Saturday, February 28, 2009

Saturday, February 28th, 2009

Sarah wanted to come by to play with me again today so Mommy and Daddy got to spend some time together. Because I liked pulling the car on the rope that Spencer had so much, they went looking for a car for me. They ended up with a cute bus that Daddy put on a rope and fashioned a handle for me to pull it. In the evening after Sarah left, Daddy pulled out the bubbles for me!
Peyton Nicole Smith

Friday, February 27th, 2009

I am 18 months old today! My parents can't believe it - the time has gone by very fast. Today I had music therapy with Spencer. Although I liked the singing and the guitar I spent a lot of time walking around and playing with my toys. When Spencer started singing about a train I got up to show him my ABC Train. When he started singing "Twinkle Twinkle Little Star" I walked over to my house and turned the wheel until it started playing. Let's just say I was a little distracted! It didn't help that in the middle of the session a delivery man showed up with my pulse ox machine. Since I am such a social butterfly I had to go to the door with Mommy and wave at the delivery man when he came in and when he was on his way out. We take a week off next week so Mommy is curious to see how I do next time around!
Peyton Nicole Smith

Thursday, February 26, 2009

Thursday, February 26th, 2009

Mommy got a hold of the company that makes my feeding pump today and they are going to overnight a loaner so we don't run into a problem over the weekend. Yeah! The DME company is also going to come out tomorrow to replace the pulse oximeter machine. Yeah! My parents are feeling much better about things that's for sure!
After 16+ months, Lucille has decided that she is no longer going to work the Saturday night shift. Thankfully, she still wants to take care of me during the week while my parents work. Starting this weekend, Carol Lee will pick up her shift and work Friday & Saturday nights while Nicole will work Sunday-Thursday nights. My parents are just happy that I am fully staffed as far as nurses!
Peyton Nicole Smith

Wednesday, February 25, 2009

Wednesday, February 25th, 2009

Things just didn't seem to go right today. It started last night, actually, when my pulse oximeter machine (it monitors my heart rate and oxygen saturation levels) continued to show that my heart rate was too low and alarmed off constantly. It has been happening for several days so Mommy called the DME company to report the problem. After 15 minutes on the phone going through various "fixes" they finally agreed that it was a problem when the lead was not attached to anything or anyone and came up with a oxygen saturation level of 86% and a heart rate of 160! The RT said she would get with their warehouse manager and get back with Mommy and shocker - they never called back. So it's going to be another night with a broken pulse ox machine. Luckily, Nicole keeps a close eye on me since she can't trust the machine right now.

I was just not in the right mood for feeding therapy today with Karen. I threw several spoons at her and was all together unwilling to participate for most of the session. At the end, Mommy let me down from my highchair and gave me a Gerber puff. Now yesterday I ate like 15 over the course of an hour with no problems. Within a few seconds of eating it, though, I was off watching my Signing Time video and started gagging and then threw up everything I had just eaten during feeding therapy. Karen thinks it may be a situation where I was so busy paying attention to the video that I wasn't paying attention to what was in my mouth - thus the gagging and vomiting. To be safe, though, she wants my parents to keep a close eye on me with eating anything that is not crushed up.

When it came time for my last feeding of the day, Mommy tried to turn on the machine but the on/off button didn't seem to work. Daddy came home a few minutes later and he tried as well. He decided the button seemed to be broken so Mommy called the after hours line for the manufacturer. While she was on the phone she was able to power it on but it was really hard. I went ahead and got my feeding but trying to turn it off was even worse. The manufacturer said to call back during normal business hours tomorrow to see if they could send us a loaner while ours gets fixed. So that's two out of four of my machines that are on the fritz - my parents are hoping this is not a sign of worse things to come!

