Tuesday, March 30, 2010

Monday, March 29th, 2010

Feeding therapy has been quite the challenge for the last six months or so, not because I don't want to eat but because I only want to eat about five items and refuse to try anything new. In the last few weeks, though, that has changed a little. Suddenly, I am willing to try some new foods. Today, I started chowing down on a Velvetta cheese slice. Now, I only took a few tiny bites but Mommy was still thrilled. When my food choices are limited to crackers, cookies and ice cream adding a new item is a big deal!
Peyton Nicole Smith

Sunday, March 28th, 2010

Barney and Yo Gabba Gabba have been replaced by Caillou as my favorite TV show. In case you haven't seen it, it is about a four-year-old boy who has a little sister and goes to play school. As soon as the opening song comes on I start signing along and hop on my tricycle just like him. So recently, Mommy found a little used Caillou playset with Caillou, his bicycle, Rosie (his sister) and the carrier for her. Really cute and really surprisingly expensive for tiny plastic figures. I was over the moon when I saw it and played for several hours with it before it was time for my nap. Daddy let me take them to bed with me and eventually I fell asleep. As Daddy was getting me situated, he stepped on Caillou and Mommy was pretty amazed at how many pieces I broke into. My parents hatched a plan, while Daddy went to run some errands he would stop by a store and get some super glue. So when I woke up, Mommy told me Caillou went for a ride with Daddy when I started asking for him. Unfortunately, the store Daddy went to didn't have super glue so he came home empty handed. Mommy was a little worried about the psychological scars when Caillou fell apart on me but she gave in and gave him back to me. Sure enough, a few minutes later I broke back into pieces but I wasn't too concerned, I just carried his head around with me. Eventually, Mommy was able to get to a store with super glue and Caillou was put back together again!

Peyton Nicole Smith

Sunday, March 28, 2010

Saturday, March 27th, 2010

I am such an artiste! I have liked markers and crayons (the walls and my clothes will attest to that) over the years but my new passion is water colors. Sometimes I use a bruch and sometimes I use my finger but it is always fun! Mommy has lots of my works of art on the fridge and I add to it most days. Mommy knows that there will be many more pieces to come so at some point she is going to have to start throwing some of them away but it is awfully hard for her!
Peyton Nicole Smith

Friday, March 26th, 2010

There are a lot of strange happenings going on in the Smith household these days. For those of you in on the secret, you'll hear more over the next month. For those of you not in on the secret, I promise all will be revealed soon! (No, I am not going to be a big sister!)
Today I had a six month review with Karen my occupational therapist, Kirsten my hard or hearing teacher and Wendy from the regional center. I am going to take a break from therapy for the next month as Mommy concentrates on some work priorities. It was hard for Mommy to say goodbye knowing it may be a little while before she sees them again but she knows they have given Mommy all the tools to keep me progressing during the time off. Mommy doesn't thank my early intervention folks nearly often enough so she wants to take this opportunity to say it publicly. I have been very lucky to have great therapists who got involved with me very early and so it is no surprise I am doing so well. But all those involved with my case became more than just therapists sharing their expertise - they became great friends who provided emotional support to Mommy during some tough times the last few years. So a shout out to all of you!
Karen - occupational therapy
Kirsten - hard of hearing teacher
Terri - special education teacher
Michael - physical therapy
Karen - feeding therapy
Jan - vital stimulation
Wendy - regional center coordinator
Spencer - music therapy
Peyton Nicole Smith

Thursday, March 25th, 2010

Mommy has never claimed to be a pro in the hairstyle department. As I got older and my hair got longer Mommy started to pull it back then on to pig tails and occasionally a ponytail. So when the nurses want to experiment on my hair that is right up Mommy's alley. You can see above how creative Michelle got!
Peyton Nicole Smith

Thursday, March 25, 2010

Wednesday, March 24th, 2010

For Christmas, my parents bought me a boxed set of the "If you give.." books. I didn't start reading them until a month or so ago. Now I am a fanatic. I pull these out every day multiple times during the day and want to be read each of the five books in the set. I am particular about the order in which they are read and I always save my favorite for last - If You Give A Mouse A Cookie. As far as my parents are concerned, the books were cute the first 20 times through but now they are getting a little tired of them.
Peyton Nicole Smith

Tuesday, March 23rd, 2010

This just proves that anything can be used as a toy! I came up with this all on my own - using the dog bowls to "skate" down the hallway.

