Peyton Nicole Smith
Sunday, May 30, 2010
Sunday, May 30th, 2010
Saturday, May 29th, 2010
I hopped up in the pink car (no surprise there) and picked out a Barney video to watch. The stylist was very sweet and it only took a few minutes to trim off an inch, braid my hair and give me a nice spray of glitter and I was ready to go. On the way out I got a balloon weighted down by a cookie cutter and a sucker - doesn't get much better than that!
In the evening, Daddy, Mommy and I met Uncle Jeff for dinner. He said he had a great Mexican place he had started going to with smothered burritos. It didn't take but a moment for Daddy to realize it was the same Mexican place he was going to suggest - see they are meant to be!
We got right in and while Uncle Jeff talked with my parents, I kept stealing spanish rice off of Mommy's plate - yum!
Peyton Nicole Smith
Friday, May 28th, 2010
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Peyton Nicole Smith
Saturday, May 29, 2010
Thursday, May 27th, 2010
Life Begins at 60
Can we expect happiness and success after 60? We can if history is any indicator. Consider the following examples.
at 62
In 1885, Louis Pasteur gives the first injection against rabies.
In 1969, John Wayne ("The Duke") wins an oscar for True Grit.
at 64
In 1940, Winston Churchill becomes Prime Minister of Great Britain proving that courage is not reserved for the young. Vows Churchill, "We shall fight on the beaches, we shall fight on the fields and in the streets, we shall fight in the hills; we shall never surrender."
at 68
In 1966 Lillian Carter, President Carter's mother, joins the Peace Corps and spends the next two years working as a nurse near Bombay, India.
So you go Grandma! Happy Birthday!
Peyton Nicole Smith
Wednesday, May 26th, 2010
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We went to Riverton to the Kauri Sue Hamilton School which is really cool! Kauri Sue Hamilton had been a student in the district many years ago and her family was so happy with the special education she received that they donated land in Riverton to the school district to build a school for special education. The school was beautiful and filled with lots of fun rooms with toys that I would have loved to play with. We had a schedule to keep and first up was meeting the nurse for the medical intake forms. While Mommy answered those questions, I got to play with someone from Early Intervention. I may have been playing, but she was completing an evaluation of my skills. No surprise, although I technically qualify for early intervention services because of my hearing loss - in each of the areas I was tested in I am doing "too well" to really receive any services.
I will be in the Canyons School district and a representative was there to tell me about what they had to offer. I would qualify for the special education preschool class that meets 2 times a week for 2 1/2 hours. However, most of the children in the class are developmentally delayed so she didn't feel like it was the best fit for me. Melody from the Utah Schools For the Deaf and Blind was there as well. She let us know about the two programs they have to offer. In California they still use the total communication method but in Utah they will phase that out this year - so I have two options. The first is a listening and spoken language path that focuses on listening and speaking skills so that children can eventually be mainstreamed into the public schools. The second is an ASL path in which children with hearing loss learn ASL and will spend preschool to 12th grade in an ASL classroom. With the ASL path, I would be provided with a deaf mentor who would come to the house once a week until I am six to teach me and my family ASL and about deaf culture. They believe I can be successful in either program and they want me parents to determine where they want to see me in 20 years - as a hard of hearing adult who lives and works in the hearing world or a hard of hearing adult who is fluent in ASL and embraces the deaf culture. Even if my parents choose the ASL path, it doesn't mean at home that I won't learn to speak and be part of the hearing world around me - and if my parents choose the oral path it doesn't mean I can't still learn ASL - but depending on which path my parents choose will determine where the focus at school will be and what my goals will be in my IEP. Whew - that's a lot to think about! There are pros and cons for each path but Daddy, Grandma and I will visit the preschools next week before they break for the summer to see what they are all about and help in the decision making.