Peyton Nicole Smith

Tuesday, February 24, 2009

Tuesday, February 24th, 2009

After spending some time playing with Terry today, Mommy let me have some peach Gerber Puffs. I have become so much better at eating that I can eat a whole one. In fact, I probably had about 15 tonight with no gagging or anything. Mommy told me that before she would give me another puff I would have to open my mouth and show her I had finished the one I already had. You can see in the video that I have gotten pretty good at following directions.

Peyton Nicole Smith

Monday, February 23rd, 2009

My parents aren't sure what to use as my name sign. Usually a name sign is given to someone by another deaf person. It is most often the first letter of the name combined with a trait of the person. So maybe M for Mommy combined with the sign for crazy (just kidding Mommy). Since I am not old enough to give myself one my parents have gone back and forth on what to use. Initially, the thought they would use the letter P with the sign for peanut since they call me peanut a lot. Then they saw that the sign for nut could be considered offensive (flicking the front tooth out away from the body). Since I am certainly a princess, Mommy thought that might work. It is like making the sign for a beauty contestant's sash. So my parents could combine the sign for P with the princess sign. What do you all think?

Peyton Nicole Smith

Sunday, February 22nd, 2009

I have told you in the past how much I love the Mommy & Me DVD's. The second in the series has the song "If You're Happy and You Know it" and it is a personal favorite. I clap my hands and stomp my feet along with them. Since I can't really shout "Hooray" Mommy has me throw up my hands when it gets to this part!

Peyton Nicole Smith

Saturday, February 21st, 2009

This is what my "room" looks like after a few minutes of playing. Toys everywhere! Daddy lets me leave them out but it drives Mommy crazy so normally she is a few steps behind me cleaning up after me. Daddy said I am becoming just like her. When I walked by my kitchen today I bumped it and the cordless phone fell off the shelf. I walked over, picked it up and put it back where it belongs!

Peyton Nicole Smith

Friday, February 20th, 2009

Such a fun day! Spencer came back this week with toys and played with me. He was very impressed with all the signs I know - animals, colors, etc. There were a few issues of miscommunication. He asked me to pick up the orange toy and he meant the toy in front of me. I got up, walked over to my food basket and picked out the plastic orange for him. He asked me to point out the shirt - again, he meant the shirt in front of him. I walked over to my dresser and pointed to the drawer where all my shirts are kept. Daddy told Spencer he needs to be very specific!

My new Friday night nurse started today, her name is Carol Lee. She watched me a few times at night when I had just come home from the NICU. It has been a long time and she was amazed at how big I have become! I was very good for her for her first night back with me. I'll save all the hijinks for later!

Peyton Nicole Smith

Thursday, February 19, 2009

Thursday, February 19th, 2009

I am such my Daddy's girl - I love looking through the Cabela's catalog! Too bad Daddy didn't get a chance to look at it first before I started ripping it up!

Peyton Nicole Smith

Wednesday, February 18, 2009

Wednesday, February 18th, 2009

How can one small baby with such a small amount of food make such a big mess? If you find out let my parents know because they can't believe the amount of wipies they go through after one of my feeding sessions!

Peyton Nicole Smith

Tuesday, February 17, 2009

Tuesday, February 17th, 2009

It rained all day today! Such a wet, dreary day. Kiersten was supposed to come today to teach me more sign language but she was sick so will come in a few weeks instead. While Mommy was fixing dinner I had some "eating" time. Today it was pureed mac n cheese, pureed pears and crackers. When I saw Mommy making dinner with spaghetti sauce I requested some of that too. My favorite was the mac n cheese though - I asked for seconds and thirds!
Peyton Nicole Smith

Monday, February 16, 2009

Monday, February 16th, 2009

Another day - another food combination. Today it was cheese spread, goldfish crackers and pureed pears - mmmm good! You can see by the big smile on my face that I don't mind them all being mixed together!

Since Mommy had the day off she had time to work on a little project she has wanted to complete for a while. She printed off photos of my uncles, aunts, cousins and grandparents and posted them above my crib. Now every day my parents will go over who all the people are in my family. Tonight when it was time to go to sleep, Mommy had me wave goodbye and blow kisses to them all. She says I should sleep good every night with so many people who love me watching over me!

