountains and oceans were obviously videos, but that coupled with the seats being lifted up so that we were dangling and swaying, and the wind in our faces gave a very real sensation of hang-gliding. And it totally freaked out Kimmie.

The rest of us thought it was a really cool ride, but a painful experience with Kimmie shrieking.

It was a very popular ride with frequent wait times of over 100 minutes. Of course we had Kimmie with us. We didn't have to wait that long, but it was probably the longest wait that we experienced, maybe 20 minutes.

--Mom

Disney World - Favorites

At the end of our trip to Disney World, we asked Kimmie what her favorite part of the trip was. She immediately said, "Hug Aladdin." Well, we have to agree, that was our favorite part, too. Seeing Kimmie's dream come true was very special.

We asked Kimmie what her favorite ride was. She responded with, "Blue carpet." (The Magic Carpets of Aladdin.) Kimmie and I rode it 4 times. The first day we were at Magic Kingdom, we all rode it once. When we went back at the end of the week, Kimmie kept saying that's what she wanted to ride. When the park opened, Dad and Bethany went to ride Big Thunder Mountain while Kimmie and I went straight to The Magic Carpets of Aladdin. There were not enough people in line to fill the ride, so Kimmie and I rode it three times straight without getting off.

We asked Kimmie what her favorite show was. She responded with, "Magic mouse." (Mickey's PhilharMagic.) We saw it three times. It's a 3D show. We went to it twice the first day we were at Magic Kingdom, but Kimmie wouldn't wear the glasses. Later in the week, when we were at Hollywood Studios, Kimmie started wearing the 3D glasses on the Toy Story Mania ride and then at the Muppet Vision 3D show. So, when we went back to Magic Kingdom on the last day, we went back to Mickey's PhilharMagic and she wore the glasses. But she may have liked it best because Aladdin is in it.

Magic Kingdom was definitely Kimmie's favorite park. We went there the first day after arriving and checking into our hotel. The rest of the week, as we went to the other parks, she would sign "Magic Kingdom." We didn't get to everything the first day, so we went back at the end of the week.

Bethany said that her favorite parks were EPCOT and Animal Kingdom. I asked her why, and she said that Animal Kingdom and EPCOT had more stuff she was interested in, like nature, cultures, and science. She said that she wasn't as interested in the movie stuff that's at Hollywood Studios, and Magic Kingdom was more for little kids. I thought it was a pretty good assessment of the parks.

--Mom

Disney World

We took our trip to Disney World a few weeks ago. I've been planning to write some stories about our adventures there, but it's taken me a little while to get at it. Here is the first, an overview.

Everything I read about Disney World said that it is very accommodating to individuals with disabilities. I was hopeful that would be the case, so we could have an enjoyable trip, but I was also skeptical. When I called Disney World to get more information about traveling there with Kimmie, they seemed hesitant to give me any information. In one book I had read that we should go to guest services upon entering the park and request a "Guest Assistance Card" based on Kimmie's disabilities. We decided we would try that and see what happened.

Wow! We were amazed at how well we were treated. Between the wheelchair and the Guest Assistance Card, we were immediately directed to an alternate entrance at each ride/attraction, either the fastpass line or a wheelchair line. We usually had to wait a few minutes for them to work us into the queue or for the few people who might be in line ahead of us, but the wait was minimal and almost always out of the sun.

Occasionally, as Kimmie tired, she would get impatient if she couldn't get immediately on the ride, but usually she was ok or we were able to keep her distracted. She would not have been able to tolerate the regular lines, and it would have been very difficult had this not worked out. We were very grateful, felt a little guilty, but were very appreciative.

Bethany put it this way: We are not taking advantage of Kimmie, because we would not have chosen to come to Disney World. The only reason we're here is because Kimmie wanted to come.

Which is true. We were there because of Kimmie. And the rides that she could not ride, we had to wait in the regular line or get a fastpass and go back.

