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

The Missing Turquoise Socks

It occurred to me a couple weeks ago that we had not seen the beloved turquoise socks for a while. I wondered what had become of them. I thought that one of the kids might have carried her clean laundry up with the socks tucked in between. I made a mental note to go through Kimmie's clothes looking for the socks.

It's a little thing, but something that brings her joy. So much of what makes her happy is simple little things.

Before I went through all her clothes we discovered a couple pair of socks behind her bed. And one was the turquise pair she loves so much.

The socks went into the laundry and as soon as they were clean again they went on her feet. She had been searching for them in her drawer off and on during the time they went missing.

--Mom

A Day at the Hospital

This past Monday Kimmie had an MRI of her spine, under sedation.

Poor little Kimmie.

We let her sleep until it was time to leave for the hospital. Then we wisked her out of bed, put clean clothes on her and hustled her out to the van. No food or drink allowed at that point.

She was hopeful, hopeful that we were going on vacation. . . . Nope.

As we drove closer to the hospital we passed the baseball field. She signed baseball game. . . . Nope.

By now she was getting a little worried. As we arrived at the hospital and pulled into the parking garage, the wimpering began along with lots of "no" signs.

She did pretty good in the waiting room. She just looked like she was fretting and worrying. Every time we had to get up and move to a different location the wimpering would start.

The wrist band they put on all hospital patients upsets her, too many memories. We always have them put it on her ankle (she can't reach it as easily to rip it off.)

Poor little Kimmie.

The nurse who came in to take her vitals was not very well received. One of the things Kimmie hates is the bandaid like thing they wrap around her index finger to monitor her oxygen level. It looks like a bandaid, one of her big phobias.

The blood pressure cuff sends her into hysterics. I don't think anyone has ever been able to get a reading until after she's sedated. Having that thing squeeze her arm gets her fighting so hard that nothing registers.

The nurse who was doing the sedation did receive a hug, but it was pitiful since Kimmie was sobbing.

Kimmie was a good girl about drinking the medicine they brought her, and once that was in her the IV was put in without any struggle.

When Kimmie woke up after the MRI, everything came off pretty quickly. It was either that or she was going to rip it all off. I think she was more worked up about the bandaid like oxygen thing than the IV.

As soon as we were in the car she started pulling at the ankle band, so we cut that off of her. She repeatedly checked her ankle to make sure it was gone and has spent most of the week telling us the blood pressure cuff is off . . . gone . . . No, No, No.

Now we wait, and wait, until July 8 when we will get the results.

--Mom

Kimmie's New Best Friend

Kimmie has a new best friend. He hasn't replaced Brown Bear, but he is going everywhere right along with Brown Bear.

Kimmie came home from school last Friday with a new Pooh Bear. She "earned" it at school. It's a beanie size Pooh and fits in the palm of her hand.

She has taken him to bed with her every night. She wants him every morning. She took him to horseback riding on Saturday and church on Sunday.

She has two others just like him that she has had for years, but they are part of the mass of stuffed animals, mostly bears, that she has.

This one is special because she earned him. She is proud of him.

--Mom

Kimmie's Back

Kimmie's back is a difficult thing to figure out.

There is the scoliosis, the tethered spinal cord and the mass of tissue at the base of her spine where it didn't finish forming.

Did the tethered spinal cord cause the scoliosis? If the scoliosis is fixed, will too much tension be put on the spinal cord. How are the tethering and the mass related.

It has become more of a dilemma now that the spine doctor has said the scoliosis needs to be fixed. Even the pediatrician says we are between a rock and a hard place. We'll soon be having more tests and additional appointments with the neurosurgeon and spine doctor to try to figure it all out.

Right now it seems like there is no good solution. Whatever course of action we take appears to have complications.

No wonder she always wants her back rubbed.

Pray for little Kimmie, her back, and the doctors.

--Mom

The Hearing

We had the hearing to establish guardianship for Kimmie as she turns 18. The hearing was Wednesday, May 20. It was interesting. Seemed like a whole lot of trouble for something as simple as our circumstances.

Kimmie was cute, cute, in a new blue dress and little white shoes. She understood enough to know it was all about her. She was excited about getting dressed up.

The judge was very nice. She smiled at us a lot.

I think it was the attorney for the state who first referred to us as "her loving family" and that seemed to be a theme that was repeated through the proceedings.

The jury was kinda funny. Six white women who all appeared to be retired and mostly in their 60s. Very grandmotherly looking group. I didn't expect any problems from them. I figured they would look at Kimmie and want to make sure she was taken care of. I thought they looked like a Sunday School class or quilting group on a day outing. They were all dressed casually and had lunch bags or an extra bag with stuff to do while they waited.

