Journey to a Jaw

Tuesday, July 15th, 2008

No, it is not Mardi Gras! My Great Grandma Joyce had some jewelry she wasn't wearing anymore and let Mommy, Aunt Kristin and Grandma Marilyn go through it. There were lots of pretty pins but Mommy was worried about me hurting myself so she chose the necklaces instead. Mommy calls them my "pretties" and I like dressing up in them - now I have a necklace just like my Mommy does.

My feeding therapist, Karen, came to see me again today. I ate a little Hawaiian Delight for her and she told Mommy I am doing really well. Our next step is to try using the food feeder mesh bag that you can see in a picture above. Since some babies have oral aversion the first step is to see if I will even put it in my mouth. Then, Karen wants me to try dipping it in juice. If I like that, Karen wants to start out with some Cheerios. In the evening, Mommy gave it a shot and dipped it in juice and I really liked it. In fact, when I would have it in my mouth chewing on the mesh, Mommy would try and pull it out and I would keep me teeth dug into the mesh and wouldn't let go. It started to become a little game. Since there are no Cheerios in the house I'll have to wait to try that out until Mommy gets to the store.

Before bedtime, we went for another walk around the block. This time the doggies stayed home and ate their Frosty Paws (doggy ice cream). Tomorrow they are spraying the Elk Grove area for the West Nile virus, so I may not get a chance to go out for a walk for a few days. I had taken a late two hour nap so I was in a great mood. I have consistently falling asleep between 9:30 and 10:00 the last week or so, and tonight was no exception. At least I was easy on Mommy and played quietly in my crib until I fell asleep.

Peyton Nicole Smith

Monday, July 14th, 2008

I had a very good day today, though. I had two good naps for Lucille and spent a lot of time playing. My parents are starting to run low on the smaller HME's I wear. It used to be I could get away with just one a day but now that I have a stronger cough and need less suctioning they get junky a lot faster - and I go through two or three a day. My parents decided to try out the larger HME's and those seem to work much better. Now that I am bigger, they don't look quite as funny on me as they did when I was much smaller.

Dr Scott, my pediatrician, emailed my Mommy to let her know that despite being told "no" several times and lots of time on the phone, she kept at it and she has been able to get me into the UC Davis MIND Institute for an evaluation.

Per their website: The M.I.N.D. Institute (Medical Investigation of Neurodevelopmental Disorders) is an international, multidisciplinary research organization, committed to excellence, collaboration and hope, striving to understand the causes and develop better treatments and ultimately cures for neurodevelopmental disorders. Standing shoulder to shoulder, families, scientists, physicians, educators, and administrators are working together to unlock the mysteries of the mind.

Since I am a NICU graduate and because their are so few cases of Nager's, the nurses in the NICU thought it would be a good idea if the MIND Institute checked me out. Although I am on track developmentally, it will be an opportunity for me to have some tests done to make sure everything is okay. Mommy certainly isn't looking to take me to more doctor's appointments then necessary, but I am a special baby and she wants to make sure I get all the help I can as early on as possible.

In the evening, my parents took me and my brothers on a walk in the neighborhood. Daddy pushed me in my Pooh ride-on toy and Mommy had my brothers. All went well until they got close to the house and Mommy saw a big dog that looked like he was off leash. So Daddy kept walking and Mommy decided to go another route. Then, as she was nearing the house again, she noticed the neighbors across the street had a BIG dog off leash running around. Once my brothers spotted the dog they went crazy barking and whining. Daddy had been waiting on the lawn for Mommy to arrive so he carried me over and took Chili while Mommy took Henry. The dog started to run across the street towards us and Daddy started hollering a little to get the owner's attention. Luckily, the dog ran back to his house before making it to us. We all made it home safe and sound!

