Done For Now

Here's me at the sleep study last night, flossing like a good girl. :o) Obviously, I was not aware of what was to come! Usually when we get in a doctor's office, I know right away and I don't waste any time expressing my displeasure. But this place is deceiving because it has a fun big girl bed. I was so tired that my balloon kept me entertained for a little while, but then I just tried to use it as a pillow.

Same old routine, all the wires were put on me and then I went to sleep. When the sensors told the techs that I was in a deep sleep, she came back in to put the CPAP mask on me. So much for a deep sleep! As soon as she turned on the air, I woke up, freaked out, yanked off the mask, and then before anyone could stop me, I grabbed a handful of wires and pulled as fast and as hard as I could. Success! I got five wires off in one yank! So they had to wait until I went back to sleep again. This time I did not wake up when they put the mask on, so that was good.

Mommy couldn't believe how strong the air was coming out of the mask. She said she doesn't think she could even blow in someone's face that hard, so how on earth I was able to breathe with that thing on, who knows. And the mask was huge! It covered by mouth and nose, and then had a forehead piece to help it stay in place (it didn't). There were two straps that went around the back of my head. I actually slept from 9:45 until 12:20. Then I woke up, scared and really upset! I kept pulling off the mask and screaming, and Mommy kept trying to hold my hands. But I can be pretty strong when I'm mad, so the tech had to come in three times in about 10 minutes to fix the mask. Mommy had to continue to hold my arms while I cried and kicked her as hard as I could. I would settle down for a few seconds or so, then start all over again.

After an HOUR of this, Mommy got up and told the tech a sleep study does no good if I can't sleep. They said, "Hang in there, I know it's frustrating, but she'll wear herself out and fall back asleep." Mommy wanted to yank the wires off and take me home right then, but it really did seem like I was going to fall asleep any minute. Then I would scream again. This went on for ANOTHER 90 MINUTES until I finally fell asleep enough for Mommy to be able to let go of me. Mommy was crying because she was so tired of all of this, so she cheered herself up by thinking "I wonder if this is how Grandma Candy has to make Grandpa Chuck sleep with his CPAP mask?" :o)

I slept from 3:00 until 5:15 when they came in to send us home. When they took the mask off, Mommy could see how dry the inside of my nose looked. And my mouth was dry too. A few more nights of this, and nosebleeds are inevitable. Mommy asked the tech how she was supposed to know at home when the mask needed readjusted if it had shifted during the night. "Oh, the air sound gets a little louder," she said. Right--when Mommy is sleeping on the other side of the house, she's supposed to be able to detect a change in the sound of air. Sure.

This time the tape from the wires left red marks on my face. It normally does, but last time it didn't, so we were hoping for a repeat. No such luck--should've known since there are school pictures this week! Hopefully it will be cleared up by then, but it usually takes several days. I didn't want to wear the silly hat home this time, so I just wore my crazy hair instead! Fortunately, Mommy braided it the night before, so only the top part was a mess.

We came home and got straight in the bath, so I was all cleaned up and fed by 7:30. I felt much better. Now I can just play all day, and maybe nap...maybe. You know the drill--no results for about a week or so!

UPDATE: Emily fell asleep playing in her room at 10:00 this morning!

More Medical Junk...Then On To The Fun Stuff!

Mommy was trying to figure out why the doctor couldn't just send us the CPAP sleep apnea machine instead of having us come back. Now we know why. The CPAP is a like an oxygen mask and it forces air into my nose and mouth to keep the airway open. Apparently, my weak throat muscles are causing the shallow breathing. They collapse and partially block off the airway. We've always known they were weak and collapse, but we didn't know that's what was causing the sleep apnea (or so they think). So at the next sleep study, they would gradually increase the air pressure throughout the night until they find the right setting for me. I already know the right setting and could save them a lot of hassle...OFF!

Mommy is actually starting to look foward to this sleep study though so she can see just how much of an improvement there really is on this machine, if much at all. She wants the numbers so she can compare all of the tests! She kind of wishes that she would have made the appointment for the craniofacial surgeon for after we get the results, but we don't want to wait and wonder what he's going to say. Let's just get it over with!

So we go to see the craniofacial surgeon on Friday. Mommy says she'll at least let him do the consultation, but at some point she has to draw the line and keep me from being a guinea pig. The surgery outcome would be uncertain, and he's not going to be able to tell us just how much better I will be able to breathe at night because I am writing my own book! So if the 198 episodes only drops to 100, is it really worth surgery on my face?? I think not! From what Mommy has heard and read from the ENT and craniofacial websites is that there are many different things that could be done, like moving my bottom jaw to open up the airway, removing the uvula at the back of my throat, removing part of my palate, changing the shape of my nose...all of them are things that would change the way I look or who knows what other effects. We are not okay with that at all! On one website, the International Craniofacial Institute, they actually said children with genetic disorders benefit from this surgery by "looking better and breathing better." Can you believe they said that?! LOOKING better?? Obviously they don't know just how cute I am!