Peyton Nicole Smith
Tuesday, May 25th, 2010
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Prescriptions - I need a new prescription for supplies and rescue oxygen since we are changing providers from Sacramento to Salt Lake. Since I am getting VERY low on supplies it was a good thing Dr Norlin had the order from the supply company in hand so we can get the supplies as quickly as possible.
Vaccinations - I need two vaccinations to get caught up. Prevar is recommended in Utah and Sacramento had a Hepatitis A shortage when I needed it last summer. Mommy will make an appointment to get these out of the way soon.
Exam schedule - Dr Norlin would like to see me as a "well child" every six months. That way he can keep up to date on what is going on with all my specialists and surgeries. He's like me to be the last appointment of the night since there is usually a lot to talk about.
On our way out, Daddy got me a sticker and we stopped at the Starbucks in the hospital so my parents could get some coffee and I could get my favorite Madeline cookies.
No sticks and a treat - it was a good appointment!
Peyton Nicole Smith
Sunday, May 23rd, 2010
Saturday, May 22, 2010
Saturday, May 22nd, 2010
Peyton Nicole Smith
Friday, May 21st, 2010
I had a good day up until the evening when I fell on the concrete and skinned my nose. Daddy put a band aid on his nose to demo where mine should go and I played right along!
Peyton Nicole Smith
Thursday, May 20th, 2010
This morning the doctors came by early to let me know that I was on my list to be discharged but the final decision would not be made until rounding later in the day. Meanwhile, I started in on my feedings again without any problem. Grandma Glenda came mid-morning and with Mommy managed to keep me entertained for a few hours until the doctors came back through. At one time, a little baby with bright red hair was wheeled by in a wagon with a trach. He stared at me and I stared at him. Unfortunately, I still couldn't leave the room. Soon enough the doctors were back. Sure enough, they were letting me go. Before they did, though, Mommy had requested a blood draw to test for a milk allergy so we had to wait a few minutes for the phlebotomist to come by. Once again, Primary Children's proved they are head and shoulders above the rest with one quick stick and they had their blood! I was not very happy and wanted a photo taken of my IV site for you all to see what I have had to go through these last few days!
After the blood draw I got into my street clothes and shoes and Mommy and Grandma gathered all my items together. In honor of the day, Mommy let me wear my "trachs aren't for sissies" shirt. Everyone on the unit thought it was great - in fact they suggested Mommy print up some more and sell them. As we were walking out I waved and blew kisses to my many fans. According to the nurses, about 80% of children with trachs they see are developmentally disabled and are wheel chair bound so the sight of little ole me in my personalized t-shirt walking down the halls was enough to stop traffic. One nurse was amazed "she can walk?"
I walked to the car all on my own and had a very uneventful car ride home. Mommy finally caught up on a little sleep and a shower while I napped. It is definately nice to be home!
Peyton Nicole Smith
Thursday, May 20, 2010
Wednesday, May 19th, 2010
My first feeding started shortly after I woke up and I got moved to room air about that time. My saturations weren't quite where they needed to be, though, so they moved me back to 25% oxygen (room air is 21%). The morning passed with watching videos, coloring and reading books with Grandma and Mommy. At 12:30 I went down for a nap so Grandma and Mommy went and grabbed lunch at the cafeteria. At 1:30 the nutritionist came by to check on me. Since my formula is meant for kids up to 24 months it caught the hospital's attention and they wanted Mommy to consult with the nutritionist. Mommy explained we were waiting to get into GI and my former GI didn't want to make a bunch of changes during the time I was supposed to have had surgery. At the end of the consult a couple of things were decided - Mommy would get some samples of the next stage soy formula (Bright Beginnings) to take home (Mommy didn't feel good about switching me in the hospital) so I could try it ahead of the GI appointment in July. In addition, the nutritionist would get with the doctor on my case to see about getting a blood draw to check to see if I have a true milk allergy or if I am just lactose intolerant. Mommy is pretty suspicious it is an allergy so they'd like to know that for sure.