Peyton Nicole Smith

Wednesday, March 24, 2010

Monday, March 22nd, 2010

Today we met the new day nurse for Tuesday's-Thursday's. She seems really nice and my parents are very excited to be fully staffed again. But because this seems to be the way our life is going right now, just hours after meeting her Mommy found out from the agency that the new nurse has some emergency family problems to attend to. So before she has even started her first day with us, Mommy learned that she can't work 7-4 three days a week - she can't start until 10 am each morning. Not a lot Mommy can do it's either no nurse three days a week or a nurse that doesn't start until 10 am each morning. At least we finally got our night nurse back tonight.
Peyton Nicole Smith

Tuesday, March 23, 2010

Sunday, March 21st, 2010

There wasn't enough wind today to fly the kite but it was nice and warm so we got to head to the park. I took off my shoes and ran through the grass as we headed home.
My parents are starting to do some spring cleaning and I found my old binkies. I didn't really use them much when I was little but I am experimenting with them now. In fact, I had to bring a few to the park with me. They don't stay in my mouth for more than a few minutes at a time but my parents figure there isn't a lot of harm in it as long as I don't start sucking on them all the time!
Peyton Nicole Smith

Sunday, March 21, 2010

Saturday, March 20th, 2010

I had a pretty good night for Diane last night and my parents were sure excited to have a night nurse again for only the second time this week. Both of them really needed to catch up on some sleep. During my nap, Daddy and Uncle Jeff went to a movie so Mommy took me to the park when I woke up. It was breezy and there were quite a few kites up. Unfortunately, Mommy hadn't thought to bring my new butterfly kite but she told me we would go back to the park tomorrow with Daddy if it was still windy.

In the evening, my parents got a call from the agency that Diane must have caught my cold and she would not be working tonight. At this point, my parents can't help but laugh. In the last week, only 1 of my 5 day shifts were covered and only 2 of my 7 night shifts were covered - not great odds! Good thing my parents invested in that blow up mattress...

Peyton Nicole Smith

Friday, March 19th, 2010

For the first time this week I had a day nurse. Michelle, my new day nurse last Friday, was also my day nurse today. She is a pro and Mommy had no concerns leaving me with her while she went to work. Mid-morning it was so nice that Michelle packed up my stroller and we went to the park. At noon, Kirsten came by for our therapy visit and got to meet Michelle for the first time.
Uncle Jeff and Daddy came home at the same time and we had a nice dinner. The last time I saw him he was with his girlfriend and I was a little standoffish. Today we were back to normal with me jumping all over him!
Peyton Nicole Smith

Friday, March 19, 2010

Thursday, March 18th, 2010

I had another good day with my day nurse, Daddy today. The weather was beautiful so he took me out for a little while in my coupe car. Unfortunately, we are without a night nurse again tonight so Mommy is taking her turn to stay up with me. But I was a good girl and fell asleep quickly tonight so she could get some work done while the house was quiet.
Peyton Nicole Smith

Wednesday, March 17th, 2010

Because we still don't have a day nurse and since Daddy had already planned on taking the week off he became my day nurse today. We stayed close to home due to my cough but I had tons of fun playing and watching videos. The first strawberries are out this season and are huge and I like to spend a little time licking/biting them - yummy! Thankfully, our weekend night nurse will be able to cover for our week night nurse who is out sick tonight - my parents certainly need the rest.
Peyton Nicole Smith