Anyway, on to the fun stuff! My Papa brought me a Get Well Soon balloon yesterday that is the BIGGEST balloon he has every brought me! It's huge and I love it! Last night it was in the dining room and when it touched one of the light bulbs in the chandelier, the light bulb exploded and shattered! Most balloons would have popped, but not this one! Here are some pictures and video of me with my new best friend!

Sleeping Beauty

I went to the pediatrician yesterday and it turns out I have a chest cold. They didn't want to give me any medicine just yet because I wasn't technically wheezing, so they gave Mommy a prescription for an oral steroid and said I could get it if I started wheezing. Whatever--you know Mommy didn't wait! Why would we wait for the wheezing...so we can wind up in the ER with pneumonia again?! So we got back from the doctors and I had a fever and was feeling pretty rotten. Mommy laid me down for a nap at 1:30 and I was out cold 15 minutes later. And...I didn't wake up until 9:30 this morning. THAT'S 20 HOURS! Can you believe that? Mommy said she wasn't concerned, because I wasn't on any crazy new medicine, and it's not like I was comatose. It must have done the trick though, because I have been in a much better mood today. No fever, I ate all of my breakfast and lunch, and I have been playing all day. I am totally sick of the breathing treatments though. They REALLY annoy me sometimes!

Poor Mommy thought everything was better and avoided another trip to the hospital. Then she gets a phone call from the sleep study office. They want me to come in right away for another sleep study, this time while I'm wearing the CPAP mask (that's the sleep apnea machine). Mommy froze and almost dropped the phone. She just couldn't believe it. The nurse wanted us to come in this weekend. Mommy told her no, that I have a chest cold and that wouldn't make for a very accurate result. So now we have to go Wednesday night. Ugh!!! Mommy went out to the mailbox to see if the results were there, and they were. Even though most of my numbers were dramatically better, they are apparently still bad enough to be considered severe obstructive sleep apnea.

Here's what my test said:
1. Last time my O2 level at it's lowest was 74%. This time is was 82%.
2. Last time I spent only 70% of sleep time with an O2 level above 90%. This time I spent 93% of my time above 90%. Much better!
3. Last time I had 330 episodes of shallow breathing, or obstructive hypopneas. This time I had 198. Still a lot, but still much better! And I slept for 100 more minutes, so that number is even better than it sounds.
4. Last time my apnea/hypopnea index (the number used to determine severity) was 60.1. This time it was 33.7. Way better! But unfortunately, if you can believe it, the normal level is 1 or less.

Mommy talked to Dr. Pollack, my genetics doctor, about the new results. Dr. Pollack can sometimes look at things like this with more common sense than just my numbers compared to the normal numbers. Mommy said she knows there is no way I am going to sleep with this machine, and it's going to dry out my nose and cause nosebleeds just like the oxygen did. Dr. Pollack completely agreed, but she pointed out that it's just one night, we have nothing to lose by doing the study on the machine, and if I do tolerate the CPAP, then all the better for me. If I don't, she said, then we've done what we can and we have to pick our battles. There's already been an obvious significant improvement in my sleep--Mommy knew that before these results came in. So I guess we are going for another sleep study, and Mommy might just have to draw the line after that!

P.S. Mommy just got a phone call from the nurse at the ENT's office. She has referred us to Dr. Ruiz, a craniofacial surgeon. The ENT seems to feel that craniofacial surgery could help further. Mommy should have been happy with the CPAP machine apparently! That type of surgery seems a little extreme, and it looks like we are going to have to make another phone call to Dr. Pollack for advice! Good thing there's lots of chocolate in our house!

Sick Again!

At least I had a fun weekend before I got sick! On Saturday, I visited my Uncle Shawn for his birthday. That was fun, except we stayed past my bedtime so I was getting a little tired. But at least we only live 1/2 a mile away! Then yesterday, I visited my cousin Rianne. She had a good time running in front of me while I used my walker to get around! It was like we were chasing each other!

Now today I'm feeling a little under the weather. Mommy knew it was going to happen, because our crazy temperatures went from hot to cold again. Good thing there was already no school today. Hopefully I'll be well enough to go back tomorrow, because Mommy is going with Aunt Tracie to share her thoughts about a possible preschool for Rianne.

Fingers crossed for my friend Thomas...he goes to the doctor today to see if his milk allergy is still lingering around!

We Actually Slept!

Well, last night wasn't too bad! Mommy brought a small balloon with us so I would stay awake in the car. Last time, I kept trying to fall asleep and she had to drive with the light on. They took us back right away and got us situated in our room. Mommy took all of the blankets in the room (except for one to cover up with) and folded them in half, then laid them on top of the bed we were sharing. That way the bed was softer, and this time when she moved around, the plastic sheet wouldn't be so loud. She put the softest blankie on top, and it felt like velvet. Once again, I thought it was very funny to play on a big girl bed, and I made myself comfortable right away!

Then the nurse came in to put all of the stuff on me. I did much better than last time, and really didn't get too upset. But then I just got tired and wanted to go to sleep, and it was so frustrating that everytime I pulled a wire off, the nurse stuck it right back on. That completely defeated the purpose of what I was trying to do!

