Wednesday, September 22nd, 2010

Due to some system issues, I have been off line for quite some time - sorry about that! I can catch you up pretty quickly on the last week and a half - here goes: vomit, snot, vomit, snot, vomit, vomit, more vomit, snot

Yep that pretty much covers it! After getting over our initial colds, Mommy and I have continued with the congestion and runny noses. Just to add some fun, the stomach flu fairy came to visit. I had vomiting off and on for several days last week but early Tuesday morning it got ramped up and I vomited 5 times in last than 8 hours. Fun for all! Mommy had her own bout of stomach flu on Saturday so we headed to the pediatrician on Tuesday afternoon where after a 2 hour appointment we were told that if the vomiting didn't taper off in 24 hours to come back in. Luckily for me it did taper off and by this morning I was feeling much better and was able to attend the field trip to the pet store with my preschool class. So all is well now right? Not so fast! Grandma started up with her stomach flu tonight as did Daddy. Like I said - fun for all!

Peyton Nicole Smith

Sunday, September 12th, 2010

Happy Grandparents Day! I wanted to go drop cards off to my grandparents but with Mommy and I both being sick (along with one of my grandparents) we decided that will have to wait for another time.

I felt much better today but Mommy is still struggling. To make matters worse, Henry decided to pull his search and destroy mission with the diaper pail. Nothing like cleaning up shredded diapers to improve Mommy's mood (and health)!

Peyton Nicole Smith

Saturday, September 11th, 2010

Today was supposed to be the Hope Kids Adventure Walk. Well they walked but I didn't! First off, Mommy was my night nurse last night and around 3 in the morning she started to get that itchy feeling in her ears and throat that meant she was catching my cold. Since she is also taking antibiotics for a week-long sinus infection she was not happy! I decided to sleep a little later this morning and as a result I had three feedings without any peeing so as soon as I woke up around 9 Mommy knew what was going to happen next - that's right vomiting! Despite Mommy holding up the towel to try to protect her clothing and mine I managed to push it away just moments before I let loose. Once I was finished, though, I was feeling great. Meanwhile, Mommy was feeling awful! Since Daddy needed to get the plants they bought last weekend in the ground, Mommy kept an eye on me until early evening while he worked outside. Mommy also found out that I passed my little germs on to Grandma Glenda and cousin Traiton as well - pretty sneaky of me huh!

Because of all my sneezing and runny nose, Daddy put an old sock over my cast since I was so fond of wiping my nose with it - eeww! It worked like a charm!

By 6:00 Daddy came in from outside and Mommy got some long awaited relaxation time. Daddy will be my night nurse tonight so Mommy can try to get better.

Peyton Nicole Smith

Friday, September 10th, 2010

OK, Mommy posted a picture of the aerotrach chamber about a week ago. This with the inhaler is how I currently get my asthma meds vs. the nebulizer that I used to use. All Mommy can say is that she is feeling pretty good that between the g tube meds and inhaled meds it is making a difference. Despite being in them midst of a full blown URI (the coughing started up this morning), I did just fine today. I had to miss my speech appointment at preschool but when Mommy came to pick me up this afternoon from Grandma's, I was riding around the backyard on my tricycle happy as could be. Mommy is crossing her fingers I continue to have such an easy time of it - but since most URI's the critical period for me when I end up hospitalized is the first 12-24 hours - things are certainly looking good!

Peyton Nicole Smith

Thursday, September 9th, 2010

So remember how yesterday I was being "contrary"? Mommy thinks she knows why. At preschool today I started sneezing lots of gunk out my nose and mouth. It was a good news bad news situation. Good news because with my trach covered with a cap that is where it needs to start coming out. Bad news because any gunk coming out of me from those areas means only one thing - I am getting sick. Grandma let Mommy know that many of the kids in preschool had runny noses today as well. When Mommy came to pick me up, though, I was happy as could be and no fever in sight. I was headed over to my other grandparents house for dinner with my cousins so Mommy called ahead to warn them but everyone said to go ahead and come over anyway.

I sneezed a few times the rest of the night but I played hard and didn't act sick. Mommy was suspicious though, and by the time bed time rolled around I was running a fever. Fever or no fever, I felt plenty good once I got my Tylenol to do acrobatics in bed for my nurse, Kathy until 11:30.

