Merry Christmas!

I hope Santa was as good to all of you as he was to me! I had a very fun Christmas, except for my sinus and ear infection. That has not been fun. But I was feeling a little better just in time to open presents Christmas morning! Santa Claus brought me some big blocks to climb all over and, oh yes, blow bubbles on! They were a lot of fun! And I figured out very quickly that they are another item that slide well on the wood floors, which means I can use them to get through the house. Mommy says they just match her living room so well!

Two of the gifts Papa got me were a big hit too! One was a Disney Princess tunnel that I can crawl through. I love it! And the fabric makes good noises when I scratch it with my fingers. The other was a homemade present...Papa put two rolls of toilet paper on a clothes hanger, so now I can unroll every bit of it and it's all mine! I can't get in trouble for it like I do when I sneak into the potty room! Mommy hung it in my room but I haven't unrolled it all yet. Papa will be sure to get a clean-up phone call when I do! :o)

On a side note, I had an eye appointment on Thursday, and it took several people to hold me still while Dr. Blumenfeld looked in my eyes. I was running out of things to do to escape, so I blew as many raspberries as I could when the doctor was close to my face. He sat up, wiped his eyes, and said, "Well, that worked!" Mommy thinks I figured out that it worked too, because when Dr. Blumenfeld came back for a second look a few minutes later, I went right to the raspberry trick again! But he got a good look anyway, and he said I still have a slight astigmatism in both eyes, but it has not gotten any worse since he first told us about it a couple of years ago. And my eyes were not crossing, so the surgery was a success. I don't have to come back for six whole months!

And about my ear infection: Mommy knew I had one because my hair keeps getting stuck to the drainage on the outside of my ear. But believe it or not, that's a very good thing! I have had several ear infections since I got my ear tubes, but there was never any drainage. Never! And that is the whole point of the ear tubes. But now here we are, after geting a "real" set of ear tubes from our new ENT, and the first ear infection I have, ta da! There's drainage! That means they are doing their job and my ear infection has not been painful! Hooray!

Another Busy Week!

Here's some day by day stuff, since it's been so long since I've written and so much has happened this week! Get comfortable, there's a lot to read!

Saturday, Dec. 8:

Mommy was sick with food poisoning so Daddy took care of me all day. My clothes actually matched (sort of), and he even brushed my hair and put it in a pony tail...that is no minor accomplishment! Mommy said she was going crazy in the bedroom because I sounded like I was in such a good mood and she wanted to play with me, but she was just too tired. She felt better later and we got to play some before I went to bed. And good news for Mommy...I decided to stay in a great mood all week! Mommy thinks I'm sleeping better at night now and so I'm less irritable during the day. Most of the time.

Sunday, Dec. 9:

We got our pictures taken for Christmas, and I thought the snowman was the funniest darn thing ever! The picture that Mommy and Daddy chose to get was the one with my nice smile; the others were the crazy, squinty eyed, count all my teeth smiles! The snowman originally had a top hat on, but I kept biting it and then I threw it, so we just left it off. The pictures have been a big hit with everyone, and Mommy said she can't stop looking at it! Below is another picture, this one with snowflakes, that Mommy just got a small wallet size for her and Daddy. It's too cute too! Then we went to see Santa and I really wasn't impressed. I think I was tired of having my picture taken. So I just sat on his lap and stared at Mommy and Daddy like, "No more pictures, please!" I'm sure he'll bring me fun toys anyway.

Tuesday, 12/11:

I am showing new feelings about people I care about. When Mommy puts me in Daddy's truck and says good bye in the morning, she waves until we drive away. In the past, I never cared really. But now, I watch her the whole time we are backing out of the driveway. And then when I can't see her anymore, I get mad and throw my toy. Daddy says I calm down pretty quickly though. Then when he gets me to school, I hang on to his shirt collar and I don't want to let go. But he passes me to Miss Maria, and then I'm okay. When Mommy comes to pick me up, I am very excited to see her and I throw myself in her arms and hang on tight! It's like a hug, I guess! Mommy says it's nice to see that really care about people who are special to me. But don't think this means I don't like school. Because they said I have had great days since coming back after my surgery. I've been happy and silly! And I'm still that way at home! Mommy, Daddy, and I played together for a long time, over an hour, and I never got mad. Their batteries were wearing out, but not mine! I just kept going! Here is some video of me playing with Daddy.

