My Miniature Walker

Look what my physical therapist found for me! It's like an old lady walker, but just my size. I need some teeny tiny tennis balls to put on the legs. :o) I am too tall for the push toys, because they are for babies, so I have to walk with them hunched over. But this is perfect! So Mommy is going to try to get one for home too. I walked all the way from my classroom to the playground today using my walker. That is the farthest I've ever walked! Sometimes I forget I am supposed to hold the handles. I keep trying to hold the metal bar in front. And then I spit on it instead of walking. So my physical therapist is going to put some velcro on it (the scratchy stuff) so that I won't want to hold that part or spit on it. Pretty sneaky, but I'm sure I'll find a way around it!

Here is the long awaited video! It's short, but it definitely shows how much fun I am having!




In case you couldn't get the video to play, here is the link to the one on YouTube: http://www.youtube.com/watch?v=SG2S8IS1jY4

A Cheerleader and a Cowboy

Mommy took me to get my pictures taken in my Halloween costume. I am going to be a cheerleader. I was more interested in playing with my pom poms than looking at the camera, but that's okay! That's why Mommy picked this costume!

My friend Thomas is going to be a cowboy for Halloween. Except he must have his dates mixed up, because he's been wearing the hat, vest, and boots since his Mommy bought them a few weeks ago! :o) No pictures of my cousin Rianne in her Snow White costume yet...she was being more like a diva than a princess this weekend, so Mommy will take some good pictures on Wednesday.

Nothing Special Happening Here!

This morning I went to the pediatrician's office to get my annual flu shot. I did really well! I was mad because Mommy held me on my back and I don't like to lay that way. But as soon as she sat me up, I was laughing and playing again. I'm glad that's over with before we really get into flu season.

I saw the nutritionist and GI doctor this week. That was pretty uneventful too! They said I looked great. I weigh 22 pounds 12 ounces and I measured 31 1/4 inches tall. That means since the last time I was there in April, I have gained 3 pounds and grown 2 inches! And I don't have to go back for 5 months.

I have been sleeping with my oxygen every night this week. Mommy puts it on me after I go to sleep, and when she comes in to check on me in the morning, it's not on me anymore. So at some point, I take it off in my sleep. Mommy doesn't want to tape it to my face because my skin has reactions with the tape. We figure some time with the oxygen is better than none at all, which is what I have been getting for 3 1/2 years!

My Weekend of Fun!

Wow, I was a social butterfly this weekend! Friday night, we went to the St. Joseph's carnival that Papa has been taking Mommy to since she was a baby. But I was really tired because Mommy made me go grocery shopping with her earlier in the day. So I didn't really enjoy the rides Mommy took me on. Oh well...better luck next year.

Then Saturday night we went to Aunt Tracie's house with Mary and Thomas for a "Mommy and Me" night. The other kids there were a little more mobile than me, but they were nice enough to keep bringing me toys. The mommies were happy because they got away for the night but they didn't have to worry about their babies!

Yesterday, we went to the Green Meadows Petting Farm with Thomas, Rianne, baby Jackson, and all of their mommies and daddies. It was so much fun! I got to ride a pony, a train, and a tractor pulled us around while we sat on hay. I fed goats and sheep, I almost squished a baby duck, and I tried to pluck a chicken. I straightened a pig's tail and tried to milk a cow, but my arm wasn't quite long enough. So I just patted its belly instead. At the end, I got to choose my own pumpkin to take home. I had a good time, and even though I was exhausted, I never napped and I refused to fall asleep until 9:20 last night! Mommy tried forever to wake me up this morning, but I just didn't want to. So I am home today, recuperating from my busy weekend!

Surgery #9

Mommy and I went to see Dr. Cotter today about my sleep study results. Turns out I stopped breathing 12 times during the night. Bad, but not super bad. Here is what made my sleep apnea severe: I had 330 episodes of obstructive hypopnea. That means I was breathing, but the airflow was restricted to less than 50%. I was only asleep for 345 minutes, so I basically had restricted airflow the entire night. To determine the severity of my sleep apnea, the doctor puts these numbers into a formula and gets a new number to compare to a range. Normal should be a number of 1 or less. Then there are different ranges until you get to 20. Anything above 20 is considered severely abnormal. My number.....was 60.

The doctor wants me to be on oxygen until my surgery because I spent 30% of my sleeping time with an oxygen saturation level below 90%, and it really should be above 92%. I will be having surgery November 5th to remove my adenoids and "shave" down my tonsils. There is a risk my tonsil tissue could grow back eventually, but removing them root and all poses a higher risk of infection and bleeding. Mommy asked Dr. Cotter to replace my ear tubes even though they are still in tact, because they are due to fall out anytime now. She is going to put some bigger ones in that should last for about a year, instead of 4 or 5 months. Also, while I'm sedated, she is going to put a camera in my nose and down my throat to take pictures of my airway to see if there is anything else that might be contributing to the breathing problems. The whole surgery should take about 2 hours.

