My ballerina princess

This morning before school

Karli: Mommy, owie foot. Kiss it. {sticks foot in my face}

Me: {kisses said foot}

Karli: Daddy, kiss it. {sticks foot in Randon’s face}

Randon: {kisses said foot}

Karli: All better!

Ok, this is getting frustrating

When I type these posts, I put them into paragraphs so they're easier to read. Then when I hit "Publish Post" it comes out as one big paragraph. In the preview screen it looks correct. All you blog experts, what am I doing wrong?

If the apnea itself isn't enough......

Now I'm pretty sure that she's sleepwalking. She very well could have been doing this for a while now and we just didn't know. It's hard to say. Background: She sleeps in a toddler bed at home in her own room and we have a baby gate at the door. When we got the gate sleepwalking wasn't on our minds, it was a safety thing to make sure that if she did get up to play in the middle of the night and we didn't hear her she would at least be contained in her room. We always hear her though because I still have her monitor on my bedside table. On many occasions I hear her get up and go get her water cup (we leave a sippy cup of water on her bookshelf) and get back in bed. Many weekends we go visit either my parents or my in-laws and at either house she's in her own little bed in the same room as us. My parents have a gate, but my in-laws don't.



Our first hint that she's sleepwalking was a couple of weekends ago at my in-laws. I stayed at home and Randon & Karli went to go visit them. My MIL was sleeping in the spare room with Karli and Randon was on the couch in the living room. He said in the middle of the night he saw her walk in there like she was looking for him or me and was confused. He picked her up and she went limp again like she is when she's sleeping and he put her right back in bed. Then this past weekend Karli stayed with them for the weekend and pretty much the same thing happened. My MIL said that she heard Karli get up and before she could get to her Karli was already down the hall and in the kitchen. My MIL picked her up, and same thing as before, Karli was limp again and sleeping.



When we went to the sleep clinic back in December and they were going over Karli's history, sleepwalking was one of the things she asked about. Of course that was before both of these times happened, so we told her that Karli didn't do that. And I know I'm not an expert, but this sure does sound like sleepwalking to me. Needless to say now that this has happened twice, we will be getting a baby gate for their house so that next time at least she's contained in the bedroom. Now I'm even more worried about her apnea and am praying even harder every day that we can get her on the CPAP soon.

Sleep clinic appointment

Karli had her appointment yesterday with the sleep clinic. We had all hoped that at this appointment we would go over her compliance and how many hours she was wearing the Cpap each night. Well, as you know it's just not happening at all right now so instead we talked about how we could help her be more comfortable with it. We're waiting on a call to schedule the de-sensitization therapy and got a phone number for a behavior specialist in case the therapy doesn't work. We also got the results of her blood work we had drawn last week and her ferritin (the long term iron storage) levels are still rising which is a good thing. Low ferritin levels have been found to contribute to "restless leg". The sleep clinic wants her ferritin at 50 (I don't remember at the moment what the unit of measurement is) and hers is currently at 26. This is a huge improvement considering last year at this time it was at 4. We tried staight iron supplements and she only took those for 2 days before she figured out how nasty the stuff was. Can't say I blame her, yuck! So, we've just been giving her a children's multivitamin with as much iron in it as I could find. That's been working for several months now, so we'll just keep at it. We're supposed to check the ferritin again every three months so as long as it keeps rising, we'll be doing good.

The worst part of the day was when Piglet, or as Karli says, "Pliget" went missing. :( We're all so sad. As soon as we figured out Piglet was gone, I ran back into the hospital and retraced our steps, but no luck. It's heartbreaking to have to tell her repeatedly that we don't have Piglet anymore. I'm having a hard time finding the same one on the Disney website, so we're headed to the mall on Saturday to try and find it. Auntie Kimberly & Uncle Steve were so sweet to get it for her one of the times we visited them and Joel and now it's gone. :(

Karli's battle with sleep apnea

Since this is a place for me to record things that are going on in Karli's life, I figured I'd better blog about Karli's battle with sleep apnea and the Cpap machine.  I'll start from the beginning........

I didn't know much about sleep apnea or that Karli might have it until DH went to Dr. Sally Shott's presentation at the NDSC Conference in Kansas City in 2007.  The first thing he said to me when we met back up was that he was sure Karli had sleep apnea.  Dr. Shott had a list of common symptoms (I guess that would be the right word for it) and Karli fit almost every one.  Snoring, hyperactivity, weird sleeping positions, and restless sleep are just some of them.  We asked Karli's ENT for a sleep study and she had her first one in February of last year.  The result was that she has moderate obstructive sleep apnea and mild periodic leg movement disorder.  

Typically the first course of action would be to remove tonsils and adenoids.  Karli had hers removed when she was 16 months old for other reasons, so this wasn't an option.  I wonder how much worse her apnea would have been if we hadn't removed them when we did!  So the next step for her was to try Cpap.  It took 7 months to have her next sleep study done for the Cpap titration where they figure out what settings she needs for the machine.  I was so excited when she wore the mask for about 10 minutes while she was still awake and then slept for about 4 hours with it on overnight.  I was so optimistic that things were going to go well when we got home.  We finally got the machine at the beginning of January and started right away, and we have yet to get the mask on her here at home.  It just isn't going well at all and I'm so disappointed.  

We go for a visit to the sleep clinic on Monday and we're going to talk about de-sensitization therapy in the hope that it will help her tolerate it.  It's just so frustrating sometimes to think that we're already over a year into this and very little progress is being made.  I feel so bad for Karli since poor baby doesn't know what a good night's sleep is.  She's doing so well despite this but I can't help but think how much more she could be learning, etc. if we could just get her on the Cpap.  

To be continued.....I just pray the next post has good news in it!  :)  

An Award!!

I have my first blog award and my blog isn't even a month old!  How exciting!  My friends Courtney and Bethany both gave me this award, thank you both very much!

"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award."

Ok, I hope I do this right, I'm still very new to this, lol!  I think these 8 women are great people and deserving of this award:

McKenna

Renee G.

Kristen

Renee P. 

Stephanie

Amy

Brigitte

Heather

I originally met all these great moms online, but have been lucky enough to have met them in person also at one of the NDSC conferences.  Ok ladies, pass it on!