I Did It!

I made it an entire week at school! That's no small feat this school year! I had a fantastic week. I ate all of my food every day, and today Miss Maria realized she still had her gloves on about half way through my lunch. And it didn't even bother me! I have been falling asleep during dinner every night this week, so it will be nice to stay home and rest tomorrow. But I am definitely happy to be back at school.

Sometime next week I should be getting my very own walker for home! Papa ordered one for me so I can get it sooner than through insurance, and then eventually we'll just have two. It only comes in silver, so Papa wants to have in painted. :o) It's a shame that my brand new turquoise wheelchair is just sitting in the closet. Mommy wants to sell or donate it, but Medicaid only pays for one every 5 years. And she knows as soon as she finds a new home for it, I'll need it.

Most of you already know this, but on Monday, my Grandma Candy is going to have surgery to take out a brain tumor. I'm going to go to school that day so I don't have to be bored at the hospital. Besides, I'm there enough as it is! Mommy and Daddy will be there, and then maybe later in the week I can go visit her. I wonder if she'll get a visit from Shamu like I did? I should give her some pointers on how to get out an IV while no one's looking with no hands...

Back to School!

I had a great first day back at school! I played on the playground, and we had music therapy with Miss Kristen. I got to play the drums again, since I don't like to share them with anyone else. I wore my Wiggles shirt so everyone knew I went to the Wiggles on my little vacation. They all missed me and they said I look a lot bigger than when I left. Hmmm...could it be that post-surgery growth spurt Mommy read about? I ate every bite of my lunch and I was in a great mood when Mommy got there to pick me up. It felt good to be back!

Mommy talked to the physical therapist about my walker, and asked her if she ever faxed the letter of necessity to the medical supply company. She said they never contacted her like they said they would. Mommy was upset because the company said it would take three months to get the walker, and now here were 1 month into it and we haven't gotten any further. The company apologized for dropping the ball, and they said they'd get right on it. Mommy called a different company and they said it does not take three months if I get one of their in-stock walkers that don't require special order. Apparently, it's the approval for the special order walkers that take so long. And the fact that they have three reviewers for the entire state of Florida.

Anyway, Mommy's not sure she wants to get a different walker, because it looks very different from the one I have at school. And you know me--I like things to be the same. The one we are special ordering looks safer too, like it wouldn't tip as easily. Mommy is thinking about just buying one for now, and then we'll have two when the other one comes in three months. One can stay in the car or go to Papa's. Mommy found it online for $114 and free shipping, so she's going to talk to Papa and Daddy later to figure it out.

Happy Turkey Day!

I hope everyone had a nice Thanksgiving! Mommy and Papa cooked Thanksgiving dinner together, which was new for them but nice. It was nice to have our little family back together again for Thanksgiving...it had been too long! Aunt Jessie came for dinner and so did Papa's friend Jan. It was a fun night! Of course, I don't eat any of the dinner, but I did have my own special meal. Mommy got me baby food sweet potatoes and turkey, so I pretty much had the same thing as everyone else! And I ate several bites of Papa's homemade whipped cream and it was the best thing I've ever tasted!

Mommy went shopping on Black Friday for 12 hours (!) with Miss Mary and they had a great time. Mommy said it was nice to spend time with a good friend, and I say it was nice to spend some time with Daddy! He took me on a quick field trip to Bass Pro Shops, which was pretty brave of him, so I decided to behave. We all had a good weekend, but it's almost over. Mommy and Daddy are trying to decide whether or not to send me back to school on Monday. I've been home for so long that Mommy doesn't want to send me back. But she knows it's good for me too. Stay tuned...

My First Concert!

I had a great time at the Wiggles concert! It was a small place, so everyone had a good seat, and it was so much fun! I got a little cranky about half way through it because I was tired of being held, but then I perked up again. Mommy and Daddy danced and sang all of my favorite songs (Daddy tried, anyway) while they bounced me around. I loved it! Rianne and Thomas had a fun time dancing too. I think Mommy, Aunt Tracie, and Mary were more excited than the rest of us though!

