Thursday, May 29, 2008

Summer break

Today was the kids 1st day of their summer break! I now have me a big ol 2nd grader and I couldnt be more proud of my lil man, he did really good this year and we where blessed with such a wonderful teacher! He got chosen to be a weather man or news reporter for their morning school videoed news for the 2008-2009 school year and he is super excited about that and I cant wait to see it myself, since he tends to be on the major shy side so it ought to be interesting. But hey it might bring him out of his shell a little more.

As for Cami she is on the same schedule as Caleb and thats and all year round school so she will start back at her Preschool when he does and thats on July 21st. They get 6 weeks off. She will NOT be having any services this summer, they told me they only offer speech and it would be at another school and is only offered for 4 weeks. We will be gone on vacation for 2 of those weeks so I decided not to do it. SO I instead loaded myself up on the signs they really are wanting her to do and have them posted in the kitchen so I can work on them with her everyday. I pray she doesnt regress!
Oh speaking of signing it brings me to the big news of the week, Cami signed her 1st sentence to me 2 nights ago. We where sitting at the table eating supper and she signed to me "Mama, All Done" I about fell over and was overwhelmed with excitement for my girl. She is finally getting it and maybe she will start communicating to me this way instead of me trying to figure out her different whining. I'm so proud of my girl I know this is the start of many great things :)

Now to the sleeping med I have to say I was about to give up but once we upped it she has done wonderful. She usually falls asleep around 10ish then we put her in her bed and she actually sleeps there until 6:30am its been wonderful having the bed all to ourselves! I sometimes here her moving around but its not alot like it use to be and I dont think the tossing and turning is waking her up because if it did she would be in bed with us so I hope this too is a new beginning!
Yesterday in fact with her having such a great night sleep and a 2 hour nap she was in the best mood just happy as she could be and signing away. So maybe the sleep issues where holding her back!
Well thats about all I have right now! I hope everyone has a wonderful summer and enjoy the kids while they are out we have many camping trips planned out, boating, fishing, Aquarium trip and library activities which Caleb loves and just trying to keep them entertained for 6 weeks. So Happy Summer breaking :)


Wednesday, May 21, 2008

Just me being me.....

SO we have upped the med to 2mls now and she seems to be sleeping a little better but is still waking during the night not really sure how often though I've not been sleeping well so when I do sleep its a hard sleep! Why you may ask and that will lead me into the story of me just being me....a very paranoid person....LOL!


Well this will take us back till 2 Mondays ago. I of course was home alone that night with the kids it was Jason's night at the fire dept. And as I always say things always happen when he is away. Well here's the story our house alarm went off at 12:45 a.m. just 30 minutes after I fell asleep. Me of course very alarmed jumps out of the bed runs to the other end of the house grabs Caleb and the telephone and locks ourselves in Camis room! My heart is racing a hundred miles an hour just thinking that I probably just ran through where this person was to get to my kids but I didn't care my kids safety was 1st thing on my mind.

So the alarm continues going off for about 10 minutes then shuts off. I'm trying to remain quiet as possible then pick up the phone and try dialing out and you guessed it no dial tone panic has now overcome me but I'm not letting it show to Caleb....Cami is still sound asleep. So I think ok well the alarm people will call the police so just wait and stay calm. Well 30 minutes later there we still sit. Caleb at this point is wondering why I have woken him up and is ready to go back to bed, I say no because we are fixing to go out the window then I look up and see the baby monitor sitting there turned on.....Crud whoever may or may not be in the house just heard my idea so I go over and turn it off. Then open the window push out the screen grab Cami hand her to Caleb said don't move. I jump out the window which if I'm standing outside lets just say its over my head and I'm 5'9. Anyhow I say hand me Cami and I then grab him and off I run like a mad woman barefoot with two kids in my arms to our neighbors who is a cop. That's when the tears started to flow, I was scared outta my mind!
I don't know what they where thinking having someone beat on their door that early in the morning but they answer the door call the cops 2 minutes later there where 3 cars flying up at my house. They get out run around the house guns and flashlights drawn searching the outside. They say clear and call me over asked me if I was the one who came out the window I say yes. They asked me what happened I tell them. They asked me if I had a key to get back in.
Now that's when I wanted to say real smart like, "Yeah right here with my purse and cell phone". But I said no and that my husband was at work and they asked me how I was going to get back in? At that point that wasn't even a concern to me!!!! They said we can go get a key from your husband or you can go in back through the window. Where I then say "You can go in through the window but I'm not" so they do and search the inside everything was clear.
Ok as of now the whole neighborhood of dogs is going nuts, we have 4 next door to us and yes I do have a dog and where you might ask was she. Well she was in the back yard laying in her dog house, the cop shined his flashlight back there and she just looked up at him then layed back down...What a guard dog!!!
Well I couldn't get over the shakes so me and the kids stayed at my in laws for the remainder of the night which by now it was 3am. Ok so next morning we get home when Jason gets in from work and he calls the alarm company. They said they see where it went off and it was because our phone went out causing it to set off but they don't call anyone for that reason. Ok so what if someone cuts out lines???? Hello what the heck are we paying these people for? We have had this alarm company for 6 years now and they call if our electricity goes out from a storm so why not for the obvious? And what really got Jason is how they didn't even call his cell phone like they are suppose to when it goes off. Maybe had that have happened I wouldn't have had to go out the window because he would have been in route to us! Uggghhhhhh!