Kimmie sat next to her court appointed attorney. Nice enough man, just a bit arrogant. Kimmie thought he looked like the Blue Genie (Aladdin's Blue Genie). She hugged him when he came to our house. She hugged him in the hallway outside the courtroom. And she hugged him in the middle of the proceeding. That was the funniest. He looked a little embarrassed and didn't know quite what to do with her. And she hugged him when it was all over. I think the judge got a kick out of it. (This sweet little girl getting the best of this big arrogant man.)

It didn't take long. Like I said at the beginning, a lot of trouble for something that was basically very simple.

And yes, Brown Bear was there, her faithful friend who goes to all the important events with her.

--Mom

The Jar

Kimmie has a new toy, a small plastic jar.

Dad washed the jar and placed it on the kitchen island. He had plans to use it for something, but Kimmie found it and claimed it instead.

She picked it up, took the lid off, examined it, put the lid back on and placed it back on the counter. But a few minutes later she went back, picked it up and carried it to the table where she sat down, took the lid off and started carefully stuffing her shoe strings into the jar. After the strings are all inside she puts the lid back on and looks at all the pretty colors inside the jar. After a while she takes the lid off and shakes out the shoe strings.

When we go out, she used to wad up all the shoe strings and carry them in her little fist. Now she carries the shoe strings in her little jar.

Sometimes she gets frustrated when the shoe strings pop out and won't stay in as she is filling it, but for the most part it is a new entertainment for her, carefully, inch by inch, pushing the shoe string in the jar.

--Mom

Pockets

Kimmie has recently discovered pockets. Once a week at school she is taken shopping at Kroger. I send money and a list of 3 or 4 items for her to buy that week. They teach the kids "next dollar" strategy where everything is rounded to the next dollar, so I send bills that she can count out when paying. She always gets change back. One week the note in her agenda said that she insisted on putting the change in her pocket. Sure enough, that's where I found it.

A couple weeks later . . . I had taken the change out of her money pouch to put in a new list and the dollar bills for her to use that week. I left the change on the kitchen counter. That evening as I was taking her to the restroom I discovered she had a whole pocket full of change. Her sister told me that Kimmie found the coins on the counter and carefully picked them up one by one and jammed them in her pocket.

While we ate supper that evening she carefully pulled the coins from her pocket and sorted them. Quarters in one pile, dimes in another, nickels and pennies. There were more nickels than the others, so she picked up the nickels and put them back in her pocket. It was a Wednesday and we went on to church after eating. At church Kimmie carefully pulled out her four nickels to show Grandpa. You could tell that she was very proud of her pocket full of nickels.

Yesterday she stuffed her four beloved shoe strings in her pocket. It was a very full pocket. It made quite a wad.

--Mom

"Radio"

A few years ago a movie came out entitled Radio. At the time I heard a brief review of it and thought I'd like to see it. After it came out on DVD, I picked up a copy for our family.

You may have seen the movie, but if not, it is about a developmentally disabled, young black man who lives in a small southern town. His nickname is "Radio" because he always carries an old radio with him as he walks around town.

The high school football coach befriends this young man. Their relationship and how it changes them is what the movie is about. The impact this friendship has on the young man's life is powerful.

The heartbreaking part is when the young man's mother dies suddenly of a heart attack. She had told him that she would always be there for him, and then she was gone. . . .

I don't know how Kimmie will ever adjust to my being gone. She's very attached and I'm afraid she might walk around signing "where's Mommy, where's Mommy, where's Mommy" while screaming and crying. How to prepare her for the day when that might happen is another mystery. It's a concept I don't think she can truely grasp.

--Mom

Where's Sister

Kimmie has this thing about wanting our family to all be together. When we go to church, she wants our family to all sit together. If her sister sits with her friends in the youth group, then Kimmie gets worked up and will fuss and sign "Where's Sister."

Kimmie has gotten used to her Dad being somewhere else during the service and her brother going to a completely different church, but she is very attached to her sister and always wants her with us.

We have the same routine every week. We go to early church, then we go to Bible Study. In early church Kimmie, her sister and I always sit together. Sometimes Dad is there and sometimes he is somewhere else in the building. After early church, Kimmie and I head upstairs to our classes while her sister goes to the youth wing for her class. Out of the blue a few weeks ago, Kimmie started getting upset because her sister left us to go to her class. Kimmie proceeded to sign "Where's sister" and fuss all the way to her class.

Kimmie has been fussing about "where's sister" ever since. Kimmie has become very attached to her sister since her sister babysits her every afternoon.

--Mom

Court Appointed Visitors

As we prepare for the guardianship court hearing, we have a list of people who are to visit with us to assess the situation and get an idea of Kimmie's abilities.