Peyton Nicole Smith

Wednesday, September 8th, 2010

I couldn't even finish my book tonight without falling asleep! Not sure if it is the itching or my arm falling asleep - but I wake up like clockwork between 2 and 3 am each night upset and crying. As a result, I don't get a great night's sleep and it showed today at school when as Grandma described it I was "contrary" all day. Miss Sarah handled it just fine, though, and when I refused to sit at the table without putting my feet up, I was given the option to sit in a chair away from the group - so I did.

Peyton Nicole Smith

Tuesday, September 7th, 2010

Even in preschool you got to be stylish!

Peyton Nicole Smith

Monday, September 6th, 2010

To celebrate the day off we decided to have an impromptu picnic at a local park. It seemed like a good idea - until the winds kicked up! Not only did it make it difficult to eat but it was also suprisingly cold! Mommy lent me her sweater since my jacket is hard to get over my cast. I could have cared less about the food and wanted nothing more than to head to the slide and swings. So on our way out, my parents stopped to let me play for a moment. We hopped on the swings but the grandparent of the child next to me was kicking around the bark and creating a dust cloud that was not great for an open trach so my parents decided to leave. That is whn my hurricane force temper tantrum began! It took all Mommy could do to hold on to me as she carried me to the car. I lost both shoes and my hearing aids along the way!

Peyton Nicole Smith

Sunday, September 5th, 2010

After months of holding me down to brush my teeth, I convinced Mommy to let me do it myself. OK, I didn't do such a great job but I worked on them for quite a while and best of all - no tears!

Peyton Nicole Smith

Saturday, September 4th, 2010

So what do my parents decide to do for the long holiday weekend for rest and relaxation - potty training of course! Mommy and I went by the local toy store yesterday to pick out the toy I could attain by becoming completely potty trained - a horse stable with horse and rider. Mommy already had a 6 pack of Elmo underwear and a package of Dora pull up's. We were all set - this should be pretty easy right? Now how is is that I can hold it in a diaper for hours on end but as soon as the diaper comes off and the unders go on I can't seem to stop peeing for more than a few minutes at a time? Let's just say there was lots of laundry and an empty potty after a full day of potty training. My parents decided to give me a break tomorrow and then start back up Monday. (Actually I think they needed the break more than I did).

Peyton Nicole Smith

Friday, September 3rd, 2010

You've done it! You met my fundraising goal of $500 for HopeKids! Thanks so much everyone who has gotten the word out - I really appreciate it. Next Saturday is the 5K but don't stop now - HopeKids is only half way to their goal of raising $40,000. But there's great news -

there is an anonymous matching donor that has stepped forward to help us with the 5K! This donor will match the next $5000 that we raise - so make that match count!

Peyton Nicole Smith

Thursday, September 2nd, 2010

A note from Mommy:

Now would be a good time to stop reading if you don't want to hear about a sad experience out in the community. OK here goes. Peyton's cousin Dylan was having a birthday party at Kangaroo Zoo - a local bouce house place. Peyton was invited along and I met her and Glenda after work. Most of the children were older and so for much of the time Peyton was bouncing alone in the little kid houses. She was having a ball despite the big ole cast.

Later some smaller children showed up. While in one of the bounce houses a little girl around Peyton's age was staring at Peyton. I'm not sure if she knew I was with Peyton since I was standing there, but she turns to me and says, "She's weird." I was stunned for a moment and then she continued by saying, "That tooth looks weird." Then as Peyton walked by her, she pretended to be scared and backed away from her. Now this could have been a teaching moment. OK it should have been a teaching moment. Normally, when children see Peyton they have questions - does that hurt, why does she need that, what is that - they don't usually make a statement that is hurtful. I'll admit it - my Mama Bear claws came out but I said as nicely as I could, "That's not a very nice thing to say" and I scooped P up and walked away. Now this is a small place and when I went to go sit down her mother was sitting at the table next to us. I am pretty sure I hurt her feelings (or maybe scared her) because the rest of the time we were there she stuck pretty close to her mom and kept looking at me out of the corner of her eye.

So as Peyton continued to play I stewed about what had just happened. I was disappointed in how I reacted. I know this will not be the last time and I know Peyton didn't even realize what had just happened but the next time she might and the next time I may not be there. I know I won't be able to protect her from these moments for the rest of her life, but damnit, I wanted to protect her for just a little longer!

Just a few minutes later as I was holding Peyton another little girl walked up to us and with the sweetest voice said, "I really like her piggy tails." I choked out a thank you while trying not to burst out crying. So instead of this being a teaching moment for the first little girl, it became a teaching moment for me. There will be plenty of people like that little girl that will see Peyton as different and not in a good way. But there will also be people like the second little girl too who will restore my faith in the world. So thanks to both of the little girls I encountered today.

