Friday, December 31, 2010

Thursday, December 30th, 2010

The mystery of vomiting. My parents, my nurses, my doctors and even my grandparents have spent countless hours analyzing why I vomit. Sometimes the answer is simple - violent coughing, stomach virus, constipation, volume. Many times nobody really knows why. Each of the last three days I have vomited once. Tuesday it was after my 3 pm feeding. Just stopped all of a sudden and vomited. Wednesday while sleeping and getting my 3 pm feeding I suddenly woke up and vomited. Today the vomiting was during my first feeding of the day. Violent coughing - nope. Stomach virus - possibly but since it is only one feeding a day probably not likely. Constipation - possibly but I have had numerous stools each of the three days so things seem to be moving. My parents did just bump me up 90 cc's a day to try to get extra weight on me ahead of surgery but that didn't happen until Wednesday and it is only a few cc's extra per feeding so it doesn't explain the vomiting Tuesday before the extra volume was added. There is also that small issue of my button placement. Several GI's later they are all unsure of why it was placed there to begin with and aren't sure what the pros or cons are of having it there. We have certainly figured out one con (button sucking in issues) but there is no guarantee if it got moved that that particular problem would be solved. Even if it was, there is the potential we would have other issues with the new placement. Many kids with a g tube also have the Nissen fundoplication procedure to prevent excessive vomiting and GERD. Luckily, my vomiting has never been serious enough to warrant the procedure but if my g tube placement is changed all bets are off. It certainly seems like there are a lot of kids with g tubes that have issues with vomiting but Mommy hasn't ever heard any strong indication that the g tube itself is contributing.

Within moments of vomiting I am usually off playing again so it is unlikely that I am sick but it is curious and very frustrating. Curious because Mommy doesn't like not knowing why something is happening with me and frustrating because those are precious calories that I really need to grow. Unlike most of America my fight is to keep weight on - not try and get it off! So my New Year's resolution is to gain weight folks!

Peyton Nicole Smith

Wednesday, December 29th, 2010

Mommy wasn't quite so sure that I really was into my fire set as much as she thought I would be. But over the last few days I have been playing with it. In fact, I prefer to play with it while wearing my fire hat from Unified Fire. Tonight I grabbed Mommy's hand and led her to it so she could play with me. When it was time to go downstairs to make dinner we turned off the light and headed out the door. We hadn't made it far when I insisted we go back to my bedroom. Then I put both of the firefighters to sleep on the bunk bed and headed down stairs. They needed some sleep!

Peyton Nicole Smith

Wednesday, December 29, 2010

Monday, December 27th, 2010

A note from Mommy:

In the last month there have been several times where the topic of another child has come up with someone. Travis and I have had this discussion many times and each time we come to the same conclusion - it's unlikely we will have another child. Until genetic testing is completed on Nager Syndrome, worst case scenario is that we have a 25% chance of having another child with the syndrome. Best case is that it was a genetic mutation and it will never happen again. As much as we would like to believe in the best case scenario, it is more likely that we fall into the worst case scenario. Miller Syndrome is very similar to Nager Syndrome and last year around this time they determined it was a recessive gene. Peyton's blood sample is one of several of children with Nager they are currently testing and we are expecting to hear at any moment that Nager will also be considered recessive.

On the Nager spectrum we have been told that Peyton is "moderate". Many children who are severe do not survive pregnancy or die shortly after birth due to airway issues. Neither Travis or I can even contemplate losing a baby.

If we were to have a "normal" baby the reality is that Peyton will always take more time and energy. We don't feel it is fair to either her or the other child to put them in that position.

There are other considerations as well, though. I have pretty good insurance through my employer but it has a lifetime maximum of $2 million. Peyton is 3 years old and has already met $1 million. Almost 1/2 of that was just from her time in the NICU but with all of the surgeries in her future she is going to meet that lifetime maximum with my insurance before long. In the end, she will be uninsurable for commercial plans and we will rely soley on Medicaid for her medical care.

When explaining our reasons to not have another child we have been called "responsible" or "good parents". So do I consider people who have a known risk of having a child with disabilities who get pregnant - irresponsible or bad parents? Peyton will be faced with the decision as an adult if she will have children of her own - her risk will be 50/50. Would I deny her that choice because should she have a child with Nager as well that would be a financial drain on the health care industry, school district and herself? How much money, time and resources are too much to spend on a child - or anyone for that matter?