The Disney staff ("cast members") were very nice to Kimmie, especially the older ones. And especially Aladdin. He was very sweet with Kimmie. I'll write about that later and include pictures!

--Mom

Dresses and Tags

We took Kimmie shopping for new dresses a couple days ago.

Always a fun experience. You see Kimmie cannot stand to try on clothes that still have the tags hanging from the little plastic cord.

I think we tried about 8 dresses on her. It was loads of fun. Every dress had lots of little fabric buttons up the back, all buttoned on the hanger. Since the buttons are fabric they don't slide easily through the button holes. Before I can put the dress on her I have to unbutton all these buttons. Then pop the dress over her head. As soon as it hits her shoulders, she is trying to yank it off, while I am trying to button all these little buttons. Like I said, it was loads of fun.

Then to unbutton the buttons . . . off with the dress . . . toss it and a hanger over the door at Dad . . . then to unbutton a bunch more buttons on the next dress. While I'm doing that, Kimmie is putting her play clothes back on. Once I get the buttons undone, I have to take her play clothes off to put the next dress on . . . and it all starts over again . . . the dress hits her shoulders . . . she's trying to get it off . . . I'm trying to button the buttons . . . . .

Oh, and during all this there is the screaming. Wonder how far and wide her screams could be heard? Wonder what that store clerk thought!

(Dad read this and said the screaming didn't sound that bad outside the dressing area. I guess it sounded bad to me since it was pretty much in my ear and inside a small area.)

Once the tags are off, she wears the dresses fine.

--Mom

Bethany Where?

Kimmie: "Bethany where?"

Us: "Where is Bethany?"

Kimmie: "Church."

Us: "She's not at church. She's with some people from church. They're in Arizona. She got on an airplane and flew for 3 1/2 hours."

Kimmie: "Aaaahhh." Slaps hand or stomps foot. "Mad."

We've had this conversation with Kimmie 5 times today. She misses her sister and is really mad that Bethany's gone.

I think she's going to be looking for Bethany at church in the morning, and then she's going to be really mad that she can't find her. I bet it's going to be a really "fun" morning at church.

--Mom

Stinker

Yes, you all got it right. Kimmie was a little stinker her first week (3 days) at the new adult day program.

Let's see, in three days she threw her lunch, threw her snack, threw her glasses, threw her shoes, and threw a VHS movie--breaking it.

However, there was a lot going on that first week. One, new place, new people. Two, the worker who knows sign language was on vacation. And, three, they were boxing up all the movies, books, games, puzzles and activities to move the group to a larger location in another building. I think that was pretty disturbing to Kimmie the first day, seeing everything she wanted to play with disappearing.

Of course, Kimmie's always a little bit of a stinker. That's just Kimmie. I've been trying to drop little comments like, "Kimmie has to have at least one outburst a day," to help them understand that this is Kimmie and what a day with her includes.

This week the workers have been perkier when talking to me. I think they are getting used to her and figuring out ways of doing things that will minimize Kimmie's frustration. She does like to have everything done HER WAY.

So maybe Mom can start relaxing and heave a sign of relief. I think they're going to keep her.

--Mom

School's Out . . .

Ever since I went back to work in 2000, school being out has been problematic. Who will look after Kimmie?

Leaving her with strangers, wondering if they will take her to the restroom, if they will make sure she eats, if they will keep her safe, if they will be nice to her, is extremely difficult. And on the other side is the concern about Kimmie. Will she be good, will she cooperate, or will she cause problems. I don't want her to make life difficult for the people around her.

We were able to keep her in school age (elementary age) programs until she was about 16, at which time she was "kicked out" for being too old. We have been fortunate to have Kimmie's brother, sister and grandparents to help out when we cannot find other care options, but they won't always be there to fall back on.

So, right now we are trying our second adult day program. (The first one we tried two summers ago. After 3 days they told us not to bring her back. They didn't have enough staff to adequately take care of her.) The verdict is still out on whether this second place will be a good spot for Kimmie. And, unfortunately, Kimmie is the one causing the problems.

