Monday, February 28, 2011

Sunday, February 27th, 2011

Finally I am getting back to my normal self - all the smiles, hugs, tantrums and craziness.  I was feeling so good that my parents even chanced taking me to the mall on Saturday.  I have not gone out much yet since my surgery and each time I do it's hard for Mommy to try to ignore the double takes.  Mommy is convinced, though, that given the opportunity most people really are good at heart and that was proven yet again at the mall.  While I was wandering the clothing store I happened upon the full length mirror and spent a few minutes dancing and checking out my big chin.  Later, Mommy noticed a woman and her daughter looking my way.  A few minutes passed and once her husband arrived the woman approached with her family in tow.  The conversation went like this:

Woman: "She is just so cute!"
Mommy:  "Thanks"
Woman:  "How old is she?"
Mommy:  "3 1/2"
Woman:  "I just love her shoes"
Mommy: "Yes, she picked them out, she has great taste"
Woman (pointing to the hardware): "What is that for?"

So Mommy proceeded to explain what the hardware was for and why I needed it.  The woman than asked Mommy if it hurt and she said yes it did but now that the turning has stopped I am doing much better.  The family headed on their way and so did we.  It wasn't a particulary thrilling conversation but it is exactly what Mommy wishes more people would do - ask. 

Peyton Nicole Smith

Saturday, February 26, 2011

Friday, February 25th, 2011

Now that the turning has stopped the pain is finally being controlled with regular Tylenol and Ibuprofin.  The vomiting has also started to subside but a new problem is cropping up.  I am a pooping/tooting machine!  I keep waking up in the middle of the night with belly aches and until I pass the gas I am in agony.  (Once I do then anyone within a mile of me is in agony - hee hee)  Because I have been a tube fed baby all my life and never took any real volume by mouth my parents have been fortunate that I have never really had gas before.  Recently when I would need to burp I was panicked thinking I needed to throw up but once I relaxed and burped I would feel much better.  Now I am fighting passing gas because it is unfamiliar to me and by holding it in I am in a lot of pain.  This has led to some very funny conversations with my Mommy.  They go kind of like this:

"P, it's okay to go toot out of your bum, it will make your belly feel better."  With my hearing loss I don't always distinguish similar words so I then point to my tooth thinking Mommy is crazy.  So then Mommy tries again, "No, not your tooth.  When your belly hurts sometimes you make stinkies.  That's good - if you make stinkies then your belly will feel better".  I continue to look at Mommy like she is crazy and she is trying not to laugh hysterically that this is the level of conversation between us.

Peyton Nicole Smith

Wednesday, February 23, 2011

Wednesday, February 23rd, 2011

Hallelujah!  The turning is finally over!

This morning I had my second follow up appointment with Dr Morales.  Last night my parents didn't turn, they had planned on having Michelle turn on her shift.  When Mommy got ready to leave for work, Michelle said she couldn't find the screwdriver and wondered if Mommy knew where it was - which she didn't.  When Daddy came down to sign Michelle out he also didn't know where the screwdriver was.  He proceeded to look around for it but couldn't find it and he was convinced I had hidden it somewhere.

Mommy, Daddy, Grandma and I met up at Primary Children's at 10:00 for my appointment.  Dr Morales was running about an hour behind but as I waited I perked up a little and was happily playing when he came in to the room.

Daddy explained that I had not had any pin turning since Tuesday morning because the screwdriver was MIA.  Dr Morales looked me over while I cried and kicked.   He decided that my bottom jaw was already bigger than my top jaw so he figured I had a little jaw to grow into.  So after three weeks he announced that the pin turning was over.  I signed "all done", smiled and clapped at the news.

Dr Morales wants to see me back in three weeks but prior to the appointment he wants me to have an xray done of my mandible to see how well the bone is solidifying.  We also scheduled April 19th as the date to finally remove the hardware.  He said that it should just be an outpatient procedure and unless there are any serious issues I would be able to go home the same day!