After she left, Mommy took a much needed break to run back to the house for a shower for the first time in two days. Within a few hours she was back. While she was gone I woke up from my nap not too happy that Mommy was gone but Grandma got me calmed down. Uncle Jason showed up to visit just about the time Mommy did but I wasn't in any mood to play with him and he had to get back to work anyway.
A volunteer brought a doggy by to say hi - his name was Tyco and he was a beautiful golden retriever - but because I am still under transmission precautions he wasn't allowed to come in my room so I waved and blew kisses to him instead.
As the hours had been passing I kept getting closer and closer to my full feed. By 4 pm I had my full 200 ml feed over an hour with no problems. Well, okay, we had one big problem. I hadn't pooped in 2 days. This is never good for me and we were on the lookout for a poopy diaper that never arrived despite a dose of Miralax in the morning. Although it was going to push me over my normal daily intake, Mommy wanted to get one more 200 ml feeding in before bedtime and to try to run it a little faster than an hour since I was tolerating everything so well - big mistake! Papa had just shown up and out of nowhere I started crying and Mommy knew the vomiting was on it's way. Sure enough I threw up a few times on myself and in my bed. Mommy had brought another pair of jammies with her, so I got changed and my bed got changed and the nurse stopped the feeding. My tummy was pretty hard and Mommy knew the constipation was going to have to be dealt with. The nurse let the doctor know we needed an order for a suppository. It was getting late, so Grandma and Papa headed home. Daddy called while we were waiting after working a late night he was starting to feel like he was getting sick so Mommy told him to get some rest and we were doing fine.
About 9 pm, I finally got my suppository. As usual I was not happy about the process but settled down to wach videos pretty quickly. As I was drifting off to sleep around 11 pm, Mommy smelled something and got a diaper. Unfortunately, it wasn't as much as I needed to pass but it was a start. The good news though, is I got back to room air mid-way through the day and got up to full feeds so we met our goals! Looking pretty good for a discharge tomorrow - cross your fingers!
Peyton Nicole Smith
Tuesday, May 18th, 2010
10 pm last night my parents hooked me up to my pulse oximeter machine and noticed my heart rate was elevated. Normally during sleeping it runs in the 80's or 90's but it was close to 120 - a sure sign something was brewing. Sure enough, the coughing started up around 11 pm - an URI was on it's way. The night was long and painful with lots of coughing from me and little sleep from my parents. Early this morning, I started to run a fever and my parents started up a feeding of Pedialite to prevent dehydration. Around 6 am I was up for the morning and started vomiting up some of the Pedialite I had just been given. Mommy got me changed and Daddy headed off to work. I went upstairs to hang with Grandma in the morning so Mommy could try to take some conference calls from home. By 7:30 I was feeling a little perkier and having some crackers and milk and a few hours later Grandma added some formula to my Pedialite since I seemed to be holding it down okay. By mid-morning Mommy was feeling a little better but that all changed at nap time. My oxygen saturations were terrible at some points (80's) and my heart rate was in the 160's. The worst, though, was my respirations. Although Mommy doesn't count them normally she could tell I was breathing REALLY fast and doing a lot of "belly breathing". So at 2 pm she called the pediatrician's office. Tonight was going to be my first appointment with Dr Norlin so she was hoping I might be able to get in a little early. Unfortunately, Dr Norlin didn't come on shift until 5 pm and all the other pediatricians were booked. The nurse listened to my symptoms and requested that Mommy hook me up to oxygen ASAP and head to the ER at Primary Children's. So off we went. Mommy tried to concentrate on the drive while Grandma tried to entertain me.
