Monday, August 31st, 2009

After the last Vital Stim appointment a few weeks ago, Mommy did not have high hopes for the appointment today. It started a little rough because although I left the electrodes on I kept wanting to pull them off. Mommy distracted me with some bubbles and eventually I forgot about them. First I watched a little of my new Baby Babble video but then I moved on to watching videos of myself on Jan's iPhone. That sure got me talking even without my speaking valve on! I think Jan was pretty impressed with my talking voice and how loud I can get. She is hoping that the speaking valve that I use might be helpful to some of her adult patients who don't tolerate the Passey very well either.

Peyton Nicole Smith

Sunday, August 30th, 2009

Because of the heat of yesterday, my parents hadn't planned on going to the park today but it ended up being cooler then expected and there was a brief time when both Jackson and I were awake at the same time (shocker!). We all quickly got to the park while everyone was still in a relatively good mood and spent a few minutes feeding the ducks and squirrels and running around together. Jackson soon needed a nap so after a quick lunch we both went down for our naps. A few hours later I woke up but Jackson, Aunt Kristin and Uncle Lonnie were on the way to the airport to head back to Salt Lake. I was very sad to see them go (although it is nice to have my toys all to myself again)!

Daddy reorganized our front room so now I have a great play area with some of my new toys. Then it was time for another big moment - my first bath alone in the bath tub. I have been using a baby bath up until now with a few dips in the tub with Mommy. But now I am two and I have new tub toys, a bath mat and a spout cover to keep me occupied and safe. It went pretty smoothly if you don't count the little bit of water down my trach when Mommy was rinsing out my hair (oops). I am just getting so big!

Peyton Nicole Smith

Saturday, August 29th, 2009

Despite 100+ weather, the six of us headed to Fairytale Town to burn off some energy. We visited all the resident animals - three blind mice, Eyore the donkey, three little pigs, etc. They were about as happy as we were to be out in the blazing sun. But when we went up Jack and Jill's hill we found a little water to splash and cool off in and then side by side slides that Jackson and I could go down together. Even with a little cooling off it wasn't long before we decided to go find some air conditioning. We were all a little hungry so we made it to the food court at Arden Fair Mall. After a little mexican it was time for everyone to have a nap but not before we stopped at the frozen yogurt shop. I got a little chocolate milkshake in my cup on the ride home and loved it!

Jackson and I went down for a long afternoon nap and then it was time for a quick dinner and I finally got to open my presents! I had already got to open a few over the course of the last few days but today I got to open the rest. There were so many fun presents but my favorite was a stroller for my baby doll from Karen. But I wasn't the only one who liked it and as soon as I would turn my back Jackson would take off with it! I got a Barney doll from Grandpa & Grandma Smith that sings but my parents were really surprised when I wanted nothing to do with it - espescially since one of my very favorite videos is Barney. That's okay because Jackson loved it and as long as I was across the room I would dance when Barney sang but I didn't want him to get too close to me. When it was finally time for bed, I threw a little fit because I didn't want to stop playing with my stroller. Mommy parked it in front of my crib and promised me I would get to play with it first thing in the morning. It better be there when I wake up!

Thanks for all the cards and gifts - I am a very lucky girl that so many people love me!

Peyton Nicole Smith

Friday, August 28th, 2009

We were so busy today! Daddy had to go to work so Mommy, Aunt Kristin, Jackson and I were on our own most of the day. I had my 2 year check up with the pediatrician so Mommy and I went there while Jackson and Aunt Kristin kept the dogs under control (barely). I was really good for Mommy until it came time to get my two shots and the flu mist vaccine. Mommy held me down but within seconds I was done crying and ready to start playing again. On the way back to the car I took off my speaking valve and Mommy didn't notice until halfway home that it was gone. It took so long to get one the first time that Mommy was really stressed but the DME company said they had an extra one so Daddy will pick it up for me on Monday. Whew!

I was only home for a little while and then it was time for my final music therapy appointment. Now that my hard of hearing teacher is off of summer break she got to join us too. We had a lot of fun and Spencer gave me a kazoo and some shakers to remember him by. I was sad to see him go but so tired that I went right down for my nap. While I was asleep Mommy rushed to finish putting my kitchen together. Jackson and I both played with it while we waited for Daddy and Uncle Lonnie to get home so we could have dinner. Then it was more playtime before heading off to bed. Before getting in my crib, Aunt Kristin took some time to show me how to make a mojito - I am two now after all!

