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

Latest Recovery News

Kimmie's scoliosis surgery was 5 weeks ago today. Overall she is doing well. We've been out and about the last week trying to build up her strength. This has been interesting. We usually avoid the malls this close to Christmas, but we've actually been to two malls in the last 8 days.

Today, however, our outing was to the doctor, pediatrician. Shortly after the surgery Kimmie began reaching back and poking at the top end of her incision, the only place she could reach. We have discouraged this, but it did not stop Kimmie from poking anyway. (If you know Kimmie, you know that she's going to do what she's going to do and there isn't much we can do to stop her.) At first just the end of the incision looked irritated, but now there's about 3 or 4 inches that look bad.

The doctor put her on an oral antibiotic and a topical antibiotic. They are testing a sample to see what type of infection it is. Hopefully it is just a simple infection from her poking at it and not the more serious MRSA staph infection.

Sleep continues to be challenging. The last two nights she has not gone to sleep until about 5:00 am. She's acting pretty tired today, probably because we have gotten her up about 9:00 am both days after she stayed up almost all night. She is not on any pain medicine now, but she doesn't seem to be in pain when she is awake. She is not aggitated or irritable, she is simply awake. She is still on the muscle spasm medicine, but that helped her sleep after the first surgery. ? .

Kimmie is eating again. We hope to see her arms and legs fill out soon.

She is excited about Christmas, or, more specifically, opening presents. We wish you all a very Merry Christmas.

--Mom

Socks

If you have read very many of my blog posts, you have read about Kimmie and her socks.

Kimmie loves to pick out her own socks and that usually means she is wearing turquoise socks whether they match or not. (She has more than one pair now.)

The surgery has frustrated her. She can no longer bend far enough to put her socks on herself. This makes her mad!

She loves to change her socks multiple times a day as she changes her mind about which pair to wear, but she used to be able to do it on her own. It's not quite the same when you can't bend down far enough to do it yourself and have to get someone else to help you. Sometimes she refuses to let us help her. She has tried bending her leg every which way to get her foot up far enough, but so far she hasn't figured out a way to do it.

I think, as she heals, she might eventually be able to bend at the hips more so she can bring her knees up farther, and then maybe she will be able to reach her feet. We'll see.

--Mom

Football

We tend to think that Kimmie would have been our athelete if she had been normal. At least she takes more of an interest in sports than her siblings. She'll actually watch games with us sometimes.

Kimmie doesn't play, but she likes to pretend.

She's really cute when she is pretending to play football. She signs to us, "brown football." Then she points under her right arm where she pretends the football is. She bends her right arm like a chicken wing, tucking her elbow close to her side to hold the pretend ball tight. Her left arm she sticks straight out in front of her with the palm of her hand up in front. Then she runs across the room, ball tucked tightly under her right arm and left arm straight out. Well, it's not exactly running, but it's the best she can do in the way of running. When she stops she pants a little and tells us she is the winner. If she happens to be sitting down she pretends to run by bouncing her legs up and down. She has a small football which she sometimes puts under her arm.

Just the other day, after having lost weight since the surgery and looking more fragile than usual, we were watching a game and Kimmie started her football routine. I told her she couldn't play football, those football players would crush her. Her sister decided she was too cute and the football players would simply stand back and watch. But Daddy said he thought they'd just pick her up and carry her to the endzone.

We all liked Daddy's vision best.

--Mom

Scoliosis Surgery and Recovery

I'm really behind on our Kimmie Stories. Hopefully life will return to some semblance of normal soon and I can get back to sharing Kimmie with everyone.

I thought some of you might like more information about Kimmie's scoliosis surgery and her recovery.

What they did: Two rods were placed on either side of Kimmie's spine to hold her spine straight. These rods are attached with screws or pins. These rods go down to about her waist. Many of the bones in her spine were fused to each other which involved bone graphs. A few were not fused to allow bend in critical locations.