Tuesday, March 16, 2010

Tuesday, March 16th, 2010

To make our 6 am check in we were all up at 4:30. I got dressed in my U of U scrubs for the big day. Upon entering Lucile Packard, security asked if anyone had a cough so I had to put on a mask which I was not happy about. The rest of the parents waiting anxiously with their children in the preop area also looked a little anxious so Daddy walked me around out in the hallway while we waited to be called back. About 20 minutes later it was our turn and I was asleep on Daddy's shoulder. The nurse started asking a few questions and when my parents filled her in on the last week and a half events, she immeadiately paged the anesthesiologist. The anesthesiologist came down shortly and after getting the details from us, it was clear there would be no surgery today. In fact, the look on her face was "why are you here?" So Mommy explained all the calls she had made and all the instructions they were given to show up. Before surgery could be cancelled, though, to be politically correct, she first called the surgeon's resident, Jason. In an accusatory tone she said to him, "Your patient is here and she is sick. Maybe not as sick as a week ago but she is still sick." After some hushed comments, Jason apparently was going to call Dr Schendel. While we were waiting, the anesthesiologist explained that even though my lungs sounded clear and I hadn't had a fever in several days it was more than a little risky to attempt a long complicated surgery when my trach would be difficult to get to because the face was the operative site. Totally made sense to my parents and they didn't feel bad at all. So with that, back in the car we went and back to the hotel to pack up. I was asleep almost immeadiately and woke up only a few minutes before we got home. The rest of the day my parents traded off trying to nap a little to make up for the last few nights while I had a great time drinking milk, eating crackers and watching some of my favorite videos. Our night nurse is still out sick so Daddy will be night nurse again tonight. The agency has still not found a day nurse for me so Daddy will be my day nurse for this week as well. Despite all the stress of not having nursing we are all so grateful to be home.

Peyton Nicole Smith

Monday, March 15th, 2010

Yesterday afternoon I fell against the entertainment center while playing around and now have quite the scratches on my nose - my parents figure in a few short days no one will even notice once I have the large scars down my cheeks from the jaw distraction surgery!
Unfortunately my night nurse called in sick last night so Daddy stayed up with me. It was one of my worst nights in a long time with lots of coughing and neither of us got any sleep. My parents had planned to leave for Palo Alto in the early afternoon but before doing so Mommy got on the phone to see if anyone really thought surgery would happen tomorrow. First she started with the surgeon's office and his medical assistant instructed my parents to plan on showing up tomorrow morning as planned. Mommy wasn't happy with that answer so she then called and left a message for the operative nurse anesthetist who was on call. As the day passed, though, it became clear that the nurse was not going to return the call. Once again, Mommy called the surgeon's office and once again was told that we should still plan on showing up for surgery and letting the anesthesiologist decide in the morning whether to call off surgery or not. Now my parents have been through this a few times before, despite what the surgeon's office was telling them they knew an anesthesiologist was never going to move forward with surgery. However, now that the surgeon is in private practice they had to sign a form that if my parents cancelled surgery less than 48 hours before surgery they would still be responsible for the surgery fees. If the surgeon cancelled surgery due to my illness then that was fine but my parents couldn't cancel the surgery themselves so they knew they were stuck. So after Mommy dropped the dogs off for boarding at Camp Bow Bow my parents got me and all my stuff loaded up and off we went. Halfway to Palo Alto the nurse from the anesthesiology department called my parents for the standard night before surgery call. Once again, Mommy explained the coughing and vomiting and as you might have already guessed the nurse said to still plan on showing up in the morning at 6 am for check in.
I slept most of the ride down and I needed a few hours to burn off some energy in the hotel before my bath and bed time. For the first time, I slept in bed with both of my parents. Let's just say it was not a good night's sleep for anyone but we all enjoyed falling asleep together for the first time.
Peyton Nicole Smith

Sunday, March 14th, 2010

With the time change last night, I ended up sleeping in a little this morning which was great for my parents. I even got a whole feeding while asleep which is pretty unusual in the morning. My second feeding of the the day, though, I didn't even make it all way through before vomiting. This was even more strange because I hadn't been coughing first and I don't have any sign of a fever. It is certainly looking less and less likely that I will have surgery on Tuesday. My parents will call first thing in the morning to give an update and see what they have to say.

