I am quickly wearing out my welcome with my brother, Henry. He jumps up on the chair and I poke him so he moves to the other side of the chair and I poke him again. He then gets down on the floor and I chase him around. Why am I chasing him? Because Grandma Smith showed me how to play with his toes when she was out last week and now I can't get enough of those cute toesies!
My brother Chili and I went with Daddy to the vet yesterday. Mommy had noticed a few weeks ago that his ears were awfully dirty and red. In the last few days it got bad enough that he started itching them until they started bleeding. So we went to the vet and found out he has a yeast infection. Now he will have to have his ears cleaned out every other day and get meds in them twice a day. After the vet gave his ears a good cleaning in the office he is already feeling much better and leaving them alone. I'm so glad my doggies are okay - they are great entertainment.
I love to feed my doggies. Here I am signing "eat". They are very patient as I feed them one kibble at a time. Don't you love my hair - very 80's frizz right!
A shout out to my cousin Jackson who turned 1 today. Wish I could have been there to celebrate with you and play in the bounce house. A little birdie told me that he is going to come visit me for my birthday again this year. Hopefully, I won't be having any surgeries and I can show him my extensive toy collection!
I've had several hearing tests in the first 21 months of my life but nothing prepared Mommy for the one today. Maybe it was because I was ready for a nap or maybe it was because I was hungry - or maybe it was because I had surgery just a few days ago and wasn't wanting anyone to be messing with me - but it was ugly! As soon as the door shut behind us in the little room and the nice lady started showing me some toys the tears began. And this wasn't just a little whining - this was all out sobbing! I tried to bury myself in Mommy's chest but sometimes the noise would be so loud I would look up briefly. At times, I would stop crying for a brief moment to listen - but my head would never leave Mommy's chest. Finally, I started trying to climb up Mommy and pointing out the door. It took Mommy a few minutes to figure out what I was signing - Lucille (who was on the other side of the door). Eventually, they took pity on me and put a stop to the test. I won't have to go back for six months - will that be long enough for me (or Mommy for that matter) to forget about this one?
It was time for Papa to leave. Before he hit the road though, he let me come out and check the oil and tires with him. I was a very good helper! Then while Papa had a cup of coffee I sat on the couch next to him enjoying our last few minutes together. I am so glad he came to see me!
This afternoon it was time for Grandma Smith to head back to Salt Lake. Mommy had hoped we would get some time to spend at the park but I decided to take a 3 1/2 hour nap in the middle of the day and squashed her plans! We settled for lunch at Chili's before heading to the airport but I insisted on wearing my princess shoes before we could leave. Just about the time my parents are feeling comfortable taking me to a restaurant I've decided that sitting still in the high chair is not nearly as interesting as running around the place. For the first 15 minutes or so stacking the little creamer cups or stirring Mommy's coffee will keep me entertained. Eventually, though, I want out of the high chair and I won't take no for an answer!
I had a great night's sleep last night so when I woke up this morning I was ready to play. So ready that I threw a fit when Mommy tried to get me dressed and do my hair! When Daddy woke up this morning and came out to the kitchen, I was busy signing "Grandpa" and wondering where he was. When I heard someone down the hall, I took off running to go find him. I was very happy when Papa finally came out for breakfast and I got to spend time with him. He likes to build blocks with me and is willing to sit through Singing Times over and over.
After a morning nap, the whole family headed to the park. The dogs were just as excited to get out in the sunshine as I was. They were interested in the squirrel and I wanted to go see the ducks. My parents and grandparents had to eat in shifts though as someone had to run after me and someone had to keep ahold of the ducks. I was having a wonderful time feeding the ducks and helping Daddy walk the dogs and then it all came to a screeching halt when I tripped and fell - and bit through my bottom lip. There was lots of blood but very little crying and my parents decided it was probably best to head back home.
In the evening, we went to Marie Callendar's for dinner. I was happy in the high chair for the first few minutes because there was a little boy about my size in a high chair at the table next to us. When he got up to run around, though, I wanted out of my chair so I could go find him. So Papa and Mommy took turns running after me. Papa promised me a ballon so I picked out a purple one to take home and it did a great job of keeping me entertained in the car. After a few minutes running around the house at full speed it was time to go to bed and I didn't fight it I was pretty exhausted.
You'd think my big ole cast would slow be down but you would be wrong! From the moment I woke up this morning I was on the go, doing all the things I did before the cast - just had to modify it a little sometimes. I played with playdoh, climbed my stairs and rode my train. When Grandma got up this morning I was happy to see her. Although I never made it on to her lap today, I spent plenty of time showing off to her. In the afternoon, Sherry came by from the nursing agency to fill out some paperwork. She was happy to hear that my temperature had broken during the night and I wasn't showing any other signs of being sick. Since I just had the one little poopy diaper yesterday she suggested a suppository to make sure I didn't get backed up. So before we headed out to run errands, Mommy took care of that and just hoped it would wait until we were home. We ran to Home Depot to get some propane and then on to Kohl's. Most of my clothes don't fit over my cast, so Grandma was super excited to get to go clothes shopping for me. She said it has been a long time since she got to really shop for baby girl clothes and she couldn't wait! I ended up with some new shirts that will be big enough that I can wear them even after the cast is off. By the time we made it home the suppository had taken effect and man was it messy - my parents had to change my outfit. They were very thankful that I waited until we were home. I only took one short nap so I went to bed early tonight after a quick trach change without much fuss.