Well I kept the kids home that day because we where up all night so we slept most of the day away. Then I get up to take a bath and while removing my sweatshirt I noticed my arm was hurting I look down and I have the hugest bruise on my right arm I'm guessing from my leap out the window. Then I notice that I have small bruises all over the bottoms of my feet from running barefoot through the rocks. Guess my adrenaline was running that I didn't even notice I got hurt!

Super Mom....LOL....I didn't know I had it in me but when it comes to my kids anythings possible!

Thursday, May 15, 2008

We need sleep...

Ok so the med worked good for one night! I waited the week as instructed and raised the dose last night and it seemed to make her scream out even more. We could not touch her to console her if so she would just scream even more. I just dont think this med is going to work but I'm willing to give it a few more weeks to let her get adjusted to the new dosage. Its got her all messed up she has become more irritable in the afternoons and more attatched if thats even possible. We have noticed her doing a "chill" or "shiver" if you will since starting this med not sure if its something new she just likes to do or if its something else. So we are off to report to the Dr.s again I'm just at loss for words I feel like we are starting this all over again. One thing always leads into another.

We are fastly approaching the end of the school year and Caleb is thrilled! He cant wait for the summer break to begin. I'm in the process of looking into Camerans summer school plans. Not sure how it all works but I will update soon as I find out something. I'm sorry I've not posted in a while but I had an incident this week that I am still trying to get over I will post about that soon as well! Lets just say its another crazy thing added to my book of shame....LOL!

Appeal Denied

Well I got the papers in today on the bed regarding the appeal we filed and I just want to scream! It says its been viewed by a UHC Field Medical director and he made the following determination: The plan pays for Durable Medical Equipment(DME) that is:
*Ordered or provided by a Physician for outpatient use;
*Used for medical purposes;
*Not consumable or disposable;
*Not of use to a person in the absence of a sickness, Injury or disability;
*Durable enough to withstand repeated use; and
*Appropriate for use in the home.
This bed does not meet the above criteria in that it can be used by anyone. Therefore, no benefits are available under this plan.

What kind of crap is that? I am so fed up with insurance and cant wait for the July window to open up for a change to another company! Ugghhhhhh! If the insurance had all these standards they follow why in the world did they give the approval for something they had no intentions on paying? In what way is she not using it for its purpose? And the Dr. did write a script for it in which they cant even approve the bed if they dont have it. And it not being used for repeated use she sleeps in the thing every night! I am so confused???????

Wednesday, May 07, 2008

How shes doing?

Well seems she tolerated the med well and had a very peaceful sleep from 9:30-3:45, man that was great! She didn't do any of the jumping and flipping around when I got her down so that was nice. After 3:45 she was back to her normal flipping and flopping and crying out but man I was just excited that she got 6 hours of uninterrupted sleep. I hope it continues!!!! She did however have a foggy morning of this .....LOL, poor gal her body will adjust in a few days!

I got her report in the mail here's what it says.