We have discussed adopting - possibly a child with special needs. We have also considered adopting a child with Nager but with the syndrome being so rare it is unlikely that opportunity will ever present itself. Our truth is that we have had to make a decision that we could live with. Hopefully at some point Peyton will read all of these blog entries since I print them into a book every six months. When she does I want her to know that the decision we have made is no reflection on our love for her. She is worth every tear, every cent, every moment that we devote to her.

Sunday, December 26, 2010

Sunday, December 26th, 2010

It took me until almost 2 am to fall asleep and I had a very restless night. Since Mommy was so tired and fighting a cold of her own, Daddy stayed up with me tonight. Aroun 7 am, Mommy heard the feeding pump go off and when it became clear Daddy wasn't going to wake up, she went in and turned it off and then sent him to bed. Within a few minutes I popped up in bed and initially seemed perky but then I started coughing and vomited. Mommy is getting pretty good at this and managed to catch most of it in a blanket to avoid getting it on herself.
We headed downstairs and Mommy started up the Pedialyte (see told you we should own stock) and I got my next dose of Tylenol and we proceeded to open every toy I had gotten over the last several days. When Daddy woke up about three hours later I had pretty much made it through everything once and was starting onto some toys a second time.
I played at home today to try to kick this cold and took a nap in the afternoon. Mommy had to wake me up to take me to Grandma and Papa's house so she and Daddy could go to dinner before Grandpa Gil heads back to Portland tomorrow. (That's him trying to catch some shrimp at the Japanese steak house).
I sure didn't act sick while they were gone and was hopping around the house when they returned. When we got home I had some quality bonding time with my new Dora chair/couch while watching some episodes of Dora on TV.
Tonight I took a bath and got to try out all my new bath stuff - alphabet soaps (I picked letter "p" of course), fizzies in the shape of a snowman, and Yo Gabba Gabba tub-stick ums. Mommy is hoping that for Michelle's sake that I have a more restful sleep tonight.
Peyton Nicole Smith

Saturday, December 25th, 2010

After the late night tantrum, it wasn't a big surprise that I was not the first one up Christmas morning. In fact, Daddy had to wake me up. Initially I wasn't so thrilled about that and kept giving him the elbow but when he whispered in my ear that Santa had come and brought me a surprise I gave a big smile and hopped out of bed. I was still a little sleepy on my feet as I stumbled into the living room and saw my fire set just like I had asked for. I didn't have much time to play with it, though, before I needed to start opening up all of my other gifts. After all the excitement, we had a nice breakfast together and then we headed home to shower and make our way to Karen's.
While Karen and my parents had some nice hot soup, I played with my favorite Hallmark Christmas toy (this is a perennial favorite). Then we settled in for the next round of gift opening. I was super excited for the horse and stable set (although I insist that it is a farm not a barn) and couldn't wait to get the horsies out to play. After some dessert it was back in the car to head back to Grandma and Papa Smith's for a yummy prime rib dinner (okay I didn't have any of the prime rib but I heard it was great). My parents didn't even make it to dessert before Grandma Smith told Daddy to get me and Mommy home. Mommy was about ready to fall asleep sitting up and I was starting to run a temperature again. While Mommy headed off to bed, I hung out with Daddy on the couch playing with my horsies. My temperature was climbing so Daddy knew he was in for a rough night. Despite being sick I had a wonderful Christmas holiday. Merry Christmas everyone!
Peyton Nicole Smith

Friday, December 24th, 2010

Despite the high fever, with a lot of Tylenol and Pedialyte through the night I slept like a log. But I was still definately in the throes of an upper respiratory infection so I stayed home and rested during the day intead of making cookies with Grandma Marilyn like Jackson, Traiton and Gavin got to.
Mommy, Aunt Kristin and Uncle Jason went to the nursing home to visit Grandpa Mike and I stayed home with Daddy. He tried to get me to rest as much as possible but that is easier said than done.
Early afternoon Mommy put me down for a nap and when I woke up I was feeling perky enough to head to Aunt Kristin's for Christmas Eve dinner with Mommy's side of the family. Aunt Kristin had saved some cookies for me to decorate for Santa. We had a good meal and time to play with the cousins before opening presents in the evening. I got lots of fun things but my favorites were the two horsies and my Dora chair/bed. Actually, cousin Jackson liked my Dora chair as well and showed me how to leap off the couch on to it.
As we started to get close to my bed time, we went to pick up my furry brothers and head to Grandma and Papa Smith's for the night. Everyone was there and it was just too hard to settle down. I put out the reindeer dust on the lawn, set out the keys (they don't have a fireplace) and my cookies and milk for Santa. Eventually, my parents wrangled me into the spare bedroom but I was too wound up to sleep and threw a tantrum (yes folks I ain't ashamed to admit there was lots of kicking and crying involved) for close to an hour before I finally fell asleep. There were no visions of sugarplums in my head but a fireset this year!
Peyton Nicole Smith