--Mom

Carrot Cake

At school each week Kimmie goes shopping with one of her teachers. They take her to the grocery store where Kimmie practices finding the items in the store and purchasing them through the self-scan or a regular check out lane.

Each week I send in a list of three or four items for Kimmie to shop for that week, along with money to make the purchase. Of course the list has to be non-perishable items that Kimmie can bring home on the bus, but I try to mix it up with a variety of stuff . . . canned goods, cookies, crackers, pretzels, pudding, paper towels, toothpaste, pasta, ketchup, soap, chapstick, cake mixes, brownie mixes . . . you get the idea. I try to keep them moving around the store.

A few weeks ago I put on the list a cake mix, whatever flavor Kimmie chose. We all expected her to come home with a chocolate cake since that tends to be her favorite. Much to our surprise she came home with a carrot cake mix.

A couple weeks later I baked the cake. We asked Kimmie if she wanted some carrot cake. She looked at me kinda weird and shook her head yes, but when I set it down in front of her she pushed it away and signed, "no, no." I guess it didn't look quite like what she expected. I let it go that night even though I was sure she'd like it if she tried it.

The next evening when we were eating more cake, we asked her again if she wanted some. She again said yes, until she saw it. BUT, we didn't let her off the hook.

Instead we kinda ganged up on her. Her Dad, her sister and I all started singing the "magic eating song." (See previous post.) Kimmie tried to resist, signing no and turning her head away, but by the second verse she couldn't resist any longer. She started signing the song with us, and then her mouth popped open. In went the carrot cake, and we all stopped singing to watch her reaction. As soon as the cake hit her tongue, her eyes lit up. We knew she'd like it once she tried it.

We didn't have to sing any more, and her piece of cake disappeared quickly.

She's so funny!

--Mom

The Magic Eating Song

When Kimmie was little we had a lot of trouble getting her to eat. She might eat a few bites to satisfy her hunger, but then she would lose interest. To get Kimmie to eat we would sing to her. We had a long list of preschool songs that we would sing. She would focus on the songs while we spooned food into her mouth.

We would sing The Wheels on the Bus, The Itsy Bitsy Spider, Mary Had a Little Lamb, Twinkle Twinkle Little Star, Row Row Row Your Boat, Over In The Meadow, The Ants Go Marching One by One . . . Some of these songs we had books for, with lots of extra verses that we learned. There were Sesame Street Songs, Disney Songs, movie soundtrack songs . . .

Over the years Kimmie became conditioned to open her mouth when we sang to her.

As Kimmie moved into adolescence and one of her medicines was changed, her appetite improved and we no longer had to sing to keep her eating. Since we no longer needed to sing on a regular basis, her "eating" songs dwindled to one favorite that Dad has dubbed, "the magic eating song." The magic eating song is Over in the Meadow:

Over in the meadow in the sand in the sun
Lived an old mother turtle and her little turtle one.
"Dig," said the mother.
"We dig," said the one.
So they dug all day in the sand in the sun.

It has ten verses, one turtle, two fish, three owls . . .

This song still comes in handy when we need Kimmie to take medicine or try a new food. We sing and she cannot resist. Her mouth just pops open! Sometimes she tries hard to resist and keep her mouth closed, but the longer we sing the more she gets into the song and forgets to resist.

--Mom

(This is a lead in to the next blog entry, stay tuned . . .)

Reality vs The Idea

All year long Kimmie will talk about Halloween. She will talk about what costume she wants to wear in great detail. She will talk about carrying her purple pumpkin basket, knocking on doors and signing trick-or-treat. Sometimes she is going to be a butterfly. Sometimes the Blue Genie. Sometimes Aladdin. But when Halloween arrives, Kimmie runs to the family room in the back of the house and won't go near the door, won't have anything to do with a costume, and signs "no" to everything.

We say that she likes the idea of Halloween, but not the reality of it.