Afterwards, I am going to stay the night (hopefully just one) in the hospital. There is a chance I will be in the ICU since my apnea is so severe, but Mommy made sure she could still stay with me. Dr. Cotter said the remodeled ICU is like a hotel suite, and that we might never want to leave. Mommy politely said she doubts that. :o) Dr. Cotter was brutally honest about how I will feel after surgery, but that's what Mommy asked for. She said the pain will be "massive, severe" and that I will be very unhappy for quite a while. The pain is usually the worst between days 3 and 7. Fortunately (?), I have a g-tube, so Mommy won't have to worry about me being readmitted to the hospital if I refuse to eat or drink like some kids do. Also, staying in the hospital means I might get some better pain medication than just plain old Tylenol or Motrin.

After surgery, I will be on bed rest for one week, then no heavy physical activity for another week after that. Hopefully, I will be in good shape for my Wiggly concert on November 16th. I will also have a repeat sleep study sometime after Christmas. Mommy is sad and worried about this surgery, and she cried most of the way home today. But she knows it is for the best, and it could make me much healthier and happier.

Mommy, Daddy, Papa, and Aunt Tracie are all very upset that my old ENT, Dr. Moser, didn't take care of me properly. Mommy asked Dr. Cotter why she thought he never sent us for a sleep study in all the years he was my doctor. She smiled sadly at Mommy, shrugged her shoulders, and said quietly, "You weren't going to the right ENT." We second that one.

The Results Are In

Yesterday we went over to Mary and Thomas' house to play. When we got home, there was a message on the answering machine from Dr. Cotter, my ENT. She said the results are in from my sleep study and that she needed to see me right away. She sounded very worried, and so of course, Mommy was too. But it was after hours when Mommy called back, so she had to call again first thing this morning. She spoke to a nurse who said that I have severe obstructive sleep apnea (OSA), and that my tonsils and adenoids need to come out right away. She said the doctor doesn't usually write that...so of course, that made Mommy feel so nice and not worried at all. They need to see me first for an appointment, so they wanted me to come in this morning. Mommy told them that I was already at school, but she could go pick me up. But they said tomorrow would be fine. So we have an appointment at 1:50 tomorrow. And probably, surgery some time next week. OSA causes snoring, behavior problems, and growth deficiencies, but this surgery supposedly fixes 90% of pediatric OSA cases. It's an outpatient surgery, but riskier than the other surgeries I've had, so I may have to stay the night after surgery so they can keep a close eye on me.

Glad That's Over With!

We are back from my sleep study, although we didn't sleep much! I was so tired on the way to the sleep lab that Mommy had to leave the light on in the car. Then she kept saying "Stay awake! Stay awake!" I was a little annoyed to tell you the truth! :o) We were almost there, and then...a train!! A loooong train. We got there at 8pm and they checked us in around 8:15. I perked up once I saw the big girl bed I got to sleep in. Mommy wasn't happy about it, because she felt like she was going to have to sleep with one eye open to keep an eye on me. But I thought it was cool!

It took a long time for the man to come in and put the wires on me. It was a little after 9:00 and I was getting really sleepy. He finally came in and it took about 40 minutes to get all of the wires and leads on me. Not because I was fighting it (although I was), but because there were about 25 different wires! And each one had to be placed in a specific spot. I was not happy, but I've been angrier before. I think I was mainly crying because I was so tired. I had one wire on each ankle, on my big toe, behind both ears, on the outside of my eyes, on my jaw, two under my chin, two on my chest, and eight on my head. Plus three tight bands around my chest and belly. Mommy was holding my hands so I couldn't pull them off, but because she wouldn't be able to do that all night, they had to wrap my hands up. I really wasn't too mad about that part, surprisingly! I also wore a little stocking cap to help keep the leads stuck to my head.

Mommy carried me over to the bed, and while the doctor was plugging all of wires in, I fell alseep almost immediately. Poor Mommy though...all they had for her to sleep in was a recliner, and it didn't even lay flat. She had to drag it to the side of the bed without the railing, so I wouldn't fall off if I rolled. She told me she didn't fall alseep until around midnight, and then she woke up hoping it was almost time to go. No such luck--only 1:30 am. Her back hurt really bad from the recliner, so she moved to the bed with me. But then I was snoring in her ear! So she had to wear out the battery in her MP3 player by playing it all night! She fell asleep again around 2am, then woke up again...lucky this time? Nope, only 3:30 am!

