Tuesday, May 27th, 2008

Here are my new signs for the next few weeks - Family, Please, Want, Hair and Beautiful.

Today I am nine months old! Just a few more days until surgery. My parents are just hoping to keep me healthy until then.

Peyton Nicole Smith

Monday, May 26th, 2008

It was a nice enough day today, that Mommy finally got a chance to mow the lawn. Now Daddy doesn't really like Mommy to mow the lawn, he thinks it sends the wrong message to the neighbors but she really likes to do it. So Daddy brought me and my feeding pump out to the front yard and we sat in a chair and watched her. Then, it was time to mow the backyard. My Daddy and I sat in the Lazy Boy with my brothers right next to the sliding glass door. Mommy would wave at me each time she would pass by. Once it was all cut, Mommy let me come stand out on the grass in my bare feet. It was all prickly so I didn't want to stand on it long, but I did like sitting out on the grass watching the birds and bees fly by.

Michael, my PT, stopped by for a visit at 1. I had just woken up from a nap so I was in a really good mood. He said that my balancing skills while sitting are age appropriate but I am lagging a few months behind in my pre-crawling skills. He isn't too worried, though, and thinks I will catch up in time.

Hope everyone had a nice Memorial Day weekend!

Peyton Nicole Smith

Sunday, May 25th, 2008

It was another windy day in Elk Grove. Although I went outside for a little while in the afternoon, I was wrapped up in a blanket to keep warm so it wasn't much fun. My brother, Henry was acting kind of sick so my parents are watching him closely to decide if he needs to go to the vet. Happy birthday to my Grandma Mower!

Peyton Nicole Smith

Saturday, May 24th, 2008

It rained last night and was rainy and overcast today so we

didn't get outside until after dinner. Once my parents strapped

me in the stroller, though, I was so happy to get outside. I got

all bundled up and had a pacifier to keep me entertained. The

whole family had a nice walk around the neighborhood.

By the way, I have my first official "boo-boo". Last night,

the whole family was sitting on the floor playing together.

When my parents looked up at the TV for a moment, I leaned

over for a toy, lost my balance, and fell forward hitting my face

on a toy. You can see my "boo-boo" under my right eye in the

picture above.

Peyton Nicole Smith

Friday, May 23rd, 2008

When I woke up this morning, Marianne got me ready for the day. Yesterday, she bought me new hair bows and a new summer dress. She said it was just so cute and she thought of me so she couldn't pass it up. She put my hair up in pigtails for my Shriner's appointment today.

When Mommy came out to see me she noticed right away that I was really warm to the touch. She took several temperatures and came up with all sorts of readings - 99.8, 100.5, 97.9. I usually run about 97.2-97.9 so she wasn't sure what to make of all the different readings. She decided as a last resort to get a rectal temp (not fun) since it is the most accurate. That came in normally, but I was still really hot to the touch so Mommy gave me some grape Tylenol. I was grumpy most of the morning but eventually the Tylenol kicked in and I wasn't so hot anymore. I went down for a nap with Lucille and after 2 1/2 hours my Mommy had to wake me up to go to my Shriner's appointment.

The plan was to see my hand surgeon at 1 pm, the foot surgeon at 2:30 and hopefully get an evaluation by the anesthesiologist in between. We got right in to see Dr. James but when Mommy explained the proposed surgery schedule for my jaw this summer, Dr. James decided seeing the anesthesiologist was unnecessary. Basically, by the time I would come in for hand surgery, many things may have changed. My jaw would be distracted and I may have already been decannulated. Since Dr. James didn't want me to have to wait around until 2:30 to see Dr. Popejoy, she looked at my feet and said for the time being not to do anything special. I should be fine to walk without any orthotics. Dr. James thinks the anesthesiologist may not want to put me under for the hand surgery if I have been decannulated since my airway will probably still be pretty small. Instead, he would probably want to wait to do my hand surgeries when I am older - around 4. So Dr. James would like Mommy to call her after my jaw has been distracted but before the decannulation. If I pass all the tests to get my trach removed, Dr. James would like to try to squeeze in my hand surgeries before the trach removal so I don't have to wait until I am older. My right hand would be an outpatient procedure and my left hand would be an over night stay. Normally, the would do them separately since both arms would be casted for 4-6 weeks. Since I am such a special case, they would probably do both at once so that I don't have to put off my trach removal. Mommy knows it takes several months to get scheduled for surgery so she asked Dr. James how that would work out. Dr. James said that she would cancel another child's surgery even though they may have been waiting several months in order to fit mine in. At this point, we'll just have to wait and see what happens, but it could make for a very exciting summer!