She did go out trick-or-treating when she was younger, but it was always a bit difficult for her. One, she was scared of the other kids in costumes. Two, it was hard for her to see where to walk and whether the surface was even or uneven or steps. Three, the decorations scared her. Four, she was very slow getting around and would almost get trampled by kids who were running.

There are other examples of Kimmie liking the idea of something, but not the reality. Take peanut butter and jelly sandwiches . . . Kimmie talks about them all the time at school, but in reality, she does not like the texture of bread, nor does she like the texture of peanut butter.

She's an interesting girl.

--Mom

Sweet, S-W-E-E-T

Kimmie's favorite word right now is "sweet". She will sign "sweet" and then fingerspell it. She never signs just the word. She has a few words like this that she always has to fingerspell after signing the word. "Free" is one, "Free, F-R-E-E." Usually used in the context of "rub the gold lamp, free F-R-E-E the Blue Genie."

Right now Kimmie is big on Gwen, a character from the Ben10 cartoon. "Sweet S-W-E-E-T girl G-W-E-N." Before Gwen it was the girl characters on Teen Titans. "Sweet S-W-E-E-T girl Starfire." "Sweet S-W-E-E-T girl R-A-V-E-N." Daddy took exception with Raven being a sweet girl. He says she has anger management issues, but Kimmie thinks she's sweet.

We are always telling Kimmie that she is sweet, but she just shakes her head no.

--Mom

How to Get the Best Hugs

Kimmie has quite the imagination. Every morning she tells me who she is pretending to be and then I ask, "Who am I?" Most mornings she is Aladdin, and I am the Blue Genie. The Blue Genie and Aladdin always have to hug, and they are the best hugs. If you want a good hug, tell Kimmie you are pretending to be the Blue Genie.

Sometimes I'm Shaggy or she's Shaggy. That usually results in a pretty good hug.

Sometimes she's Gwen (from Ben10), and I'm Ben10. Again, they have to hug.

But the best hugs are Blue Genie hugs.

Helping Kimmie with her breakfast is rough . . . all that hugging! It's a great way to start the day!

--Mom

Eating Machine

Kimmie has turned into quite a little eating machine. She has gained back all the weight she lost during her surgeries plus a couple pounds more.

I counted up and on Sunday she had meals or snacks eight times! Breakfast, a snack during Sunday School, lunch, a hotdog at the zoo, a snack when we arrived home from the zoo, supper, a snack with her medicine, and then popcorn before she went to sleep.

--Mom

Invisibility cloak

Kimmie has been doing a little routine at bath time. She is never eager to leave her toys for a bath, and had usually fussed at us for interrupting.

One evening she was a bit happier than usual, and she started giggling as we went upstairs. She sat down, still giggling, while I went into her room to get fresh pajamas. She giggled even harder while I was gone, so I knew she was up to something.

When I walked back in the bathroom, she had gotten a washcloth from a drawer and spread it over her head. She laughed out loud, and ducked her head in that way that always means "you can't see me".

She did this more often, now it is almost every bath time. And she usually picks a blue or aqua washcloth.

We asked her tonight if she is invisible when she has the washcloth over her head. She looked a little confused, and then signed"yes". But her giggle will always give her away.

Dad

Brown Bear's Adventure

Brown Bear, for those who don't know, is Kimmie's teddy bear. Brown Bear was big brother's teddy bear first. Kimmie loved Brown Bear so much that big brother let her have him many, many years ago. Kimmie named him Brown Bear after her favorite book when she was little, "Brown Bear, Brown Bear what do you see?" (Eric Carle)

Brown Bear is well loved. You can tell by the bald spots. He goes most places with Kimmie. He's even been through surgery with her, more than once. We always make sure we have him when going to a doctor.

Yesterday when we went to the doctor with Kimmie, we parked in the parking garage, rode the elevator to Level 3 so we could walk across the pedway to the office building. Once we arrived in the office building we took another elevator to the floor we needed.