Peyton Nicole Smith

Sunday, March 14, 2010

Saturday, March 13th, 2010

After a quiet night, I was itching to get out of the house today to get to the park. While Daddy was running some errands, Mommy and I headed to the park but we weren't able to stay long. It was only in the 50's and with the wind chill factor it was probably closer to the 40's. I noticed a little boy on a scooter and wanted to try it out so Mommy agreed to go to Toys R Us to see if they made a scooter in my size. She figures with my jaw surgery coming up I will be spending a lot of time in the house and a new distraction might be a good thing.
At Toys R Us, though, I was not interested in the scooter and quickly hopped in a Little Tikes pink coupe car instead. So what choice did Mommy really have? That's right, I got the coupe car. When Daddy arrived home later he very nicely agreed to spend the next hour putting it together for me. My parents call it the Fred Flinstone car because it requires me to power by moving my feet which was a little difficult on our wood floors so Daddy let me take it outside on the sidewalk to get more traction. I am not very fast yet, but I love it!

After nap time, Uncle Jeff and his new girlfriend (she is from Utah but will remain nameless at this time) came by for dinner. Normally, I am completely wound up when Uncle Jeff is around but I was much more reserved tonight. In fact, towards bedtime I sat in the living room watching Caillou by myself while the adults were in the front room talking. Uncle Jeff had brought me some of his favorite Dr Seuss books and a HUGE pink bear and before he left for the night he read me each one of them.

Peyton Nicole Smith

Friday, March 12th, 2010

Although she can only work a few days a week, my new day nurse Michelle started today. Mommy spent almost an hour showing Michelle my routine and I must have known what was coming because I was clinging to her. Eventually, Mommy knew she would ahve to make a clean break and that is when the waterworks began. Even from the office, Mommy could hear me sobbing! But it didn't take Michelle long to make friends and when Mommy came to check on m a few hours later I was sitting on the couch next to her getting my nails trimmed. I even went down for my nap without a fight.

I am still having a few coughing fits during the day but with some saline and my HME it hasn't led to any more vomiting. In the afternoon I continued with my extreme eating by trying pureed green beans. Although more ended up on me then in my mouth I decided they were pretty good when just a few weeks ago I wouldn't have even considered them. Tonight my new weekend night nurse Diana started so my parents are hoping for a quiet night for everyone's benefit.

Peyton Nicole Smith

Friday, March 12, 2010

Thursday, March 11th, 2010

My parents figured with my URI returning there is no way they would want to do the preop appointment today - boy were they wrong! So off we all went to Palo Alto for what my parents knew would be a 5 minute appointment after a 2+ hour drive.
I was pretty good going down and due to lack of construction that we normally ran into - the drive took only 2 hours and my parents ended up an hour early to the appointment. Now that the surgeon is in private practice they went to a new location. He has joined a group of mostly cosmetic doctors so when we entered the office it was a very different experience then the previous appointments at Lucile Packard. First, this was a clinic obviously catering to high end adult clients - not children. There was nothing kid friendly about the place (unless you call watching videos on each of the doctor's specialties on a big screen tv kid friendly). The office manager seemed profoundly irritated that we were early but agreed to let us be seen because our surgeon was available. Once in the room, it only took a few minutes before Dr Schendel arrived. As expected, he explained to my parents the surgery (which we already knew about from our preop appointment in September of last year). He said as long as I was feeling better by Tuesday morning then surgery would go on as expected. So in about 4.5 minutes, the appointment was over. We had a little paperwork to be filled out and while we were waiting my parents heard the sound known to all parents that signifies terror (except my parents who usually laugh) the sound of a really bad diaper. The smell was awful between soy formula and pedialite. About that time, the office manager walked back in and Mommy asked her where the rest room was. Initially she said it would just be a minute more to get the paperwork but when the smell hit her she must have changed her mind and showed Mommy the exit. The look on her face was priceless - nothing like a stinky diaper in a clinic where everyone is getting Botox! Hard to maintain that spa like feeling! After the diaper change (again, not a kid friendly place so Mommy had to set me on the ground in the restroom to change me - ick!) we were able to get the paperwork and get back on the road. I slept the car ride home. But once we got home I was in no mood to be moved around and started crying which started me into a coughing fit that eventually led to vomiting. That seemed to help the coughing, though, and once I got cleaned up I was feeling much better. When I went to bed tonight I had another coughing fit start up but after about 20 minutes eventually settled down and went to sleep.
Peyton Nicole Smith