Although the worst part of this jaw distraction is now over, Mommy wanted to talk a little more about the pain.  Dr Morales said it was possible to put a catheter in the jaw for a drip of pain medicine but because it is another wound site it is another place for possible infection so that is not his first option.  He explained that in the first 10 days after the surgery the bone isn't healing as quickly and so it is not surprising that I didn't have as much pain in the beginning.  It so happens that at the same time that the bone starts to heal more rapidly which makes it more difficult to turn and also more painful - I was getting turned twice instead of once which would have compounded the pain. 
It's possible that next time around, we might want to turn more rapidly in the beginning when the pain is not so intense and then turn more slowly the second half of the distraction.

Although there is no way to know now how many distractions I will need over the course of my lifetime or how soon the next one might be - it's pretty clear that this won't be the last.  Daddy asked whether Dr Morales also thought my jaw wasn't quite symmetrical.  Dr Morales could see that as well but told us that the jaw distraction is not a very precise surgery.  Once I had finished my last jaw distraction for growth (probably in my teen years) then there would be a final surgery where the jaw would be broken and moved to the appropriate place and then screws and plates would hold it in that position going forward. 

The last thing I wanted to hear about was future surgeries so I was glad when the discussion was to an end and I could go home with Grandma.  The rest of the day Grandma substituted regular Tylenol for the Tylenol with codeine and I wasn't complaining.  My parents are hoping that is a sign of the weeks to come until I can finally get the distractors removed.

BTW - Mommy found my screwdriver tonight in the cushions of the chair that I have been sleeping in most nights.  Daddy still thinks I hid it there on purpose!

Peyton Nicole Smith

Monday, February 21, 2011

Monday, February 21st, 2011

Today was such a strange day.  After being awake until 2 am I slept until 10:30 am.  I did really well and Daddy told Grandma to try to give me just regular Tylenol at noon.  That seemed to go over fine and then around 2:30 I went down for my nap.  Since I had done so well with the regular Tylenol at noon, Grandma gave me Tylenol again at 4 pm.  Shortly afterward I woke up and it was clear the regular Tylenol was not enough.  Mommy showed up around 4:30 and I was in a lot of pain.  For the next several hours I cried and kicked and fought being held despite getting Ibuprofin at 5 pm.  Around 5:30 I fell asleep again and slept for 2 hours waking up just in time for my next dose of Tylenol which was of course switched back to the Tylenol with codeine.  It took about 1/2 hour but I finally started to get some relief.  Around 9 pm I hopped on the potty and when I got off I pointed to my cheek and said, "It doesn't hurt anymore!"  It's pretty clear I still need the codeine!

Peyton Nicole Smith

Sunday, February 20th, 2011

After another rough night last night, I slept until around 10 am.  After turning I was feeling well enough that I got to go to Grandma and Grandpa Mower's and play with my cousin, Traiton for a little while.  Traiton never seemed like a very big kid but we are only a year apart and I seemed really tiny next to him.  I am still definately on the petite side and all the vomiting and reduced feedings from this surgery have not helped.  Mommy is more than a little nervous to see my weight at my next weigh in.

We went for dinner at Grandma and Papa Smith's house for a late birthday celebration for Grandma.  I had ordered some earrings with my picture in them and she must have liked them because she put them right on.  Mommy should know better than to let me in on the secret since as soon a Grandma started to open the gift I started signing and demonstrating earrings.

As you can see in the picture above, I am not such a big fan of dancing with Daddy but I try to humor him!

My parents were super happy to have my regular night nurse Michelle back on duty tonight.  Good thing too because I decided to make it an all nighter and we partied until 2 am!

Peyton Nicole Smith

Sunday, February 20, 2011

Saturday, February 19th, 2011

This is me sleeping.  Although things are starting to look up a little I am still having periods of pain.

Mommy had to wake Daddy and I up this morning so we could go get our taxes done.  It was a quick and fairly painless process and I ended up with some fun bracelets for being so good.

In the afternoon, I went to hang out with Grandma and Papa Smith so Mommy and Daddy could get some time together alone.  They decided to go to the Harley Davidson dealership to check out some used motorcycles.  Daddy used to ride a sports bike in his younger days but now he is looking for something a little slower and a lot more expensive ; )  They stopped for an early dinner and then came back to pick me up.  Grandma said the last few hours it was the best I have felt in several weeks so that one less turn really does seem to be helping a little.