Once at the ER, Mommy got the receptionist what she needed. She told Mommy that her sister was a preemie and had a trach until she was 6. It's a good reminder to Mommy that trachs aren't completely unheard of out in the community. Just after getting all the paperwork completed, I got called right back to triage where a nurse and a respiratory therapist (RT) were waiting. As usual a trach patient who is SOB (short of breath) catches people's attention. They immeadiately hooked me up to oxygen and it only took about 15 minutes to get into my own room in the ER. Luckily, my saturations jumped right up with the oxygen so I was nice and stable while we waited for the chest xray to rule out pneumonia. Not surprisingly, there was no pneumonia which meant either a viral or bacterial infection. To rule out one or the other, I had to get a culture from the secretions in my nose and mouth. This was new for Mommy and I since UC Davis never took cultures and it wasn't a pleasant experience. I did okay while getting suctioned from my trach but when it came time to suction out of my nose I was a fighter and it took everything Mommy had to hold me down. Shortly afterward, though, I decided to "call" Papa on Mommy's cell phone and tell him how badly I had been treated as you can see in photos above. I started to dose a little but got woken up by a finger poke but that wasn't too bad and I kind of liked the cute band aid.
After the xrays, culture and finger poke, the ER doc let Mommy know I was going to be admitted and they were just getting all the paperwork completed. Since Dr Norlin hadn't yet established care with me they were going to have a hospitalist quickly take a look at me and get me admitted. Around 5 pm we were good to go and we all headed up to the 3rd flood and my waiting room. Because I seemed manageable, instead of going to the PICU I went to the Children's Medical Unit where I have a private room. But because of the trach, I have a tech that sits right outside my door 24/7 to monitor me - as far as Mommy is concerned that is the best of both worlds - a little privacy but someone close by to make sure I am doing okay. In addition, because of waiting for the cultures, I am on transmission precautions. That means that anyone from the medical team that comes into the room is required to be gowned, gloved and masked. However, my family and I don't need to be while in the room. But I can't leave the room myself for the time being.
For the first time, I am in a big girl hospital bed instead of a crib which Mommy appreciates. This is one hospital stay where she won't be climbing the crib rails to get into bed with me. I was starting to perk up a little so Mommy started up the TV and her and grandma waited as medical folks came in and out to ask questions and get me stabilized. I was still on oxygen and hadn't had a feeding for several hours and my fever was returning. I got a dose of Tylenol and the IV team came by to get my IV in place for fluids. Now, if you have read my blog over the years the IV is usually a very dramatic process - usually taking hours and multiple candidates to try to get it placed. I had just fallen off to sleep when they arrived and I kid you not that I just about slept through getting my IV had it not been for the stick itself. The nurse whipped out the light, found a vein immeadiately, washed my arm with alcohol and got the IV in on one try. Mommy swears it was about 30 seconds but no more than a minute for the entire process. She was ecstatic! With the IV in, I finally got some fluids and was starting to feel a lot better. About that time, Daddy and Papa showed up so Daddy stayed with me while Grandma, Mommy and Papa went to the cafeteria to eat. On the way, Mommy ran into someone she worked with several years ago - she is still amazed she was recognized since she hadn't showered in 24 hours and looked pretty ragged.
My grandparents and Mommy had an nice (short) meal while Daddy rocked me and then when they got back my grandparents went home for the night. Daddy had brought some items for Mommy and I to keep us entertained and he went home as well. Mommy got settled into bed with me and it didn't take me long to fall asleep. Although Mommy knew the day would come that I would have an admission in Utah she wasn't quite planning on it happening so soon. But she has to admit that Primary Children's is head and shoulders above any other hospital experience we have had to this point so if you got to be sick this is a great place to be!
Peyton Nicole Smith
Monday, May 17th, 2010
Mommy helped me get settled in my car seat in Grandma's car and off she went to work. I did cry just a little initially but Grandma was smart and brought crackers to entertain me on the car ride home. Mommy got to work and had a nice day in the office with a little celebration with some cinnamon rolls from her team and then back home she came to see me. I was so excited I came running to her and gave her a big hug - which made it all worth it!