Peyton Nicole Smith

Sunday, February 15, 2009

Sunday, February 15th, 2009

I really like to eat! I may not eat very much but I like to try just about anything. Here I am eating a mix of whipped cream, ice cream and crushed up Goldfish crackers - I am going for that sweet and salty mix!

Peyton Nicole Smith

Saturday, February 14, 2009

Saturday, February 14th, 2009

This is all I got for Valentine's Day?

I am so sad Mommy!

Wait - you didn't tell me it was candy!

Mmmmm - candy - good!
Valentine's Day dawned bright and early - Mommy was up at 5:00 so she could send Daddy to bed and I was awake by 5:30. While Daddy was sleeping, Mommy let me open my present - a tin with candy jewelry. I didn't get it at first and wasn't all that excited but as soon as Mommy showed me how to eat it I was very happy!
Peyton Nicole Smith

Friday, February 13th, 2009

I got to meet my music therapist, Spencer, today. He just came to interview Mommy this time but he promises to come back the next few weeks and play with me. I was very good and ate my frozen fruit while he asked Mommy questions.
With Valentine's Day tomorrow we got a couple deliveries today. I got a box from my Grandma and Papa Smith with a cute outfit and Valentine's cards. Aunt Kristin and Uncle Lonnie also sent a basket of caramel apples and chocolate covered oreos for my parents. Thanks!
For the time being, Daddy is going to be my Friday night nurse. My parents aren't entirely sure if Nicole can't work Friday's or if the agency won't let her but for now Daddy doesn't mind being my nurse one night a week. So Mommy went off to bed with my furry brothers and Daddy and I hung out tonight until I fell asleep.
Peyton Nicole Smith

Friday, February 13, 2009

Thursday, February 12th, 2009

Less than a week after the ENT appointment at Stanford, it was time to return for my follow up with Dr Schendel who did my jaw surgery. I watched some videos on the way down and then took a long nap. Shortly after waking up we had arrived and I got to stretch my legs in the waiting room for a little while. I love my pink shoes and although they are a little bit of an adjustment compared to bare feet, they make a great sound on the floor when I am walking! We got back into a room and I kept poking my head around the corner to look down at the hallway at the doctors and other patients. A few minutes later, Dr Schendel arrived. He put his fingers in my mouth to stretch my jaw (I hate this part) but it was over soon and I got to pick some stickers to take home for being so good. Dr Schendel said that my parents need to keep at the jaw stretching and come back in June. At that point my jaw bone will be a little more mature and he will make a decision about potentially doing another distraction at the end of the summer or waiting until next year. Lucille, Mommy and I got back in the car for the long ride home. Thank goodness for the portable DVD player - I watched about 5 DVD's and about the time I was sick of them we got home. Daddy had a late sales meeting so Mommy put me to bed long before he got home. I'll make sure and give him extra kisses in the morning!
Peyton Nicole Smith

Wednesday, February 11, 2009

Wednesday, February 11th, 2009

It was a memorable feeding therapy appointment today. I love to eat smashed up crackers and cookies but I haven't been as willing to try pureed foods lately. My feeding therapist, Karen, brought out the bubbles and as soon as I would taste the ice cream on my tray she would blow some for me to pop. It only took me a few seconds to figure out the drill and the melting ice cream was soon gone from the tray. About that time, Mommy got called away when the washing machine showed up so Lucille and Karen kept on with the bubbles. They started raiding the cupboards and fridge to see what else they could get me to try and ended up with whipped cream (I am my mother's daughter after all) and Karen mixed up some vanilla pudding. When Mommy came back about 15 minutes later, I had finished off the whipped cream and was about through the vanilla pudding. Now Karen wouldn't let me have very much but it was the most she has ever seen me eat - about 3 teaspoons in total. I was such a good eater today!