So far the physician and the psychologist have been here. Kimmie has done quite well. She has giggled and smiled at both of them. They both asked her who the president is, and she told them both "Kimmie." She even held her guitar and did a little dance for the psychologist. He did an assessment with some pictures, and she cooperated well.

We will be glad when it is all over, but so far it hasn't been too bad.

--Mom

The Triple Hug

Before Kimmie began with the "Double Hug" she was doing the "Triple Hug."

With the Triple Hug, Kimmie gives a big squeeze, releases and then starts to back away. About the time the person thinks it's over, Kimmie decides she needs to hug them again and grabs them and squeezes again. Once she's done this, we know there is going to be another hug, because she always has to get three squeezes in.

--Mom

Update from Dad: Sometimes she has a triple-double. The night before last she was excited to finish supper and get back to her movie. I got a triple-double from that, three squeezes each around my chest and my neck.

Dad

Double Hug

Kimmie has had lots of different "hugs" over the years. Right now she has a hug I call the "Double Hug". When she decides she is going to hug someone, first she hugs them around the chest, then she has to hug them around the neck. Thus, the "Double Hug".

When you receive a "Double Hug" you really feel loved and special. The hug around the neck is usually the topping on the cake. Mmmm, mmmm, it's a really good hug.

--Mom

Tug-o-War

This is a follow-up to the earlier post about Kimmie and her socks, especially the turquoise socks that she loves so much.

The turquoise socks never seem to make it back into Kimmie's sock drawer. Every time they are washed, she spots them during the folding. She snatches them up and immediately puts them on.

This last time, her sister was folding the laundry and saw Kimmie reaching for the socks. Kimmie and her sister both grabbed the socks at the same time and a tug-o-war began. Kimmie is so strong that she was able to hold her own. (She may be small, but she knows how to use every ounce of her weight to her advantage--you should see how many people it takes to hold her down at the dentist's office.) Her sister could not easily get the socks away from her. Eventually Kimmie won (or, rather, her sister let her have them), and she promptly put on the socks.

I suppose I should buy her some more turquoise socks. However, knowing Kimberly the new socks wouldn't feel exactly the same as the old ones, so she probably wouldn't have anything to do with them. At least that's the way it is with the shoe strings. She chooses one string from the pack and the other one is discarded. She can always tell the difference between the two strings and will never play with the discarded one, at least not until the favored one is lost or frayed.

Funny little girl.

--Mom

May 20, 2009

May 20, 2009, is an important date on our calendar. We are scheduled in disability court that day for Kimmie's guardianship hearing. Between now and then we have to meet with a court appointed physician, social worker, psychologist, and attorney who will represent Kimmie.

We are not expecting any problems, but the whole thing is a little disconcerting.

We've been Mom and Dad for 18 years, feeding, dressing, bathing, teaching and loving Kimmie. Now all these strangers will make important assessments and decisions about our little Kimmie. They will spend just a few minutes with Kimmie, prepare their reports and submit them to the court. Then we will appear before the judge and jury who have never laid eyes on Kimmie, for their review and decision.

It's a little disturbing.

--Mom

Aladdin

Disney's Aladdin is by and far Kimmie's favorite movie and favorite cartoon character. She has gone through many Aladdin books. We have had to replace them because some of the pages became shredded and some of the faces were rubbed off from her pointing at them.

She loves the movie and has watched it over and over and over again. We had to buy a second copy because she wore the first one out. The rest of the family became tired of the movie and started hiding it so we wouldn't have to watch it.

Kimberly has watched it so many times that she is actually rather bored by it. She continues to ask to watch it, but, when allowed to, she ends up crying and screaming and sometimes takes the disk out and throws it. Because of this, we don't allow her to watch the movie any more. She has her books and her stuffed Aladdin toys, so she can pretend and act out the parts she likes.

Grandma's house used to be her Aladdin haven. She knew that they would let her watch it all day long, over and over again. But once the tantrums started happening during the movie, they hid their copy, too.

Now Kimmie goes over there and looks for the Aladdin movie. She studies and studies their movie cupboard hoping to find it. Every room she goes in she stands and looks and looks for her movie. Is it on top of the refridgerator? the microwave? Is it on the organ? in the bookcase?

Poor little Kimmie. Actually, we sometimes let her hold the movie box and that often makes her happy, just holding it and knowing where it's at, even though we won't let her watch it.

--Mom

Family Picture

I was looking at the newspaper a few days ago and noticed a small article about a family that had children the same age as our two older children. These children went to the same elementary school as our children. I read the article and looked at the family picture.

As I looked at the picture and read the part about the 17-year-old daughter, who will be graduating this year and going off to college in the fall, I thought about our 17-year-old daughter. I tried to envision what our family picture would look like with a "normal" Kimmie, a Kimmie who would be preparing to graduate from high school and enter college.

This didn't last long. The "normal" Kimmie felt like a stranger in our family and the sense that someone was missing was overwhelming.