Friday, December 24, 2010

Thursday, December 23rd, 2010

That's right friends - I will be sick for Christmas once again this year! After a runny nose and sneezing late last week and then dry coughing fits every night for the last few nights the cold that was hanging around finally got the better of me and hit full force. This morning when I woke up I vomited. Daddy figured it was because I hadn't gone poopy like I should the day before and sure enough I pooped shortly after. During the day I seemed fine and then Daddy and I met his brother, sister, two nephews and mother at the Natural History Museum. I was having a great time but as we got ready to leave I threw up in his car. I ended up sleeping all the way home and once I got there when he got me in the house it was clear that I had a high fever. Upper respiratory infection here I come!! Daddy started up the Tylenol and Pedialyte (seriously we should own stock in these companies) and then the rest of the night my parents kept them coming. When my night nurse Michelle arrived at 10 pm I had just fallen asleep. My heart rate was in the 140's and my fever was 103.8. After my next dose of Tylenol and about 20 minutes I had dropped down the 120's and a fever of 101.3. Michelle kept the Pedialyte flowing and the Tylenol doses pushed through the night and I ended up sleeping great. But I am definately fighting a cold and with it being the trigger for my asthma, my parents are keeping a close watch to try to keep me out of the PICU at Christmas. Cross fingers!

Peyton Nicole Smith

Wednesday, December 22nd, 2010

This is my Great Grandpa Gil. He arrived in town today for the holidays. Just three years ago a few days after Christmas he suffered a stroke. Now he is almost 88 years old and still living alone and enjoying life. Mommy and Aunt Kristin picked him up from the airport today and he will be staying almost a week. He and I bonded instantly when he shared some of his Hershey chocolate Santa with me. I ended up with quite a bit on my hands and face but Grandpa didn't seem to mind one bit!

Peyton Nicole Smith

Tuesday, December 21st, 2010

I'm on a roll! After the excitement yesterday of drinking from a straw Mommy got another surprise this morning when I started blowing bubbles as if I'd been doing it all my life. For years I have struggled with passing air through my mouth instead of my trach so I could blow a bubble. And just like with the straw here I am blowing bubbles and I don't even have my cap on! That's a great sign that I have learned how to breathe out of my nose/mouth even without my trach being capped.
Peyton Nicole Smith

Tuesday, December 21, 2010

Monday, December 20th, 2010

This evening Mommy, Daddy and I went to Costco to pick up our Christmas cards (yes they are finally in the mail although Mommy never did get the cute pictures of me and my brothers she had hoped for). After that stop we went to Johanna's Kitchen for dinner. We hit Johanna's often on a weekend morning but we have never gone for dinner. It was absolutely dead and we got a whole section to ourselves. I was content coloring and drinking some soda. The waitress brought it in a styrafoam cup with a lid and a straw. Mommy wasn't quite sure how that was going to work but Daddy put the straw in and let me give it a try. To Mommy's amazement I was drinking out of a normal straw. Now you are probably thinking "and that is amazing why?" For years feeding therapists have worked with me to get enough suction that I could use a straw. In the past if the straw was just a few inches long I would be able to get a little but it was a lot of work on my part. So when Mommy looked over and saw me using my regular size straw and I was not capped (just had on an HME) she was impressed. I've come a long way baby!

I had a nice nap today so tonight I was not anywhere close to falling asleep. Daddy let me run around downstairs and told me that as soon as Michelle (my night nurse) arrived I would have to go up to bed. Mommy and I were talking in my room when she pointed to her ear and said listen. My eyes got big and I asked "is that Michelle?" Mommy nodded and I ran like a bat out of hell out the door where I ran into Michelle in the hallway. Then I ran back into my room, on my bed and proceeded to start crying because I knew it was time for bed - well not exactly. Michelle and I had plans to read books but I ended up going downstairs with her where I fell asleep in front of the TV watching a Christmas movie around 11 pm.

