Friday, October 31, 2008

Friday, October 31st, 2008

Happy Halloween!! It was a terrible year for trick-or-treating as it rained most of the day but really kicked in to high gear just as it started to get dark. It was month end for both Mommy and Daddy so it meant Daddy had to stay at work longer than usual. Mommy snapped a few pictures of me in my costume so Daddy would get a chance to see me in it before bedtime. This is the second year that has happened so Mommy told Daddy to plan on the works next year for Halloween to make up for my first two. Mommy let me try a little chocolate syrup due to the occasion and my brothers each got a chewie. You can see in the picture that they will eat them right next to each other without any problems.
Peyton Nicole Smith

Thursday, October 30th, 2008

Give me a sticker and I can keep myself entertained for hours - (Or as long as it stays sticky!)
Mommy taught me a new trick today. When she holds our her hand she says, "Give me four." Now come on, I only have four fingers to give, it would just be rude to say "give me five"! Then she showed me how to hit her hand with mine. After that, everytime she would extend her hand and say "give me four" I would do it. I think it is pretty funny and Mommy thinks it is pretty cute.
Peyton Nicole Smith

Thursday, October 30, 2008

Wednesday, October 29th, 2008

After such an eventful day yesterday, it was nice today to sleep at my normal time, eat at my normal time and play at my normal time.
Mommy did get a call from Dr Davies, my GI, today. She had seen the results of the swallow study from yesterday and gave Mommy the green light to start trying me out on bolus feeds when she's ready. I still have a few more days of transitioning to my new formula but once that is done, Mommy is ready to experiment again! I just love it when Mommy experiments with me ; )
Peyton Nicole Smith

Wednesday, October 29, 2008

Tuesday, October 28th, 2008

Two busy days in a row. As of 5 am this morning I wasn't allowed anything else to eat until my swallow study this afternoon. By 10:30 when we arrived for check in I was getting to be a hungry girl. After about 1/2 hour of working out the details on what the doctor wanted and how to accomplish it - the decision was made to try giving me a few cc's by mouth to check out my swallow and then a big bolus feed by g tube to check out my reflux and motility. This required the radiologists laying me down on the xray table (at that point I knew I wasn't going to like this), taping my legs together so I couldn't kick and putting something over my body that made me feel very scared because it was so close to me (kind of like going a CAT scan machine). Then Mommy squirted some barium into my mouth from my syringe. That calmed me down for a minute because I was so hungry and really wanted to eat something! After a few cc's were in and a got a few good swallows the crying started up again though! The radiologist then put 60's cc's of barium in my g tube in just a few seconds. A few minutes later he followed it up with 30 more cc's. So within just 5 minutes or so, I had 90 cc's in my belly. Since the maximum I have gotten in the last year has been 45 cc's in an hour - this was a good test of how I would do on a bolus feed, espescially since I didn't take my reflux meds this morning. After about 20 minutes of watching to see how fast my tummy would empty, Mommy was able to pick me up. Then, every 1/2 hour for the next few hours we would have to come back for another xray. I certainly knew the drill and so Mommy had to hold down my arms and Lucille would have to hold down my legs. When it was all over and the radiologist verified things were moving through my system we were able to leave. They told Mommy that the barium is transiting through my system as it should so no motility issues. There wasn't any barium detected in my lungs while swallowing so no aspiration. (However, Mommy did notice a little coming out my trach so it is still going where it shouldn't but I am coughing it up before it reaches my lungs). There was a little reflux but nothing serious so that seems to have improved as well. At this point, I am all clear to try bolus feedings as far as the radiologist is concerned. He will send the results on to my GI and then Mommy and her will devise a plan for moving me off of continuous feedings during the day.
After such a long appointment, I gladly fell asleep on the car ride home while getting my afternoon feeding. At 3, it was time for my IFSP meeting with my OT, hard of hearing teacher, special education teacher and the coordinator for the regional center. Mommy talked with them about how I am doing and the goals for the coming year. I was a little disappointed that so many of them showed up but none of them played with me. I kept trying to get their attention too by demonstrating how well I can wash the floor with my wipies but to no avail. They said they will all come back soon to play with me though.
Peyton Nicole Smith