Why the surgery was needed: Kimmie's spine had an "S" shaped curve with the worst part of the curve being at the top. Having her spine curved like this caused her some pain and discomfort. (At least we think it did. Since Kimmie can't or won't tell us, it's a guessing game on our part.) It had also caused her to have a "hump" on the left side of her back, in the area of her left shoulder blade. But, more importantly, is that the curve was getting worse and as it progressed her chest cavity was getting smaller, shorter. If we did nothing and allowed the scoliosis to progress, her lung functioning would eventually be affected, a potentially life-threatening problem.

Recovery: Her recovery from this surgery has been much slower than the other surgeries. The procedure itself did not take longer than the earlier surgery, but the nature of this was much more involved--installing foreign material into the body and messing with the bones . . .

To understand what she might be feeling and experiencing, we did an internet search and found a website that a young lady had developed telling about her experience having scoliosis surgery. (www.scoligirl.com)

The "scoligirl" website helped us understand some of the pain and discomfort that Kimberly might be feeling. Which was very helpful since she is unable to tell us what she feels. Evidentally the pain following surgery is intense. On the scoligirl website, we learned that she had some level of pain or discomfort in other areas that were effected by the movement of the spine. For instance, because of the curve, the shoulder blade had been pushed out of place. After the surgery, it was able to move back into position, but this felt uncomfortable because it hadn't been in that spot for a long time. Also, moving the spine pulled or stretched some of her muscles making them sore for a while. We found this interesting because Kimmie did point to one shoulder and upper arm and say that they hurt. The shoulder was the one that the curve pushed into.

Since Kimmie now has these rods in her back, she has to move differently and there are movements that she just cannot do any more. She has not had any physical therapy yet, but she may need some to learn how to move for specific tasks like picking something up off the floor, reaching different ways for items.

At home, Kimmie has always played sitting on the floor with all of her toys strewn around her. She especially likes to sit on the floor and play with her magnetic sticks, while rocking back and forth. Well, Kimmie has only sat on the floor once since being home from the hospital. She sat on the floor for about 10 minutes yesterday and then wanted up. Getting down onto the floor seems to be difficult and she cannot get up by herself either. We're not sure yet if she will be able to continue to sit and play on the floor, or if this is going to be a lifestyle change for her and she will need to find another way to play.

It's been about 16 days since the surgery and she still spends most of her time laying down. She does not seem to be comfortable for very long in a sitting position. This may be partly because of her physical size and the fact that furniture doesn't fit her size very well. We may have to try to find some pieces of furniture that fit her small frame better. She can go up and down stairs with assistance, but has only done one step (from our family room to our kitchen) by herself since the surgery.

The hump that was on her left side appears to be gone. I think she has gained about an inch in height, maybe a little more. She appears to sit taller and stand straighter. She does not seem to be uncomfortable in any way when she is walking around. Our one concern is that there is a section of her back where the spine protrudes and forms a ridge. We went from a hump on the left to a ridge closer to the center of her back. We talked to the doctor about this, on the phone, and he thinks she is fine. He attributed it to her having so little muscle mass and fat.

Speaking of fat. She doesn't have any. Her appetite has not returned to normal, and we continue to have difficulty getting her to eat much. We've moved to trying to feed her every couple hours. We don't know how much weight she has lost, but she's definitely thinner and more delicate looking.

Feeding her every couple hours feels like we have a newborn in the house again. Her sleep schedule is like that, too. She doesn't sleep 12-20 hours straight any more. She is staying awake most of the day, but she only sleeps at night about as long as the pain medicine lasts. She is starting to sleep a couple hours past the medicine.

I think that gives a complete picture of how Kimmie's doing.

--Mom

America's Funniest Videos

Kimmie is so funny when we watch this show. She laughs so hard she can't sit up. Last night she was falling over sideways on me giggling.

She has always loved slap stick humor and watching people fall down really gets her laughing. She especially likes when they fall in water, but any kind of falling or crashing will get her going.

It was so incredibly good to hear her laugh last night. She has been grumpy for weeks, so we just sat and watched her smile and giggle and laugh and fall over.

--Mom

Countdown

We are counting down here at our house . . .

Dad has four more days to work, and then he's done. For a while he's going to be Mr. Mom, or Nurse Dad, or my House Husband. It will be interesting to see what he does when he no longer needs to check voicemail or email for work.

