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Southern New Jersey

I am a Mom to 2 amazing and fun daughters and wife to a great guy and a wonderful father!

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Kayla, my oldest. She is 4 1/2 and is a sweet, loving and silly little girl. She took us 2 ½ years and 3 IVF’s to conceive. Kayla is allergic to dairy. We manage her allergy and work to balance her safety with giving her a normal childhood. Kayla loves to read books and play games - she amazes me every day.

Alysa, my youngest. She is 3 years old and is a silly little spitfire. She’s our monkey and loves to climb on everything. She was a “natural” baby, but it was only b/c of my wonderful doctors that we were able to stop an impending miscarriage. Alysa suffers from Acid Reflux Disease and sleep apnea. She may be little, but she has a big personality. She adores her big sister and is so much fun to be around. She keeps me laughing every day.

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Friday, December 12, 2008
Sleep Study
It's been almost a week since the sleep study and I'm still recovering. I really wonder how people sleep there when they're all hooked up b/c I did not sleep and I was not hooked up to anything.

We got there at 7:30 pm. Alysa was in her jammies with Baby and Taggie in tow. Her room was very homey with a full size bed, two end tables a small coat rack/mirror and some pretty pictures on the wall (some being Disney Princesses). I went in thinking it would be a nightmare getting her to sleep. She has been known to completely melt down over sleeping at my Sister's. So I was pleasantly surprised when I watched my 3 year old sit quietly and patiently while the Tech covered her head, her back, chest, face, neck and legs with little electrode thingies (yes that is a technical term). Towards the end she got a bit restless, but it was a very calm, I want to get down type, not a freak out at all. The Tech was great and she even put a sticker and wire on Baby so Alysa would not be "alone". The only thing Alysa really balked at was when they tried to put the little nose prongs in. Ha! As soon as I saw them I told them, "Good luck with that." They ended up putting them on when she was asleep, but even in her sleep she kept pushing them out. I was told I could sleep in the bed with her (I didn't want this b/c I was afraid it would defeat the purpose of us being there), a cot in the room or the room next door. So I laid down with her, hoping to help her fall asleep. After 20 minutes or so, here's how it went...

Alysa - "Mommy, you need to go to your room now."
Me - "What?" (I was shocked)
Alysa - "You need to go to your bed."
Me - "You want me to LEAVE?"
Alysa - "Yes."

So I did. I left and she never asked for me again. The tech had to go in a few times to untangle her before she fell asleep, but she was great. Talking to her like they were best buds. I sat in my room with my trusty laptop (unfortunately no internet access) and did some scrapping until I was told she was asleep (by around 10pm). I was disappointed that their rooms are not sound proofed, as I heard her go in Alysa's room a million times (she had to untangle her, stop her from going off the edge, adjust her nose prongs, etc - all par for the course with a child). I got very little sleep. At one point during the night I thought I heard Alysa talking, but she never cried and I didn't want to get up unless they got me so as to not disturb the whole thing.

Alysa woke up bright and early at 6am (she usually sleeps until 8-8:30) and boy was she DONE! She wanted out of there so bad. What upset her the most out of the whole experience was how sticky her hair was once all the thingies came off. I got, "Mommy I'm all sticky" and she was quite pouty about it. She does not like to be dirty.

I was told at one point during the night she woke up and asked to go home. When she was told it wasn't time and she was offered a drink of water, she said, "I want to get a drink of water at home." But according to the tech, she slept well.

Here are some photos from her study - I apologize for the quality, I forgot my real camera and had to use my phone...

Here is her hair when we got home. It was no wonder she was miserable - it was a sticky mess!

And now for what you're waiting to know - Alysa does indeed have Sleep Apnea. I was actually shocked. I just went in today figuring I'd get nothing and be left with a child who sleep walks and is exhausted all the time with no known cause or way to correct it. He said that she slept very well 96% of the night [I'm jealous since I barely slept at all that night]. He said that more than 1 occurrence of sleep apnea an hour is abnormal in a child her age. Alysa stopped breathing an average of 3.7 times per hour and during REM sleep, she stopped breathing an average of 8 times per hour. I'm no expert (yet) on sleep apnea, but that seems a bit scary to me. He also said that her blood oxygen saturation level had dropped during these episodes from the norm of in the 90's% to close to 80%. Thankfully her carbon dioxide levels remained within normal range and never increased. He said she has a clear-cut case of sleep apnea. At her age, the only treatment for it is to have her tonsils and adenoids removed. They only do oxygen masks on children in extreme cases (which apparently, she is not). So now we must go to see an ENT (Ears, Nose & Throat doctor). Her sleep doctor said he believes they should be removed, but that it is up to the ENT and what he says. He told me when he looked, her tonsils did not seem to him to be overly enlarged, but he did see them. We all know Alysa is a peanut, so maybe normal size is just too big for her tiny little frame.

Now, don't get me wrong I'm in no way happy she suffers from sleep apnea, but I'm THRILLED at her diagnosis. Sleep apnea is related to acid reflux disease AND poor appetite and poor weight gain. So...this means that if her ENT takes out her tonsils and adenoids (this cures most cases of childhood sleep apnea), it could be the solution to all of our problems!!! I'm not expecting a miracle cure, but this could put her on the path to recovery!

Lucky for us we are surrounded with some great Pediatric hospitals - CHOPP in Philadelphia and DuPont in Delaware, so we'll have our pic of pediatric experts.

Finally! Some answers!!!

posted at 4:36 PM  

At 9:53 PM, Blogger Typette said...

omg just looking at those pictures makes me melt... she looked to be in great spirits though!

I remember getting unhooked from all those wires and just wanting to jump in the shower -- but I was too tired at the time and drove home with the goo. I was miserable and I was 23 years old. LOL...

At least you got some answers -- that is a relief.

At 7:22 AM, Blogger Amy said...

Wow! Well, thank God for a diagnosis.
My dr has ordered me to go do a sleep study, but I've resisted. I'm exhausted all the time (had a childhood full of sleep walking & night terrors) & after ruling everything else out, they're convinced that I must have apnea.
In response to your comment re Gabe's speech therapy & if insurance will cover it:
We pursued coverage through insurance a year ago, when it was confirmed that he had a speech delay.
The only way they'll cover is if he had been speaking, normally, and stopped - due to illness or injury.
That doesn't make a lot of sense to me...but also doesn't surprise me, as insurance companies are famous for 'getting out' of paying for stuff!

At 8:33 AM, Blogger Nowheymama said...

Oh, I'm so glad you know what's going on!

At 12:06 AM, Blogger Michelle said...

I can't imagine Kayla cooperating for a sleep study LOL I'm glad to hear that you are finally getting some answers!

At 9:43 AM, Blogger Blessed said...

Answers are so nice! Good luck with the next step!


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