The nurse came in around 4 to say he had seen me roll over on the video survelliance, and he was worried the wires might be around my neck. They were, but not tight! I woke up mad and yelling, "All done!" when they had to flip me around. Then I decided as punishment, I wouldn't go back to sleep! So I made lots of noise while I was laying on the bed with Mommy. After a log time, around 45 minutes, she put her nose up to mine and said, "Please go nigh-night!" I cracked up laughing and squealed really loud, and Mommy knew we were done! I was not going back to sleep! Fortunately, the doctor came in then, and said, "Mommy, if she's not going to go back to sleep, we have enough data. You guys can go if you are ready." Yes! So they took all of the silly wires off of me, but there was still a lot of glue in my hair. So I had to wear the silly stocking cap home. This is me all ready to go home at 5:15 am!

We came home and Mommy put me in my crib while she tried to get some sleep. She got up about an hour later, and you can bet I was still playing in my crib! I never went back to sleep, and I have been tearing the house apart all morning. Mommy has not had the courage to mess with my hair yet... :o) The nurse told us that the results would take 5 to 7 business days, which is different from what the brochure said. But that's okay. I hope you liked all of the pictures of me!

What a Face!

Look at how efficient I am! Both nostrils at one time!

I am feeling much better now that I am on my antibiotics. I am not breathing as hard, I'm hardly coughing at all, and I haven't had a fever since I started the medicine. Yay! I went back to school on Monday, and unless I get sick tomorrow, this will be my first full week of school since the first week. Wow!

Tomorrow night is my sleep study. Daddy is complaining that he will have to sleep by himself all night. Mommy said tomorrow night will be the first time she'll only have to listen to one person snore all night, instead of two! I don't think I'm going to like all of the electrodes they are going to glue on me. In fact, they really should just use super glue, because I plan on ripping each one off immediately after it's applied.

Here is what the brochure says they do during the sleep study: Eight or more electrodes are attached to the scalp with a special glue. These determine your level of sleep by recording brain waves and eye movements. Pairs of electrodes are attached to the underside of the chin to record muscle tone. This determines REM sleep as muscle tone disappears in REM. Electrodes are applied to the lower portion of each leg to monitor leg movement. Two elastic-like bands are placed around the chest and abdomen to record breathing effort. A probe is placed on a finger to record oxygen levels and patches are applied to the chest to record the heartbeat. The technologist is located in an adjacent area with the recording equipment.

We are supposed to get the results mailed to us in 72 hours. Mommy is hoping I will actually sleep, instead of waking up at 2:30 in the morning to have my own personal party in the crib. Would I ever do anything like that?? Yeah--I did it last night!

Super Mommy Again!

So, remember when I said Mommy was happy because the doctor put me on an antibiotic to make me better? Well, we STILL haven't gotten the medicine yet. When the pharmacy submitted it to Medicaid on Monday, they got a reply that said, "Not a preferred drug. Requires prior authorization from physician." Hello??? Isn't the prescription the authorization?! Anyway, so this morning, Mommy was still waiting on the approval from Medicaid. Everyone else had done their part. So Mommy found a phone number for Medicaid and was on hold for 45 minutes before she talked to a very nice man who was knowledgable. Mommy said to me, "Wow, it's not often you find someone like that at Medicaid!"

She told the nice man that she didn't understand what the problem was, because I was just on the same medicine in February for my double pneumonia, and I had been on it for ear infections before. So he looked in his computer and said, "I think I found the problem. Your pharmacy is submitting the generic form, but only the brand name is covered for this drug. That's why you didn't have any problems the last time you needed it." Mommy said, "Seriously?!" as nicely as she could, and then she got off the phone and said a few not nice words. She and Daddy have been pretty upset that I have not been able to get my medicine all week. Mommy called the pharmacy and told them what she knew, so they resubmitted the prescription under the brand name. Voila! My prescription will be ready this afternoon. The pharmacist had some not so nice words to say about it too. :o)

Mommy said she just has to laugh about it or she would go insane.

Cuteness and Pie

I saw the pulmonologist today for my regular checkup, but Mommy was anxious to see him so he can give me medicine to make me feel better! Plus, I like him because he calls me "Cuteness and Pie." :o) I got a fever on Sunday of 104, which is the highest it's ever been and it wouldn't come down. Finally, after some Motrin and a sponge bath, it went down a few degrees. Then this morning I was feeling rotten again. My other fevers were not like these--they went away quick and stayed away. But these lingered. So, after weeks of the pediatrician saying it was just a virus, we finally found out it is chronic sinusitis, and the doctor said it had been brewing for a while! He put me on an antibiotic that I will take once a day for 30 days, so it will be in my system for a long time. Hopefully, that means we can knock out the germs and keep them out!