Peyton Nicole Smith

Wednesday, September 1st, 2010

Mommy wasn't sure what to expec, t today when it came to the Special Care program appointment. According to the website:

The Pediatric Special Care Program provides coordinated, cost-effective, and family-centered health care services for children and teens with developmental disabilities and associated complex medical condtions that require frequent hospitalizations and the expertise of multiple specialists. The program serves children and young adults with developmental disabilities and complex medical conditions, such as those related to:
Prematurity
Congential anomalies
Genetic syndromes
Cerebral palsy
Brain injuries
Spinal cord injuruies
Neuromuscular disorders
Technology dependency (including ventilator support, tracheostomies, feeding tubes, baclofen pumps)
Functional limitations requiring adaptive equipment

Services provided:
Outpatient assessment, management, and care coordination services, at the request of and in collaboration with primary care providers
Inpatient consultation for children with complex management and disposition issues, in collaboration with PCPs, subspecialists, hospitalists, and discharge planners
Coordination and management of interdisciplinary consultation and management services (including interdisciplinary conference and discharge planning meetings)
Education for parents and caregivers, including links to community and web
Coordination of referrals and medical appointments
Advocacy with insurers, schools and community services
Integration of pediatric care across the continuum, including care at home, in the community, hospitals, and congregate care settings
Assistance with decisions related to palliative care and end-of-life issues
Guidance with transition and guardianship issues as children approach adulthood

Mommy had been referred to the clinic after our dysphagia appointment back in July. It certainly sounded right up our alley reading about it. When we got to the waiting room looking around at the other children it was completely comfortable for Mommy - children with craniofacial syndromes, children in wheelchairs on vents, a little girl with Down syndrome. But after almost 2 hours in the waiting room Mommy was getting antsy while I was having a great time playing. When we did finally get back to the room, we were seen quickly by the resident. Mommy caught her up quickly on my previous medical history. Shortly, a male doctor joined her - also a resident - and we talked a little more. He noticed my "bonk" on my head from where I fell a few days ago. He would like to refer us on to a physical therapist for a gait assessment. As he went on to explain, many children with craniofacial syndromes have been known to have neurological issues that don't allow them to have great sensory feedback - the nerves either aren't firing correctly or the brain isn't reading the messages correctly. For many kids it results in balance and falling issues. He had me walk and then run up and down the hall. Should this be the case with me there could be several different solutions - pressure garments, orthotics or potentially even braces. Beyond that issue, he was impressed with how hooked in to the system we were - after all I have more specialists then I have kids in my preschool class.

After this discussion, Mommy was expecting the director of the program (the one she had the appointment with and had been waiting to see for two hours) to come in but apparently because I am so hooked in - there wasn't a need to. So we waved at her on our way out. It wasn't a wasted trip, though. Mommy had tried to get the special spacer for my trach to use with the inhaler at the local pharmacy with no success and the only place in town that carried it was Primary Children's. So we stopped by the pharmacy to get it filled.

Peyton Nicole Smith

Tuesday, August 31st, 2010

Grandma was not feeling so hot yesterday so we didn't go to preschool. Luckily my teacher sent one of the projects home. Since this week's theme is "back to school", we are learning about our school and our classmates. They had strunge Fruit Loops on a necklace and then each of us got four little pictures of each other to string on the necklace too. I liked stringing the cereal but wanted to hang on tight to the pictures.

When my parents found out I would be attending preschool they approached the school district about possibly letting my Grandma go with me instead of a nurse. Initially, they had insisted it had to be a nurse. Now several months later, suddenly they are seeing the light. Because the decision about me attending preschool came just days before school started for the year, they had already hired all the nurses privately they thought they would need. So in order for me to attend, Grandma was allowed to come with me until they could get a nurse hired. Getting the nurse was a little more difficult then they had anticipated and they did some checking and found out it would be okay for Grandma to come instead of a nurse. So, now they are going to hire Grandma as a teacher's aide. She will be there primarily to keep an eye on my medical needs but to offer me a little independence (read - so I don't come crying to her all the time) she will help out in the classroom right next door but will be just seconds away if ever there was a medical problem. It is a win-win for everyone. My parents don't have to send me off to school with a stranger, Grandma gets paid a little something for the hours she is there, the schools saves money by not paying for a nurse and they have extra help in the classroom!

Peyton Nicole Smith