Thursday, March 11, 2010

Wednesday, March 10th, 2010

Just when my parents were thinking they had dodged a bullet, here we go again! Tuesday night I started running a fever again and then came the coughing and then the heart rate increased. Yep we are right back where we started. My parents had the night nurse start back on the Tylenol every four hours and the breathing treatments every six hours. By this morning I was in a pretty good mood and wanted to play so Mommy kept up on the meds throughout the day. By early afternoon, I was starting to slow down and while Mommy was interviewing a potential day nurse (don't get too excited, she can only work two days a week) I was feeling so awful I fell asleep in her arms. When Mommy finally got me moved to my crib and hooked up my pulse ox my heart rate was in the 150's-160's when normally they are closer to 80's-90's. In fact, my heart rate is actually higher today then a few days ago when I first got sick. After a few hours of sleeping, though, I woke up in a pretty good mood but Mommy made me return to my "sick bed" which I was not happy about. Even with Tylenol I was still running a pretty good fever but as the night wore on with the help of Pedialite, breathing treatments and some rest I was in a much better place when I went to bed - my heart rate was down to the 120's. Whew!
Peyton Nicole Smith

Wednesday, March 10, 2010

Tuesday, March 9th, 2010

I had a great night's sleep last night and was raring to go this morning. My mood had improved over yesterday and as long as Mommy kept me stocked with food, drink and videos I was a pretty good girl. Mommy even promised that if I went down for my nap without a problem we could hit the park this afternoon. Unfortunately for her, the nap was not to be. It started out well when she put me to bed I layed right down and rolled onto my side to play with my Yo Gabba Gabba figurines. But after about 10 minutes play time began. The bed became my personal trampoline and I spent close to 2 hours doing everything in bed but actually sleeping. Finally Mommy threw in the towel and got me out of bed - no nap today!
In the afternoon, I surprised Mommy be being open to some new food choices including oatmeal and pear baby food and papaya slices.
Peyton Nicole Smith

Tuesday, March 9, 2010

Monday, March 8th, 2010

I'm not going to lie, this no day nurse thing is pretty tough on all of us. Although I was feeling much better physically today, Mommy noticed that emotionally I was on the edge - very whiny and needy - which put Mommy on the edge right there with me. This would be a challenging day in the best of circumstances but add to that Mommy having to work and a pediatrician's appointment on top of it and it was near impossible. On the way to the pediatrican's appointment Mommy stopped to get the mail and as if the day could not get any worse she got bad news. My pediatrician is leaving the practice at the end of April. Now Mommy was devoted to my first pediatrician, Dr Scott, and when she moved across the country she couldn't imagine finding anyone else she would like as well. But Dr Scott left me in capable hands when she referred Mommy to her close friend, Dr Emge. Now that I am older, I don't visit Dr Emge very much but she is a huge support to my parents because of all the paperwork, referrals and prescription refills she has to deal with. Once Mommy got into the room Dr Emge clarified that she is leaving the current practice at the end of April and then taking a couple month break but will eventually return to a different group practice. Huge sigh of relief for Mommy although arrangements will have to be made for the few months she is not working. Once we got past that little business it was on to Mommy's list (and when she sees Dr Emge there is always a list).

1. TB test
2. Blood draw for preop appointment on Thursday
3. Prescription refills for my respiratory medications
4. New order for the home health agency because I am moving from infant to children's OTC medications (yes, this requires an order - did I tell you how much paperwork Dr Emge has to sign for me?)
5. Exam for the painful diaper changes I have had recently

Dr Emge's nurse used to work in the NICU so she felt pretty confidant she could get blood out of me despite Mommy's horror stories from the past. She played with me for a while and because she was so calm I let her "look" at my veins for quite some time without a peep. When it came time for the actual blood draw it took Mommy and another nurse to hold me down but she got it on the first stick! Mommy is officially her biggest fan at this point. As if the blood draw wasn't enough to ruin my visit, then it was on to the TB test. Although it was a small needle and didn't take long it succeeded in turning me off to the whole experience and I kept pointing to the door to leave. Not so fast! I still needed the exam from Dr Emge which required a look see and swab of my diaper area to add insult to my two previous injuries. After all that fun I was ready to go at that point and after driving in rush hour traffic we finally made it home.