Peyton Nicole Smith

Sunday, July 13th, 2008

As promised, my parents took me to lunch with them today. This is only the second time I have been out to eat and I was very excited. Mommy dressed me up in the cute outfit Aunt Kristin got me for the 4th of July. It was a little big on me - the hardest part was keeping the "unders" on. To prove to Aunt Kristin that we made it - Mommy took these pictures of me with the El Jardin margarita list and the Corona salt shaker. I was so very good for my parents. I sat in my car seat the whole time and watched the fans turn above me. I didn't even need suctioning so my parents didn't even have to worry about my loud suction machine bothering people. Mommy noticed right away that the baby in the highchair across the aisle from us looked like she had scars from a cleft lip repair. She actually looked like she had some other craniofacial anomolies too. Mommy thought that with hardly anyone else in the place, it was kind of ironic they would sit right next to a family who has a child with similar problems. It reaffirms to my Mommy that there is more than just chance and coincidence at work in our lives. It certainly made our family lunch date a little more relaxed - which is exactly what my parents needed to make them more comfortable taking me out more often.

Peyton Nicole Smith

Saturday, July 12th, 2008

Peyton's Head CT - 8/28/07

Peyton's Head CT - 3/11/08

Peyton's Head CT - 7/8/08

Two nights ago I did not do well on 30 kcal/oz formula - waking up twice and spitting up a little in the morning. I have gone over 24 hrs, though, on 27 kcal/oz formula and seem to be doing just fine. Mommy is relieved that she was able to bump up my calories to hopefully help me gain weight without starting up the reflux problems again.

I played well most of the morning and then took a nice, long, two hour nap in the middle of the day. Daddy had to take a small trip today so he was gone during the afternoon. When he got home, Mommy went to grab a few groceries. I went down for another small nap but not long enough. By dinnertime I was grouchy so since the weather was cooler and the skies less smokey, Daddy took me up and down the street in my ride-on toy. That kept me entertained until it was time for my bath and bed.

Daddy thought you all might be interested in seeing the difference between my three head CT's. The first was done when I was a day old. The second was in March, prior to my jaw surgery. The third was on Tuesday. What a difference!

Peyton Nicole Smith

Friday, July 11th, 2008

The heat and the smoke are finally starting to subside so it was a much nicer day today. A few more days of this and I will be able to go outside for a walk again. Until then, I take mini-walks in my ride-on toy. Today I even brought a passager along - the bear that I got for being so good at UC Davis during my CT scan. These mini-walks also give my brothers an opportunity for some exercise as well since they like to follow along beside me.

We had a little scare with Henry today. He started vomiting at 5:30 this morning and then had about 5 other episodes over the next 4 hours. In the evening, Mommy gave him chicken and rice to see if he could keep that down. My parents are hoping it was just a minor stomach bug and he is back to himself tomorrow.

Mommy decided to add some fun things to the blog today. There is a doggie clock that shows the time where I am and the weather forecast here. She added a counter to show how many people have visited the site. She also put on a live "traffic" feed showing who is visiting the site, where they are visiting from, how they got to my blog and where they are going to. It is very exciting to see how many fans I have out there and how far away some of them are. Mommy noticed this evening someone came in from Alaska - she thinks that is her Uncle Tom and Aunt Patty - hi guys!

Peyton Nicole Smith

Thursday, July 10th, 2008

We think we got some good news today. Daddy went to pick up a copy of the CT scan I had done on Tuesday to take with us to our appointment with Dr. Schendel next week. Along with the electronic images there was a written report. It said:

Findings: Mandibular distractors have been placed bilaterally in the interim. There is no evidence of hardware failure or loosening. There are no new acute fractures.

We won't know for sure until Dr. Schendel takes a look at the CT but my parents are a little more hopeful that maybe nothing was damaged in my fall and they may be able to avoid another surgery!

You can see in the photo above a picture of my Radio Flyer ride-on horse. I am a little hesitant with the horse - about all I want to do right now is chew on his mane. Maybe if my parents get me some boots and a hat......

Peyton Nicole Smith