Monday, October 27, 2008

Monday, October 27th, 2008

I am every parent's dream child during cold and flu season - as I love to wipe my nose - whether it needs it or not. After every sneeze, out comes the baby wipe. I am even willing to wipe anyone else's nose who will let me!
Today I had my PT appointment with Michael. I was much more energetic today as compared to three weeks ago when he saw me last. If I got bored with a toy (which didn't take long) I scooted away to find something else to do. Mommy and Michael spent the hour bringing me back to where they were and trying to entertain me. What I lack in speech I make up for in facial expressions. Mommy says I am sure to be an actress because my parents know exactly how I am feeling by the expression on my face.
Both my parents think that the picture in front of the fridge I look like my Aunt Ruschelle. Maybe it is my light brown hair and blue eyes - but something reminds them of her.
Peyton Nicole Smith

Sunday, October 26, 2008

Sunday, October 26th, 2008

I am still fighting a little bit of a cold, but despite that, I was a good girl today. I played with my parents and am having a good time practicing some new things. In the last week I have learned to get from sitting to lying down, leaning to the side on both of my hands and getting from sitting up to my knees. I also got brave tonight and instead of just standing up and sitting back down on my parents lap, I decided to take off walking once I got up. With all of my new tricks, my parents have to keep a close eye on me!

Peyton Nicole Smith

Saturday, October 25th, 2008

Today, Mommy and Daddy got to spend some time together while Sarah came to play with me. I had just woken up from a later than normal nap - so while Sarah was here (12-6) I didn't sleep a wink - just wanted to play! We had a good time together and when it was time for my parents to come home I was so excited to see them. They brought me my own set of measuring cups and spoons to play with. My parents just couldn't pass them up because they were pink!

Peyton Nicole Smith

Friday, October 24th, 2008

There was a call to the Ask A Nurse this morning when I went all night with out my stinky diaper but before the pediatrician could call back, Lucille let Mommy know there was no need for an appointment. I finally had my stinky diaper - not once - but twice! Just in time, too, because I had a therapy appointment with Karen, my OT. We got to play with some new toys I hadn't seen before that were smaller in size to test out my pincher grasp with my finger.

Mommy noticed that when her cell phone rings (it plays Brown Eyed Girl) that I like to dance to it - you can see that in the video Mommy posted.

Peyton Nicole Smith

Friday, October 24, 2008

Thursday, October 23rd, 2008

Why am I holding a wooden spoon? Maybe to keep Mommy from taking me to anymore doctor's appointments today! Let's just say it was a busy day!

First, we had a 9 am appointment at the UC Davis Mind Institute for evaluation of how I am developing since I am a NICU graduate. At my weigh in with all my clothes on I was 17 lbs. 3 ozs. They had lots of fun tasks for me to complete to show how smart I am - and I did very well! The social worker who gave me the tests asked my Mommy, "Who said she was delayed?" I was very charming and "flashed" all my signs - water, doggy, baby, thank you, etc. She seemed very impressed, espescially because if my Mommy said a word I did the sign automatically without Mommy having to show it to me first. At the end of the session, Mommy was told that I am right on track in most areas. My expressive language (talking and babbling) they didn't test me on because of the trach but my receptive language skills I was only a little behind - about 11 months - but that was pretty good considering I didn't have a hearing aid until I was 6 months old! Most of my gross and fine motor skills I was right around 14 months. Because I was such a good girl for my appointment they gave me a Taggie book! Needless to say I was pretty tired so I fell asleep on the way home and slept a few hours in my crib. Before I knew it, Lucille was waking me up to take me to my second appointment of the day - my flu shot :(

