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