When we were leaving the doctor's office we rode the elevator back to the third floor so we could walk across the pedway again, back to the parking garage. A woman on the elevator was talking to us and exited on the third floor with us. As I was talking to he, Kimmie walked over to the balcony overlooking the lobby and looked down at the fountain. As I continued talking with the woman, it crossed my mind that Kimmie might drop Brown Bear over the rail.

I glanced at Kimmie standing by the rail, she was fine, and then I turned back to the woman as we chatted. When I glanced back at Kimmie she was walking towards me with empty hands. Sure enough, she had dropped Brown Bear.

The woman and I rushed over to the rail and looked down. There lay Brown Bear. Fortunately she had dropped him rather than tossed him, or he might have ended up in the fountain.

BUT, as we looked down at Brown Bear, a lady picked him up and was walking off with him. As this lady was walking off with Brown Bear I started calling down to her, "Lady with the bear, wait, come back, lady with the bear . . . ". The woman I had been talking to started calling down to her as well, "Look up. Look up." I had no idea where the lady was going with Brown Bear.

She did stop and look up. (Whew!) I asked her to put him back and we'd come get him. She asked what floor we were on, said she was coming up and would bring him to us. A minute later the elevator doors opened, she stepped off, handed me Brown Bear and stepped back on the elevator. It happened so fast I hope I said "thank you," I think I did.

And Brown Bear returned to Kimmie's loving arms.

We have so much fun (well, that might be an overstatement) and so many adventures going to the doctors. We never know what might happen, who we will meet, who Kimmie will decide to hug, how people will respond to her . . .

--Mom

New Doctor

In January we took Kimmie to a new doctor. Well, technically she's not a new doctor since we did see her once before, about 4 or 5 years ago.

As usual Kimmie was quite stressed about a doctor appointment, especially since she couldn't remember and didn't know what to expect. We were taken into the doctor's office, rather than an exam room, which calmed Kimmie down.

We were chatting with the doctor when suddenly she interrupted herself to say, "She's signing!"

We responded that, yes, Kimmie signs, that's her means of communication.

She wanted to know if Kimmie was trying to tell us something. I turned and watched Kimmie for a minute and responded, "No, she's just talking to herself." (Kimmie does that a lot. She retreats into her own world and signs about it. Sometimes it's about Aladdin. Sometimes Eeyore. Sometimes she's a butterfly flying through the sky. . . .)

We went on with our discussion. A little while later she interrupted herself again and said, "She is just adorable!"

Today we went back to this doctor for a follow-up. She had a "student doctor" with her and twice she turned to the student doctor and said, "Isn't she adorable?"

I think this doctor is a keeper.

--Mom

Green Star Wars Sword!

OH, NO! Evidently there is a GREEN Star Wars light saber sword.

At least there is a commercial with a green one in it. I saw it the other day while sitting next to Kimmie. I gasped. She poked me and signed "green". Her sister laughed.

Maybe we won't be able to find a green one at our stores? Maybe I can keep her out of the toy section?

Oh, well. She does play with them.

My little collector.

If you have no idea what I'm talking about, see the February 16, 2010 post titled "Kimmie's New Collection."

--Mom

WDW 2010

That's where we're headed on our next vacation, Walt Disney World. Kimmie kept asking and we decided to take her.

We figured she's had a rough year. She could use something fun to replace all those bad memories. Everytime she starts talking about the hospital, we talk about Disney World.

She wants to hug Aladdin and the Blue Genie. She wants to shop for Aladdin playing cards and an Aladdin coloring book. I sure hope they have those two things or she may be one MAD little girl. There's suppose to be an Aladdin store near the Magic Carpet ride. We'll see.

--Mom

Sleep

Some prayers must have been said after my last post about Kimmie not sleeping. Since then, she has slept through the night 3 times, 3 times in one week. Not consecutive nights, but that's ok. It's a start.

Amazing how much that helps us feel better. Like we've come out of a dense fog.

--Mom

4-Months Post-Surgery

Tomorrow it will be four months since Kimmie's scoliosis surgery.