Tonight was Mommy's night and I fell asleep around 11:30.  Just as Mommy was ready to call it a night around 1 am, I started crying in my sleep and punching and kicking anything that came close to me.  Mommy tried to soothe me but I never opened my eyes.  After a few minutes, I eventually fell back to sleep but the rest of the night I periodically had these fits.  Sometimes they lasted 30 seconds but sometimes they lasted 5-10 minutes.  Since I never opened my eyes even after Mommy talked to me and shook me a little, Mommy decided I was probably having a bad dream.  It certainly made for a long night.

Peyton Nicole Smith

Friday, February 18th, 2011

After the long night, I slept late today.  In the afternoon I went to my Papa's appointment with Grandma.  Unfortunately just 10-15 minutes after getting my Tylenol dose, I ended up vomiting.  A few hours later I was hurting - a lot.  When Grandma realized I probably didn't really get that last Tylenol dose Papa called Mommy to make sure it would be okay to get the next Tylenol dose early. When Mommy arrived a few minutes later I was pretty miserable and then it was just a waiting game to see when the medication would finally kick in. 

After Mommy got home she made a mad rush to call Dr Morales office.  At 4:57 pm the office had already closed so she left a message for the on call doctor.  You see once again we were heading into a weekend and I had run out of my Tylenol with codeine and there weren't any refills.  It took the resident several hours to call back but she promised Rite Aid would have the prescription for us first thing in the morning.

Tonight was a celebration of sorts, since we didn't have to turn twice on the bottom any more.  Despite only turning once on the bottom tonight, it was still a rough night for Daddy and I. 

Peyton Nicole Smith

Thursday, February 17th, 2011

My face is changing there is no denying it.  Although my parents have been through this once before with me it seems more dramatic this time for some reason - maybe it is because I don't have all the baby fat I did the last time.  Daddy is actually a little nervous that the doctor is having them turn too much and now I have too big a chin - but that was the plan - to overshoot it so I could grow into it.

Each turn is just one turn closer to being done but when it is this awful for all of us it seems like the end will never come.  Tonight I had a fill-in nurse.  She has only worked one other shift with me and that was back in November - forever ago.  Mommy thought all day about just calling and having them cancel her shift because she had a bad feeling about how it would go.  When Angel showed up at 10 pm I was fairly calm and the pain was mostly under control.  I wanted nothing to do with her and actually turned over and went to sleep.  Mommy thought she had hit the jackpot - this was way too easy!  My parents let Angel know not to bother turning the pins, they would worry about it in the morning after she left.  Mommy was getting ready for bed when she heard me crying a few minutes later.  She walked in and Angel said I had woken up, seen her and started crying hysterically.  Mommy rubbed my head and I eventually calmed down and went back to sleep.  About 2 in the morning, Mommy woke when she heard me kicking the walls in my bedroom and crying.  Apparently, I had woken up yet again and not knowing Angel was freaking out.  It took Mommy about 30 minutes this time to calm me down and get me to sleep.  At r am Mommy was woken one more time to me kicking the wall and crying.  It took a little longer this time to calm me down and at 4:30 I was 30 minutes out from my Tylenol dose so Mommy had Angel hold me down and she went ahead and turned the pins.  She figured I was already so upset might as well get it done.  Mommy held the cold washcloth to my face and I started watching my Signing Time video and had calmed down.  I was actually starting to fall asleep but all of a sudden I sat up and vomited some of my milk.  With Angel's help, Mommy got me changed and within minutes I fell back to sleep.  It was a long night but luckily we are a day closer to being done.

Peyton Nicole Smith

Wednesday, February 16th, 2011

Enjoy this smile.  It is a rare moment of happiness in just another day filled with vomit, pain and tears.  My regular schedule is a distant memory.  It's not unusual for me to be up until 1 or 2 in the morning and then sleep until 10 or 11 in the morning.  Sometimes, I will still even take a nap just a few hours later.  Since I am not sleeping soundly at night, Mommy is not sure if that is the reason for all the sleeping or if it is the medications or the pain or a combination of all three. 