It was a day to celebrate - the washing machine was finally delivered! Mommy was so happy and has gotten through 8 loads already with a few left to go before she is caught back up. The new washer is pretty quiet and since it is a front loader it's much more interesting then the last one. In the evening, Mommy, the doggies and I sat in the laundry room and watched the clothes and water spin around. Yes, this is the excitement of the Smith household - you're jealous aren't you?

Peyton Nicole Smith

Tuesday, February 10, 2009

Tuesday, February 10th, 2009

Nicole started working as my night nurse last night - yeah! My parents were very happy to get back to a more normal sleeping routine. I was very good for Nicole and only woke up once. Around 4:30 am I sat up, looked at her and then just as quickly fell back onto my crib mattress and fell asleep. My parents warned Nicole about this - it usually happens at least once a night. Nicole got all excited thinking that I was waking up and she would get to play with me but I tricked her!

Today Terry, my special education teacher came by to play with me. She came bearing gifts - a Super Talker communication device. The one in the picture above is gray but mine is purple. It has multiple levels of pictures that can be set up with voice output. This way I can communicate with people who don't know sign language. We are going to start with 4 pictures right now. Mommy did some research tonight and was able to download free trial software of BoardMaker Plus to print out the picture templates to use with my Super Talker. Eventually I may move on to a more sophisticated machine that is like a small computer but this will work for now.
Terry also brought supplies so I could make Daddy a valentine using red paint to make handprints. Despite Mommy and Terry painting their own hands red I wasn't in the mood. Mommy thinks I felt a little cheated because they put me in my high chair to play with paint and I wanted to eat instead!

Peyton Nicole Smith

Monday, February 9, 2009

Monday, February 9th, 2009

I had expected to wake up to my new night nurse, Nicole, this morning but it was Mommy instead. Daddy actually stayed up with me but Mommy sent him to bed around 5 am for a few hours of sleep before he needed to get ready for work. My parents aren't sure why Nicole didn't make it last night but hope to find out something more today.
It's been six months since my last cardiology check up and Mommy learned something from the last two times - bring a DVD from home to keep me entertained during my echocardiogram since it takes 10-15 minutes. Mommy packed up all my favorite Baby Signing Time videos and Lucille, Mommy and I headed to UC Davis. We were a little early but they were able to get us in early which was great! First I had to have an EKG. I didn't really mind until they had to pull off the 10 "stickers" and it hurt! Next it was time for my measurements - naked I weighed in at 18 lbs. 8 ozs. Before my echocardiogram, Dr Choy came by to say hello and see if Mommy had any questions. She asked him if he had any concerns about VitalStim with my heart condition and he didn't see a reason it would be a problem. Shortly, Mommy and I (with the Baby Signing Time DVD) moved to the echocardiogram room. I sat down next to Mommy on the bed with my lovie and for the next 15 minutes was a perfect angel watching my DVD while I had my echocardiogram done. Mommy was so impressed and so was the technician. She has done all three of my echocardiograms and she has got to see my grow up to be such a big girl. After she was done, we headed back to the exam room to meet up with Lucille and wait for Dr Choy. He checked out the results of the test and changed my diagnosis from "mild to moderate insufficiency" to "mild insufficiency". Before Mommy could ask he let her know that it didn't necessarily mean that my heart has improved - it could just be the difference in how it sounds and looks from day to day. Mommy was just so thrilled that it hadn't gotten any worse! So for now there isn't any restrictions or changes and I just need to come back again in six months for the same round of tests. I am getting to be an expert at this!
I love the story that came along with my potty chair. It's pretty funny to hear Mommy read it to me - lots of excited talk about Prudence and her Wee-Wee and Poo-Poo! I can't help but get excited too so when Mommy asked me if I wanted to sit on my potty today I took her up on it. I stayed on for quite a while - even reading my potty book while sitting on it. Since I have cried in the past when Mommy puts me on my potty it seemed like a good sign to her!
Peyton Nicole Smith

Sunday, February 8, 2009

Sunday, February 8th, 2009

After all of the running around of the last few days it was nice to spend some time together with my parents and brothers. It wasn't a very exciting day - just the kind my parents like!
Peyton Nicole Smith

Saturday, February 7th, 2009

Daddy was my night nurse last night and I was a very good girl. Today, Sarah came to play with me and we had a good time. After Sarah left in the evening, I played with my parents and my furry brothers. I am discovering my voice and even without a speaking valve I can get pretty loud as you can hear in the video!