Wednesday, 12/12:

I had a visit with my genetics doctor, Dr. Pollack. Not much to say about this appointment, other than she was really thrilled about how well I've been doing, and that I am like a different child since the last visit six months ago! She said again how I've just exceeded all of her expectations! Mommy likes to hear that, because we get tired of hearing and talking about delays all of the time. Let's talk about all of things I can do! My milestones may be more like inchstones, but I'm getting there!

Thursday, 12/13:

Santa Claus came to my school to visit today, but I was not in a great mood because the air conditioner was broken. It was sooo hot! So I just pulled his beard, and then when he was nice and gave me a book anyway, I blew bubbles on it and then I threw it! Mommy says I'm pushing my luck with Santa this year, and it's a good thing he loves me as much as she does! Well, almost as much! :o) I was so hot that during nap time, I crawled over to the cold tile floor and layed on it like a puppy dog. Finally, they fixed the air and I was much happier!

Friday, 12/14:

My first behavior therapy session in a loooong time. I almost got discharged, but then after my surgery, I regressed a little bit and started hitting myself and banging my head again. So we are going to keep working on that. But I'm only hurting myself 1/10th as frequently as I was when we first started behavior modification 6 months ago. That's a big step! Tonight we went to my Uncle Craig's 50th birthday party, and it was fun for me because it meant balloons! I fell asleep in my Pack and Play crib, and slept most of the time. It was nice for everyone else because it meant they got to stay late and have fun, dancing and singing karaoke.

Saturday, 12/15:

Rianne and Aunt Tracie came to visit, and I haven't seen them since the Wiggles concert a whole month ago! Daddy got some tennis balls to put on my walker today, and boy, do I move faster now! I spent 10 minutes doing laps inside the house. I loved it! Unfortunately, Spike is a little confused, and he keeps biting at the tennis balls to try and run away with them. My silliness has continued today, too...check me out with a basket on my head! I crack me up. Papa babysat me tonight while Mommy and Daddy celebrated their 5th/10th anniversary. It was actually yesterday, but they moved their dinner to tonight so they could have fun with the rest of the family at Uncle Craig's birthday bash. Mommy had a ton of fun, so she was glad they made that choice!

Everyone Loves My Walker

Mommy and Daddy took me outside to practice using my new walker in the driveway last night. It was so much fun! Except Mommy stayed right on my heels in case I fell. It made her very nervous that I would bust my head on the concrete. She put Daddy in charge for a minute so she could get some video of me walking around. Guess she didn't think he was watching closely enough, because he got in trouble while she was recording. Oops. :o)



When my walker came, it was in a pretty small box, so Mommy figured maybe some assembly was required. But when she opened the box, she pulled it out all assembled! It's that tiny! Even my friend Thomas thought my walker was fun, and he actually walks faster without it! It will take some getting used to, since I'm still learning how to steer it, but I do love it!



Here's me, running away to the circus!





And here I am, asking "Ummm, Mommy? Where is my walker going?"

Oh, there it is! Silly Thomas! :o)

What a Week!

Monday:
My Grandma Candy had her brain surgery and did fantastic! So I heard...Papa took care of me in the morning, drove me to school, drove to the hospital, waited until Grandma Candy was out of surgery successfully, then drove back to school and took me home. He stayed with me until Mommy and Daddy came home. Phew! Anyway, Mommy said the waiting room was packed full of people who love Grandma Candy and were there to support her and Grandpa Chuck. At first, Grandma Candy wasn't going to tell anyone she was going to have surgery. She didn't want it to be "a big deal." But she looked very happy to know that so many people were thinking of her while she was getting her"golf ball" removed. Those are her words, not mine! :o)

Oh, and my walker came today! I am zooming all around with it! And I like to sit down next to it, grab it at the bottom, and flip it over with a loud bang. Just because I can.

Tuesday:
Mommy kept me home from school, and Papa came with us to the ENT appointment. They tested my hearing like they always do when I have tubes placed, but we actually got an answer this time instead of "She was uncooperative." Don't worry, I was still uncooperative this time. But this audiologist was better than the others. She said that I have the mildest of mild hearing loss, and she doesn't even want to call it that. She'd rather say, "Emily doesn't have perfect hearing." Sounds better to me! Then the ENT said everything looked good and I don't have to come back for six whole months! Mommy mentioned to her that ever since my surgery, some baby food is coming out of my nose while I eat. She said it's not harmful as long as it's just a small amount, it will just take time for me to learn how to swallow with an open airway now! It is weird though...banana pudding, yellow snot; smashed peas, green snot; blue raspberry yogurt...well, you get the idea! Oh, and Mommy told her that I have been having some bloody snot, which is usually a precursor to the nosebleed season. Darn it.