Not only did this substitution change the outward appearance of our family, but it changed each member of our family. It felt like we were all different people without our Kimmie.

We'll keep our little Kimmie, just the way she is. She has helped shape each of us into who we are and we wouldn't be the same without her.

--Mom

P.S. We don't actually have too many family pictures. They all come out a little funny looking. Either Kimmie is making faces or some or all of us are looking at Kimmie to see if she is smiling and looking at the camera, which, of course, means we are not looking at the camera.

--Mom

Hmmmmm

Kimmie has always been our quiet child. Being non-verbal, she has not typically made much noise.

Lately, however, she has had her "hmmmmmmmm" going. We sometimes say she has her "motor" running. It is a noise she makes in her throat. Sometimes she can get quite loud.

She can be watching a movie and start "hmmmmmmm"ing. She will get louder and louder as she gets excited about the movie. The competing noise from the movie and the noise of her "hmmmm"ing can become overwhelming.

We often ask her to be quiet and she will shake her head "yes." But when she goes back to what she was doing the "hmmmmm"ing starts up again. It's like she doesn't know what makes it or how to turn it off.

One of the places where she will make this noise is church. No matter how many times I ask her to be quiet, and she agrees, she just can't seem to stop.

She sounds happy when she makes this noise.

What to do, what to do, hmmmm.

--Mom

Tantrums and Sweet Moments

Kimmie's teacher is currently on maternity leave, so Kimmie has a new, long-term substitute teacher. Amazingly enough, the first couple of weeks Kimmie was really good. She came home almost every day with a note that said "Great day." We were like, "WOW!"

It didn't last, though. By the third week the tantrums and grumpies had set in. I offered suggestions to the new teacher and apologized for Kimmie being so much trouble. Her new teacher responded with this comment:

". . . She is a very sweet girl and for every tantrum she throws she has just as many sweet moments. She does a good job balancing them out."

I love the way she describes Kimmie. We always think of Kimmie as being sweet, but sometimes I wonder why when she can be so grumpy and throw hugh tantrums. This new teacher described Kimmie perfectly. It's the sweet moments that we remember.

She's our sweet little Kimmie girl.

--Mom

Soap Dispenser

Our church has recently renovated most of the restrooms in the building. Lots of automation was included in the renovations. All the "hands-free", "no-need-to-touch" stuff including automatic water sensors, automatic soap dispensers and automatic paper towel dispensers.

Taking Kimmie to the restroom has become an adventure! This past Sunday we had extra events going on at church and we made three adventurous trips to the restroom.

Kimmie's favorite accessory is the soap dispenser. She loves to stick her hand under it and be rewarded with a dallop of soapy foam. The sinks are very close to the soap dispensers and it is difficult to move her to the paper towel dispenser without her sticking her hand back under the soap dispenser. So we usually end up washing our hands at least twice before I'm able to maneuver her past the soap to the paper towels and then out the door.

Sometimes I'm able to move her away from the sink quick enough that she doesn't end up with more soap on her hands, but she is usually fast enough to trigger the dispenser. The soap lands on the counter and then I end up trying to clean the counter while keeping Kimmie far enough away that she cannot trigger the soap dispenser again and have us starting this whole process over again.

We have so much fun!

--Mom

Beloved Brown Bear

I think I've written about Brown Bear before. He is a part of our family, usually attached to Kimmie's right arm. He is a worn and balding teddy bear. He is well loved. He sleeps with Kimmie every night. He goes to the doctor and to the hospital with Kimmie. He has been through surgery with her. She carries him to church, to the store, anyplace we will let her take him. We draw the line at school, too much risk of losing him.

I took him to work with me not long ago. I was going to be picking Kimmie up at school and taking her to the dentist. I knew she would want him at the dentist. I felt guilty leaving him in the car in the cold. He looked rather forlorn laying in the back seat all alone.

We often worry about what happens when Brown Bear falls apart. How will Kimmie deal with it.

Last week we were hopeful that she would attach herself to a new bear. She had snatched a brown bear from her sister's room and played with it the rest of the evening. We were hopeful she would take to this new bear, but we were skeptical.

For some bizarre reason Dad got the notion last week that if Brown Bear disappeared for a while, Kimmie would forget about him. Now Kimmie's sister and I looked at Dad like he had grown an extra head, but he persisted.

After Kimmie went to sleep on the couch that night, Dad carried her up to bed and intentionally left Brown Bear in the family room, taking her sister's bear up to bed with Kimmie instead.

A few hours later we were roused from sleep by Kimmie crying. She wanted Brown Bear, so Dad retrieved him from the family room. The next morning, he commented that she only lasted three hours without Brown Bear.

Since then he has made sure Brown Bear goes to bed with Kimmie.