Ten days to Kimmie's next surgery . . . and still a number of things to get done. Two doctor appointments. Pre-op testing. Disciple Now weekend. Cleaning up the flowerbeds and leaves. Finishing the Christmas shopping (I'm making good progress.) Cleaning the house. Stocking the kitchen with food so the boy doesn't starve while we're at the hospital. Packing for a hospital stay of 5-10 days. Making sure sister gets packed for Grandma's house.

And, coming up with a better meal plan than we had during the last hospital stay. When Kimmie had surgery in October, she was suppose to be in the hospital for 2-3 days. No problem, we can get by eating in the hospital restaurant. Well, 2-3 days turned into six days. Six days was way too long to eat at the hospital restaurant. The children's hospital restaurant is McDonalds. Six days of McDonalds, yuck! By the time we left, we never wanted to see or eat at another McDonalds. I'm taking my own food this time. Dad will probably roll his eyes and complain about taking so much stuff, but it beats facing McDonalds every day.

--Mom

No More Oreos

No more Oreos, Halloween candy, or anything resembling chocolate or sugar!

Ever since Kimmie came home from the hospital, she has not slept well. If Kimmie doesn't sleep well, Mom and Dad don't sleep well. Funny how that works. We are ready for some good sleep at night.

She's not just waking up in the night; she is waking up hysterical, mad, frantic, screaming.

We ask ourselves, and each other, "Is she cold?" "Is she hungry?" "Is she thirsty?" "Does she hurt?" "Did she have a bad dream?" We ask her, too, but that's kinda pointless since all she does is scream at us and throw anything she can get her hands on. Fortunately blankets, pillows and Brown Bear are soft.

Don't know what's going on, but hopefully this new policy will help even out some things internally.

No more Oreos, Halloween candy, or anything else chocolate or full of sugar!

Trauma

Once Kimmie was home from the hospital, she recovered quickly from the surgery. Within a few days she was back to normal activity around the house and soon back to school.

Recovering physically is a whole lot faster than recovering mentally.

Kimmie has been fixated on doctors for a long time, but now it is even worse. And hospitals, well, need I say more?

If she dwells on it for too long she can work herself into a crying fit. We usually try to distract her with something much happier . . . which is just about anything.

She knows the way to the hospital, which is also the way to two of her doctors. She starts wimpering when she realizes we are close to the hospital.

Unfortunately, the trauma from the surgery is only going to get worse as we go next week for pre-op testing and then the following week for more surgery.

I'm sure she will be quite pitiful.

--Mom

Transitions and Cooperation

Kimmie is not too good with transitions. Going back to school this past week after being off for three weeks was pretty bumpy.

By Thursday the word was that if her behavior improved, she would be taken grocery shopping on Thursday, but if not, the teachers would not take her shopping. I told Kimmie that I was putting Oreos and pudding on her shopping list, that she needed to be good so she could go shopping and buy her favorite foods. She had her best morning ever on Thursday! (Mornings not being her best time of day.) And she did get to go shopping. Shows you that she can pull herself together and cooperate when she WANTS to.

It all depends on the "want to." Kimmie's "want to" doesn't work too well!

Maybe tomorrow will be the start of a better week. We can always hope!

--Mom

The Elevator Man

Yesterday we were on our way to the doctor. We parked in the parking garage and walked over to the elevators. There were already some people waiting and another young man in a suit walked up about the same time we did. As we waited, Kimmie was signing to me and I was interpreting her signs aloud (she won't go on to the next sign until we speak her sign).

The young man who had walked up at the same time as us became quite fascinated with this. Kimmie was telling me her doctor stories . . ."hurt finger, doctor March". . . "hurt finger, doctor January, red blood bleeding, shot arm". She didn't want to be going to the doctor and was working herself up to a sobbing fit remembering all the past experiences at doctors' offices. Just as she was about to cry, the elevator arrived--just in time to distract her from the sobbing!