After a lot of phone calls to the nursing agency today, my Daddy talked them into letting Marianne work tonight. My parents have been my Friday night nurse for three months now. The agency is having a hard time finding anyone to work the shift but Marianne has wanted the extra hours. Although the agency has only agreed to this Friday night for now, it is a start.

When Marianne came at 11, she told Mommy how much she likes our family and we are so great to work for. She said many times she feels she is just working for the paycheck to pay the bills but since taking care of me, she has really begun to enjoy nursing again. She said I have put the spark back in her nursing career. She told Mommy I have given her direction in her life and she now wants to go back to get her RN and wants to work in the NICU with babies like me. Mommy thought that was so sweet. As Mommy told Daddy, "Just one more person whose life has been changed by Peyton."

Peyton Nicole Smith

Thursday, May 22nd, 2008

Today was all about blue food coloring. Karen will be feeding therapist. She called today to schedule my first appointment with her. It will be June 12th, the week after my surgery. Mommy thought that I needed to complete a swallow study before the feeding therapist wanted to see me but Karen explained that wasn't the case. Actually, for an optimal swallow study I have to be able to eat something by spoon so if I am not used to doing that the swallow study results may not be as good. So, Karen is going to start coming out to work with me so I can be referred on later for the swallow study. Mommy gave her my history of oral feedings (not much in the past but I am very willing now) and explained that she thinks I am aspirating on my feedings. Karen also mentioned the blue dye test - where you add blue food coloring to the feeding and if blue shows up in the trach then I am aspirating. Since aspiration can lead to pneumonia, Mommy had decided a few days ago not to do the test at home prior to the surgery so as not to risk it being cancelled. Karen explained that Mommy could just take a tiny bit of blue food coloring and put it on my tongue without giving me food or juice and we could first test if I am aspirating my secretions. Mommy loves experimenting, so after she got off the phone with Karen, she had me suck on a q tip with blue food coloring. Initially, I drooled a lot of blue but over the next few hours whenever I needed suctioning - it was blue. So now my parents know for sure that I am aspirating and Karen will have a starting point to work with when she comes to visit.

After the excitement of the blue food coloring, I spent time on the floor playing with my brothers. Then, I decided to roll around the floor to get to the toys I wanted. I am not in the mood to crawl so rolling gets me where I need to go.

I decided to play a trick on Daddy tonight after I went to bed. When he wasn't looking I started playing with my feeding tube and disconnected the extension from the feeding bag. When Daddy found out (Marianne had just shown up), I was soaked with milk as was my bed. I don't think he thought the trick was that funny. Oops!

Peyton Nicole Smith

Wednesday, May 21st, 2008

It was a very windy day today. In the evenings before my bath, my parents like to take me out front and let me sit on the grass and watch the world around me. I like the birds and the cars the most. My hair was blowing wildly in the wind tonight but it didn't bother me at all.

Inside, we had a family turn taking activity. First Daddy would bang on something then Mommy would and then it was my turn. I am getting very good at listening and then taking my turn. Maybe we should start the Smith family band!

By the way, that isn't a new beauty mark on my cheek. A few days ago my parents put silver nitrate on some granulation tissue at my trach site. It turns the skin gray and then eventually kills it. Sometimes, the residue from the nitrate migrates (although my parents have never figured out how exactly) and I got a little on my cheek and a little on my chin. Daddy says all the prettiest girls have beauty marks so I should live it up.

Daddy likes to sing to me made up songs. My favorite is sung to the tune of "I love rock and roll, put another dime in the jukebox baby" but my Daddy's words are "I love P Nicole, even with no chin she's still my baby". My parents try to keep things light, after all if you can't find humor in some of this it could get very stressful!

Peyton Nicole Smith