After a night with little to no sleeping around 4:00 am Mommy finally decided to rock me while we watched some videos. And there we stayed for the next 4+ hours. A little after 6 am the resident came by to check on us and he said we should be able to discharge between 9-11 and he would get the paperwork all taken care of. Around 7:15, Dr James came in to say goodbye. Then Daddy and Papa arrived around 8 am. While Mommy got all my stuff together to leave, Daddy and Papa ran me down to the clinic to have my cast looked at. It wasn't long after they came back that the nurse arrived with my discharge papers and prescription. By 9 am we were on our way out the door! As soon as I got in my stroller my mood changed dramatically and I even started laughing a little - I was ready to get on the road.
When we got home I ran off to start playing with the dogs and my toys. It wasn't long, though, before I started to slow down. So while Mommy went down for a nap, so did I. After a four hour nap (that's right, four hours) we all got in the car to head to the grocery store. I entertained Daddy and Papa while Mommy shopped. By the time we got home it was dinner time so Mommy and Daddy traded off following me around and cooking. I was definately worn out so as soon as dinner was done, my parents got me ready for bed. It took me a little while to fall asleep because it's hard to get comfortable with that big cast. Around 9 pm, Daddy took my temperature and found a was running a fever. That woke me up so Mommy came out and rocked me while Daddy and Papa went to the airport to pick up Grandma. When Carol arrived at 10, I was still awake but had just gotten a dose of Tylenol so it didn't take me long before I was back to sleep - hopefully for good this time. When Grandma came home she peeked in on me. Tomorrow I will be up bright and early to play with her!
The day started early for all of us. So early, in fact, that I was still asleep. My parents let me stay in my jammies for the ride to Shriner's. I sat in my car seat in the back with Papa and I was all smiles. During preop they asked my parents lots of questions and took my height, weight and temperature. As long as my parents kept my video going on the portable DVD player I was happy. We looked at a few cast colors and decided on bright pink this time around. After a short discussion with the resident, the anesthesiologist and Dr James I got a dose of some medicine to calm me down before it was time to take me away. It didn't seem to have the desired effect and I was happily playing with the toys in the waiting area when they came to get me. So there were definately a few tears as they carried me away. Dr James was happy to get the blood the endocrinologist needed but it wasn't in Shriner's budget to do the reading so she told my parents she would get them the blood in the appropriate vials and they could get them on to the endocrinologist. Off I went to the while Papa and my parents went on to the cafeteria to get some coffee and something to eat. No sooner had they sat down then in rushed a nurse looking for them. Mommy had a moment of panic until the nurse explained that someone from the OR had the blood and was trying to meet up with my parents to make sure it got delivered safely.
Since the surgery was set to last 3-4 hours my parents and Papa had plenty of time to walk the vials next door to the lab at UC Davis. Then they settled in at the waiting area at Shriner's with their i Pods to listen to their music and try to relax. A few hours later the phone rang in the waiting area and they found out the surgery was just finishing up and I was doing fine. About 30 minutes later, they got another phone call that I was in recovery and opening my eyes. Since only one person could go to recovery at a time, Daddy went in first and spent some time rocking me. I was nice and calm until Mommy came in to relieve Daddy and then I got a little upset. It was only a few more minutes before the nurse said I was ready to go to my own room down on the inpatient floor. So while two nurses wheeled me, Mommy, Daddy and Papa escorted me to my room. Luckily, it will be all mine tonight. Within just a few minutes I was watching my video and getting pretty animated. Mommy thought this seemed way too easy - and then the nerve block wore off! Out of nowhere, I suddenly became very agitated and was thrashing around. Nothing seemed to work to calm me down. The nurse came in and gave me a dose of Tylenol with Codeine and after about 30 minutes of crying in my crib I finally fell asleep. Mommy and Papa ran to get some lunch and Daddy kept an eye on me. Unfortunately, a nurse came in while they were gone and I got woken back up. As long as I was being rocked or someone was patting my back while I was laying in my crib I was okay. But I wasn't able to get very comfortable with the cast and didn't sleep for long periods of time. At 4, my Mommy sent Papa and Daddy home so they could check on the boys and miss the afternoon traffic. Since I am in a room by myself, Mommy is staying with me tonight. For the next 16 hours, Mommy and I spent lots of quality time together. It would take her about 45 minutes of patting my back before I would fall asleep and then she would try to lay down and sleep herself. About the time she was nodding off I would wake back up and the cycle began again. I didn't get much sleep - but she got even less!