But she finished up quickly, and by 8:50, it was lights out. Mommy laid in bed with me for a few minutes, but I kept picking my head up to smile at her. She could tell I was tired, because my smile was kind of lopsided and my eyes were really crossed. So she gave me a kiss and got out of the bed, and from what I'm told, I was asleep in two minutes!

Mommy didn't hear a peep out of me all night, except for the occassional toot. :o) We laid head to toe so that we weren't breathing in each other's faces, and it gave Mommy a little more room to sleep because I'm not as long as her. That worked out great! Mommy listened to her music and read a magazine by the light of a mini flashlight. She went to sleep around 10:45, and didn't even have to use the music this time! She woke up around 1:00 to go potty, and then she fell back asleep around 1:30. She woke up again at 4:00, and then was in and out of sleep until the nurse came in at 5:00 to say it was time to get up and go! I was still sound asleep, and Mommy couldn't believe I didn't toss and turn and get tangled like last time. We took all of the wires off of me, and I had to wear that silly hat again because of the glue in my hair.

Mommy cleaned me all up when we got home, and you can't even tell I had stuff glued to me last night! I even had behavior therapy this morning and did well. It will be about a week or two before we get the results of the sleep study, but we think it went pretty well. Cross your fingers! It's nice to finally have it over with and hopefully we won't need to do it again anytime soon.

The Last One, We Hope!

Time for my follow up sleep study! We have to be there at 8:00 tonight. We will be glad to get this over with. It's kind of been looming over Mommy for the last few months, ever since we had the first one and found out we were going to have to do it all over again. But this time, at least, we aren't concerned about the results. Mommy is still expecting some episodes of shallow breathing or stopping all together, but hopefully there will be a dramatic improvement over the last one. Will the pictures be as pathetically cute as last time? You'll have to stay tuned to find out...

Going for a Stroll

I went for a walk with Mommy and Daddy today. Two days in a row we've gone on walks! It's a lot of fun, because we get to feed the ducks. I don't really care much about that part, but I do like when Spike chases them, because they make a ton of noise! It was cold tonight, so Mommy put me in my special winter jammies with the feet. I wasn't too happy about that. I kept trying to pull them off like socks, but they wouldn't go anywhere. Mommy wrapped me up in a blanket, and we were off! I'm not too impressed by walks, but Mommy says it's good for me to get outside. I don't really go out much because the sun hurts my eyes so much. But when Daddy gets home, the sun is going away, so it's a good time for me to go outside!

My favorite part of going on a walk is when I get to hold Spike's leash and he walks in front of my stroller. I think that's VERY funny, and it makes me feel like a big girl. Mommy says that can be another "job" I have around the house. My other chores are to slam any open doors (you better say goodbye quickly when you are leaving my house!) and turn off the light switches when Mommy lifts me up there.

Spike wasn't wearing his sweater, so I think he was cold when we got home. Mommy was not happy that Spike was in the clean white laundry, but he didn't really seem to care!

Playground Fun!

Mommy and Daddy haven't taken me to the park in a while, because I was scared of most of the stuff there, especially the slide. I only liked the swings, and I have my own swing at home. But then Mommy was talking to my teachers a couple of weeks ago, and they told her that I love to go down the slide. Mommy was shocked and then she felt bad that she didn't know that about me. Apparently, I have gotten used to the playground at school! One time, I even snuck away from my teachers and slid head-first down the big twisty slide! It scared Miss Maria when she ran to the bottom of the slide to catch me, but I was laughing away!

So Mommy and Daddy took me to the park down the street, and it was so much fun! I really liked going down the slide with Daddy. As soon as we got to the bottom, I wanted back to the top again! I even climbed back up the slide so I could slide down on my own! I was so energized that I didn't want to sit in my car seat to leave. I just kept standing! It was great, and it was a nice evening with my favorite two parents!

Happy New Year!

Well, it's back to school with me tomorrow! I have had fun at home, but I do miss playing at school too. We have all enjoyed sleeping in these past few weeks, but now it's back to the old routine! Mommy has to warn my teachers that now I bite myself when I'm upset. Yep, right on the back of the hand. Don't ask me why I do it, I know it's crazy, but it makes me feel better for some reason. Mommy was so happy that I stopped banging my head or punching myself in the face so much, but now she's thinking be careful what you wish for. She said she should have known. I always just replace one behavior with another one. That's why she keeps telling my teachers to back off on trying to keep me from blowing bubbles on things. Because I might start doing something else in place of it, and you don't get to pick what it is!

I have an appointment for my follow-up sleep study next week, Thursday night. Mommy is not looking forward to it, but at least now she knows more what to expect. And she knows not to even try and sleep in the recliner...it'll just pop her right back to sitting straight up every time she doses off! We already know that my O2 levels are better at night, because I was hospitalized (for like 8 whole hours) for that pneumonia in November. But it will be neat to get new numbers and recordings so that we can compare them to the last set. Oh, and I went to the pediatrician before Christmas for a check up. And remember that growth spurt Mommy heard about that some kids have after the tonsil/adenoid surgery? Well, I had one! In one month, I gained almost 3/4 of a pound and grew 1/2 an inch! That doesn't sound like a whole lot, but it often takes me almost a year to grow that much. Amazing!