Then we went to the hospital to visit Grandma Candy. I stayed in the waiting area with Aunt Suzi (Grandpa Chuck's sister) while Papa and Mommy visited in Neuro ICU. She looked fantastic! And it doesn't look like they really had to shave her head either. She has already noticed a vast improvement in her vision. She said she feels great and is supposed to be moved out of ICU soon.

Wednesday:
I went to school today and had a great, fun day! Mommy came and picked me up and my teachers had taken great care to keep me clean because they said I looked so pretty today. Which of course, I did. But then on the way home, I got a horrible nosebleed. Mommy had to pull over on the side of a busy road for 15 minutes. The blood was going back into my throat some because I was on an incline in my car seat, but Mommy was afraid to take me out in case a car ran into us. Finally, my nose stopped bleeding, and we drove the rest of the way home. It was not fun! There was blood on Mommy's arm and face, and all over me and my "clean & pretty" clothes. I guess it's just that time of year again! But I'm better now and I have been playing all afternoon! Daddy is visiting Grandma Candy, who is no longer in ICU and should go home first thing tomorrow morning! Great job, Grandma! We are all so proud of you!

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!

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!

I'm Behaving!

For the last 8 weeks, my behavior therapist wanted Mommy to keep track of how many times I was "aggressive" (hit other people) or "self-injurious" (hit myself or banged my head). The first week, I had 54 aggression tally marks and 70 self-injurious tally marks. Each week it has gotten better. This week....I had two aggression marks and NO self-injurious marks! Mommy said I get a special treat tonight, so instead of regular Vanilla Pediasure through my feeding tube, I get Strawberry! :o)

Next on our list to work on is eating from a different spoon. All of you knew that I would only eat for Mommy, but not many people knew that I only eat from the rubber-tipped baby spoons! Mommy didn't know until one day she forgot to bring a spoon with my lunch, and she tried to use the plastic baby spoon she keeps in our emergency kit. I wouldn't eat the food even though I was hungry. So far though, it looks like I'm going to hold out longer than I did when other people tried feeding me. I made progress there pretty quickly. But Mommy has been trying for the last week to get me to take just one bite from a different spoon and I absolutely refuse! She thought it was too easy now that other people can feed me, so I have to keep her on her toes!

I'm Sick...Cough Cough...

When Mommy came to pick me up from school today, they said I had a slight fever. I get a little fever occasionally, and then after one dose of Tylenol, it goes away. So we all know it was no big deal, but school policy says I can't come tomorrow because I have to be fever-free for 24 hours. And I don't go to school on Fridays. So that means I get a 4 day weekend! Mommy took this picture about 15 minutes after we got home from school. Don't I look soooo sick? :o)

Happy Friday!

I went to my friend Ansley's house today to play. Except I didn't really play with her because Mommy wouldn't let me get too close. She was afraid I'd blow bubbles on Ansley. :o) We had fun and it was a nice way to spend the day after being at the WIC office all morning. While we were waiting, Mommy kept saying she was tired of being there every two months and that we just weren't going to do it anymore. But I know next time she uses a WIC check to pay for all of my expensive Pediasure, she won't complain then!

I went for my 6 week post-op check up with my eye doctor on Thursday. Mommy saw my eye turn in once and Papa saw it another time. But that's it, so the doctor said he wouldn't be concerned unless it started happening more frequently. And Mommy tried to show him the blue dot that she can see in the corner of my eye, but I wouldn't let the doctor look, even though he tried to trick me with a cool toy. He said it's probably just the kot from a stitch that hasn't completely dissolved, and he wouldn't worry about it. I don't have to go back to see him until the very end of December. Yay!

I'm Learning New Things Today!

Learning Lesson #1:
This morning when Mommy put on my horsie shirt from Grandma Candy, I pushed my arms through the sleeves all by myself! I've never done that before! Not because I couldn't, just because I chose to let Mommy do the work. :o)

Learning Lesson #2:
Mommy left a small glass of water on the end table, which of course means it's fair game for me. I was standing at the table and decided to pick up the glass and shake it hard like I do with water bottles. But there was no lid on this glass like on a bottle and all the water went in my face and then all over the table! I felt like someone had dropped me in the swimming pool! Mommy picked me up real quick and dried my face off to calm me down. Then after she made sure I was breathing okay, she and Daddy laughed at me! I'm okay now, I just have really wet bangs...so I guess it was actually pretty funny! But I probably won't do that again!