Peyton Nicole Smith

Thursday, August 27th, 2009

Happy 2nd birthday to me! When I woke up from my afternoon nap I got a surprise - Aunt Kristin and Jackson were waiting for me! While I was down for my nap, Mommy went to get them at the airport. I eyed him for a little while but it didn't take long before I was running around after him because I thought he was the coolest thing ever!

Lucille got me an instrument set and a small piano for my birthday and Jackson and I loved playing with them. We even did a really good job of sharing the toys - he would get one drum stick and I would get the other. Because Uncle Lonnie doesn't fly in until tomorrow night we are going to hold off doing much celebrating, although Aunt Kristin let me open a few books tonight. Right before I headed off to bed Uncle Jeff came by with his present - a great big kitchen! After everyone was in bed, Mommy started to put it together but this one is going to take a drill so it will have to wait until the morning to get finished.

Compared to last year - this birthday was great!

Peyton Nicole Smith

Wednesday, August 26th, 2009

Mommy reintroduced my Shikani French speaking valve to me today. I have a long and not very positive experience with speaking valves. My parents tried for about a year to get me to use the Passey Muir valve. Although they modified it with holes and I would use it a little, I never really liked it. Then it took them a while to order a special speaking valve - the Shikani French. After all the fanfare of waiting for it, I tolerated it a little better but still wasn't interested. In the last few months, though, I have started a lot more vocalizing either by covering my trach or just from the air leak around my trach. Monday while waiting for the otologist Mommy had to shush me because I was so loud with my vocalization. Since I am becoming quite the talker Mommy decided to pull out the Shikani French again and give it another go. Man on man she wasn't prepared for how much I had to say and how loud I was!
You can see a few of the videos above. Not only is my volume increased but with the valve on I was almost constantly vocalizing and my vowels like "o" are much more distinct. Mommy was thrilled. I even was drinking with it on and coughing without freaking out. The only problem? With it on I become booger girl - initially it started with bubbles coming out of my mouth but then it moved up to my nose and I had serious boogers. Mommy thinks most of it was from when I was drinking and didn't quite know what to do with all the secretions. She is hoping that with practice all of this will improve - otherwise the kids at preschool will remember me not as trach girl but as booger girl!

Peyton Nicole Smith

Tuesday, August 25th, 2009

The photos are a little fuzzy but here I am at Chevy's for the Music To Grow On fundraiser. Now we almost didn't make it because for some reason Mommy kept thinking it was at Chili's and so that is where we ended up. But Daddy noticed the address wasn't correct so we got back in the car and headed to Chevy's just down the street. The place was really busy with almost a half hour wait (good sign!) and while we waited a clown named "Pinky" made me a pink balloon cat. I liked the balloon but didn't much like her. In fact as long as she was close by I wanted to be on Mommy's lap and I watched her like a hawk.

When we finally got seated who should show up but Pinky as she made balloon animals for the table next to us. I made Mommy keep hiding me behind the big menu but every once in a while I would sneak a peek at her. Eventually she finished up and I was comfortable to get back into the high chair. Mommy had brought a few toys and snacks for me so I was pretty well behaved and right before dinner was served Spencer came over to say hello. By the time we finished up it was close to 8 pm so no bath tonight and right to bed when we got home.

Peyton Nicole Smith

Monday, August 24th, 2009

Armed with my CT scan, Dr Diaz was ready for me this morning for my otology appointment. I think he thought he was the bearer of bad news when he told Mommy I was a poor candidate to have my ear canals repaired. My parents had been told that before, so she wasn't upset at all. Dr Diaz showed Mommy my CT scan and explained that I have a very small middle ear and the ossicles are not formed. In addition, the canal from my middle ear would have to be built to my outer ear. My ears are low set so the smallest length from point a to point b would end up at my jaw - not at my ear. Therefore, the ear canal would have to be longer then is optimal to have it end up at my outer ear. Were they to be able to rebuild my ear canal and middle ear best case scenario I would only end up iwth 40-50% of normal hearing. With my BAHA's now on the softband they estimate I have about 80-85% of normal hearing and when the BAHA's are implanted when I am older it should be closer to 90-95% hearing.

