Sunday, January 31, 2010

Sunday, January 31st, 2010

Just one of those lazy days at home today. We ran a few errands together as a family and then all five of us got naps in at some point during the day. Good thing, it will be a busy week for me with a feeding evaluation on Monday, a visit to the ENT on Tuesday and two therapy appointments at home later in the week.
Peyton Nicole Smith

Saturday, January 30, 2010

Saturday, January 30th, 2010

Mommy and I had a good time today at my "karate" class (there is a sign for karate so that is easier then fingerspelling). I didn't make it the full thirty minutes and we headed out a few minutes early. By chance, my friend Brighton was taking a t-ball class at the same facility so I go to see Kelly and Sophia for the first time in almost a year! Sophia wasn't feeling too well today but I was happy to see her.
It was finally warm enough that I got to spend a little time at the park this morning. I have been requesting to go swing for months but it has been too rainy or cold. It was still a little chilly after a rainstorm last night but the sun was out so Mommy took a chance and stopped on the way home from class. The slides were all still wet but the swings were nice and dry.
In the afternoon Uncle Jeff came by to play for a few hours. Since he is all too familiar with running after me when I am having a feeding he was very impressed that I am a big girl now and wear my backpack like Dora. That doesn't mean that I don't grab his hand and drag him with me though!
Peyton Nicole Smith

Friday, January 29th, 2010

Now that Mommy is back home, we are back into our normal routine. Daddy continued to have me wear my backpack while I was getting a feeding this week so Mommy picked up where Daddy left off. I don't even fight wearing it anymore and my parents feel a new sense of freedom not having to follow me around during each feeding - no more leash for them! Now they just need to get Lucille familiar with the process too.

Peyton Nicole Smith

Friday, January 29, 2010

Thursday, January 28th, 2010

There hasn't been any posting this week because I have been back in Salt Lake for work meetings. Just days before leaving, though, the trip to Utah took on a whole new meaning.

In the last 30 or so years my father has been out of my life more often then he has been in. When I was younger it was by his choice - as I have become an adult I didn't maintain contact and he respected my wishes. He is not a bad person but he has been fighting demons his entire life and those demons (namely alcohol) would usually win. It has been close to a decade since I have had any contact with him. Since Peyton's birth there have been several times I tried to search for him on the internet just so I could know if he was alive or dead. I hated answering the question "Where is your dad" with "I don't know, I'm not even sure if he is still alive". When I had last heard from him I knew he was not in good health and was on disability due to COPD. At that time he was still smoking and drinking and making no effort to improve his health. I wasn't prepared to sit around and watch him slowly kill himself - it was too much to deal with at the time.

So fast foward to last week when my uncle tracked down my sister to let her know that my father had accidentally caught himself on fire while smoking and using oxygen and he had been life flighted from Idaho to the burn unit at the University of Utah Hospital in Salt Lake. Yes, the same hospital where three out of his four children work. Knowing I would be in Salt Lake within a few days for work, I hoped he would survive long enough for me to at least say goodbye. In the week since the accident he had been kept sedated and was not awake or aware of his situation.

Tuesday night I visited him late in the evening by myself - I figured I would have a good cry when few people would be around to witness it. To my surprise, he was awake and after a few questions from me and a few nods and shakes of his head it was clear he was also aware. Although he had no idea where he was or why he was there he knew who I was and was very surprised to see me. With all the tubes in his mouth he could not talk and with the bandages on his hands he could not write. Communication was strictly based on me asking yes/no questions that he could shake or nod his head but it was clear he wanted very badly to talk to me. Because he was emotional I had to be the strong one and the good cry would have to wait. Not so different then our relationship has been all along.

I broke the news to him that he was going to get a trach. He got very upset but I am not sure he even knew what a trach was. Obviously our family is all too familiar with life with a trach. When I first heard it was a possibility I had a difficult time getting past the irony of my child and my father both having a trach at the same time - what are the chances? For the second time in my life, I experienced the love/hate relationship with a tracheostomy. My conflicted feelings about the trach are not that different then my conflicted feelings for my father I guess.

I am not sure if Peyton will ever get the opportunity to meet her grandfather. But I find some comfort in knowing that when Peyton sees a picture of him she will finally see someone that looks like her - right down to her trach. And in that my father has given his granddaughter a gift none of us ever could have imagined.