We all entered the elevator. I asked the man by the buttons to push 11 for us. When the elevator stopped the first time, the young man who was so fascinated with Kimmie realized he had forgotten to have the button pushed for his floor. I guess we were already above whatever floor he wanted to get off on because he was rather flustered. He was muttering to himself as he tried to decide whether to push the button or wait until it was headed back down. Kimmie heard him and turned to see who was talking. She looked him over, turned back towards me, turned and looked him over again, then decided she needed to hug him. He looked at me to see if it was ok, I looked him over and nodded. She gave him a really nice hug. As she was hugging him, he said to me, "She probably wouldn't be hugging me if she knew I was a doctor." I assured him that she hugs all her doctors, even though they make her cry.

I think he probably decided the extra time in the elevator was worth it.

--Mom

(By the way, she did go to the doctor in January. They pricked her ring finger to take blood for testing and gave her a shot in the arm. We don't have to tell her when that was, she remembers. There's nothing wrong with her memory!)

Our Hummer

Yes, we have a hummer. Not a Hummer, but a hummer. Our hummer is named Kimmie.

She sits and rocks and makes this "mmmmm" sound. She's usually very happy and content when she does this. So, for a while, we smile at our happy, humming girl.

After a couple hours of her making this sound continuously, well, we aren't always smiling. We start to feel like our heads might explode from the build-up of the sound. We try to get her to understand that she can stop making this noise, but to her it seems to be an uncontrolled noise that just happens. She doesn't seem to know how to stop it.

Maybe we need to buy some earplugs?

--Mom

Disney World

Well, if you read the last post you heard about Kimmie's book that's all about her. I think I really started something with my choice of pictures.

Evidentally, in looking at this book and talking with the kids and teachers at school, Kimmie has a new understanding of Disney World. And now knows how to sign it.

She tells us regularly now, almost every day, sometimes more than once a day . . . "Go to Disney World."

Hmmmmmm.

She wants to find Aladdin and the Blue Genie and hug them.

--Mom

Kimmie's "Book about Me"

The first week of school, Kimmie's homework was to complete a book about herself and then present it to the class. The pages were already started. "This is a picture of my house." "This is a picture of my family." "My favorite animal is__________." "My hobby is___________." Kimmie was to complete the pages by drawing or pasting pictures.

As is often the case, Kimmie's homework turns into Mom and Dad's homework. I hunted up and printed off several pictures to complete Kimmie's book and then wrote captions for each page. I sat down with Kimmie and we looked at the book together. She really liked it.

Her hobby is horseback riding. Her favorite animal is the Panda. Her favorite food is chocolate pudding and oreos. And her favorite movie is Aladdin.

After she took the book to school, her teacher asked if they could keep it at school for Kimmie to look at during free time.

Kimmie's favorite page seems to be "My favorite memory is _____________." For this page I put in a picture of Kimmie and her sister hugging Eeyore at Disney World. They were 6 and 9 at the time.

When we went to school on Open House night, Kimmie had to get her book and show us her favorite picture.

--Mom (Stay tuned for Part II)

Bringing Back Memories

Last night brought back memories we would rather not relive.

Kimmie has been sick with a cold/sinus stuff. She has started on an antibiotic, one she hasn't been on in years. Last night we gave her the antibiotic a little later than the night before and along with her other medications. The late hour and the combination of medications did not turn out to be a good thing.

It took her longer than usual to go to sleep, and then at about 1:30 this morning she was awake, WIDE awake, and mad, mad, mad. Finally she calmed down, then she was happy, happy, signing a blue streak, but still wide awake. Then out of the blue she was mad and we went through mad fits. Back and forth she went until almost 5:00 AM. Shortly after 5:00 she fell asleep. We get up at 5:00 so it was a very short night--or long, depending on how you look at it.

I let her sleep about an hour and then woke her up, got her ready for school and put her on the bus. It was one of those days when I was glad to get rid of her.

For the first 6 years of her life she hardly ever slept between 1:00 am and 5:00 am. Those are memories we'd rather not relive.

Today we gave her the antibiotic when she came home from school. Fed her supper. Let her play a little while, then gave her the usual medications. We hope she sleeps tonight, although when we asked her at supper if she was going to sleep tonight, she told us no.

