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

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 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 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

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