Monday, January 25, 2010

Sunday, January 24th, 2010

Uncle Jeff made good on his promise to get up (relatively) early this morning and take me to the mall so I could ride the carousel. My parents tried to distract me with a stop at the Disney store but I had already caught sight of the carousel and was in no mood to mess around looking at Disney princesses - on to the horses!
Uncle Jeff was kind enough to ride with me three different times (on three different animals of course) and I had a great time. Mid-way through my second ride I decided I wanted my stuffed Barney to join me so he made it on for the last ride of the day. As my parents predicted, I threw a fit when I finally had to get off but poor Uncle Jeff was feeling a little dizzy by then so I was out of luck.
My parents worked with me today on wearing my backpack during a feeding. Up until a few months ago I didn't get clearance to wear it because the weight was too much for my small size and underdeveloped shoulders. Now that I am a little bigger and steadier on my feet I have no desire to want to wear it. Mommy gave me the ultimatum this morning - either I wear the backpack or I have to sit in my high chair during my entire feeding. That didn't go over so well so Mommy strapped it on me and for the next 20 minutes I was all over the board with my emotions. Mommy showed me that Dora the Explorer wears a backpack all the time too and good thing I had a bunch of stickers of Dora wearing her backpack to show Mommy wasn't lying to me. After that, I alternated between crying and dancing with my backpack on. But when it came time for the last feeding of the night I put it on without a fight and never bothered it. Wish my parents luck that the rest of my transition to carrying my own feeding will be this easy! (And yes they will be investing in everything Dora to continue to prove cool girls wear backpacks!)

Peyton Nicole Smith

Sunday, January 24, 2010

Saturday, January 23rd, 2010

I have finally mastered my tricycle! OK, I am not really an expert but I do manage to get up and down the hall on my own - it's the turning that is still a little difficult. My OT says this is usually a 3 year old skill so the fact that I am doing it already is great!

Peyton Nicole Smith

Friday, January 22nd, 2010

The two men in my life - Barney & Elmo!

Peyton Nicole Smith

Friday, January 22, 2010

Thursday, January 21st, 2010

Here I am having fun and being silly. But now you can see why it is sometimes hard to keep track of my HME's - when I am tried of wearing it I just chuck it. My parents have found them in some very strange places over the years and are sure years after my trach is removed they will continue to find them.

Peyton Nicole Smith

Thursday, January 21, 2010

Wednesday, January 20th, 2010

You know you are a smart "special needs kid" when at 2 1/2 you:

Tap your hearing aids when the battery is dead so your parents can replace them.

Sign "hear" when you want your parents to put on your hearing aids.

Get out the towel and clean up your own g-tube spills when the medication port opens.

Hook up your own extension set to your g-tube.

Sign "all done" when your feeding pump beeps at the end of a feeding.

Request a wipee to clean up after yourself when you cough up trach secretions.
Point to the suction machine when you need a suction.
Remove your own HME to cough up secretions and then put your HME back on when you are done.
My parents have no doubt that I will be in charge of all my own care here shortly - just need to get tall enough to reach the machines!
Peyton Nicole Smith

Wednesday, January 20, 2010

Tuesday, January 19th, 2010

Remember that whole controversy about "weapons of mass destruction"? Within our household there isn't much controversy because when you are talking about life with a 2 year old it is clear that the weapons of mass destruction are crayons! Apparently, Lucille wasn't keeping a close eye on me during the day at some point. When Mommy came out at 4 as Lucille was leaving for the day I was still asleep. Mommy noticed a crayon laying on the rug next to my bed. Lucille commented that I had fallen asleep with it in my hand and eventually it fell out. "How cute!" Mommy said. Fast forward about an hour and Mommy and I went to check on my fish. I walked over to the tank, pointed at it and said "uh-oh" very clearly. I had taken said crayon (yes, that is the very same crayon in my hand above) and at some point during the day colored all over the tank with it as well as the wooden table the tank is sitting on. A little Windex and the tank was good as new but the table is still showing some long term effects. Now I was just trying to make the tank pretty for my fish but Mommy has learned a valuable lesson - invest in washable crayons or suffer the consequences!

Peyton Nicole Smith

Monday, January 18th, 2010

Just to prove to Mommy that I do pay attention, she watched me today "fill" my plastic cup with water from the sink and put in the microwave then pull it out and drink from it. (Does that remind you of when you drink tea Mommy?) It's pretty clear that even though I don't eat or drink much by mouth I am always watching!