--Mom

UPDATE: She slept peacefully all night. I hope this holds for a while, she needs to be rested.

-- Dad

Kimmie's Worrying

Kimmie has been fixated for a long time on all things medical. When she was little the toy doctor kits sent her into hysterics. I remember a little girl trying to listen to Kimmie's heart on the toy stethescope in preschool. Kimmie screamed until they were separated.

For literally years she will talk about having blood drawn or her finger pricked for a blood test. And she can usually tell you what day of the week it was and in what month.

But she has a new phrase she's using a lot now. "Hospital none, hospital none."

Yesterday she climbed off the bus signing to her sister, "Hospital none, hospital none."

Then, yesterday evening, she came out in the kitchen with a worried little forehead, stopped in front of me, and signed with that worried look on her face, "Hospital none, hospital none."

She knows and she's worrying.

--Mom

Men in uniform (by Dad)

Kimmie likes to give hugs. And there are some predictable patterns -- she like to hug men, and she likes uniforms (except nurses and doctors). Military, police, fire fighters, bus drivers -- she seems to be able to pick out a uniform.

Last week we were at church Wednesday night for the usual activities. Kimmie and I went to find her sister after things were finished, since the youth seem to be slow to let out.

One of the young men in the group has started ROTC. You can see what's coming.

He is a freshman, tall and slender. Very proud in his fatigues. He was talking in the crowded hallway with the rest of the youth; Kimmie's hug radar went PING and she just made a beeline.

Suddenly he had a little girl wrapped around his waist. Ambushed. He couldn't decide if he should be embarrassed or pleased. After a few seconds he gave in, as everyone does eventually. Kimmie's hugs are an irresistible force.

Dad.

Grocery Shopping

I actually took Kimmie grocery shopping the other day, and she was very good.

For years we have avoided taking Kimmie to the grocery store because it took longer and sometimes involved a lot of hysteria.

When Kimmie was little she could sit in the seat part of the cart, but we could only buy a few groceries that would fit in the bottom of the cart. If the groceries stacked up within her reach she would start pulling them out and throwing them on the floor.

When her legs were too long for her to sit in the seat, then she would have to walk along with us. This became an adventure because she would randomly grab things off the shelves and drop them in the cart. We might be picking something off a shelf, turn around to put it in the cart and there would be all this extra stuff in the cart as Kimmie grabbed and dropped items in as fast as she could. The items she dropped in the cart were not foods she liked, just random things she could reach and grasp. Fishing all these extra items out of the cart, putting them back on the shelf, and trying to keep her from putting more items in the cart, extended the time it took to shop and made the endeavor feel like an olympic event. Exhausting. This is when we stopped taking her to the grocery store. It was just too much trouble.

Now that the store has these extra long carts with the bench seat in the back, it is easier to take her along. She has also mellowed a little bit and does not jump out of the seat as much as when she was younger. There is still, usually, a little hysteria over Kimmie wanting to buy something and having trouble deciding what she wants to get.

The recent trip to the store with Kimmie came about because everyone else in the family was busy, so there was nobody to stay home with Kimmie. I couldn't put off the trip because we were running out of too many things. My list was long--not the best time to be taking Kimmie, but sometimes you have to do what needs to be done no matter what.

As it happened, Daddy had a bottle cap with "buy one get one free" on the inside. I gave Kimmie that bottle cap and told her to hold it for me. We had a little hysteria over Kimmie picking out a movie to buy. She finally settled on a spiderman cartoon--she does love superheros. She held the DVD for a little while but was taking the plastic off of it so I had to take it away and give her back the bottle cap. She held that bottle cap through almost our whole shopping trip. She put it in her pocket. She took it out. She twiddled and fiddled with it.

She still had it when we checked out. We traded the bottle cap for the movie. She only fussed a little when we left the store without the bottle cap.

She was amazingly good for a long shopping excursion. I was proud of her.

--Mom

Surgery X 2

We've known since the end of May that Kimmie would need surgery. Finally we have some of the details finalized.