--Mom

Socks

Kimmie has developed an obsession about socks.

Dad tends to always grab white socks at 5:45 am when we are getting Kimmie ready for her school bus, and white socks can get rather boring. Kimmie tends to pick colored socks, not necessarily the color that matches her clothes.

First she was stuck on the pastel blue socks. One weekend she wore these socks for 3 days. Fortunately her feet don't sweat and she didn't have her shoes on much of that time. We did put clean socks on her, but she would hunt for the blue socks and change from the clean socks to her favorite blue ones.

More recently she has found the bolder colors, hot pink, turquoise, black . . . One evening she picked out turquoise socks to wear with lime green pajamas. Her sister came home and told her that her socks didn't match her clothes. Kimmie didn't care.

She has started going to sleep with her socks on, but sometime in the night she usually takes them off. We find these little heaps of socks next to her bed. If we don't get them picked up and in the laundry right away, she grabs them and puts them back on. We have started picking them up while she is asleep and putting them in the laundry so she won't be able to put them back on.

This past Sunday, after we came home from church, she told me she was going upstairs to get some socks. I wondered if she would put the socks on over her tights or if she would take her tights off before putting the socks on. I went upstairs a few minutes later to see what she was doing. She had forgotten about the socks and was playing. When I came in her room she remembered the socks and started hunting for the ones she had worn to bed the night before, the ones we had already put in the laundry. She knew they should be in or around her bed, so she started taking her bedding apart looking for the socks. She was not happy when I told her that the turquoise socks were in the laundry. Eventually she chose to wear black socks, black socks with lavendar clothes.

She protests loudly whenever we take her socks off, you know, for her bath, or to put clean ones on, or to put on ones that match her clothes. . . . She's a mess!

--Mom

New Shoes

Kimmie has new shoes. They are really cute. Everyone agrees that they are cute. Everyone, but Kimmie. She is having more trouble adjusting to these than she usually has. We're not sure why. She says they hurt her feet but we can't feel anything that would hurt.

At first we did not send her to school in them. We had her wear them on a Saturday when we were doing some shopping, so she could get used to them and break them in a bit. We even went to the mall. She walked pretty far in the mall and then all the way back to the car. She rode in a cart at another store and left her shoes on. She walked around another store and didn't complain.

On Monday we decided the shoes were ready to be worn to school. Evidentally, NOT. They didn't say it was a big problem at school, just that she took her shoes off a lot. But on the bus, that was another story. They said she took her shoes off and threw them at others on the bus.

Hummm. We decided she would wear them at home until she was doing better with them and sent her to school on Tuesday in her old shoes. The bus driver and aide looked her over when she got on the bus and said they were really glad she was not wearing the new shoes.

Wednesday evening we were going to church, so I put the new shoes on her. She walked around the house fine, getting together the things she wanted to take with her. She went out to the car and off we went to church. A short time later she had her shoes off and proceeded to scream at them and us . . . all the way to church. Her sister took the shoes away from Kimmie and we told her she didn't have to wear them until we arrived at church. This didn't help. She continued to scream. She wasn't happy with the shoes on and she wasn't happy with them off.

When we arrived at church, she put the shoes on and walked into the church and was fine. When we sat down for the Bible study, she took her shoes off. I immediately moved them out of the way and told her she could go without them while we were there. Fortunately she was quiet until after the study ended. Once it was over, she wanted her shoes and sat there and screamed at them.

She always fusses when she gets new shoes, but usually after one wearing, she is fine with the shoes. I'm not sure if this pair will ever get back on her feet. Right now they are sitting along the wall in the family room where we can admire how cute they are, even though she won't wear them.

--Mom

Shoe Shopping

Shoe shopping is one of those experiences that ranks right up there with doctor and dentist appointments. Kimmie's phobia of new shoes is almost as bad as her phobia of bandaids. She fights both with all her might. It makes shoe shopping lots of fun!

It all started years ago when Kimmie was just a baby. At 9-months, she wasn't rolling or sitting or crawling. At the doctor's recommendation we took her for physical therapy. As the physical therapist worked with her through rolling and creeping and crawling and pulling up, it became apparent that Kimmie's feet rolled in. The physical therapist recommended an orthopedic doctor, and he ordered plastic inserts to be made to keep her feet from rolling in.

The ordeal of having these plastic inserts made was the beginning of Kimmie's phobia. Fortunately, once the plastic inserts were in her shoes, where she couldn't see them she didn't think about it much, but if we had to take the inserts out for any reason . . . HYSTERIA! When we went shoe shopping we would have to take the inserts out to see if they fit in the new shoes and then try the new shoes on Kimmie. Trying to hold her leg still enough to get the shoe on was a challenge, and we are talking about a very tiny 2-year-old.