It Wasn't a Little Cold

Well, I can never do things without a bang, can I?! That little cold that I had was not going away. I was coughing a lot, especially at night, and then Sunday night I coughed up a lot of blood. We went to the emergency room and they were going to send us home because my throat just looked a little irritated from the coughing. But they did a chest x-ray to find out why I was coughing, and what do you know! I have pneumonia! Fortunately, because I was already on antibiotics, I didn't get really sick from it like I normally do. Which is why Mommy didn't suspect pneumonia. I didn't even have a fever or any wheezing. Just a cough and fast breathing, and that's usually from my asthma. Also, I wasn't actually coughing UP blood, turns out the coughing was making my throat bleed. But the doctors said as long as it stops quickly on its own, which it was, that it was okay. I was admitted for observation at 5 am on Monday after spending all night in the ER, and then we were released at 11:30 am (but of course, the discharge orders weren't ready until 4 hours later). Mommy couldn't believe on the way home that we weren't even gone from our house for 24 hours. It sure felt like longer!

Everything went pretty well. The doctors were very good about listening to Mommy and all she knows about me. One of them remembered her from a previous visit and said, "Oh, yeah! You're that smart mom! You know so much about Emily." Mommy just said, "Well, I'm her mom!" Also, I was on an oxygen monitor while I was there, and my O2 level never went below 90. Can you believe that?!

So now I am taking steroids for a couple of days and I got some strong antibiotics through the IV, so I am feeling much better. I started sounding very hoarse at the hospital and I stopped swallowing my drool, so Mommy could tell that my throat was hurting worse than it had all week. Sometimes after surgery, kids come home with Tylenol with Codeine, but I was just getting regular Tylenol. Mommy asked for the stronger stuff while we were there this time, and they said sure. That has made me feel much better. Mommy gives it to me about an hour before each meal, and I am eating a little more now. I am not wincing each time I swallow, and I have not coughed up any more blood either.

Mommy has taken good care of me all week, but she was starting to lose her mind because she hadn't left the house (other than trips to the hospital) since Halloween! Not even to visit Mary next door! Papa came to stay with me yesterday so Mommy could finally go out and go grocery shopping. It's a good thing I wasn't eating because we had no food! Mommy and Daddy were eating soup from the hurricane supply kit. Even Spike was eating cooked rice, because we were out of his food. He really didn't seem to mind though!

Now things are finally starting to get back to normal around here! Here are some pictures of me with my hospital food, in my crib "cage," and with my daddy. Thanks to everyone who was thinking of me!

Just a little note to remember my Grandma, who passed away 9 years ago today. It makes my mommy sad to know we have never met, but I can feel her in my heart and soul. And Mommy says I'm fiesty just like she was. We miss you now more than ever!

Before and After Videos

Mommy finally figured out a way to share her videos! She uploaded them to the YouTube website, and then embedded them here. (Don't worry, Papa, you don't need to understand any of that!) Be sure to go back and look at the blog entry about my walker. There's a video there now too!

If for some reason you can't play these videos, there are links to them below. The first video is me sleeping four days before the surgery. Make sure your volume is up! The second video is me sleeping three days after the surgery. What a difference! And I am not even totally healed yet and I have a little cold. Wow!





In case you couldn't get these to play, here is the link to the BEFORE video on YouTube: http://www.youtube.com/watch?v=an8Av4b3SWg

And here is the link to the AFTER video: http://www.youtube.com/watch?v=Nt-otmdsUf8

I'm Home!

What a long week (or half a week)! My surgery was on Monday, and I slept in that morning, so I actually did really well going all morning without eating. But the day was still crazy! The doctor's office called Mommy that morning and said they were moving my surgery up 1 1/2 hours. So Mommy and Daddy ran around packing and getting things ready while I tore my bedroom apart. We were waiting for Papa to arrive, and then we were going to take two cars (Mommy's and Daddy's) since we knew we'd be staying the night. Daddy is loading stuff in Mommy's car and he realizes that the metal threads are showing on her tires. We knew she needed new tires, but we didn't know it had gotten that bad! So now we have to take Papa's car. Since we weren't planning on taking Papa's car, he didn't have the car seat. Daddy had to hurry and install the one from Mommy's car, but a spring broke in the carseat arm and it split Daddy's finger open. We quickly put the car seat from Daddy's truck in, and then had to bangage up Daddy's finger. Finally we were on our way...it was 9:50, and we were supposed to be there at 10. Obviously, that was impossible!