Peyton Nicole Smith

Friday, February 6, 2009

Friday, February 6th, 2009

I woke Mommy up bright and early this morning at 4:15! It wasn't too bad, though, because by 5:30 my parents needed to be up anyway to get ready to go to Stanford for my follow up ENT appointment. We were on the road by 7:00 and a little early for our 10:20 appointment. I played in the waiting area quietly until we got called back to the room around 10:45. A few minutes later, Dr Messner, my ENT came in to talk with my parents. She tried to look in my mouth despite my best efforts to keep her out of it!

At this point, I am not a good candidate to get my trach removed. Despite my jaw distraction less than a year ago, I am quickly outgrowing it and my jaw is still very small. Overall, I am also not very big which means my airway isn't growing as fast. I also don't eat much successfully and won't wear my speaking valve as much as I should. Dr Messner would like me to be a little older and a little bigger before trying to take the trach out. Dr Messner recommended that I go ahead and have my hand surgery in May and then come back in June for a follow up. Since I am seeing Dr Schendel who did my jaw surgery for a follow up appointment next week, Dr Messner would like to see if he wants to do another jaw distraction this summer. If so, when they take the distractors out she could have a scope performed while I am under anesthesia already to see what my airway is looking like. If he wants to wait on the jaw distraction until next summer then it's unlikely I will grow enough before this summer to get the trach out without another distraction. My parents weren't really surprised by what she had to say but Mommy had been holding out hope that maybe my trach could come out this summer so she was pretty disappointed at the news. I don't mind my trachy so if I have to have it for a little longer I don't mind!

Tonight Mommy should be able to get a good night's sleep since Daddy will be my night nurse. Let's see what trouble I can get in to!

Peyton Nicole Smith

Thursday, February 5th, 2009

Due to issues with sleeping, my night nurse Marianne will no longer be coming to take care of me. My new nurse, Nicole, was supposed to start last night but there was a little mix up and now she won't be starting until Sunday. So that leaves my parents to be my night nurse for the next few days. Mommy stayed up last night and I was very good for her - slept all night long. Around 5:30 this morning I woke up happy and ready to play. Within minutes of hooking up my feeding, though, I started gagging and a few minutes later the vomiting began. It was very strange though, instead of throwing up my formula it was all yellow. Despite turning off my feeding, I continued vomiting off and on over the next hour. As Daddy was leaving for work and Lucille was coming to take care of me, Mommy called the Nurse Advice Line to get some feedback. They confirmed Mommy's worry that I might have an intestinal blockage and the yellow meant I was vomiting up bile - not a good sign. Mommy held me for about 45 minutes while I slept and then when I woke up it was like nothing had ever happened. By this time, my pediatrician had called Mommy and let her know that if the vomiting continued she needed to take me to the ER right away so they could do an xray of my belly. When it came time for my next feeding, Lucille gave me a little Pedialite and I kept it all down without a problem. By 10:00 it was time to leave to go get my Synagis shot. Since I was doing so well, Mommy didn't think it would be a problem. While sitting in the waiting room I checked out all the other kids and one little girl - just a few years older than I am - was fascinated with me. Before I knew it, she walked up and touched me on the nose. Mommy thinks she was trying to aim for my trach but missed! You should have seen the frowny look I gave her but at that moment she got called back. When it was my turn, I got down to nothing and got a weight - 18 lbs. 6 ozs. Then it was time for my shot and although I cried a little I was over it pretty quickly. When we got back from my appointment there was a message from my pediatrician. She had tried to get a hold of the office we went to for the shot to see if they could do an xray while we were there but she just missed us. She advised Mommy to give me a suppository because she was pretty sure I really needed to go potty. Within about an hour of it, Lucille reported that I had finally pooped. By then I had already been taking 1/2 soy milk and 1/2 pedialite so Mommy figured I was well on my way to recovery. Just another reminder that with the soy milk my parents need to keep up on the Miralax with me so we don't have this happen again!