Kimmie has not worn the inserts since she was about 4 or 5, but shoe shopping has not gotten any easier. She fights putting any new shoe on. It continues to be a challenge to get a new shoe on her foot, and to keep her from instantly kicking it off.

--Mom

Child Care Part 2: Kimmie's Calling

As I have searched for child care for Kimmie, I often find myself griping to Dad about how I hate leaving her with strangers. I never know if they are going to fall in love with her or if they are going to consider her to be a nuisance and problem. Will they help her with lunch? Will they help her use the restroom? Which leads me to a whole other area of concern related to lack of privacy with a new set of caregivers tending to Kimmie.

The last time I was fuming about this, Dad turned to me and pointed out that it was also a new set of people who will be touched by Kimmie. I had to stop and think about this. I had not ever given any thought to what God's purpose and calling for her life might be. I had not thought about God having a purpose or calling for her life outside of her impact on us.

It's something to remember. Either through a care program or through taking her out to other activities, it's important that she has the opportunity to share her love, her hugs, her laughter and her joy with people, whether they be family, friends or strangers.

--Mom

Child Care Part 1: The Juggling Act

Child care is an ongoing issue that we have.

For years when Kimmie was in after-school care or summer programs we worried about whether she was being taken care of ok. Are they helping her eat? Are they taking her to the restroom regularly? Is she safe?

Then, a year and a half ago, we lost our child care. At 16 years of age Kimmie was no longer allowed to attend child care with elementary and middle school aged children. It didn't matter that Kimmie is physically about the size of a 9 year old, or that she plays about like a 5 year old, she was 16 and could no longer attend the child care.

Since that time our family has juggled Kimmie's care. Her sister is the primary after-school and summer babysitter. When she is unavailable, brother and grandparents sometimes step in to help or Dad or I sometimes take off work to be with Kimmie.

We tried a couple other options last summer, a day program for adults with developmental disabilities and a summer program for teens with disabilities. Kimmie required too much supervision for the adult program and they cancelled her. The teen program was a little scary since some of the youth were combative. One attacked me when I was picking Kimmie up.

Kimmie likes going to care programs because she likes playing with different toys and it helps break things up so she doesn't get bored.

It's an ongoing challenge that we have to make sure Kimmie always has someone with her and is taken care of properly.

--Mom

Such a little stinker

I had a meeting with Kimmie's teacher and speech therapist this week. Her teacher was telling me a Kimmie story that I just have to share. She is such a little stinker.

In our schools there is a lot of testing that the state requires in an attempt to gauge how well the schools are doing at teaching the kids. They even require the special education students to be tested and graded. Kimmie's teacher gave her a series of these tests recently. The teacher would read the question to Kimmie and Kimmie would choose her multiple choice answer. When taking the first couple of tests Kimmie picked a multiple choice letter, like"b" or "c", and she put this as her answer for every question.

When Kimmie's teacher was giving her the next test, she said to Kimmie something like, "You know that the answer to every question is not going to be "c", so lets mix up the answers this time."

According to Kimmie's teacher, Kimmie guessed and did mix up her answers. When the test was graded, Kimmie scored 100%.

I have shared this story with the rest of the family and we have to wonder if she guessed or if she knew the correct answers. It seems improbable that she could answer all the questions correctly guessing. We know that she has an exceptional memory and receptively knows and understands a great deal. Her disabilities are mostly in expressive areas like communication, cooperation and behavior.

I don't know what the test was about, but I tend to think she knew the correct answers.

She is such a little stinker, and oh, so smart.

--Mom

Sing along

Even though Kimmie is non-verbal, she likes singing. Well, she likes some songs.

She usually asks me to sing from Aladdin - the one where he is marching into Agrabah with the magical troupe to impress Princess Jasmine.

At church, she likes some of the songs -- she will even sign part of the lyrics that she knows.

But, her one solo is from The Jungle Book. "We're your friend" features Mowgli, the Vultures -- and the fearsome tiger, Sher Khan. Khan is a basso profundo, but for reasons known only to her, Kimmie has adopted the closing line of his low bass "that's what friends are for" for her only predictable sing along.

For the uninitiated, it sounds more like a big yawn than singing.

I once read that it was better to sing off-key but with great enthusiasm, than be technically perfect with no soul. She would never pass an Amreican Idol audition, but there's no question about her intensity and her joy.

--Dad

Oreos

Oreos are Kimmie's favorite food. Unfortunately about an hour after eating them she has a sugar crash accompanied by a screaming temper tantrum, especially if she has the oreos as a snack on a mostly empty stomach. I prefer that she have them at the end of a meal to try to avoid the hysteria.

Kimmie also has an exceptional memory.