Surgery #1 is scheduled for October 6. This is an exploratory surgery to look at the bottom of her spinal cord and determine if it is "tethered". If it is, then the neurosurgeon will "release" the spinal cord. She's had two "tethered spinal cord release" surgeries already, one at age 7 and one at age 13. Hopefully this will be the last, especially since her growth should be complete.

Surgery #2 is to be scheduled about 6 weeks after the first surgery. That will put it around the third week of November, the week before Thanksgiving. We don't have a definite date yet. This surgery is for the scoliosis.

Poor little girl sat on Daddy's lap and sobbed while we talked to the doctor today. Heartbreaking.

When she wasn't sobbing she was hugging the doctor. When he was leaving the room he declared himself to be stocked up on hugs for about a year.

--Mom

Grandma & Grandpa Are Moving

We have been telling Kimmie for several weeks now that Grandma and Grandpa are moving. Her response has always been "no."

On Wednesday they closed on their new place. That evening we went to help them with a few things. We had to take Kimmie with us, but thought maybe she would understand it better if she saw the old place boxed up. And maybe the new place would be a new adventure waiting to be explored.

Well . . . it mostly just got her worked up. At Grandma's house she always goes immediately to the video cabinet and picks a movie to watch. Once the movie starts she might go to the linen closet to get her blanket. Then she might gather the teddy bears to strew across the floor and get her books to open to her favorite pages. Once she has all her "stuff" then she is content to sit for a while.

Well . . . she went to the video cabinet . . . no movies. We told her they were boxed up to go to the new house. She looked around at all the boxes, leaped up and frantically started trying to dig through each box, while I chased her around trying to keep her from unpacking them.

She was mostly worried about where her Aladdin movies were.

Today, while she was at school, we moved everything to their new patio home. The first box I put in my car was the box of her videos. The second thing I loaded was her video cabinet. When we got everything over to the new place, we made sure the TV was hooked up and the videos were in her cabinet next to it.

When I told her tonight that we had her movies in her cabinet, she signed, "Aladdin?" I assured her I put the Aladdin movie in her cabinet.

Tomorrow we will see if she is better about the move.

--Mom

Sobbing for Sister

The other day Kimmie's sister had to go to the doctor. We had to take Kimmie with us. She was visibly anxious even though we kept telling her the doctor was not going to look at her.

We walked down what we call the "hallway of doom" looking at the door to the pediatrician's office at the end. Kimmie was clinging to my arm. Her sister commented that it is an eerie hallway with shadowy lighting.

Kimmie clung some more when it was time to go to a room. She refused to go any where near the examination table.

Kimmie's sister had to have her finger pricked for a blood test. Kimmie sobbed and sobbed for her sister, clutching me and hiding her face. Her sister just laughed because Kimmie was so pitiful.

When the doctor came in Kimmie sobbed some more, then hugged the doctor while she continued to cry.

Sometimes I don't know whether to laugh because she is so funny, or cry because she is so afraid.

--Mom

My Little Monkey

I came home from work the other day and Kimmie was sitting at the table in the kitchen. She looked up at me. She had black crumbs all around her mouth. I said to her, "Have you been eating Oreos?" She grinned and shook her head, "Yes."

She does love Oreos.

--Mom

My Little Collector

Kimmie never likes going to the dentist, although she does hug and hug and hug all over the dentist.

But the part she likes the most is the treasure box. For a while she was collecting plastic ducks for her bath, but now she has started collecting bouncy balls. And of course one is never enough, she has to have one for each hand. So when she went to the dentist this week she came home with two more bouncy balls.

Of course, after all the crying and the screaming and the hugging, everyone feels so sorry for her that they would just about give her the moon. Two bouncy balls, no problem.

--Mom

Trauma at the Dentist

Kimmie went to the dentist yesterday afternoon. Always a traumatic experience. She doesn't fight as hard as she used to, but she does cry and scream and wiggle a lot.

She looked like she had been in a fight the rest of the evening. Her lips and cheeks were puffy with red blotchy spots on them. She never eats well after the dentist, and yesterday was no exception. She ate maybe 4 or 5 bites of supper. We tried to get her to drink instant breakfast to give her some calories. But even drinking seemed to be a problem.