I would like to be able to say we are all fully recovered and everyone is doing great. Unfortunately, that's not entirely the case--for the most part, that is true.

Kimmie's back is straight. Her shoulder blades are almost in the correct positions now. She's only missed one day of school since the beginning of January.

However, she continues to be up in the night, often several times a night. Or one of us has to sleep with her. Or she wants to sleep on the couch, and one of us sleeps on the other end of the sectional.

She tells us her back hurts and continues to want it rubbed, almost more than before the surgery.

We are always analyzing and trying to figure out why. And trying different things to see if she sleeps better. It's all a guessing game since she can't tell us much. But we've kinda stopped the analyzing and have just accepted that it's going to take her a long time to get over the trauma of the two surgeries.

One of the scary things is that she tells us that on Thursday (the day of the scoliosis surgery) the doctor put brown medicine on her back. We didn't think she was suppose to be able to remember anything from the operating room. If she remembers that, what else does she remember that she cannot express? It's pretty understandable that she could be having lots of bad dreams and fears upon awakening in the night.

It would be nice to get a few nights of uninterrupted sleep, but for now Kimmie needs a lot of comfort and reassurance that we are there.

--Mom

Big Sister or Little Sister

The other day Kimmie's sister was helping with her. I said to Kimmie, "Is your big sister taking good care of you?" Then I thought about that and said to Kimmie, "Is your little sister taking good care of you?"

It's always a dilemma. Is Bethany the "big sister" because she's a foot taller than Kimmie? Or is Bethany the "little sister" because she's three years younger than Kimmie?

Bethany admits that she sometimes forgets that she's the youngest. When people ask her, she often stumbles over her answer.

I told Bethany, let's settle this. We'll ask Kimmie if you are the "big sister" or the "little sister." So we did.

Now it is all settled. According to Kimmie, Bethany is her big sister.

--Mom

Kimmie's New Collection

I've mentioned before that Kimmie is a collector. For a while it was Care Bears. She would pick a color and we would have to search high and low for that color Care Bear. As soon as she had that one she would pick another color. We were saved from that obsession when they were taken off the market. But there's only a couple of them that we are missing.

Several months ago Kimmie came up with something new she wanted. A Star Wars light saber sword. I looked at them in the store and they are about four feet long. Almost as long as Kimmie is tall. Why do they make these things so long? Kids could do some real damage. I was looking for one much shorter, but the short ones only come in a set with a long one.

Anyway. Kimmie spotted the set with the short and long one when she was at the store with me one day. She jumped out of the cart (as in the bench seat at the back of an extra long cart--NOT the basket part of the cart, that's a scary thought), grabbed the box and put it under her arm. In other words, nobody's getting this away from her without a fight (or screaming fit). So she became the proud owner of a set of Star Wars light saber swords that light up, and the long one makes noise. Blue light saber swords. They also had red ones on the shelf.

Well, she enjoyed the blue ones for several months, and then she started in with "red". So now we have two sets of light saber swords. She especially enjoys holding the short ones and having one for each hand. It takes two hands for her to handle the long ones.

When she has the short ones in each hand it looks like she might be ready to direct airport traffic, or play the drums, or direct a music and light show.

Thankfully, I have not seen any other colors but red and blue.

--Mom

Kimmie's New Chair

After Kimmie's scoliosis surgery it became apparent that we really needed to find her a chair that fit her small size. When she sits on the couch, she is just perched on the front edge. If she leans back, she looks terribly uncomfortable and awkward. Mostly she lays on the couch because sitting is not comfortable.

I was skeptical that we would find something that would fit her. It seemed like all the children's furniture that I had seen was sized more for preschoolers rather than maybe an eight to ten year-old.

We were pleasantly surprised to find, at the second store we went to, a chair that fits Kimmie perfectly. And it matches the family room. It's not going to win any style awards, but it's not hideous either.