Yesterday Kimmie wanted a snack and was intently rummaging in the cupboard looking for the cookies. I was busy with something so her sister helped her find the package. Kimmie then opened another cupboard to get out the bowl we put her snacks in. Her sister placed three cookies in the bowl and Kimmie sat down to snack and color. Surprisingly, Kimmie got up and left the table leaving a cookie in her bowl. After a few minutes her sister asked if she could eat the remaining cookie. I responded, "sure, Kimmie went off and left it."

It wasn't long before Kimmie was back looking for the last cookie that she knew she had left in the bowl. I told her sister that Kimmie caught her. We replaced the cookie and all was well after that.

She's a funny girl.

--Mom

Sleeping beauty

In an earlier post I wrote about "Sleep, or the lack thereof" which talked about how Kimmie did not sleep much as a baby. Her tendency to not sleep lasted until she was six years old. When Kimmie was six the doctors decided that she was ADHD and we needed to get this under control so she could benefit more from school.

Different medications were tried including one that is a blood pressure medication that has been around a very long time. The idea was that this would chill her out a bit, slow her down. The first day I gave her the medicine she was sound asleep within an hour. Since I had not been told this might make her sleep, I called the doctor's office to make sure she was ok. They assured me this often happened with the medication. I wondered how they expected her to benefit from school when she was asleep. We were advised to switch to giving her the medication in the evening, instead of the morning.

I told the doctor later that I did not know if this was helping at all with the ADHD, but for the first time in her life she was going to sleep at night and regularly sleeping through the night. I figured that if she was sleeping better, surely that would help her learn better at school. The doctor agreed.

Kimmie continues to be a good sleeper. As she moved into her teenage years she became even better and often sleeps 15-18 hours straight on the weekends. She has to get up so early for school, that by the weekend her little body needs to recover.

When Kimmie started sleeping better, Dad and I felt like new people as well. Over 6 years of being up night after night for hours on end was wearing us out.

We call her "sleeping beauty" now because, left on her own, she will sleep and sleep and sleep. She looks so peaceful when she is sleeping.

--Mom

January 23

Today is January 23, 2009. One year ago today Kimmie went to the spine doctor and was released from wearing the back brace. It has been a wonderful year watching Kimmie move and play more comfortably.

Last night I got Kimmie to sit on my lap so I could talk to her about it. I told her that tomorrow would be January 23 and that last year on January 23 she went to see the doctor, and he said she didn't have to wear the brace any more. Kimmie told me that it was on a Wednesday. She has a wonderful memory. It was on a Wednesday.

Kimmie wore the back brace for scoleosis for a little more than 3 1/2 years. We hated that brace. At first it was hard to put it on her every day. But, as time went by, we became used to it and our desire to avoid surgery became stronger, so she wore it every day, 24 hours a day.

Yes, she slept in the brace. That was always the question people asked us, "does she have to sleep in the brace?" or "She doesn't have to sleep in that, does she?"

She did not wear it when she bathed, swam or went horseback riding. We would usually let her go without it on Christmas.

One year later she has had two checks of her back and so far no surgery has been recommended. Next month, on the 23rd, she has her next check.

Today I will hug Kimmie and enjoy the feel of my arms wrapping around her back. It's so much better than wrapping around plastic and metal.

--Mom

Salt and Pepper

On Wednesday evenings we go to church. Kimmie's sister goes off to the youth activities while Kimmie and I join the pastor's Bible study in the fellowship hall. Dad is usually around getting microphones and slides and video clips ready for the study. He usually goes straight to church from work.

The church serves a meal before the Bible study, but the girls and I eat at home since they don't always like the food that is served.

When the Bible study is over we have to wait a little while for Kimmie's sister to appear since the youth activities go a little longer than the adult Bible studies. While we are waiting the people who clean up usually come in and start cleaning up the fellowship hall. They pick up the salt and pepper shakers, remove the tableclothes, stack the chairs and fold up the tables.

One evening Kimmie started playing with the salt and pepper shakers so we encouraged her to help gather them. She really took to this. Most weeks now she helps gather the salt and pepper shakers, running all over the room snatching them from the tables. I run around behind her encouraging her to hold them upright, although the floor gets its share of salt and pepper.

At first I wasn't sure what the cleaning crew thought of this. They even picked them up in different ways a couple weeks, ways that did not allow Kimmie to help. But now they place a tray out for Kimmie to put the shakers on while they take the tableclothes off. They carefully remove the tableclothes leaving the shakers on the edge of each table so she can reach them. And everyone comments on what a big helper Kimmie is.

--Mom

The Easy Child

I'm sure that many people look at Kimmie and see the extra work involved. Helping her eat, helping her dress, helping her bath, helping her in and out of the car, helping her up and down stairs . . . And I will admit that, over the years, she has been a lot of work, but as she has gotten older, she has become easier. (Or maybe we are just more accepting of the daily routine.)