Everyone at my old pediatrician's office were happy to see me - it was nice to know they hadn't forgotten me. It was over quickly and as soon as Mommy picked me up I stopped crying and picked out my toy. Since it was my very first flu shot we had to wait 20 minutes in the office to make sure I didn't have an allergic reaction. As if that was not enough excitement for one day, as we got ready to leave Lucille was going to hook me up for my feeding but Mommy noticed that my button looked loose. When she started to pull on it, it started to come out. Mommy decided to wait until they got home to check it out. Sure enough, when she tried to pull it out at home, it came right out, the balloon was empty. Mommy filled the balloon and looked for a leak but couldn't see one so she put it back in and filled it up. An hour later, Mommy noticed that the front of my shirt was wet and when she lifted it up, out came the button! This time, Mommy put in the back up button and when she checked out the old one she noticed there was a really small leak at the top where the button and the balloon meet.

The drama continued into the evening as I have gone several days without a good stinky diaper. After three doses of Miralax in the last few days with nothing to show for it, my parents decided to try a glycerine suppository. Now Aunt Kristin assured my parents that they get almost immeadiate results. 4 hours later when I went to sleep guess what, no stinky diaper. My parents are hoping that Marianne gets blessed with it tonight because if not there will be a call to the pediatrician in the morning to figure out what to do next.

Two button changes, a flu shot and a suppository. And how was your day?

Peyton Nicole Smith

Thursday, October 23, 2008

Wednesday, October 22nd, 2008

Just a few cute things I did today:
1. When Mommy asked if I was stinky I signed the word for "diaper". I know that stinky and diaper go together!
2. When Lucille came to work this morning she washed her hands first thing like she always does. I usually watch her and sign "water". Today, I put my hands in the water and then put me hand over to the soap dispenser and then put them back in the water - just like Lucille. See I am paying attention!
3. When Mommy got ready to leave me with Lucille to go to her office I signed "work". Normally Mommy uses the sign when Daddy leaves for work in the morning, but when Mommy said she had to go back to work I knew that meant the same thing!
Peyton Nicole Smith

Tuesday, October 21, 2008

Tuesday, October 21st, 2008

Last night I started on my mixed formula and all through the day today with no problems. In the afternoon, Mommy let me have some more of the Nutren from a spoon and I was very enthusiastic about licking it off with my tongue. After I had about a tablespoon or so, Mommy let me get all the last milk off the spoon on my own!

Peyton Nicole Smith

Monday, October 20th, 2008

Today was the much anticipated follow up appointment with my GI. Since my parents haven't been able to get a true weight on me for over 2 months because of my cast, they were very curious to see how I am doing. Drumroll please..... 16 lbs. 10 ozs. OK, so not as much as Mommy might have been hoping but not too bad. That extra volume seems to be helping. At my last GI appointment height to weight I was in the 6th percentile. Today I was in the 20th percentile. The GI and nutritionist were both very pleased, they say I look great.

As expected, Dr Davies said I need to move on to a toddler formula. Nutren Jr. was recommended and Mommy was very pleased with it. They come in 8 oz. cans that are pre-mixed and 30 kcal. This means that once I get transitioned over to Nutren Jr., Mommy will no longer have to play the chemist and mix powder and water to try to come up with 27 kcal. The nurses will be able to pop open a can and put it in the bag with no fuss or mess. Yeah! Since I didn't do well on 30 kcal of my soy formula, we are going to transition slowly. Starting tonight I will get 2 ozs. of Nutren to 11 ozs. of my soy formula. Every few days, Mommy will add 4 ozs. more of Nutren each day until eventually I will be on all Nutren Jr. After that, Mommy and my GI will work to start getting me back to bolus feedings during the day and reducing the volume I am taking at night. Dr Davies also gave Mommy a prescription for an ointment for my diaper rash. We will go back in six weeks to see how I am doing on my weight and my new formula.

In the afternoon, Mommy gave me some more baby mac and cheese and then decided to have me try a little of the Nutren by mouth. It is vanilla flavored and boy did I like it! After a few teaspoons of mac and cheese I took several tablespoons of the Nutren. I even signed "more milk" to Mommy because I liked it so much. Mommy was suprised that I didn't really have a lot of secretions from either the milk or the mac and cheese - so either I am learning to swallow better or it is going in my lungs. Mommy thinks I am just getting bigger and learning to swallow better. Until the swallow study is completed Mommy isn't going to give me a lot of milk by mouth but since I like it so much she will continue to give me tastes.