At first she wasn't sure what to make of it, but day after day she would sit in it more and more. Now, it is usually the first place she goes to sit. She may eventually get down on the floor to play, but usually she sits in her chair first.

When she plays on the Playstation, she sits in her chair. When there is a TV show on that she really wants to see, she usually sits in her chair. It helps that her chair is closer to the TV.

One of the best purchases we've ever made.

--Mom

Just Perfect

"You are worthy, our Lord and God,
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being."
Revelation 4:11

I love verses like this one. I always think of Kimmie.

God created her just the way He wanted her to be.

She may not fit society's standards, but that's ok, because she's just the way God intended her to be.

And we think she's just perfect.

Ok, maybe there are some things she could improve on . . . . . . like everyone else, but you know what I mean . . . . . . she doesn't need to be fixed or healed, she's perfect just the way she is.

After all, she doesn't need to be able to talk for God to know what's in her heart. And she doesn't need to be able to multiply and divide to touch another person's heart with her smile or her hug or her laugh.

Just perfect.

--Mom

The Panda Mask

Kimberly is in art right now at school. We weren't sure how this would go since she really cannot use sharp tools and is always sticking her fingers in everything. But, she actually seems to be doing well in art.

She is especially proud of the panda mask she made. Evidentally paper mache is right up her alley. Something she can get her hands in.

She carried the panda mask home the other day and showed it to everyone. Her teacher observed that it looked like something you'd buy in a store. Not sure I'd go that far, but it is really nicely done.

She likes to put it up over her face, although she can't see out since she wouldn't let them put holes in eyes. She carries it around the house, hugging on it. When she stops playing with it, we'll probably hang it in her room. It's definitely a keeper.

--Mom

Adult Day Care

A few weeks ago we looked at another adult day program. This one seemed to have a better program and a smaller client to staff ratio (smaller than the last place we tried--the one that told us not to bring her back after three days. She required more supervision than they could provide.)

We are going to see if this place will have room for Kimmie over the summer. Hopefully we'll get our foot in the door for year-round when Kimmie finishes school in two years.

The one thing that always strikes me when we tour adult day programs is that they are adults. It is so hard for us to think of Kimmie as an adult. She's such a "little" girl in so many ways--her toys, her interests, her size.

Sometimes I wonder if she will fit in. But she's with adults at church and she does ok. She's actually more sociable with adults, even developmentally disabled adults, than she is with youth or children.

A new phase for us.

--Mom

What a Day!

What a day.

Took me an hour and ten minutes to drive to work. A drive that is normally 10-12 minutes. Hadn't even gotten my coat off when Kimmie's teacher called. Kimmie had picked her nose until it bled and bled and bled. She (Kimmie) was hysterical.

Fortunately Kimmie calmed down while I talked to her teacher, and I didn't have to go back out on the ice to get her.

And we have ended the day with another major nosebleed, right at bedtime. Hope we can get some sleep tonight.

--Mom

Baseball

I've written about how cute Kimmie is running around with her football under her right arm and her left arm out in front to knock down anyone in her way. Since I've written about football, I thought I should write about baseball. Baseball is actually her favorite sport.

She gets her bat and she gets into position to bat. Amazingly, the part of baseball that she is the best at is working to dig a hole for her back foot to rest in while she is batting. She works and works her foot attempting to dig a hole in the family room rug. We're not sure how or why she fixated on this goofy, idiosyncratic part of batting, but she spends most of her time working her foot on the rug. I suppose she has seen this on television, but we don't watch baseball very often.

When she finally "swings" (not sure you can really call what she does a swing, but she does move the bat) at the imaginary ball, then she has to stop and tell us that she has hit the ball. She drops the bat and runs. Her running is more of a back and forth pattern rather than a circle-the-bases type movement. Sometimes in the middle of her running the bases she catches the ball, stops and declares herself the winner.

I don't think she quite understands that one team bats and the other team catches the ball, and then they switch.

But she sure is cute and funny.