Peyton Nicole Smith

Monday, January 18, 2010

Sunday, January 17th, 2010

A full 24 hours later I am still loving my Elmo balloon from the party store. He goes with me everywhere around the house and even sat at the end of the changing table during my trach change tonight.

Peyton Nicole Smith

Saturday, January 16, 2010

Saturday, January 16th, 2010

After much anticipation today was the start of my Taekwondo Tots class. With 20 or so 2 and 3 year olds learning basic Taekwondo movements like blocking, kicking and punching you can imagine the fun! Mommy was a little nervous there wouldn't be any girls but she was sure wrong - at least half the class was girls. In fact, I met another Peyton (see earlier posting on how common the name is now). I had a great time and hopefully next week Daddy will join us so Mommy can get some pictures for the blog.
In the evening, the three of us met Jeff, his son Blain and Blain's girlfriend Mariel at Chili's for dinner. Despite all the time we have spent with Jeff we had never met Blain before. He was home from college on the holiday break and is headed back later this week. I had a great time showing off my new Yo Gabba Gabba action figures. A little boy named Austin at the table next to us wasn't shy about coming over to play with the action figures too - obviously another Yo Gabba Gabba fan! I started to get a little antsy towards the end of dinner so Mommy promised me a balloon when she saw some up at the front. When Jeff took me to get one he quickly found out Chili's doesn't give away balloons - someone had brought them in for a birthday party. I was not to be deterred though and kept signing "balloon". Luckily for Mommy, there was a Party City in the same parking lot and off we all went to get me a balloon. With St Patrick's Day on the way there was plenty of fun stuff to try on and I posed for some pictures. In the end, I got a huge Elmo balloon to take home and all was right with the world!
Peyton Nicole Smith

Friday, January 15th, 2010

With all the drama of the last few days what could be better than a little retail therapy? Since Grandma Mower is no longer working at a shoe store I don't have 15 pairs of cute shoes in each size (I was very spoiled!) So I had the new experience of needing to buy a pair of shoes. Mommy took me to Target and we looked through everything in my size.
While looking, a girl about 8 walked up with her mommy and she was also looking for shoes. She caught sight of me with my extra large HME covering my trach, drew her breath in loudly in apparent horror or fear and pointed at me. Mommy's heart sank like a rock in her chest. She had to hold herself back and remember this was a little girl who didn't know what she was seeing and didn't understand. So Mommy calmly said hello and pretended like the moment had never happened. Her mommy wasn't standing next to her daughter and didn't realize what had happened and when she walked up she commented on how cute I was.
Mommy knows that this won't be the last time something like this will happen but it still made her very sad - I was completely oblivious to it all. But one good thing did come out of the experience - I have a great pair of shoes that I absolutely love! Retail therapy really does work!
Peyton Nicole Smith

Friday, January 15, 2010

Thursday, January 14th, 2010

Here I am trying to look like Foofa with the flower sticker on my forehead. If you look close you can see my skinned nose. It used to be that I fell on my head all the time and it was almost a constant bruise for months as I was learning to walk. Now I seem to be leading more with my nose. Today as I was running in excitement towards my fish tank I tripped and fell right into the wooden table the fish tank sits on. Luckily it wasn't the corner - unluckily I happened to land with my nose on the exact spot where the metal latch sits. So for the moment I have a lot in common with Rudolph!