So knowing that an ear canal repair was not a good option then Mommy wanted to discuss implanting my BAHA. UC Davis likes to wait until kids are about 5 before starting the process. It has to happen in two stages. The first step is to implant the titanium piece underneath my skin and attach it to my skull. Then about six months later after it has had time to grow into the bone they will attach the outer piece that my BAHA will snap on to. Each surgery is only about a half hour under anesthesia. Since my parents are shooting for me to get my trach out by the time I start kindergarten at 5, Dr Diaz is recommending that I come in when I am 4 to have a temporal scan. Then if the bone looks good, at about 4 1/2 he will do the first part of the surgery and then the second part six months later. Since I am having another jaw distraction this year and my second hand surgery on my left hand is scheduled for next summer then the BAHA surgery was the only other on the timeline at this point that we wanted a trach in place for. If all goes well I could try for decannulation after the second BAHA surgery. It all sounds good in theory now we'll just have to wait and see how it all ends up!

Peyton Nicole Smith

Sunday, August 23rd, 2009

I may not eat pancakes but I sure do like playing with them! Iwas in the mood to be held while Mommy was trying to make breakfast so she decided to make me my own Peyton size pancake. She put it on my table and got me my play spatula and showed me how to flip it. The best part, though, was feeding it to my furry brothers after I was done playing with it!

Peyton Nicole Smith

Saturday, August 22nd, 2009

Based on the fact that I had done so well last night after the CT scan, Mommy was surprised when Carol told her that around 4 am this morning I sat up in bed, started crying and then vomited in my crib. Before she had a chance to change out the bedding, though, I laid back down and fell asleep. I woke up for good around 6 am and started dry heaving so for the first feeding of the day, Mommy gave me Pedialite instead of formula. But I was a hungry girl so I started downing lots of my Silk soy milk by mouth instead. Once all that stayed down, Mommy moved me back to regular feedings and I did just fine.

My parents put me down for a nap at 11 and around noon Mommy went to hook me up for my feeding and I woke up. I wasn't running a fever but I had been sneezing all morning and my heart rate was elevated - a sign I was probably getting sick. I didn't like my nap interrupted so I started crying and that's about the time Lucille showed up. My parents went ahead and left knowing they left me in capable hands. In fact, it didn't take long for Lucille to get me back to sleep and I was out for 3 more hours!! By the time I woke up from my nap I was in a great mood and feeling much better. When my parents got home a little later I was ready to run around and play. Around 7:30 Uncle Jeff stopped by with an ice cream cake and I got to stay up really late to play. In fact, I didn't fall asleep until almost 10 pm but I went down without a fight!

Peyton Nicole Smith

Friday, August 21st, 2009

In prep for my appointment on Monday with Otology and for my jaw surgery in October - it was time for an updated CT scan. I am not to the age yet that I can do it awake so because it involves anesthesia it takes a little planning. I wasn't allowed any formula today but Mommy soon discovered that apple flavored Pedialite was a good stand in for my regular apple juice (that had too many floaties to be considered a clear fluid).

We had to be at the hospital by 1:30 so needless to say I did not get my nap in today. You would have thought I would have been grumpy but you'd have been wrong. I was crazy happy - running around the waiting room, jumping up and down, yelling at myself in the mirror. Luckily, we were the only ones in the room!

I was the last patient of the day and they were running about an hour late but eventually we got to head back to the CT room. Everyone oohd and aahd over my cute shoes but as soon as I saw the CT table the good mood was over. Finally, Mommy just had to hold me down so the tube with the anesthesia could be attached to my trach and within just a few seconds of getting the gas I was out. About 15 minutes later they had Mommy follow us as I got wheeled down to the recovery room. It wasn't long before I started waking up but man was I grumpy! Mommy held me right away but I didn't want anyone even looking at me. One of the nurses got a Wiggles video and the only time I stopped crying was when a preview came on for Barney. The nurses really hoped I would drink some juice but despite being starved I wasn't taking anything from them (well, except for the stuffed teddy bear they gave me). As soon as I was cleared to go my mood improved and by the time I got home and got some of my own apple juice I was back to normal. After a quick tube feeding and a bath it was off to bed by 7 pm because I was exhausted!