Poor little girl. It always seems like she has to endure so much more than her share of problems.

--Mom

Kimmie's Laughing

Kimmie's laughing. It's such a happy sound.

Last Saturday I was taking my other daughter someplace and we were driving a way we have not gone in a while. We approached a stop light on the green cycle at an intersection with a little hump in the middle. It's a fun intersection to go through a little fast on the green because the hump in the middle gives you that "whoosh" feeling.

Kimmie always loved going through that light on the green and feeling the "whoosh." She would laugh. I told her sister on Saturday when we were laughing that I could hear Kimmie laughing in my head even though she was not with us. And see her signing, "funny slide, funny slide."

We'll have to go that way soon so Kimmie can laugh as we bounce over the hump.

--Mom

School Dance

Kimmie has been having happy days at school. Yeah!

Yesterday at school she did a hula dance, her air guitar dance and she pretended to be a soldier (she likes to salute).

And she danced on the bus again.

What fun!

--Mom

School

School started this week.

Kimmie had a good first day. She even danced on the bus.

The second day she danced for them at school, but she threw her glasses on the bus. Little stinker.

Her sister's response to the first day of school, "School was awesome!"

--Mom

School Registration

I took Kimmie to school this week for registration. She received her schedule. We paid her class fees. Then she had her picture taken for her school ID.

It was a rather entertaining activity.

We had been telling her that we would be going, but she would repeatedly sign "No." I picked her up at home, loaded her in the car and off we went. When we arrived at school, she sat in the car signing "no, no, no" and refused to unfasten her seat belt or get out of the car. After I promised to take her back home afterwards, she calmed down and climbed out of the car.

When we entered the school she insisted on clutching my arm, hiding her face, and then she giggled. She wanted to go in the office, but when she looked in there, whoever she wanted to see wasn't there so she finally walked on with me to the cafeteria, clutching my arm and half hiding.

When we entered the cafeteria there were tables around in a semi-circle with different letters of the alphabet on them. Two people, mostly women, sat behind each table. There weren't too many in there registering, so the folks behind the tables were mostly sitting, looking around, waiting.

They were mostly sitting there with ho-hum kind of faces, until we came along. As we walked across the cafeteria and they spotted Kimmie, one by one their faces lit up with a smile. I guess that's the effect Kimmie has on people. She makes them smile.

We took care of the paperwork and then went across the hall for the picture. We had to wait behind a couple other students. Kimmie was pretty good. She decided to pretend she was playing baseball and she assumed her batting stance, complete with "digging your foot into the dirt" motion. One of the women from the office was helping with the ID cards. I knew she was one of Kimmie's buddies so I asked Kimmie if she wanted to say "Hi" to her. No, Kimmie was too busy "batting." As we moved up in the line and were closer to the woman from the office, Kimmie spotted her and over she ran with her arms out. This lady was pretty smart. She jumped up and went around the table so she could get a good Kimmie hug. And it was a good one, a double hug. One around the waist and one around the neck, with a really good squeeze.

Registration was actually kinda fun, watching everyone's reaction to Kimmie.

--Mom

Vacation and Another Friend

Last week we were on vacation. The first evening we stopped at a restaurant to eat. Kimmie was sitting at the end of the table where the waitress stood to take our order.

It wasn't long before Kimmie was hugging her. When Kimmie finally let go the waitress started telling us about her brother being autistic.

After she walked away, Daddy just looked at me and said, "That's another one, another life she touched."

I said, "Yes, Kimmie made another friend."

--Mom

Kimmie's Birthday Celebration

I'm very behind on my stories. It's already August and I haven't even written about Kimmie's birthday celebration.

Since Kimmie's sister was going to be gone to camp on Kimmie's birthday, we celebrated early. We told Kimmie when we were going to celebrate her birthday about a week before and boy was she ready.

Not normally a morning person, Kimmie was up at 6:20 am. We weren't celebrating until evening, so she had a long day of waiting. Fortunately she was pretty good about it. She signed repeatedly "Grandma Grandpa over." I reminded her that they weren't coming over until evening. She was amazingly patient.