Peyton Nicole Smith

Monday, October 20, 2008

Sunday, October 19th, 2008

We had some more button excitement today. When it got pulled out yesterday, it must have put stress on the balloon because the balloon popped today and the button fell out. Mommy was taking a nap at the time, but Daddy is a pro and put the back up button in really fast.

My diaper rash is looking a little better. It's hard to tell if it is the butt paste, the Lotrimin or the fact that I haven't had a stinky in a few days but regardless of why my parents and I are very happy. I have an appointment with my GI tomorrow so Mommy will see if they can give me a prescription for something a little stronger to take care of it for good.

Since I have been doing so well with my extra volume of formula, Mommy is hoping for a good weigh in tomorrow at the appointment. We will finally get a weight without the cast and know for sure how I am doing.

As of yesterday I am no longer wearing my splint and you can see in the picture above I am using my hand more and more each day. I am trying to fit my feeding bag into my shape sorter. Surprise, it fits!

During my trach change tonight, my Mommy let me help her pull out my old trach so Daddy could put my new trach in. My parents tried to explain that I can only take out my trach when my parents are there and have told me it is okay. After my new trach was in, my parents let me play with my old trach for a little while. I showed my parents where it goes on me and then I showed Mommy wear her trach would be if she had one. I am a very smart little girl!

Peyton Nicole Smith

Saturday, October 18th, 2008

There was a little heat wave this week, so this morning Mommy and I were able to go on our walk. I had to be bundled up pretty good but it was a nice day. Mommy made a stop at the park and I got to go down the slide with her a few times. She put me in the baby swing but I turned up my nose at that. Instead, I wanted to sit on her lap on the big girl swing. That was a lot of fun!

When we got home I played for a little while and then went down for my nap. When I woke up it was time to get ready to go play with Sophia & Brighton. As my parents were getting me ready, there was a tug on my extension and my button popped out fully inflated! My parents quickly got it back in and we were on our way. Daddy went on to work and Kevin was playing golf so it was just the mommies and kids. Sophia has gotten so much bigger, it won't be long before she gets bigger than me. Kelly got some KFC so while Mommy was having something to eat she let me lick the gravy off a spoon. I really liked playing peek a boo with Brighton behind Sophia's bouncy chair. I also got to play with all of Brighton and Sophia's fun toys and a few hours later Daddy returned to bring us home. Mommy said I will get to see them again in a few weeks though!

After all that playing I was definately ready for a good nap. Then in the evening I played with my parents and brothers. It was a good day.

Peyton Nicole Smith

Sunday, October 19, 2008

Friday, October 17th, 2008

Today Mommy went to go get her flu shot at the local grocery store. She says a little poke is no big deal if it means helping to keep me healthy this winter.

In the afternoon, Karen, my OT came by for a visit. She said she sees a lot of improvement since last week and to keep working with me to use my new thumb as much as possible. She has great toys so I am glad she comes by so often now!

When Daddy got home from work, he read me a story while Mommy was making dinner. It is called Pretzel and it is about a dachshund that is too long! I think it is pretty funny and kept using the sign for "dog" to show Daddy how smart I am.

Peyton Nicole Smith

Friday, October 17, 2008

Thursday, October 16th, 2008

Despite using the new diaper rash ointment, things weren't looking that much better today. Mommy just keeps hoping it will improve because she knows I am hurting. In the evening, Daddy and Mommy let me be diaper-free for about 1/2 hour before bed time to help air things out. Mommy considered having me sleep diaper-free as well but is going to hold off and give the ointment a little more time to work.

Today was my only therapy free day this week so it was nice to be big to my normal routine. Even with the diaper rash I was in a pretty good mood most of the day. Mommy was able to work out with UC Davis an appointment date for my swallow study - November 18th.