It was the day before the big day. Both Mommy and Daddy had to work so Papa played with me and ran a few errands. He sat in on my feeding therapy appointment and I made sure to give him a good show - throwing food and spoons on the floor when there was something on my tray I didn't want. Since I am definately in a stage right now where I don't want to try new things, Karen and Mommy are trying to get me to taste something new each visit. It can be a new flavor of something I already like (ice cream) or a new color of something (strawberry juice vs. apple juice). It is always a little bit of a battle before I finally give in and try it - and usually like it but don't tell them that : ) It will be an early day tomorrow. Dr. James wants me at Shriner's by 6 am so we will all be up bright and early!
It was a busy day for Mommy, Lucille and I. It started with a morning appointment with Dr Long - an endocrinologist at UC Davis. Because I am so small, my pediatrician thought it would be a good idea to have an endocrinologist check me out. I weighed in at 19 lbs. 8 ozs. Just can't seem to break that 20 lb mark! After doing some internet research, Dr Long couldn't find any publications or documentation of children with Nager syndrome getting growth hormone injections. He told Mommy I have many reasons to be small that don't include my syndrome - my heart condition, my g tube, my many surgeries, my reflux..... At this point there isn't any way to know if the reason children with Nager tend to be short is due to the syndrome itself or all the things that go along with the syndrome. Just based on my parents height, I should probably be around 5'7''. To determine how tall I might be, they generally do measurements of the hands and fingers. Since I have abnormalities in my fingers and wrists - Dr Long isn't sure how accurate any of those measurements would be. He is encouraged that despite me being so small - I am proportionate with height and weight combined. That is probably a good sign that I don't need growth hormone - just that I have other factors contributing to my small stature. He wants me to get some blood drawn to check out some things and come back in six months. Since I am having surgery in two days and need all the good veins I can get, Mommy is going to find out if they can draw my blood while I am having surgery and send the results to Dr Long so I don't have to get poked twice (plus I can have it done while I am under anesthesia and I won't remember it!)
Mommy, Lucille and I then walked over to Shriner's (it's across the street from UC Davis) to take photos and xrays of my hands. I was not in any mood to have photographs taken and had to be held down. One benefit of all the tears, though, I got a beanie baby dog named Crinkles to take home with me. I was much more calm for the xrays! Mommy and I had gone up alone to get the photos and I kept signing something - eventually Mommy realized I was signing Lucille's name sign (an L with the sign for nurse). I wanted to know where she was!
Outside of Shriner's we ran into Jeannette who was the nurse in the NICU that helped my parents with a lot of the training on my trach and g tube. She was sick during my last craniofacial panel appointment so we hadn't seen her in quite awhile. I have gotten so big since the NICU days!
Right before bedtime tonight, I got a big surprise when my Papa Smith showed up! He has come out to visit me for my surgery. He was a big help when I had my jaw distraction and I was all excited to show him how much more I can do since he saw me at Christmas. My brothers remembered him too, Chili took to him right away. Henry was a little more standoffish -but then Henry is that way with everyone. With all the excitement of Papa showing up I was in no mood to go to sleep and it took me until almost 10 pm. I need my rest, though, with surgery coming up Thursday morning.
Since Daddy accidentally deleted a picture Mommy took of me today after I ate my green Playdoh there is a video posted instead of me dancing at the NICU on Sunday. I really can groove!
Relief! The temperature finally dropped enough that I could spend some times outdoors this evening. Although it was still warm there was a nice breeze. After the tantrum about the new shoes a few weeks ago, I am now a fan of them. Aren't they cute? Great for walking around in while keeping my toes cool. I'm such a good walker now that Mommy let's me explore a little in the bushes in the front yard - keeping a close eye out for bees and wasps. I also like to walk on the sidewalk and up and down the driveway. It's hard to run the camera and watch me at the same time but Mommy is getting pretty good at it!
It was a busy day! Today was the UC Davis NICU reunion party - they called it Miracle Island and it had a Survivor theme. With temperatures in the mid 90's by the time we arrived and it being outside under a big tent we felt like surviors by the time we left! We got our name tags and grabbed a seat to eat some lunch. We were right on time and a few people started straggling in. With over 1000 graduates invited there was a very small turn out but I still had fun. I swigged off of Daddy's coke while listening to the band. Evenutally, I got down on the ground and started grooving to the music - who cares if no one else was dancing! Before we left we got a family photo complete with me in a Bermuda hat. I was getting overheated really fast and with surgery coming up in less than a week my parents didn't want to risk it so we didn't stay very long. By the time we got home I was nice and cool again and ready to show off my new skill - climbing onto the couch! My parents are in lots of trouble now!
I am quickly wearing out my welcome with my brother, Henry. He jumps up on the chair and I poke him so he moves to the other side of the chair and I poke him again. He then gets down on the floor and I chase him around. Why am I chasing him? Because Grandma Smith showed me how to play with his toes when she was out last week and now I can't get enough of those cute toesies!
