More Sleep Issues

January 2012 is about to come to a close and I am reminded that it was January 2011, one year ago, that Kimmie began again to be up nearly every night. She continues to have great difficulty sleeping through, and we may have compounded the problem.

Kimmie usually wakes up when her blankets become tangled around her. She is a blanket collector and has more than one that she insists on sleeping with. Certain ones she has to be covered up with and others she wads up into a ball and hugs. Sometimes in the night she changes her mind about which one she wants to be covered up with.

She would wake up in the night tangled up with her covers and start fussing. One of us would go in her room, straighten out her covers, tuck her in the way she likes and head back to bed. About the time we would get settled back in bed, she would be screaming again and throwing all her covers and animal friends on the floor. We would go back in her room, pick everything up and try again to get her blankets arranged just the way she likes.

This quickly turned into a yo-yo routine, where everytime we left her she would scream until we came back. To appease her, we (actually Dad) started laying down with her until she went back to sleep, then we would go back to bed. But, sometimes, we would fall asleep and end up in there all night.

When Kimmie is awake she does not like to be alone. She always wants someone nearby. She wants to be able to see us or hear us. But she had always slept ok by herself. Now, however, she has decided she likes having someone with her all night long.

Sleeping with Kimmie does not result in a full night's sleep. Even when I sleep with her she is usually up at least twice during the night wanting her covers rearranged. Sometimes I wake up to a little hand patting on me to make sure I'm still there. Sometimes, if she wakes up facing away from me, she fusses because she thinks she is alone.

On Saturdays, when she doesn't have to get up to go someplace, she will settle in about the time it starts to get light and sleep and sleep and sleep, all by herself, sometimes until 3:00 in the afternoon. Has she become afraid of the dark? Does she sleep better when she thinks it is morning?

At some point we are going to need to stop laying down with her to break this habit, but at the moment we are both so tired from a year of not sleeping well, that the thought of very little sleep for several nights in a row does not sound tolerable.

Maybe a fairly bright nightlight will help her think it is morning and that she needs to sleep before we come to get her up. . .

--Mom

Sleep . . . .

Well, for about 3 or 4 months now Kimmie has taken another spell of not sleeping through the night. She has slept through maybe twice in all that time.

We get up, find Brown Bear, rearrange her blankets, and anything else we can think of, but as soon as we go back to bed she is screaming again. If we don't get back in there fast enough, then she throws everything on the floor--blankets, pillows and Brown Bear.

It doesn't seem to be a scared scream, more like a mad scream.

It amazes me that she slept for three and a half years with the back brace on. She slept amazingly well in that awful brace and all night nearly every night. Oh, occasionally her blankets would get caught by the brace and we'd have to go in and free them. She'd go right back to sleep, and we'd go back to bed. But most of the time she slept through the night.

Now, no back brace, big queen size bed for her to roll around in, and she's up every night.

After her surgeries it took her quite a while to get to where she would sleep through the night, but she had been sleeping through for about 7 or 8 months when this last sleepless spell began.

I guess we'll never really figure this girl out. She's our puzzle.

Right now, the easiest thing to do is lay down with her, but that's become a problem in itself since she's getting too used to having someone sleeping with her.

--Mom

Sleep

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

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

--Mom

4-Months Post-Surgery

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

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

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

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

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

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

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

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

--Mom

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!

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 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

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

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

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

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

Petite

To say that Kimmie is petite is a bit of an understatement. People are always asking me how old she is. When I answer, 17, their mouths drop open and their eyes grow large. They have a hard time reconciling my answer to the little girl with the teddy bear clutched under her arm.

Kimmie wears clothes from the children's department, and probably always will. Her spine doctor has told us that her growth is complete.

We learned several years ago that Kimmie has a growth hormone deficiency. We chose not to treat the deficiency for several reasons. Our pediatrician did not recommend treatment. He did not see the point of putting her through all the shots. We were also concerned that stimulating growth would create additional spine problems, possibly worsening her scoleosis or increasing tension on her tethered spinal cord.

Kimmie being small has advantages. It is easier for us to take care of her, all of us, Mom, Dad, sister, brother, grandparents. It also allows Dad (who has spoiled her) to continue to carry her upstairs to bed after she has fallen asleep on the couch.

--Mom

Jesus Loves Me, This I Know

When Kimmie was three and four-years old, she attended a preschool program at our local elementary school. This was a preschool program that was open to any three or four-year old. The school district would also place developmentally delayed children in the class along with extra aides. Kimmie was one of those developmentally delayed children.

The first year, when Kimmie was three, she went just in the morning. The second year, at the teacher's recommendation, she went all day. Going all day gave Kimmie the opportunity for more social interaction with the other children.

Nap-time, however, was a bit of a problem. As I mentioned in an earlier post, Kimmie didn't sleep. She didn't take naps. It became a challenge for the teacher and signing aide to find ways to keep Kimmie occupied during nap-time.

One of the activities that they would sometimes do was review Kimmie's sign vocabulary. We kept a list of all the signs that Kimmie had learned to date. The aide would say the word and Kimmie would show her the sign. This was done to make sure Kimmie didn't lose any of her signing vocabulary.

One day Kimmie and the aide were sitting on Kimmie's nap mat reviewing the list of words/signs. On the next mat was a little girl who's family was of a religious group that did not allow for participation in holiday events or any reference to religious matters. Since this little girl was laying there listening and watching Kimmie and the aide, as the aide went down the list saying each word, she skipped over all the religious words like God, Jesus, Lord, Bible, pray, etc. The aide spoke each word and Kimmie responded with the sign.

After they had gone through the entire list of words, the aide looked at Kimmie. Kimmie looked at the aide and started signing. Very deliberately, without any prompting, she signed each of the words that the aide had skipped: God, Jesus, Lord, Bible, pray, Christ, church, amen . . . The aide, who was a young Christian lady, wasn't sure what to do at that point. Without saying a word she started signing "Jesus loves me, this I know. For the Bible tells me so. Little ones to Him belong. They are weak but He is strong. Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so."

When the aide finished signing the song, Kimmie launched herself into the aide's lap, wrapped her arms around the aide's neck and gave her an enormous hug--as if to say, "You know my Jesus, too!"

"Jesus loves me, this I know."

--Mom

Sleep, or the lack thereof

When Kimmie was little she did not sleep. We tried rocking; it wound her up. We tried just putting her to bed; she cried and screamed. We tried walking her; she fought it. It was nearly impossible to get her to sleep. She would never sleep for a nap, and bedtime was always a struggle.

Her favorite times to sleep were between 5 pm and 10 pm and between 5 am and noon. She would fall asleep in the middle of playing. Once we found her standing in front of a wooden rocking chair, sound asleep with her forehead resting on the seat of the chair. Once she fell asleep while reaching under a child's plastic picnic table. She was standing on the outside of the bench seat and reached over the seat and under the table for a toy. We found her asleep with her tummy on the seat of the picnic table and her head and feet dangling on either side. Many times we found her asleep in the middle of the floor where she had been playing. When the rattle of the toys would stop, we knew to go check on her, and that's when we would find her sound asleep.

--Mom