In the evening, Mommy and I met Daddy, Uncle Lonnie, Aunt Kristin and Jackson at the field house for our second soccer practice. It was Jackson's first time coming since he was sick last week. We got to be on the same team and had a great time. Cousin Jackson has quite a leg on him and scored lots of goals. After about the third rotation, Jackson called it quits and sat on the sideline and drank some juice under his blankie while I continued to play. By 7 pm, I was ready to get home and get to bed.
Peyton Nicole Smith
Tuesday, May 18, 2010
Sunday, May 16th, 2010
Peyton Nicole Smith
Saturday, May 15th, 2010
Can you tell I am excited to get on the road! While Mommy was running some errands, I got to go with Daddy to the aquarium and I loved the penquins and fish. I didn't like the sting rays - in fact I was down right scared of them!
After a good nap we then got to go have dinner with Uncle Jeff and his girlfriend at her house. I had fun climbing all the stairs at her house while all the adults talked and had a great meal.
Peyton Nicole Smith
Thursday, May 14th, 2010
Peyton Nicole Smith
Thursday, May 13, 2010
Wednesday, May 12th, 2010
When I got home it was time for a bath and then a little story time before bed. Despite being the smallest person in the house, I demanded that Papa get out of his big comy LazyBoy so I could lay back and read my stories. My parents are just hoping for a better night tonight as I woke up last night at 2:30 and decided I was up for the day. Mommy stopped counting after 9 times laying me back down - it took almost 2 hours for me to get back to sleep.
Peyton Nicole Smith
Wednesday, May 12, 2010
Tuesday, May 11th, 2010
This evening, Mommy and I went to visit Uncle Shawn at his pub - The Fox Hole in West Jordan. Mommy had a great sandwich (the cubano) and onion rings in between chasing me around the place. I was fascinated with the pool tables and Mommy had to restrain me from throwing the balls around and breaking the glass windows.
Peyton Nicole Smith
Monday, May 10th, 2010
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With that excitement out of the way it was on to the next health issue of the day. This morning was my appointment at the Primary Children's dental clinic. My parents knew this was not going to have a happy ending but it needed to happen. Grandma and Mommy and I drove to PCMC in a pretty good rain storm but easily found parking and got into the building without too much difficulty. Right off the bat there was a nice man there who was handing out stickers - perfect! Once we made it up to the third floor we had a little bit of a wait before the office opened. About the time it did, though, I had a messy diaper and Mommy was horrified to realize there were no diapers in the diaper bag! Now my diaper bag is about 30 pounds because it also is considered my medical bag so it probably isn't a big surprise that the fact that there were no diapers was not noticed. Thank goodness for being in a pediatric hospital because they were able to give Mommy some diapers to stock her back up - whew!
It didn't take long to get back into the room and before the dentist had a chance to come in the room the office manager came by to introduce herself. They are starting a program of "rounding" on patients to ask them about their experience - what is working well and what isn't. Since Mommy is brand new to PCMC she had a few questions and got some great answers. Mommy also gave her some feedback on some areas that didn't go as smoothly (pre-registration, welcome packet).
When the dentist came in, Mommy gave him a quick update on my unfortunate dental history. Then it was time for the exam so Mommy laid me down on her lap and put my head on the dentist's lap. While Mommy held down my hands, the dentist did an exam. I was not a happy camper and there were lots of tears. Unfortunately, my parents were right and there is more dental work in my future. I have at least two crowns and probably one root canal that need to be done. The dentist is also considering crowning more teeth that are at risk for future root canals.
After the exam (while I soothed myself with a new stuffed animal) Mommy and the dentist talked about all the reasons I am at risk for dental problems and the limited things my parents can do to compensate. Basically, in a perfect world I would never eat anything by mouth. But because I like to eat and at some point I want to get my g tube out it creates some real problems. With very little saliva flow in my mouth after I eat it is best that my parents have me drink a good amount of water to wash out my mouth. The dentist is also ordering in some special newborn brushes to help with making my brushing easier with the limited ability to open my mouth. On the way out, Mommy scheduled my OR time to get all my dental work done in July.