Peyton Nicole Smith

Wednesday, February 16, 2011

Tuesday, February 15th, 2011

This too shall pass.....

Monday, February 14th, 2011

Despite all the vomiting and pain, I still managed to make my parents a beautiful card for Valentine's Day (okay I got a lot of help from Grandma Glenda too).  

When I woke up at Grandma Glenda's after my nap I got a surprise when Jackson was waiting there.  His baby sitter lives just a few blocks away and she had to run an errand so she dropped Jackson off for just a few hours until Aunt Kristin could pick him up.  Aunt Kristin and Mommy came to pick us up and I got to spend time playing with Jackson while Mommy ran to get some take out for her and Daddy for dinner.

My parents tried to have a nice dinner at home but eventually it was time to turn again.  They have been very lucky that Michelle has been able to turn early in the morning while I am sleeping.  I usually wake up for a few minutes, cry and then fall back to sleep but at night it is never that easy.  Tonight as I was turning I cried and told Daddy, "No, Daddy stop" and I know it broke his heart that he had to keep turning.  After days of seeing me in pain, both my parents are really struggling.  Tonight as I was crying in my bed after they were done Mommy cried right along with me.  They are counting down the number of times left they have to turn. 

Peyton Nicole Smith

Sunday, February 13th, 2011

It was a really tough day, so bad that Mommy ended up calling the on call doctor in the evening.  Shortly after turning pins this morning I vomited up not only my feeding but the meds as well.  While Mommy was visiting her father at the nursing home, I eventually cried myself to sleep with Daddy at home.  When Mommy came home a few hours later I was still asleep and Mommy started some Pedialyte and was able to get my meds into me.

When I woke up I felt a little better but it didn't last long and I was back to being uncomfortable.  About 15 minutes before I was due for my next dose of Tylenol I vomited up my feeding again.  Mommy was concerned - I was almost out of the Tylenol with codeine and it didn't seem to control the pain between the pin turnings.  She called the on call doctor and when Dr Kirby called back she called in a refill and suggested potentially turning a little less - to try for 1 1/2 turns or even 1 1/4 turns if needed.

Not surprisingly, when it was time to turn pins tonight, my parents were not looking forward to it.  After the turning, I cried for 15 minutes before falling asleep.  I only slept for a few minutes but when I woke up, Mommy convinced me to let her use an ice pack on my face while I watched videos.  An hour and a half later when Michelle arrived I was feeling much better.  So good, that I ended up going downstairs with Michelle and playing until 2 am - that's right 2 am! 

Peyton Nicole Smith

Saturday, February 12th, 2011

Although I slept pretty well last night, today was definately rocky.  After Daddy woke up and I got my pain meds, it was time to turn my screws.  Mommy made the mistake of trying to conserve the Tynenol with codeine and gave me regular Tylenol instead - big mistake!  For the next 3 1/2 hours until I was able to get the Tylenol with codeine I was miserable.  I spent long periods of time crying and then would sleep from exhaustion and then I would wake up and it would start over.  When I was finally able to get my does, I fell asleep within just a few minutes and when I woke up a short time later I bounced off the couch and announced "I feel better!"  Sure enough I did and I was raring to go.  Mommy decided to take the opportunity to get out of the house so we went to an electronics store to get a few new DVD's for my collection.  I was going strong until it was time to turn the screws in the evening.  Even with the Tylenol with codeine I was obviously uncomfortable and slept restlessly for Daddy.

Peyton Nicole Smith

Saturday, February 12, 2011

Friday, February 11th, 2011

It's easy to see what is happening on the outside but not always easy to know what is happening on the inside with my jaw distraction.  I thought this picture shows it pretty well.

Today was my follow up appointment with Dr Morales.  It was a quick appointment and he thought the pin sites looked good but he wants my parents to change up the turning on the bottom pins.  Currently my parents turn the top pins and bottom pins 1 turn twice a day.  Now he wants them to continue to turn the top pins 1 turn twice a day but start turning the bottom pins two turns twice a day.  He had told my parents in the beginning that he wanted to distract the bottom as much as the hardware would allow but probably wouldn't distract the top quite as much.  He wants them to continue this new protocol through next Friday and then go back to 1 turn for both the top and the bottom until we go back to see him on the 23rd.  Hopefully at that point we will be close to being done.