Peyton Nicole Smith

Thursday, October 16, 2008

Wednesday, October 15th, 2008

Another day another therapy appointment. Today it was feeding therapy with Karen (yes, another Karen). She hasn't seen me since before my jaw distraction removal so she was very surprised to hear that I don't have a cleft palate. Mommy is waiting for UC Davis to call with an appointment for my modified swallow study. Karen provided her with a list of things to bring as well as a list of questions to have answered from the results of the test. I ate a little bit of flavored apple sauce and was very interested in feeding myself rather then having Mommy feed me. It was fun but got to be a little messy and I got bored pretty quickly. Karen is hopeful that I will be able to get enough good swallows in to get some results back so we have a better idea of how to move forwarding with the feeding therapy.

Daddy got a call from Stanford Genetics today letting him know that the chromosone breakage test that was done was negative for any chromosomal issues. My parents and the geneticists weren't expecting to find anything so it wasn't a surprise to them. At this point, the genticists will send a final summary based on their exam and the two tests that were performed.

After the advice of other mommies - Mommy ran out and got the Butt Paste diaper rash ointment tonight and instructed Marianne to start using it right away. Here's hoping the diaper rash gets better! Mommy let me take a rest yesterday from using my speaking valve and the bleeding stopped. So from now on my parents will watch it closely and start giving me some rest times during the day from the valve and adding some saline to my trach if I sound dry. Other trach mommies said this has happened to their kids as well and not to be alarmed.

Peyton Nicole Smith

Wednesday, October 15, 2008

Tuesday, October 14th, 2008

Not a lot to report. Karen, my OT, wasn't able to make the appointment today so it was just me and Terry playing together this afternoon. She brought some new toys for me to check out and I did a pretty good job using my hand to manipulate them. Terry will see me again in a few weeks.

I had kind of a rough afternoon because I have a bad case of diaper rash. Even with quick diaper changes and lots of Balmex I got to the point it was so irritated there was bleeding. Mommy felt so bad! Then, my parents noticed I also had blood coming out of my trach. It wasn't very much but very unusual for me. Mommy thinks it may be related to using my PMV so much and my trachea being all dried out, Daddy wonders if it is due to my teething. Either way, it took me a long time to fall asleep tonight even with a dose of Tylenol. I took a 45 minute nap and then was back awake in time for Marianne's arrival. Mommy told Marianne the Tylenol will hopefully kick in soon so I can get some sleep!

Peyton Nicole Smith

Monday, October 13, 2008

Monday, October 13th, 2008

It was a busier day then we first thought. Uncle Steve and Aunt Jan left Mommy a message this morning that they were headed through Elk Grove on their way from Modesto to Chico and wanted to know if they could stop by. I was getting ready for nap time so she met them for a quick lunch and then they came by to visit. I was in the middle of nap time but since my hard of hearing teacher was coming by soon, Mommy went ahead and woke me up (yes, this goes against all the rules - waking a sleeping baby!). I got to spend a few minutes with them before Kirsten arrived for our appointment and they got back on the road.

I was a pretty good girl for my appointment with Kirsten considering the short nap. Daddy has been asking Mommy to find out what the sign for "no" is so she made sure to find that out today when Kirsten was here! In the evening, Mommy put me in the bath for the first time since my hand surgery. I was a little hesitant and sore from a bout with diaper rash but once Chili got in the tub with us I perked up a little. Once Chili got in the bath I guess he decided it wasn't as fun as it looked and wanted back out - but not before Mommy and I poured a little water on him!

Peyton Nicole Smith

Sunday, October 12th, 2008

This morning I developed a fascination with the dog food bowls. As soon as my parents backs were turned I would take off scooting across the kitchen to get to the dog food bowls and start taking out the food - piece by piece. I think my parents probably moved me away from the food bowls 10+ times today. They tell me no and I shake my head no so they realize I understood them but then I head back to the bowls. Daddy says this is just foreshadowing for the next 17 years.

Peyton Nicole Smith