We arrived home and found Henry feeling a little perkier which made Mommy feel better. Later in the evening, Mommy, Henry and I headed to the vet appointment. Daddy was running late and had to meet us there. Mommy struggled to hold Henry and get me across the busy parking lot. Once inside, Mommy had to navigate both of us past the big dog (normally Henry would take it on but he was shaking like a leaf). While still trying to hold Henry and keep me from running around the reception area, Mommy was asked to fill out some paperwork since I am new to the office. About that time the receptionist wisely suggested putting us in an exam room so Mommy could concentrate. Thankfully, Daddy showed up shortly afterward. It didn't take long before the vet came in as well and she did a short exam on Henry up on the exam table. I thought it was pretty funny to see Henry being manipulated in lots of different ways and kept up a steady stream of cackling. The vet felt like Henry probably tweaked his back but didn't blow it out completely. She decided to start him on some Prednisone to help with the inflammation and just keep an eye on him. My parents were very relieved and got ready to pack up and head home. About that time, I got pretty ticked off and demanded that I have an exam as well. This is a sad commentary on my life that anytime I see someone in scrubs with a stethescope that I expect to be the patient and when I am not I am pissed that I am not the center of attention! My anger only increased when Henry got a "treat" (to give him the meds) and I didn't! The vet wasn't quite sure what to do with this situation except to say she wasn't used to treating cute little girls so she didn't have any cute little girl treats to offer.
Peyton Nicole Smith
Monday, May 10, 2010
Sunday, May 9th, 2010
Mother's Day was beautiful and sunny and we had a great day. Our first stop was Mommy's side of the family where we had brunch at Aunt Kristin's house. Uncle Lonnie was in Spain for the week so we were down a person but Aunt Kristin was the perfect hostess as usual. My cousins and I sat together watching a Pooh movie while having something to eat. Then we got to play together in Jackson's play room and he was nice enough to share his toys. After brunch we all went by caravan to show the house that we are in the process of buying. Traiton loved all the stairs and because the house is empty there was a wonderful echo when he would yell.
After a nice afternoon nap it was time for dinner with Daddy's family at Outback Steakhouse. Despite being busy for Mother's Day they got us to a table right on time and the food came quickly. I have taken a liking to parmeson cheese so when my parents asked for a little on the side I got a huge bowl full of it - yummy! When we came back to the house we had some cheesecake and Mommy got to admire the painting I made for her. She can't wait to start working back in the office and she will hang it up so she can look at it all the time!
Happy Mother's Day to all the mommies!
Peyton Nicole Smith
Saturday, May 8th, 2010
While we are playing the waiting game with the house, Mommy and I got to run some errands today while Daddy worked. We stopped by Hobby Lobby and I found lots of fun things (at eye level). The sticker aisle was my favorite! Then we went to Kid to Kid to get some clothing since Mommy is tired of buying new clothes that I seem to stain constantly. She is now investing in "gently used" clothing so she doesn't cringe every time I spill (or write, or paint, etc) on myself. We went and picked up a plastic bouncy ball and a swing to hang from my grandparents tree and that kept me entertained most of the day.
Late yesterday, my Mommy noticed that one of my BAHA's wasn't working so come Monday morning she will make a call to the audiologists to see if they can get me in so we can start the process of getting it repaired. Neither hearing aid has ever officially broken before so this will be a new experience for us.
Tonight, Mommy and Daddy went Jeff's girlfriends home for dinner and left me with my grandparents. Now my parents have left me with nurses before to run errands but never with anyone officially for a date night so this was a big deal for them. But after a great dinner and a couple of glasses of wine, Mommy was really glad she went and I was tucked into bed fast asleep when they returned home. Thanks Grandma and Papa!
Peyton Nicole Smith
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