--Mom

PS. She received a full size football for Christmas. She thinks she's really big now when she plays. Her little arm sticks almost straight out with the bigger ball under it.

Perspective

I think I've written something like this before, but it bears repeating.

One of the benefits of spending time at the children's hospital is the perspective it gives us about our lives. As big as the surgeries felt to us, they did not seem so big when we looked into the faces of other families at the hospital dealing with so much more.

Kimmie's surgeries were a rough time we had to get through, but once through, we were pretty sure it would be something that we could put behind us. Some of the families we met at the hospital were facing challenges that may never be resolved.

We were especially touched by the little boy in ICU in the bed next to Kimmie. He had just celebrated his 4th birthday, in ICU. He, and his parents, had been in the hospital, mostly in ICU, for 31 days. That's right, 31 days, an entire month. We didn't get the whole story, just bits and pieces. Evidentally he collapsed while running, was revived and brought to the hospital. I almost felt guilty when we were moved out of ICU after just 24 hours, knowing that Kimmie was quickly recovering and in a matter of days we would be home and life would return to our normal routine. Their lives will probably never return to what was normal before.

All we have to do is take our eyes off ourselves and look around, and we are reminded of how lucky and fortunate we are.

--Mom

Boxing Gloves

When Kimmie was in the hospital for her surgeries, she of course had IVs. In October she just had one in her right hand, but in November she had IVs in both hands. Kimmie doesn't like being hooked up to anything, especially IVs and blood pressure cuffs.

To keep Kimmie from pulling the IVs out, the nurses put diapers on her hands. They stuck her hand in the diaper and wrapped it closed around her wrist. When she wanted to, she could pinch through the diaper and get at the other hand, but it slowed her down considerably.

Kimmie has always had trouble straightening her arms all the way. When she is laying down, she usually keeps her hands close to her chin. The diapers looked remarkably like boxing gloves and the way she kept them close to her chin really emphasized the effect. Everyone commented on it.

Kimmie didn't have a lot of fight in her through most of her hospital stays, but we all know she normally does have a fight in her. Especially when it comes to getting her way.

The "boxing gloves" did create one problem. It's kinda hard to sign through a diaper. Most of the time she was too out of it to try to sign, and, amazingly, we were able to understand some of her signing in spite of the diapers.

The diapers were necessary, but a bit counter productive, too. We really wish she could understand the need to tolerate some things, but I don't know if she will ever reach that point.

--Mom

PS. Kimmie still has spots where the IVs were in her hands. She is always showing them to people and telling them how she cried at the hospital. If you see Kimmie and she starts pointing to her hand, she's trying to tell you all about it.

8-weeks Post Surgery

It has been almost eight weeks since Kimmie's scoliosis surgery. We are starting to feel like normal has returned.

Kimmie started sleeping better at the beginning of January. At first she just wanted to sleep on the couch and did not sleep well in her bed, but the last two nights she has slept in her bed.

She went back to school last week for three days and then was out for a snow day. She is back in school this week. The first day she came home really wiped out, dragging her feet, and immediately laid down on the couch. But the following days she seemed to be fine.

Kimmie is eating well. She has not gained all the weight back that she lost, but she is eating and we think the weight will gradually be put back on. Some days she is almost ravenous.

She still has some trouble picking up a book or flat object off the floor. In fact she has fallen at least three times trying to squat down to pick up an item. If it is something that sticks up a little, like a stuffed animal, then she can reach the paw or nose and get it. The flat stuff is what she can't quite manage . . . yet.

She figured out how to get her socks on. It requires her to sit on the floor with her legs bent a certain way so she can reach her feet.

She's figuring it all out on her own . . . how to do what she wants to do when her back doesn't bend that way any more.

The hump is mostly gone, unfortunately her shoulder blade on that side is still out of place. It gives her back an asymmetrical appearance. She still likes to have her back rubbed, so I'm always trying to rub across that shoulder blade in the direction it needs to move to be in the right position. Don't know that it will do any good, but it's all I can do.

--Mom