Whew - can't wait to see what tomorrow holds!

Peyton Nicole Smith

Monday, March 8, 2010

Sunday, March 7th, 2010

As Mommy suspected, I am getting sick. Why I seem to get sick right before my surgery dates she will never know, but there it is. I had more than the usual coughing tonight with a lot of secretions and a fever. Mommy couldn't do much beyond some Tylenol. I did manage to sleep for a few hours at a stretch. Daddy came out around 5:30 and Mommy got to got take a nap for a few hours. Daddy set up the blow up mattress in front of the couch and hooked me up to my mist and told me I had to spend the day in bed. So when Mommy came out a few hours later she saw that I was like a princess on my throne - holding court over the doggies, watching tv and eating a sucker.
My parents spent the day monitoring and entertaining me. I got Tylenol every four hours for the fever and breathing treatments every six hours for the coughing. It doesn't strike my parents as the normal URI they are used to seeing and so far no vomiting. They aren't sure what will happen with surgery at this point but they are crossing their fingers I will rebound quickly.
So after the kick in the stomach of me getting sick, they got sucker punched when the agency called and let them know that Lucille will not be returning - ever. And the agency has no other nurse to fill in. At this point, I am now nurseless during the day and my parents are going to have to take turns taking work off until something can be arranged. With the prior history of finding nurses using this agency they don't have high hopes anything will happen soon.
Peyton Nicole Smith

Saturday, March 6th, 2010

When Mommy came out this morning she found Daddy and I both asleep on the blow up mattress. Now to most people a child sleeping with their parents is not so unusual but with all
my machines that's never happened before. In the middle of the night I signed that my tummy hurt so Daddy put me in bed with him and Mommy sure wished she had a camera because it was awfully cute!
After Daddy took a nap this morning we all go ready for an IKEA run. We knew we needed a rug but we all like to browse. I was in a pretty grumpy mood, my parents just figured it was due to waking up so early and not having a great night's sleep. I had just fallen asleep in the car when we got to IKEA and I was not happy to be woken up. I wasn't able to get back to sleep until after we got home and when I did wake up I was crying - never a good sign. The only way I stopped crying is when Mommy promised we could head to the park. Eventually, the crying subsided but my parents started to see a little rash on my face. Not good.
While Daddy went to a movie in the evening with Uncle Jeff, Mommy stayed home with me. As she was getting me ready for bed she noticed I was starting to run a fever and a little coughing. That's not good either. Today she is my night nurse - it's going to be a long night.

Peyton Nicole Smith

Sunday, March 7, 2010

Friday, March 5th, 2010

After being missing in action for the last two weeks, Uncle Jeff made an appearance tonight. I took the opportunity to get a little dance time in with him.
Peyton Nicole Smith

Friday, March 5, 2010

Thursday, March 4th, 2010

Lucille had to take another day off today, but luckily Daddy came to the rescue to be my day nurse. As you can see, I was just fine with that! He is reading "Fox in Socks" to me and I think all the rhyming words are hilarious. When he was done reading, I took the book to my stuffed chair, opened it, and began "reading" it myself. Although my parents couldn't make out any words I definately had the rhythmn down.

Peyton Nicole Smith

Thursday, March 4, 2010

Wednesday, March 3rd, 2010

A note from Mommy:

Today I ordered a custom t shirt for Peyton. Zazzle.com and Cafepress.com have some cute tshirts already designed with sayings about trachs, g tubes and all other things medical. Although many were funny, I decided to create one of my own sayings and put it on a pink t shirt.

Trachs aren't for sissies

Travis and I decided early on that if we don't keep a sense of humor about our lives how would we ever expect Peyton to? So we make jokes about everything even when to the average person it may not be funny. Constipation, trachs, g tubes, trach secretions, vomiting, diarrhea, deafness, aortic valve disease, hand abnormalities, jaw distractions. Nothing really funny about any of it at first glance.

As I was creating the shirt I was thinking about Peyton and all the not so fun things the trach has meant for her. She is definately no sissy and has taken it all in stride. But as I got to thinking about it more, I probably should have created tshirts for Travis and I and all our family and friends. After all, we aren't sissies either. Although she may be the one with the trach - we are all on this path with her every step of the way.