While we were waiting in the pre-op area, we talked to all the nurses and anesthesiologists who would be taking care of me. They told Mommy that I could not have the medicine that relaxes me before they take me away, because now I have sleep apnea. Even though I'd had the loopy meds before and I've always had the apnea...but now it's documented. I was being so silly though, that Dr. Cotter came in and said "Did they give her the loopy medicine?" Nope, that was just me!

My surgery went pretty well. Dr. Cotter took out my adenoids and shaved down my tonsils. She replaced my ear tubes with a set that should last close to a year (instead of 4 months). She looked inside my airway with a camera, and guess what she found? An accessory bronchus, which is a lung anomalie that can be common but cannot be fixed. It makes you more prone to coughs and pneumonia (Hello! I've had it three times in two years!)

Less than an hour after surgery, I saw the Elmo balloon that everyone had hidden from me so I could rest. I had barely even opened my eyes yet, but I wanted that balloon! And then I didn't let go for hours. Literally. Even when I was sleeping. And I held on to it for over 12 hours yesterday. Even when Shamu came to visit me in the hospital! I finally got tired of the bed rest, and started trying to stand up, which was not easy because my leg was taped up with an IV. But I did it!

Surgery recovery has been rougher than most of my other surgeries, but I'm doing well. I stayed in the hospital until last night, then I finally got to come home (without oxygen!) to rest. The hospital stay was about as good as a hospital stay can be, which was rotten! They didn't come in the the hospital room all night, so Mommy laid there thinking, "Why are we here?" She was so tired the next morning, and sat down to eat some breakfast, and THEN that's when everyone decided to come in and out of the room. Nurses, doctors, residents...and they all said I couldn't go home yet. Mommy was so exhausted, she called Daddy crying because it was just too much! Daddy called Papa, and ta da! Papa came to rescue us! Mommy was fine by the time he got there, she had just had a frustrating morning. Why did we have to stay if no one was even checking on me?! But once she had some company, she could eat her food and go to the bathroom finally! And as the day went on, I felt better too. I tried to take a nap, but every time I started to drift off, I remembered I wanted to play. One time, Papa was watching me "sleep" in my bed, and I popped my head up, pulled up on the side of the crib, and jumped into his arms with a big smile! We pretty much sat in the room all day, and finally the doctor said if my O2 level could stay above 90 without oxygen for the rest of the day, then I could go home. Success!

So now I am home and happy, and I ate food this morning for the first time since Sunday. I have really stinky breath, and you can smell it from a few feet away! Seriously! I am still a little irritable, but I am getting better and better each day. I even felt up to rocking on my horse today (probably not considered bed rest). It felt good to take a warm bath and get my hair washed and brushed. Clean clothes and my own home...I'll be back to new in no time!

Happy Halloween!

I wore my ladybug costume from last year to school for Halloween so that my new costume wouldn't get messed up before trick-or-treating. It was a big hit! I have to say, I think it looked even better on me this year! Mommy said it will be fun to compare last year's pictures with this year to see how different I look in the costume. (Mommy is having problems posting pictures on this website, so the ladybug picture is coming eventually!).


Later, my family came over and I had a fun night! Rianne was being a typical two year old and wouldn't wear her costume. Mary some how bribed her to put it on for a picture, but other than that short amount of time, she just kept saying "No like it!" So, I wore my costume and Rianne said "Trick or treat!" and "Thank you!" It was a nice compromise--we work well together! Everyone thought the pumpkin Mommy and Daddy carved was pretty funny. And of course, Spike as a hot dog always attracts plenty of attention! (Again, picture to soon follow!)

Then today we went to my pre-admission testing for my surgery on Monday. They took all my vitals and then they had to swab my nose to check for an infection called mersa. They check everyone for it to keep it from spreading. It's supposed to be a simple nasal swab, but of course with me, it started a nosebleed! Then Mommy found out what time my surgery is--1:15 in the afternoon. She was not happy, because that means I can't have any food after 5 am. It's much easier to go without food for several hours when the surgery is first thing in the morning! Actually, she was so frustrated that she cried and the nurse looked like she really didn't know what to do. The surgery scheduler is on vacation, so Mommy can't ask her what happened to me being the second one in line. They schedule based on age, so that the big kids go later. But I am not the size of your typical almost 4 year old! They should schedule based on size, not age! Anyway, Mommy tried her best to change it, but it looks like it's going to stick. Monday is definitely going to be a long day!