When my parents went home tonight and turned the bottom pins twice it became very clear very quickly that the second turn was much more dramatic.  Instead of a few minutes of crying I kept crying and kept crying and kept crying.  Since I can only get Tylenol every four hours and my parents hadn't been expecting a problem, they had given me regular Tylenol 1/2 hour before turning the pins.  Then they got to try to console me for 3 1/2 more hours until they could give me the Tylenol with codeine.  They even gave me some Ibuprofin shortly after turning the pins but it didn't seem to touch the pain at all.  My parents started having flashbacks to my first jaw distraction at 9 months old.  I couldn't get comfortable and kept wincing and pointing at the areas that were hurting me.  After a few hours, I finally fell asleep more from exhaustion then relief but it didn't last long before I was back awake and hurting.  It sure seemed like a long few hours until they could give me the Tylenol with codeine but within minutes I fell back into a restful sleep and continued to sleep well the rest of the night. 

Peyton Nicole Smith

Thursday, February 10th, 2011

As far as the pin turning goes, I have been doing great!  Unfortunately, I am still having problems with my tummy and pooping when I need to so I have had a few rough nights.  I was grumpy again today until early afternoon when I finally pooped and then life was good again.

In the evening, I found a new game to play with Chili - if I put some popcorn between my toes he will very carefully pull it out.  He's very gentle! 

Peyton Nicole Smith

Tuesday, February 8, 2011

Tuesday, February 8th, 2011

Although Michelle said I had a rough night (gas) and Grandma reported I was contrary all day (not sure why) after I came home with Mommy tonight it was business as usual - terrorizing my furry brothers, painting myself from head to toe and spilling my soda all over the floor!

Not sure how many of you follow the news in Utah but last night an article was posted on about the potential closing of Utah Schools for the Deaf and Blind (USDB) due to budget cuts.  You can see the article below.

Whether I am attending USDB next year or not, there is no denying that I have made great strides in the short time I have been attending the preschool program.  Although the local school districts no doubt have great special education programs, my parents can't imagine any other program that can come close to the one at USDB for children with hearing loss. 

Schools for deaf and blind may be cut from education budget

February 7th, 2011 @ 6:08pm

By Marc Giauque

SALT LAKE CITY -- A legislative appropriations committee on Tuesday will talk about closing the Utah Schools for the Deaf and Blind, as well as several other options as they look for ways to further trim the budget.

The proposal doesn't sit well with parents whose children attend these specialized schools.

The idea would be to shift the services currently being provided by the schools to individual districts. It's one of the items being floated by the Utah School Board as it tries to find a way to cut $20 million from its budget.

"We made many recommendations before this one was made," said School Board Chairwoman Deborah Roberts, "but we still have a lot of session left."

"Some very good, very important things may be left by the wayside. That is the reality of not having the funding to do the things you need to do." -School Board Chairwoman Deborah Roberts

Roberts said a great deal of study would have to be put into the idea before any real action was taken.

But Roberts also said they have to look at all options, as they've been tasked with ways to further cut their budget. "None of these cuts are good," Roberts said. "None are wise. "

Many parents of students attending these schools are concerned about the future of their children's education.

"This is my kid and this is my child's education that potentially they're going to flush down the toilet," said Heather Frost, whose son attends one of the schools.

Frost believes it simply would not be cost effective for the district to pick up the services the state school currently provides. "How are they going to provide orientation and mobility, audiology instruction, ASL (American Sign Language) instruction, expanded core curriculum, interpreters or brail?"

The program has been dealing with some in-fighting over how hearing-impaired students are taught. Some of that battle has risen to the level of the School Board.

Roberts said that has weighed on some board members' decisions to take a second look at the program -- but she said if the Board has to make further cuts, they simply have to return to the core of what they do. She said that means providing the state curriculum for all K-12 children.