I have always had a love/hate relationship with the trach. I understood the reasons for her needing it. Just about anything they would have asked us for permission to do to keep her alive I would have agreed to at that point. But I heard what I wanted to hear and when they said they could do a jaw distraction around 9 months to a year old and potentially get the trach out I clung to that as if it were a lifeline. A year with a trach - no problem. I could do anything for a year. And then that mantra replayed itself in my head every day for the next year. I had a mental countdown running at all times. Only XX many days until we get the trach out. When we checked out two other surgeons for the jaw distractions they were much more conservative and getting a trach out after the first distraction was a maybe - not a for sure. Her first distraction process was completed shortly after her first birthday but we were heading into the cold and flu season. Even though her airway looked good, the recommendation was not to decannulate immeadiately. She had so many more surgeries to go and even with a jaw distraction her jaw and airway were so small that most anesthesiolgoists would be hesitant to do any non emergent surgeries until her airway was bigger. At that moment, I had a break down in the car ride home from Palo Alto. I was distraught. I had planned on a trach for a year and when that magical date came and went I didn't have a road map as to where our lives would go now. Suddenly, I had to redefine her life because now it would include a trach much longer than I had anticipated. And in redefining her life it meant redefining my own.

It was almost like a death for me. Most parents probably grieve for the loss of their "perfect" child earlier on in the process. I just delayed my grief a little longer I guess. I had fooled myself into thinking that the trach was preventing us from living our lives normally and we had to do whatever we could to get it out as quickly as we could. After my good ole cry in the backseat sitting next to her, I came to the slow realization that the only thing preventing us from living a normal life was me. I had to get to the point that I accepted what the trach was and what it wasn't. It was a piece of plastic that allowed my daughter to come home and live a happy (but more complicated) life. It was not a barrier to her experiencing life unless I allowed it to be.

So I am a slow learner (Travis had known this all along of course) but I did eventually get the message. It has been a gradual process but I have fully accepted the trach as a part of our lives. In fact, I have had several discussions around keeping it in longer then she might need to get a few more surgeries done that probably could wait a few years. In the last year and a half we have done many things I never could have imagined as I sat there sobbing in the back seat of the car that day. But we've done them. And we will do many more things with the trach in tow. She is not defined by her trach. I am not defined by her trach.

Wednesday, March 3, 2010

Tuesday, March 2nd, 2010

Mommy read somewhere that once you allow one stuffed animal into your home they reproduce and multiply - kind of like rabbits. Most kids have lots of stuffed animals but I have opportunities to receive stuffed animals that most kids don't because I have lots of doctor's appointments and hospitalizations. Most children's hospitals send me home with a stuffed animal of my choosing and if I am there overnight I often get a home made quilt as well. Today was my follow up for my hand surgery at Shriner's. It was a quiet day in the waiting room so I had plenty of room to run around and play. It was just Mommy and I because Lucille's shift had ended. I am getting so big now that when we were called back I walked myself to get my height and weight - with clothes today I was a whopping 25 lbs. 4 ozs. Then I walked myself to my exam room and got right to playing. First in was Janice - Dr James' nurse. She had contacted Mommy a few weeks ago to see if she would be willing to talk to a family with a brand new baby with Nager. Mommy hasn't heard from them yet, so she gave Janice my blog address in case they would be more comfortable reading up about me. Then in came the young male resident. He had a few questions about my hands and then asked about my jaw distractions. He let Mommy know he had two jaw distractions when he was a teenager and actually was trached for a few weeks after each one - he even showed Mommy the scar. A short time later, Dr James and Janice returned after checking out my blog. Dr James wanted to check out my hands and I was a lot more friendly this time around then I was the last time I saw her. I showed off my sign language by signing "I love you" which was a big hit. Then I got to walk to the back office to pick out a toy - and that is where the stuffed animals come in. I am now the proud parent of a Zodiac Beanie Baby horse. As you can see he and I hit it off immeadiately. I think I am pretty lucky that I go to doctor's appointments and come back with toys - maybe this is why my attitude about the doctor has improved over the years!

Peyton Nicole Smith