It did start to get the best of her when she could see the presents, but she had to wait for us to all finish our cake and ice cream. We all knew that she'd been waiting a long time, so we gulped down the cake and ice cream to get to the important part -- presents.

She was very excited. One of her new loves, this summer, is Teen Titans. One present was Season One of Teen Titans. She has been carrying it around and sleeping with it ever since. (Well, when she can convince Daddy that she needs to take it to bed with her.) She doesn't ask to watch it very often, but she keeps the movie box close by. Sometimes she cries in the night and we have to find it for her.

She is enjoying her new books and toys.

It won't be long before she starts talking about Christmas.

--Mom

Shopping

Kimmie has a one track mind and lately it has been fixated on shopping. Unfortunately she is not happy to just go out and wander around looking. She thinks she needs to buy something every place she goes.

Usually she also has in her mind something that she wants to buy. Unfortunately it is often something that we cannot find in the stores.

As you might guess, shopping with Kimme usually involves a lot of screaming. Screaming because what she wants is not in the store. And screaming if we try to leave without her buying something.

It's a challenge.

--Mom

The Waiter

Tonight we went out to eat. Kimmie was determined to hug the young man who was our waiter. Every time he came to our table she would look up at him and hold her arms out. Dad would try to distract her and redirect her.

One time she was smiling at the waiter and I asked her if she was flirting. The waiter laughed and said, "that's ok" as he went about his work.

We managed to keep Kimmie off him until we were leaving. As we were leaving the waiter came past us to speak to us as we left. Kimmie's arms went up and he got his hug. Another waiter went past about that time and paused to say he must have done a good job. Our waiter laughed and commented that his customers love him. It was cute and sweet and funny.

Kimmie's sister was laughing as we finally made our way out of the restaurant. She observed that every time we go out to eat Kimmie hugs the waiter or waitress. I pointed out that most people who work as waiters and waitresses are outgoing, people persons, which is good because they are not too bothered by a little girl hugging on them.

Another life Kimmie touched.

--Mom

The Back Dilemma

Kimmie's back problems have become a bit of a dilemma. This week we went to the neurosurgeon so he could look at the MRI films and determine if her spinal cord and related problems would be ok through scoliosis surgery. He looked at the MRI but could not determine for sure whether her spinal cord had become reattached and tethered again. Since he could not determine this, he could not say it was ok to have the scoliosis surgery, nor could he say that she needed to have the tethered spinal cord release surgery again.

We continue to wait for the doctors to figure out what can be done about Kimmie's back. The neurosurgeon said he would get with the radiologist and spine/bone doctor to see if they could figure something out. Maybe the radiologist can see more than he can see? Maybe there is another test or a different angle that could be done to see the area more clearly?

The neurosurgeon's assistant is suppose to call us when they decide something.

Waiting is not my strength.

--Mom

New Friend

Kimmie made a new friend this week.

Kimmie was complaining about her mouth hurting. We couldn't exactly pinpoint a spot that looked like a problem, but Kimmie rarely admits to anything hurting. She's too afraid of going to the doctor or, worse yet, the dentist.

Her dentist is on vacation, so we were given the phone number of the on-call dentist. A new dentist, new staff . . . Dad decided he better meet us there to help hold her still. The dentist did real well with Kimberly. Dad held her arms out of the way while I kept her legs straight so she couldn't dig her feet in and leverage her whole body around. The assistant stood a couple feet away looking a little lost, not knowing what she should do.

When the dentist was finished looking, he received about eight hugs from Kimmie. The assistant received a really nice big hug, too.

When we were leaving, all the staff appeared to breath a sigh of relief, along with smiles and comments about how well it went. I couldn't help but think about how Kimmie had touched some new people that day. I think the dentist and the assistant will remember her and her hugs for a long time.

--Mom

July

July has arrived. An exciting month for Kimmie. Her birthday month.

Unfortunately it is also her siblings birthday month and Kimmie's birthday comes last. Celebrating her sister and brother's birthdays while waiting for hers to arrive is a very difficult thing.

Kimmie is not very good at being happy for others especially when it means that they are opening gifts and she is not.

--Mom