By the time Daddy arrived home tonight he found a much happier girl then when he left. Now when I hear the dogs bark and run down the hall, I know that means that Daddy is coming home from work and I walk down the hall as quickly as my little legs will let me so I can greet him too. I love my Mommy but Daddy is my favorite!

Since there is no night nurse again tonight, Mommy is going to stay up with me and try to catch a little sleep when she can. I will try to be easy on her.

Peyton Nicole Smith

Thursday, February 5, 2009

Wednesday, February 4th, 2009

After a few weeks of waiting, my custom designed shirt to hold my feeding pump and bag was delivered today. The great people at customized a shirt they already made for kids with g tubes to act as a makeshift back (and front) pack for me. There is a pocket in the back for the pump and a pocket in the front for the feeding bag - distributing the weight more evenly for me. Mommy will play with it more this weekend. Mommy also ordered the Bundie Bunny - my very own bunny with a Mic-KEY button just like me!
Peyton Nicole Smith

Wednesday, February 4, 2009

Tuesday, February 3rd, 2009

After three cancellations, my scoloiosis clinic appointment at Shriner's actually happened today. First, they got a weight and height on me. With clothes on I was 19 lbs 7 ozs and 29 inches long! Then the doctor came in and felt my back and sent me for xrays. Sure enough, my parents were right. The area on my lower back I had a small curvature in my spine. The doctor estimated it to be between 11-15 degrees. Over 10 degrees is considered mild scoliosis. The doctor wants to see me back in a year for another round of xrays to see if it is getting any worse. There is the possibility I will grow out of it but he would be much more concerned if at my age the degree was higher - like in the 50-60 range. He doesn't think this will impact my development in any way and told Mommy not to worry too much about it since I have so many other things going on : )
My Aunt Kristin sent a special present to me for Valentine's Day. Mommy was supposed to wait to open it but it arrived with some other packages for me that contained medical supplies so she opened it on accident. Grandma and Grandpa Mower got me a boy Cabbage Patch doll last Christmas named "Payton" so this is my second Cabbage Patch doll. This one is very special. First, her birth certificate says her name is Peyton Nicole and she was born 8/27 - just like me! Also, she looks exactly like the same Cabbage Patch doll my Aunt Kristin had when she was a little girl! Now I have a boy and a girl Cabbage Patch named Peyton - I thought it was a pretty cool name!
Peyton Nicole Smith

Tuesday, February 3, 2009

Monday, February 2nd, 2009

I am soaking wet on the front of my shirt because I am a big girl and want to drink water out of a cup on my own - I don't need any help!

Today I had an appointment with Michael, my PT. As usual, I am much more interested in playing on my own then doing what he wants me to do. But when he walked in, I was very excited to show him my new potty - I think it is pretty cool (even if I don't want to spend any time sitting on it yet)!

Peyton Nicole Smith

Monday, February 2, 2009

Sunday, February 1st, 2009

Just like most of America, here I am eating and watching the Super Bowl. OK, so I really don't eat much but a few crumbs still counts!
Peyton Nicole Smith

Sunday, February 1, 2009

Saturday, January 31st, 2009

Not a lot going on today, just relaxing and everyone got naps - Mommy, Daddy, me (2) and the doggies (too many to count). The perfect Saturday!
Peyton Nicole Smith