"Some very good, very important things may be left by the wayside," she said. "That is the reality of not having the funding to do the things you need to do."

Peyton Nicole Smith

Monday, February 7, 2011

Monday, February 7th, 2011

A note from Mommy:

This is a picture I wouldn't have expected a week ago.  Although we kept hearing the pain shouldn't be so bad with the jaw distraction, we approached this surgery with trepidation after her internal distraction several years ago was so painful.  It is still no fun to hold Peyton down and have her try to kick and hit us to get us to stop, but when she is able to stop crying and watch a video less than five minutes later as if nothing happened it has made this process so much easier.  The other day she pointed to the distractors and signed "Daddy hurt" which definately didn't make Travis feel very good since he is the one doing the pin turning while I am the unofficial strait jacket.  We also now have the added bonus that Michelle is able to do one of the pin turnings at night while Peyton is sleeping - I am still in awe of that statement.  Jaw distractions are necessary evils in the life of a child with Nager and one that will be repeated as she continues to grow.  We are so lucky that this time around the process is not so emotionally scarring as it was the last time.  I am currently a big fan of the external distractors.  When we made the choice for the internal distractors the first time it was partially a decision based on how awful the external hardware looks.  I can only imagine the stares we will get once we start taking Peyton back out in public with us - it really does appear as if we have some archaic torture device strapped to her face.  But I will be kissing those distractors once they come off if this is how it is going to be!

Sunday, February 6th, 2011

This morning my parents made my day by dropping me off at Grandma and Papa's for an hour while they went to Costco.  I got to hold Sadie but when they came to pick me up I was definately not ready to go and sobbed as we left.  Luckily, Chili was a good substitute when I got home.

As it appeared I would not be taking a nap, Mommy and I then went to Grandma and Grandpa Mower's where I got to play with my cousins for a little while.  On the way home, Mommy stopped by the car wash and it was only moments before I was fast asleep.

Are you ready for some football???   Apparently, I wasn't because I ended up sleeping through the pre-game, kick off and most of the first half.  But Michelle made it up to me later when we watched the Puppy Bowl on Animal Planet after my parents' went to bed!

Peyton Nicole Smith

Saturday, February 5th, 2011

My parents were super thrilled this morning when Michelle said she was able to turn my pins last night while I was sleeping.  When Mommy had heard other parents say they could turn pins while their child was sleeping, she thought they were nuts.  But everything about this jaw distraction is completely different than the last one.  In fact, today I dropped the serious meds and had two doses of regular Tylenol all day.  Good thing because the Tylenol with codeine was hard on my tummy.  In the early afternoon, Mommy was trying to take a nap and then Daddy came and got her.  He said I was sitting on the potty crying for her.  OK so I won't be too graphic but I was seriously backed up!  The first 15 minutes I spent on the downstairs potty sobbing continuously.  I was able to pass some of what I had in me and then I requested to go to the upstairs potty where I sat crying for another 15 minutes.  Mommy sat on the floor next to me rubbing my back and trying to reassure me.  Finally she heard a plop and I started clapping and it was all over.  Whew - couldn't stop that codeine soon enough!

Grandma and Papa Smith called a short time later and said they had something to show me.  Daddy was pretty sure it was going to be another dog and sure enough in they walked with the newest member of the family - Sadie.  She is a 10 week old poodle and I am in love!!!  She is just a few pounds and super tiny so I can carry her around (with supervision of course).  Michelle was coming at 5 pm so my parents could go on their monthly date night so Sadie and my grandparents left pretty quickly but Grandma promised me I would get to play with Sadie all day on Monday.

My parents had a yummy dinner at Market Street although the waiter was so terribly slow that they weren't able to get to the movie in time.  They stopped by Kohl's to pick up some more shirts for me since most of my clothes won't fit over my head with the distractors and then they took a stroll for old time's sake on the football field at Alta High School in the frigid cold.  They decided to head home early.  Good thing, I had fallen asleep at 6:30 pm and with two feedings while sleeping my belly couldn't handle it.  I had been upset and signing "Mommy" to Michelle and just as my parents came back home I ended up throwing up.  But like usual, once I got it up I was feeling great and therefore stayed up until almost 1 am. 