Peyton Nicole Smith

Thursday, January 14, 2010

Wednesday, January 13th, 2010

Mommy has tried hard not to bad mouth any of my nurses in my blog despite having nurses that slept on the job (three), burst my g tube (one), missed shifts (one) and didn't notice I had the wrong size trach in despite having to chart the size each shift (all four nurses during that week). My parents have been struggling with one of my night nurses for months. Despite their better judgement when the last night nurse wasn't working out they gave my respite nurse a shot. They figured how crazy could she make us if we all pretty much slept her whole shift? She has already received two verbal warnings in the last few months for hounding my parents about my feeding protocols but she has apparently not learned her lesson. It was a rare occurrence, but last night I was awake when she came on shift at 10 pm. The nurse let Daddy know that she thought the reason I was awake was that I must be hungry. Now remember, I get five g tube feedings a day. The volume and calorie content are set by my GI and dietician to make sure I continue to grow appropriately. All the feedings I take orally are just for fun and are considered extra calories and are monitored closely by my feeding therapist to ensure I don't show any signs of aspiration. When Daddy headed to bed, my nurse was getting me out of bed to read me a story - or so my parents thought. When Mommy came out the next morning the first thing out of the nurse's mouth was that she put me in my high chair last night and fed me pudding and I loved it! "Maybe she doesn't eat pudding for you because you don't make it fun! She was hungry and once she ate something she calmed right down and went to sleep." This is where that "oh no you didn't" might spring to your mind like it did Mommy's! Mommy sat down and said in as nice a voice as she could, "Peyton is not malnourished, thin or failure to thrive (all terms this nurse has used in the past). She is followed by a GI, a dietician, a pediatrician and a feeding therapist. They are all completely comfortable with her growth. Although Peyton is short stature due to her syndrome, her height to weight is in proportion and she is perfectly healthy." Despite the fact that this nurse does not go to any doctor's appointments, therapy appointments or is involved in any of my plan of care she was not ready to give in without a fight. She told Mommy that she is a nurse and she has had g tube patients in the past and she knows that I am hungry. The nights I roll around in my sleep it is clear that I am hungry. Then she asked, "Haven't you ever been hungry before Tracy?" That's about the time Mommy had to hold herself back from jumping across the table. But she kept pretty calm and told the nurse, "Peyton loves to eat but that doesn't mean she is hungry. There is no way that the miniscule amounts of food she eats by mouth could possibly satisfy her if she was truly hungry - she eats it because she likes it not because she's hungry. I don't agree with you and I want you to stop using the term "hunger" because that's not what is going on!" That last comment sure set the nurse off and she responded with "you can't control what I say" and it started to get pretty ugly. Mommy finally called a halt to the fun and told the nurse that they were clearly at an impasse and at this point she was done talking about this topic and any future questions or concerns about it would need to be directed to the agency the nurse works for - not my parents. The nurse had to get a final word in and tell Mommy that "if you continue to ignore the reality of your daughter's hunger signs it could be detrimental to her in the future." Mommy let her know that she was willing to take the risk! Once the agency opened in the morning Mommy called the director and told her what had happened (the nurse had already called her as well but the director decided to call Mommy back first). The director agreed with Mommy and from here on out the topic of feedings, weight, calories, etc. are off the table for this nurse. In addition, she is being written up for unprofessional behavior.

Mommy has always been someone who has had a hard time standing up for herself but parenting a child with all my special needs has forced her to be more assertive on my behalf. So despite being sick to her stomach at confronting the nurse she knew she didn't have a choice. With such a horrible start to the morning it was no wonder that Mommy fought a migraine the entire day.
But when the nurse showed up tonight for her shift there was no mention of what had transpired earlier in the day.
My parents wish they could just fire her but the agency has been looking for a replacement for months now but haven't found one yet. Since she works the five nights during the week that my parents work the next morning they have kept her until now. But they realize that after two verbal and one written warning about the same problem it is unlikely she will keep her opinions to herself for long. The agency has a pediatric night nurse in orientation next week so let's all cross our fingers that she might work out. With all the stress with this nurse it only makes my parents appreciate the good nurses that much more!
Peyton Nicole Smith

Wednesday, January 13, 2010

Tuesday, January 12th, 2010

A note from Mommy:

I rarely make recommendations on books or movies or television shows but I had to share with you the documentary that I watched today - Dear Zachary: A Letter To a Son About His Father. A young doctor named Andrew is shot and killed by his ex-girlfriend in the United States. With the police closing in she heads back to her home of Newfoundland awaiting extradition proceedings. Within a few weeks she announces she is pregnant with his child. Andrew's parents pack up and leave California and move to Newfoundland so they can be there to get custody of their grandchild assuming the woman will soon be in prison for the murder of their son. Andrew's best friend is a filmmaker. He decides that he is going to create a film about his friend so that the child (Zachary) will know the father he never met by interviewing friends and family around the world. This is the introduction to one of the most incredible movies I have ever seen. I'm not going to lie this film is not about happy endings. You will be angry. You will be sad. It is probably a movie you come out of thinking you are a little changed as a person by seeing it. But despite the tears I have shed, I can only hope to be as selfless a parent as Andrew's parents have become. In the end this is a love story.