Camerans test showed no evidence of obstructive sleep apnea(hypopnea index= 0.3, normal is less than 1). The total number of breathing disturbances per hour was elevated above the normal(2.1; normal is less than 1), but a majority of these events were "central" apnea's, which are normal, particularly during REM sleep. The minimum oxygen saturation was 85%, though this was an isolated reading. The number of awakenings or "arousals" throughout the night was 21 per hour (arousal index+21.3). She had a decreased amount of stage 3/4 or "deep" or "delta wave" sleep.

It says the next step is to start her on gabapentin(Neurontim), a seizure medication that we often use for patients with an increased number of "spontaneous" awakenings. It is used at a lower dose than if used to control seizures and seems to improve sleep quality and increase the amount of Stage 3/4 sleep. Start the medication at 50mg nightly. Increase the dose to 100mg nightly after one week if you feel Cameran is tolerating it and it seems to be helping. Follow up with progress.


Tuesday, May 06, 2008

Sleeping med

So the med they put her on is called Neurontin. I'm still researching looks to be used mainly for seizures and pain do to shingles or something like that. Does anybody have any experience with this drug for sleep issues? Not sure what to think guess we will see how it works!

Monday, May 05, 2008

Sleep Study Reults

The results are in and they are surprising! You have 5 stages of sleep Stage 1 and 2 is your light sleep, stage 3 and 4 your deep sleep and then REM(rapid eye movement sleep)this is the stage when most dreams occur.

So they say Cameran stays in the light sleep and then the other 30% of the time she is in the dream sleep. Said that she awoke 21-22 times per HOUR....That is crazy, is she getting any sleep? That's per hour not whole sleeping night!

They tested her for sleep apnea said that above 1 is abnormal and hers was 2.1 BUT that was only during her dream stage which does not worry them. Her EKG looked good and no seizures where found so that is great news!!!!

They are putting her on a seizure sleeping med I don't know the name if it yet but I will let you know as soon as I get it which will be today! They are starting her out on 50mg a night then will increase it in 2 weeks time to 100mg if needed. They will only keep her on this med for a few months just trying to get her use to a deep sleep and then they will pull her off of it in hopes that she remains getting the sleep she needs without the med. Said the only side effect to the med is sleepiness which is what she needs...well at night that is!

So that is it so glad to finally have that over with. Now I hope my baby girl can get some much needed sleep and mommy and daddy too!!!! I'll keep you all updated on how it goes.

Heres some more info on the sleeping stages:
Stages of Sleep
Usually sleepers pass through five stages: 1, 2, 3, 4 and REM (rapid eye movement) sleep. These stages progress cyclically from 1 through REM then begin again with stage 1. A complete sleep cycle takes an average of 90 to 110 minutes. The first sleep cycles each night have relatively short REM sleeps and long periods of deep sleep but later in the night, REM periods lengthen and deep sleep time decreases.

Stage 1 is light sleep where you drift in and out of sleep and can be awakened easily. In this stage, the eyes move slowly and muscle activity slows. During this stage, many people experience sudden muscle contractions preceded by a sensation of falling.

In stage 2, eye movement stops and brain waves become slower with only an occasional burst of rapid brain waves. When a person enters stage 3, extremely slow brain waves called delta waves are interspersed with smaller, faster waves. In stage 4, the brain produces delta waves almost exclusively. Stages 3 and 4 are referred to as deep sleep, and it is very difficult to wake someone from them. In deep sleep, there is no eye movement or muscle activity. This is when some children experience bedwetting, sleepwalking or night terrors.

In the REM period, breathing becomes more rapid, irregular and shallow, eyes jerk rapidly and limb muscles are temporarily paralyzed. Brain waves during this stage increase to levels experienced when a person is awake. Also, heart rate increases, blood pressure rises and the body loses some of the ability to regulate its temperature. This is the time when most dreams occur, and, if awoken during REM sleep, a person can remember the dreams. Most people experience three to five intervals of REM sleep each night.

Infants spend almost 50% of their time in REM sleep. Adults spend nearly half of sleep time in stage 2, about 20% in REM and the other 30% is divided between the other three stages. Older adults spend progressively less time in REM sleep.

As sleep research is still a relatively young field, scientists did not discover REM sleep until 1953 when new machines were developed to monitor brain activity. Before this discovery it was believed that most brain activity ceased during sleep. Since then, scientists have also disproved the idea that deprivation of REM sleep can lead to insanity and have found that lack of REM sleep can alleviate clinical depression although they do not know why. Recent theories link REM sleep to learning and memory.