Peyton Nicole Smith

Saturday, February 5, 2011

Friday, February 4th, 2011

No photos today, sorry!  Since Daddy went back to work today in the office and Mommy worked from home my schedule had to adjust a little.  I didn't go to bed until 1 am so at 6:30 before Daddy dropped me off at Grandma's my parents had to wake me up to do pin turning.  As soon as it was over I drifted right back to sleep!

I had a great day at Grandma's with no problems.  I didn't even wake up until 10:30 am and still managed a 2 hour nap on top of that before Mommy came to pick me up at 4 pm.  When Michelle arrived at 10 pm tonight not surprisingly I was still wide awake and ready to play!

Peyton Nicole Smith

Friday, February 4, 2011

Thursday, February 3rd, 2011

I had a much better night last night with Michelle, although I didn't fall asleep until 2 am!  While we watched Caillou on demand, I let Michelle clean my pin sites without a fight.

In the morning, my parents turned my pins again and like the last two times I was not happy about it but was able to be distracted pretty shortly afterwards.  By mid-morning my parents were ready for a little break so they asked Grandma Glenda if she could take care of me for a while.  Daddy got in a short nap and Mommy ran a few errands.  When I woke up from my nap, Mommy came to get me and I had lots of energy to run around until bath time. 

When Michelle arrived at 8 pm, my parents were having a heck of a time trying to get my teeth brushed and my trach tie changed - I was just completely wound up.  Michelle watched as my parents turned my pins and after a few minutes I was ready for some soda and crackers while my parents went up to bed.

Peyton Nicole Smith

Thursday, February 3, 2011

Wednesday, February 2nd, 2011

Michelle decided it was easiest to keep me on the couch with her during the night.  It took all night to clean the pin sites because every time she would touch me with the qtip I would wake up very unhappy!  She did the best she could but needless to say until she stopped poking me I didn't get a great night's sleep.

Mommy came down at 5:30 am and spent some time updating my blog while I slept next to her.  I woke up around 8 am.  My parents were not looking forward to turning the pins but they knew they needed to get it done.  I had gotten Tylenol with codeine and my antibiotics at 8 am and started my feeding and then about 8:30 they headed up the stairs to turn the pins.  I didn't make it all the way up the stairs before I ended up vomiting.  Mommy figured it was probably the meds on an empty stomach but my parents turned off the feeding while they turned the pins.  Mommy held me down while Daddy got out the wrench and turned each of the four sites one turn.  Since I hadn't had a bowel movement since Sunday night, Mommy decided to give me a suppository since I was already upset with them about the pin turning.  As soon as they let me up, I stopped crying and asked to go to the potty.  For the next few minutes I was so distracted by the suppository that I pretty much ignored the pins.  My parents hate having to do it but compared to the pin turning from my first jaw distraction this seemed to go much better.

After the drama of pin turning, I asked Daddy to set me up a tent.  First, he just covered the dining room table with blankets but eventually he got out the camping tent and set it up in the front room.  We threw some blankets and pillows in there and I demanded that every family member (including my furry brothers) get in the tent with me. 

I had a great morning and by 1 pm I was starting to wear down.  I had fought Michelle putting ice on my swollen cheeks all night but I agreed to let Mommy try a wet washcloth and boy did that feel good!  Eventually Mommy added the ice in and I was loving it.  Any time she moved it away for a second I demanded she put it back.  In fact, I fell asleep leaning against it (you can see the picture Daddy took above).  I took a 3 1/2 hour nap and was primed and ready to play when Jackson, Kristin and Lonnie came by with dinner.  I hadn't seen Jackson in weeks and he didn't even seem to notice the pins.  I kept pointing at them but he wasn't interested.  He brought me a Fisher Price video camera and we had a great time running around the house.  Too much running if you ask Mommy and Daddy.  We ran into each other several times and there were other several near misses.  Shortly before they left, though, I tripped and for the first time since moving into the house, I hit my head on the fireplace.  Man it was a bleeder but eventually it stopped enough that we put a Dora band aid on it and I was back running around!