My New ENT

Today was my first appointment with the new ENT, Dr. Cotter. She was nice, not overly-friendly, but not mean either. She looked in my ears, up my nose, and down my throat. It took two nurses plus Mommy to hold me while the doctor looked in my mouth. I was not happy about that one. She said the inside of my nose looks "chronically infected" and she prescribed an antibiotic nasal saline spray to heal it up. That should help, because Mommy can only get so far in there with a Q-tip and Neosporin. And she gave us unlimited refills on it, so now anytime my nose gets really yucky, Mommy can try the new stuff.

Dr. Cotter wants me to have a sleep study done, because based on the things Mommy told her, she suspects I have sleep apnea. She also said my tonsils and adenoids were enlarged, but we already knew that. Dr. Cotter, however, will probably want to do surgery to take them out. Depending on the sleep study. Of course, Mommy is not super excited about that, but if it can help me breathe easier, it will be worth it. She expected it eventually anyway. PLUS, it may reduce the fluid that builds up in my ears when the tubes aren't in. So that means I may need less tube surgeries if I get my adenoids/tonsils out. And breathing easier means my nose won't dry out as much, which means less nosebleeds. So any way you look at it, surgery sounds like a beneficial option. At least that's what Mommy keeps trying to tell me. :o)

What a Fun Day!

I had a special visitor at school today! Ronald McDonald came to play! I wasn't too impressed by him, but I loved his red and white striped legs. I kept crawling behind him so I could scratch up and down his socks! Then at circle time, he sat next to me and held my hand. I didn't even notice, I was too busy blowing bubbles on my other hand. But then I saw him out of the corner of my eye! I snapped my head to look at him, and my eyes were huge. I slowly tipped my head back to look up at him, and he had the craziest hair I've ever seen! Mommy showed me a postcard of him when we got home and she asked my questions about my visit. I was too busy smiling and laughing at the picture to answer her!

Some other great news: I am going to the Wiggles concert in November! Mommy and Daddy are going, and so is Aunt Tracie, Uncle John (if he doesn't fake being sick!) and my cousin Rianne. My next door friend Thomas and his mommy and daddy are going too, but they are not sitting in the same spot as us. It is the only television show that I am glued to when it is on, so Mommy decided it was worth the money for the tickets. It will be so much fun!

I'm Still Here!

Wow! I didn't realize it had been so long since I've written a message on here! But Mommy and I were both sick on Labor Day weekend, and I have not been sleeping very well this week. It made me really grumpy during the day, and sometimes I would just cry a sad cry. But I still did good with eating at school! I have eaten all of my lunch every day! Yay for me!

I had fun this weekend. I was supposed to visit my friend Ansley but she was busy, so I went and played with my cousin Rianne instead. We took a bubble bath together and I showed her how a big girl tips her head back when her Mommy needs to rinse her hair. Mommy did not point out that I do not do this at home and I must have been showing off! :o) Back to school tomorrow, but it is a short week because there is no school on Thursday. I will be going to the doctor's that day to see a new ENT! Hopefully we like her, Mommy says we will because she scrapbooks. But I think anyone is better than the other ENT I had. We have to drive further, but we already drive so far anyway, Mommy says it's fine! We'll see what she has to say, if anything different. Mommy is not expecting any different opinions, just someone a little nicer than the last ENT!

Sneaky Sneaky!

Hmmmm...what doesn't belong in this picture?

Figured it out yet? :o) Scroll down for the answer!

Oops! Busted in the potty room...again!

To Grandmother's House I Go!

This is me and my great grandma. I had fun visiting her today! I also got to see my great Aunt Vera and Uncle Dean too. I like Grandma and Aunt Vera because every time they see me, they talk about how smart and pretty I am. Now who wouldn't agree with that?

First Day of School

Here is what happens when you get up at 4:30 in the morning on the first day of school and then play during naptime. You fall asleep on the living room floor at 7:15! But I had a good first day and I didn't even bat an eye when the new kids were crying and screaming for their mommies and daddies. I just played with Christian (a classmate from last year) and helped him pull all the toys off the bookshelves. We were like old pros at school! And Mommy came during lunch time, but she didn't have to feed me. I ate everything for Miss Lauren, and she wasn't even part of the feeding experience this summer. Miss Lauren wasn't wearing a glove on her right hand, but after I took a few bites, she clapped for me, and guess what?! There was still a glove on her left hand! I guess she thought it wouldn't matter, but I snapped my head up and gave her a look, and she said, "Oh, okay! Sorry, I'll take that one off too!" Mommy is coming back tomorrow, so we can get the eating thing down pat right at the beginning of the year. That way if she starts working soon, she won't have to worry so much about me not eating at school!

