Pictures

One of the projects I am working on now is scanning our pre-digital camera pictures into the computer. As I sort through our pictures and scan them, the one thing that has struck me and overwhelmed me is how thin Kimmie was for so very long.

I'm so glad she has filled out and looks healthy and strong today.

Kimmie was always thin as a child, but there was a spell where she gained some height but not really any weight.

There was also a year of school where her teacher would not let anyone help Kimmie with her lunch. Kimmie was stubborn and this made her mad. Every day she would throw her lunch on the floor because they would not help her. Since her food was gone, we did not realize she was not eating. We did not realize until later that this was happening.

That was a very difficult year for all of us as Kimmie spent a great deal of time screaming hysterically. I had not figured out yet that she screams for no apparent reason when she is hungry.

These two events occurred about the same time and as we watched Kimmie become thinner and thinner, we were very concerned. I talked to the doctor about it and he recommended that I talk to a nutricianist. He advised me to keep a food journal of everything Kimmie eats each day and the quantity.

I took Kimmie's food journal to the nutricianist and she calculated how many calories Kimmie consumed each day. She advised that Kimmie did not consume enough calories to support growth. Pretty scary! I asked her what she would recommend that I feed Kimmie so that she would be consuming more calories. Pediasure. We tried that. It has a smell that I associate with vitamins. Kimmie would not drink it. Peanut butter. We tried that. Kimmie cannot eat peanut butter. It is too thick and just gets stuck in her mouth. She does not have the oral motor dexterity required for thinning and moving peanut butter to the back of her mouth where she can swallow it.

We were able to supplement her milk with Carnation Instant Breakfast which added some extra calories. And we worked a lot harder at getting her to eat more and eat more frequently.

The fact that Kimmie has never been able to identify the feeling of hunger as hunger added to the problem as well.

Kimmie eats pretty good now and she has snacks in between, which helps her mood (unless her snack is OREOS!). We even sometimes have trouble buttoning Kimmie's jeans! Compared to those years she almost looks pudgy now. We laugh about that sometimes. It doesn't bother Kimmie. She wants to have a tummy like Pooh Bear!

--Mom

Ambulance

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

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

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

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

--Mom

Unexpected Adventure

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

Our shopping trip took an unexpected turn.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

--Mom

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

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

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

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

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

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

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

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

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 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

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

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

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