Whatever the case may be, Kimmie has become our easy child. She is easy because we just take care of her. It's like taking care of any other preschool child, except she's 17.

But, you see, with the other kids there's so much more to do. They are teenagers, high school and college age. Over the years there's so much to teach them: to be kind, trustworthy, responsible, honest, dependable, competent, capable, independent . . . Then there are the issues of teaching them to drive, hoping they make good choices in friends, encouraging them to stay drug and alcohol free . . . And the list goes on, along with concerns about who are they with, are they driving safely, are they making good choices . . .

Maybe you can see, too, that Kimmie is looking easier and easier.

--Mom

Mornings

Poor Kimmie. She is not a morning person, never has been.

This year her bus comes at 6:10 each morning. We try to let her sleep as long as possible, so we get her up about 5:45-5:50.

She's hustled out of bed while her breakfast is heating in the microwave. Her clothes are already laid out. She staggers around with her hair in her face and her eyes more closed than open. Brown Bear securely clutched in the crook of her arm.

She is quickly stuffed in her clothes. Breakfast is shoveled hurriedly into her mouth. Hair brushed. Teeth brushed. Glasses washed and on. Coat.

Then she boards her bus. I'm not always sure she is fully awake when she gets on the bus, and we think she often goes back to sleep on the bus.

No wonder she's grouchy in the mornings.

--Mom

Pretend Worlds

Kimmie likes to pretend. She has a lot of "places" she visits when her mind wanders off.

Sometimes she is on a rocket ship to Mars.

Sometimes she is a butterfly sleeping in a tree in a cocoon.

Sometimes she is Aladdin walking in the lion's mouth and setting the Blue Genie free.

Sometimes she is flying on Eeyore's back.

Sometimes she is on a picnic with Winnie the Pooh having honey from a honey pot.

Sometimes she is riding on a dinosaur's back.

Sometimes she is Superman, or Batman, or Danny Phantom.

Sometimes she gets a far away look in her eyes and a sweet smile on her face and we wonder where she's wandered off to. How many other places does she visit that are locked up in her little head?

--Mom

Hallway of Doom

This week Kimmie had a bit of trauma. A trip to the pediatrician for a check-up.

She started whimpering as soon as she heard where we were going, which I didn't tell her until time to go. We were able to get her distracted. Every now and then she would start to cry, again, and I would try to distract her.

I call the hallway to the pediatrician's office "the hallway of doom", because when we get off the elevator, we turn down this long hallway and straight at the end is the door to his office. All the while we are walking down the hallway we are looking at his office door, getting closer and closer.

Now, don't get me wrong, we have a wonderful pediatrician, but he comes with shots and other fun stuff.

At Kimmie's appointment this week she had a blood test done by finger prick and a booster shot. It only took two nurses and Mom! And, of course, there was much sobbing and hugging and she wanted everyone to kiss her finger, which did NOT have a bandaid on it. (See a previous post about bandaids if you don't get this comment.)

--Mom

Doctors and Nurses

Kimmie has a love/hate relationship with her doctors and nurses. She loves them, but she hates to go visit them. Just the thought of going to the doctor or dentist can start her sobbing. Years later she can still tell us the day of the week, the month, and which body part was hurt. For instance, the last time she had blood drawn from her arm was about 4 years ago, in August. She still talks about it and tells us that it was in August. But she always hugs the doctors and nurses, often while sobbing.

There is only one doctor that she likes to go to. That's the spine doctor. She knows he doesn't poke at her. They weigh her, take an xray of her back, the doctor comes in, looks at the xray and then we talk. No hands on with Kimmie except for the hugging part. It's the only office where, when they call her name, she leaps up and runs to them with her arms outstretched for a hug.

The poor pediatrician, whose been with her her whole life, brings on one of the biggest responses from Kimmie. She sobs at the thought of going there. Too many memories of shots and finger pricks for blood tests.

The dentist ranks right up there with the pediatrician. Too much poking and proding.

The doctors are pretty good at keeping their professional manner, but the nurses often melt over Kimmie and her sobbing. She can be quite pitiful.

--Mom

Toes

When Kimmie was a baby she slept best when her head was covered up. Today, she still sleeps mostly with her head under the covers.

When she was a baby and we would check on her while she was sleeping, we would always find her head covered up and her little pink toes sticking out. We would carefully rearrange the covers so her toes were covered up. We didn't want them getting cold. Then we would turn to leave the room. Before we could reach the door of her room we would hear a rustling sound. Turning to look back at her we would find that she had kicked her feet and her little toes were once again sticking out from under the covers.

Now she likes her toes covered up as well as her head. She mostly burrows down under the covers making it look like she isn't even there, it's just a pile of blankets.

--Mom