Meet the {Same} Teachers

First things first...we all knew this already, but my sweaty results are in and NO CYSTIC FIBROSIS! Woo hoo! So my diagnosis is now officially pancreatic insufficiency. Mommy hasn't Googled it yet, so we don't know much about it. Maybe we'll have more info later.

Today was the Meet the Teacher at my school. Mommy was not happy that I was moved up from the Creators room to the Navigators room. She didn't think it would be safe for me since I was the only one not walking or talking. The room was really big and the toys were for big kids. Mommy had a talk with the director and when the director tried to use fancy teaching words, Mommy used some right back. :o) Oops, wrong Mommy to do that to! The director feels that the old class is not challenging enough for me, but Mommy feels the new one is too challenging and I will be left behind. So long story short, I will be back on Monday with my same teachers (yay, I love Miss Maria) in my same classroom but with new classmates. Mommy says she hopes she made the right call, but she feels like it is worth the risk. And look how happy I am in the pictures!

I Was a Sweaty Betty!

Today was my sweat chloride test. It was not nearly as simple as the doctor made it sound. But it wasn't too bad. First, they had to put these electrodes on my arms and I had to keep those on for five minutes on one arm, then five minutes on the other. They had a slight electric current that was supposed to open up my sweat glands. Whatever, all I know is I did not like it! It made me mad because Mommy had to hold my arms. So I kept yanking the wires out of the machine and when the nurse leaned in close to make sure they were still stuck to my arm...wham! I slapped her right in the face. It wasn't very nice of me, I know, but Mommy was secretly happy that I directed my anger to the appropriate person instead of hitting myself in the face. :o) Anyway, so then they had to put these plastic discs on my arms to absorb sweat, and they turned blue when they did. I had to wear them for 30 minutes. The nurse was concerned that because I had messed with the wires so much, I might not sweat enough for what they needed. She said we might have to do it all over again. Mommy said no way! So she gave me lots of water and then took me outside in the shade so I would definitely sweat! And I did...plenty! They got twice the sweat they needed. The doctor should already have the results, so Mommy is going to start pestering them tomorrow morning for the results.

About my tummy issues, it's still not "normal" but it has changed. I didn't go poo for almost two days, and Mommy was getting really scared that I was either constipated now, or when I finally went, watch out! Well, I finally went, and let's just say she had to hose me down in the shower, scrub the dining room wall, and mop the floor. Hmmm, and we wonder why she's looking for a new job! :o) It wasn't as runny but it was still pretty messy. And now it's been a whole day since I've gone. Wonder if it will happen during Meet the Teacher at school tomorrow?! I can initiate my new teacher quickly! Oh, and Papa brought me a card today that said, "Feeling poopy? Hope you're better soon!" Mommy said it was just perfect!

Just Tummy Problems?

Okay, so some not so great news. By the way, if you are squeamish or poo stories gross you out, stop reading now! You have been warned! For the last three weeks, I have had diarrhea. Really gross, I know. It started on the same day Mommy gave me baby food plums for breakfast. So she thought that's what it was, and decided she was not going to do that again! Only it still hasn't stopped. And Mommy was waiting for it to pass, but after a few days, she thought it probably wasn't the plums. And I'm not sick, I'm not getting dehydrated and I have no fever. So that's good, but it's still really annoying. And even though Mommy changes me fast like lightning, I still got a bad diaper rash. So then not only was my bottom sore, but my hoo-hoo was too. Don't tell Daddy that I said that. :o) And I don't like when Mommy puts the medicine cream on me, so I squeeze together my legs and everything gets blocked from my thighs. I'm pretty strong too, so it takes a lot of work for Mommy to get the cream on me.