Please check it out:


Monday, January 11th, 2010

Well, I spoke to soon about my new love for Foofa. Don't get me wrong, I adore Foofa but that was before I found my long lost love - Rudolph. My parents were trying to be sneaky. When we returned from Salt Lake after Christmas they hid Rudolph my singing/talking/moving reindeer. Besides the song being annoying after 50 times in a day he is also VERY loud and all of us have jumped at one point or another when he got turned on and we weren't expecting it. But I am one smart cookie and tonight I saw him sitting at the top of my parent's closet and demanded he be returned to me. I was thrilled to see him again and didn't waste any time introducing him to my fish and all my new toys. My parents were not so thrilled and didn't waste any time trying to figure out a way to conveniently lose him again. So if Rudolph is involved in some unfortunate accident.....
Peyton Nicole Smith

Tuesday, January 12, 2010

Sunday, January 10th, 2010

My obsession with Rudolph the Red Nosed Reindeer has now been replaced by Foofa from Yo Gabba Gabba. Since we haven't come up with a name sign for Foofa yet, I have started signing "flower" and then "pink" when I want to watch Yo Gabba Gabba. As soon as Foofa comes on the screen I get very excited! Of all the Yo Gabba Gabba characters maybe it isn't surprising that I picked the "girly" one. My parents better start looking now for a Foofa Halloween costume!

Peyton Nicole Smith

Saturday, January 9, 2010

Saturday, January 9th, 2010

Six more fish joined the family today and initially all seemed well. They were getting along well with the other fish in the tank but by the end of the night one was not looking so good. Mommy let Daddy know that if in the morning he has passed on, Mommy will get him flushed before I notice him floating belly up. With 13 other fish in the tank, they figure it may take me a while to notice he's gone.

Mommy received one more shipment of used dollhouse furniture today that she had ordered off of Ebay. It had some really fun items like the minature version of the Little Tykes Cozy Coupe and a Fisher Price minature slide. They were great and I had so much fun playing with them tonight. During the afternoon, Lucille came to watch me so Mommy and Daddy could get out and run some errands.

Since Uncle Jeff's cardiac procedure earlier in the week, he hasn't been able to lift more than 5 pounds so all three of them went to Costco together. When they were done shopping, my parents helped carry the heavy items up to his top floor apartment. My parents shop at Costco once a month for items like diapers, wipes, meat and seafood. Looking at the cart, Mommy guessed a grand total of $430 after all the coupons. Mommy herself was even surprised when she came within $6 of the total! Now she is just trying to figure out with $424 worth of Costco items why they still don't have anyting to eat in the house : )

Peyton Nicole Smith

Friday, January 8th, 2010

You can get a little glimpse into my 2 year old life by looking at the types of things in my bins. Mommy tries hard to keep things organized by putting similar things into the same bin but I don't think it is important. Mommy is long since past trying to keep up with restoring them to the right bin each night - she's run out of energy to do it that often anymore!

Peyton Nicole Smith

Friday, January 8, 2010

Thursday, January 7th, 2010

My parents say all the time I should be an actress. In the first picture you can see my distress at having to go to bed. As soon as I realized Mommy had the camera out, though, I perked right up. Gotta look your best!

Peyton Nicole Smith

Wednesday, January 6th, 2010

Anna's Ginger Thins are my new favorite thing to eat. A few months ago I had some trouble eating them and would end up with some in my trach but over the last few weeks I am doing much better with them. They are nice and thin so they fit in my mouth with it's limited ability to open without any trouble. They are also easy to break into smaller pieces. Once they get in my mouth, they dissolve really easily so I can swallow them without choking. Anna's has about eight flavors so Mommy will soon introduce some other flavors to see what I think of those.

Peyton Nicole Smith

Wednesday, January 6, 2010

Tuesday, January 5th, 2010

"Peyton" in The Game Plan

Peyton Place

"Peyton" on One Tree Hill

Peyton Manning

Today my parents learned that ranked Peyton as the #20 most popular girl name for 2009. In case you don't know the history, Mommy has always liked the name since hearing it when she was young - based on the show Peyton Place. When my Mommy found out she was pregnant with me she and Daddy discussed baby names. Mommy voted for Peyton and Daddy voted for Brooke. Because Brooke was pretty common at the time, in late 2006 my parents agreed on Peyton figuring it would be much more unique. In January of 2007, Peyton Manning won the Super Bowl and my parents figured Peyton might become more popular as a boy's name. Also in 2007 the Disney movie The Game Plan was released with the main character opposite "The Rock" with the name Peyton. Even so, how is it that Peyton has become a popular girl's name? Daddy thinks it may be related to the show One Tree Hill and it's two female characters - Peyton and Brooke. So like Mommy, I may not be the only one if my class with my name but I am still one of a kind!

Peyton Nicole Smith