I had a chance to watch a little Caillou before Uncle Jeff and Viv stopped by to say hi.  I saw Uncle Jeff in the hospital but I hadn't seen Viv since before Christmas.  Viv showed off her new sign language skills.  She and Uncle Jeff surprised me and are taking beginning sign language classes so they can sign with me!  Just before they left for the night, Michelle arrived for her shift.  I was nice and wound by that point!  At 8:30 pm, Michelle watched as Daddy and Mommy turned my pins again.  Just like this morning, I cried for a few minutes afterwards but a little soda and some Caillou was enough to distract me.  When Mommy went to bed at 9 pm, I was happily watching TV with Michelle.

Peyton Nicole Smith

Wednesday, February 2, 2011

Tuesday, February 1st, 2011

A note from Mommy:

Peyton woke up around 5 am to use the potty and then watched a video for about 30 minutes before falling back to sleep.  The resident stopped by at 7:30 just as Travis was arriving.  She gave us the wrench for turning the pins and explained that we would need to turn each pin (4 in total) one turn twice daily and clean the area each day with saline and neosporin.  We would need to start turning Wednesday morning. She said she would sign the discharge papers right away and we could leave when we were ready.

A short while later, Peyton woke up for good and as soon as she saw Travis she signed and said "home".  We let her know that she was going home today in just a short while.  While we waited for the paperwork to be completed and the prescriptions to be signed, we had the nurses start a feeding.  Normally Peyton gets 240 cc's over about 25 minutes.  Since Peyton often has trouble with the first feeding of the morning, we asked them to run 125 cc's over an hour.  About 25 minutes in we noticed that the pump didn't seem set correctly and realized they had set it for 300 cc's over an hour which would give her 125 cc's in just under 30 minutes.  About that time, she signed that she was sick and we turned off the pump.  She said she needed to go potty but before we could get there, she vomited a little.  She still wanted to go potty so we got her up and she peed.  As soon as she was done she told us she said "much better".  We got her changed into some clothes and started to clean up the room while I went down to the pharmacy.  They opened at 9 am but said they would need about 15 minutes to get the presciptions filled.  I met up with Kristin and my mom, Marilyn and we headed back upstairs, stopping to get some coffee.  We spent the next few minutes drinking coffee and packing up the room.  On the way down, we stopped by the pharmacy and picked up the medications and were on our way. 

On the way home, Peyton was happy playing with her balloons but as soon as we walked in the door she vomited a little more.  We got her into some fresh clothes and off she went.  She had crazy energy all day.  Travis let me take a nap and from around noon to 4 he did his best to keep her entertained while I slept.  That was easier said than done because she was feeling pretty good and was running around the house chasing the dogs, jumping on the bed and throwing herself face first into the pillows.  The pain was obviously under control.

When I woke up, we got Peyton into the bath.  She had a great time playing but it was pretty clear that she didn't want us messing at all with the hardware.  We were able to clean it up a little while washing her hair we accidentally poured a little water over the hardware.  Then once she was dry and in a clean outfit we changed her trach and trach tie.

Glenda and Russ invited us over for dinner so we wouldn't have to cook and we were happy for the meal and the extra set of hands.  Just like at our house, Peyton was all over the house chasing Pandy and Coco.  She sat at the table briefly but then went looking for Duchess the cat. 

We got home arund 7:30 pm and found out that Michelle would be able to work the night shift.  She arrived about 8:30 and was more than a little shocked to see Peyton runing around the house.  But shortly after she arrived, Peyton started to slow down.  While I gave her an update on the last 24 hours, Peyton watched Yo Gabba Gabba.  At 9:30 when the nursing supervisor arrived for the assessment, Peyton was starting to fall asleep in my arms.  By the time the supervisor left at 10 pm, Peyton was fast asleep.  Michelle and I made the decision to set her up on the couch with Michelle for the night.  We had given Michelle the task of trying to clean the hardware while she was asleep and with Peyton being so jumpy, we figured she would be a little more relaxed if Michelle was close.  After getting Michelle set up with everything she would need for the night, off to bed I went thankful we had a great nurse to keep an eye on her through the night.