Anyway, Mommy called the doctor and they faxed orders for a bunch of tests that Mommy had to collect 6 poo samples for. It was pretty hard to do since my diaper was immediately soaking everything up! So Mommy had to put Saran wrap in my diaper so she could get to it before it was gone! Mommy got everything turned in last week. It took a few days to collect it all since it had to be done from different diapers at different times. And some of it had to be kept frozen. Like poop-sicles. :o) Mommy tried for a few days to get someone at the doctor's office to call her back, but the receptionist kept saying the nurse needed to discuss things with the doctor first. Mommy wanted to know what things!! She was getting really mad and she said to Daddy, "I bet if I bring her down there and let her poop all over THEIR carpet, they would move a little faster!" Cause that is happening here a lot! I got it all over the wood floor here like a big puddle, and then I tracked it through my bedroom. Ick! I have to get my clothes changed several times a day, and Mommy says she feels like she can't take me anywhere. Cause I always poo and it makes a big mess. Plus, it is kind of loud so people look at us funny. Last week after Mommy dropped off the poop-sicles, we had to go grocery shopping and I pooed in my last pair of extra clothes Mommy had. So I had to go grocery shopping with no pants on. But Mommy shrugged and said, "Eh, it's WalMart." And she calls me Poopy Pooperton now.

Mommy finally got a hold of the nurse this week, and I am not contagious! Woo hoo! All of the tests came back negative. Exciting at first, but obviously something is not right! But the nurse said my pancreatic enzyme levels were low, so she was calling in a medicine that I have to take with every meal. It's a total pain, Mommy said, but that's another story. Then the nurse said she was sending us to Arnold Palmer to get a sweat chloride test done. Mommy asked what it was and how it was done. The nurse said it measures the amount of salt in my sweat. We have to go to the hospital and they put like a band-aid thing on my arm, then we walk around for an hour while it absorbs my sweat. Then they take it off and we wait. Mommy told Daddy it is absolutely ridiculous that the doctor allowed her to collect several samples of poo, but she can't do the sweat band-aid at home. It is kind of funny.

Anyway, so Mommy asked the nurse why I needed this test done. And the nurse said, very laid back, "Oh, it's to test for cystic fibrosis." Like it was nothing! Like it's not a potentially fatal disease! Mommy is pretty confident that I don't have it, but you know she started reading the symptoms and information and it fits for me. But that's not saying much, cause we can probably make me fit for just about anything! So we go for the test on Thursday, and I don't know when we will find out. So Mommy says please keep us in your hearts this week, even though she knows we will be fine. And for now, I continue to poo on everything.

5 Days Later

Look how good my eye looks! Mommy said she knew it wasn't as red, but she didn't realize until she took a picture just how much better it looks now. Tomorrow is the last day that I have to get eye drops in my eye. Then next week, I am going to visit the eye doctor for a follow up. I am doing really well, and I didn't even make Mommy cancel therapy yesterday. In fact, I was being so goofy during therapy that I don't think we really got much done. But I had fun anyway!

I'm Back, Baby!

Hi everyone! I wanted to let you all know that I am doing good today! I got a good night's rest after playing all day yesterday. Mommy said she got up every four hours last night to check on me and give me some Tylenol through my tummy tube. But I slept right through it! I took a bath this morning to get the sticky stuff off of me from the IV and the leads at the hospital. Mommy's not allowed to wash my hair, so it was the best bath ever! My eye is not draining or anything, and I am being really good about not rubbing it. I'm pretty upset when Mommy has to put the eye drop in my eye three times a day, and then it's hard not to rub it. But I forget about it pretty quickly and go back to playing. Mommy said we are just going to take it easy for a few days. I don't have anything planned until Tuesday, and then I have therapy. But Mommy said she will cancel it if I want her to. Hmmm....

Emily's Eye Surgery

Emily did really well today. Dr. Blumenfeld operated on the left eye, which was the weaker of the two. I'm a little bummed because her eyes are turning in the same as they were before, but it can take 4 to 6 weeks to see the accurate results. Still, it's hard to wait! But she pulled through the surgery like a champ. I could hear her crying and yelling in the hallway when they were bringing her back to our room to recover, and when the nurse came through the door holding Emily, the poor nurse was getting scratched, hit, and headbutted. So, obviously she quickly goes back to her spitfire self!

Everything went really quickly, and Emily has already eaten lunch and is tearing the house apart (so much for resting quietly!). She's got a balloon from Papa that saved that day. She is not rubbing her eye too much, so that's good. Older children have reported that after surgery, they feel like they have sand in their eye. So I imagine it would be virtually impossible to restrain from rubbing it! That feeling should pass soon, and the redness will fade over the next few weeks. For now, it looks like she came up too fast from scuba diving!

Here are a few pictures of Emily. I know it looks bad, but I promise she is doing really well!