Peyton Nicole Smith

Thursday, August 20th, 2009

Sometimes I love him and sometimes I hate him and sometimes... I think my furry brother is quite the comedian!

Peyton Nicole Smith

Wednesday, August 19th, 2009

All good things must come to an end I guess. After almost a week of my tummy being back to normal I got sick this morning. Mommy had tried to increase the rate of my feeding and she's still not sure if that caused me to vomit or if it was because I needed to have a stinky and didn't. Because it was the first feeding of the day Mommy was nervous for the day ahead - I had two therapy appointments scheduled. But Mommy moved the rate back to where it has been the last few days and I was fine the rest of the day.

Mid-morning I had my feeding therapy appointment with Karen #1. I had apparently forgotten how to suck out of a straw in the course of a week but I was happy to have Karen #1 put Pixie Stix dust on my tongue. Candy is good!

After a short nap it was time for my second therapy appointment of the day - occupational therapy with Karen #2. It's been almost two months since I last saw Karen #2 as she has been out on summer break. I was a little shy around her and stayed on Mommy's lap for the first 10 minutes or so but eventually I warmed up to her. She was thrilled to see how well I am doing since my cast has come off. I even demoed going up and down the slide for her. Because Karen #2 is employed with the Sacramento County Office of Education, the budget cuts won't effect her services so I will continue to get occupational therapy the same as I did before.

Because my tummy did so well the rest of the day after dinner Mommy and Daddy took me to the park. I got to go down the slides and run all over the grass. I definately wasn't ready to go home when it was time to leave!

Peyton Nicole Smith

Tuesday, August 18th, 2009

I don't have much to complain about - tummy is feeling good these days, I spent a few hours at the park with Lucille and I got a nice long nap. With all I have to be happy about my parents are trying to figure out why I feel the need to whack my furry brothers whenever the opportunity arises. Poor Chili got hit a pretty good one by me tonight and Mommy even has it on video (she was trying to tape me dancing not beating up my brother). So that your opinion of me doesn't change she isn't going to publish it for you all to see but trust her that the evidence does exist and will be used against me in a court of law if needed.

Peyton Nicole SMith

Monday, August 17th, 2009

Another vomit free day under my belt - it probably helps that I had four stinky diapers today - a sure sign that everything is moving again!

I like to spill water all over my new table and then hit it with a wooden stick to splash the water all over me and anyone standing close by. I also spend a lot of time pouring water from one cup to another. Most times, I end up spilling most of the water but I am getting better the more I practice. During the day, Lucille is the keeper of the water, only giving me small refills of water in my cup to pour or splash with. My parents draw the line, though at splashing or pouring my juice or milk - way too sticky!

Peyton Nicole Smith

Sunday, August 16th, 2009

Because I have been doing so well on my feedings I got to go out and about today running errands with my parents. In the morning, Mommy and I stopped by Toys R Us. Grandma and Grandpa Mower had sent me a gift card and Mommy knew just what I would like. I don't have anything my size to color on, build with my blocks or play with my PlayDoh so Mommy helped me pick out the perfect size table and chairs and as soon as it was out of the box I knew just what to do with it. I went right to where my blocks were and set them on the table and started building. I also go to go to the grocery store, Kohl's and Bed Bath and Beyond. Now that I am older, though, I don't like sitting in the cart so my parents have learned to keep the outings short and sweet.

In the last few days my parents have witnessed the beginnings of my terrible two's. There have been several tantrums and they are increasing in length and they are happening more often. Today there were two - the first was when Mommy said it was time to go down for my nap and I wasn't ready. So Mommy let me have my tantrum safe in my crib. The second was when Daddy was going to take me on a walk while Mommy finished cleaning up dinner. I did't want Daddy to go, I wanted Mommy so I started having a tantrum in the stroller. In the end both Mommy and Daddy went on the walk with me. So if you are keeping score - one point for my parents and one point for me.

Peyton Nicole Smith