Peyton Nicole Smith

Sunday, December 19, 2010

Saturday, December 18th, 2010

After much pressure my parents finally caved and got me a Christmas tree. It may be a cheap plastic tree but it was love at first sight. Mommy and I were at the local store by 7:30 hunting for a Christmas tree and I could hardly wait to get it out of the box so I could start decorating it. Mommy tried to hand over only non-breakable ornaments but I started pawing through the box and found some that were decidely fragile. Once I was all done, Mommy hauled it up to my room and Daddy placed it on top of my plastic table so I could gaze at it as I fall asleep (or not fall asleep depending on the night).
After the excitement of trimming the tree I went over to play with cousin Jackson. Despite showing early signs of a cold, I ran around like a trooper and kept right up with him. We both enjoyed scaling boxes and throwing ourselves off the treadmill. Even a few good bonks on the head weren't enough to stop me.
In the evening Mommy, Daddy and I got dressed up to go to a Christmas party hosted by one of Mommy's coworkers. Just as we were getting ready to leave I started into an unrelenting cough. As Mommy drove around looking for the place, the coughing continued. She stopped the car and gave me a breathing treatment but it seemed pretty clear that I was on the verge of coming down with a cold - my asthma trigger. Mommy knew it was a party foul not only to bring the sick kid to the party a week before Christmas but with my habit of vomiting induced by coughing she figured that would not be a welcome addition to the holiday decor so we headed home with me very disappointed to have missed the party.
Peyton Nicole Smith

Thursday, December 16th, 2010

The art of drinking soda!
Peyton Nicole Smith

Tuesday, December 14th, 2010

It was a super busy day with two therapy appointments and the Hope Kids Christmas party. First was my occupational therapy appointment from 4-5 pm. I did my best to concentrate but without a nap it was a little difficult and Wendee sometimes had a hard time keeping me on task. Then I walked down the hall and form 5-6 pm it was speech therapy with Courtney. We have been really focusing on speech but today my mouth was all gunky so Coutney had me drink some water from a little shot-like glass. She was happy so see me swallowing but noticed immediately that for the small amount I was drinking I had to swallow multiple times to get it down. It certainly seemed as if I woked awfully hard to swallow. Courtney definately wants to have me in for another swallow study after my jaw distraction process is completed to see what we will be up against. At the end of my therapy sessions, Courtney took me to the office where I got to pick out a stuffed animal. Now what kind of animal would I pick out? A spider of course! His name is Spinner and I think he is super cool. Courtney was shaking her head in disbelief but Mommy wasn't surprised at my strange choice!

After back to back therapy sessions there was no rest for the weary because off we went to Riverton for the Hope Kids Christmas party. Because there are so many kids they had two parties and we made it to the second of the two that day. First we went upstairs to have our pictures taken. (Mommy wasn't expecting this one so she can't wait to see how badly they turned out). Then on to the gift room. There were tables set up for age groups and we went to the 0-3 table but the 4-7 table was right next door and there I saw a Dora the Explorer bath set. The volunteers were very sweet and let me have it even though I wasn't four yet! Mommy and I then made our way back downstairs where I noticed Santa right off. With Mommy holding me, I signed what I wanted for Christmas and Mommy explained that I had worked really hard the last few days potty training and certainly deserved it. After signing my request to Santa, Mommy and I sat down at a table and decorated a Christmas cookie. There was plenty of colored frosting and candy to keep me busy. The volunteers at the table even knew some sign language and were able to communicate with me using ASL. After we finished up my cookie, I got pretty nervous at Santa being so close by so I insisted that we go upstairs where I could look down over the balcony at Santa. Any time he would move around the room and I lost sight of him I would get pretty anxious. Eventually I signed to Mommy that I wanted to go home.

It had been a long day and I fell asleep in the car on the way home but perked right up once we got home because I wanted to get right in the bath to play with my new bath set.

Peyton Nicole Smith

Tuesday, December 14, 2010

Monday, December 13th, 2010

It was another successful day of potty training. Even though I had preschool today, I managed to keep my pull up dry all day. In fact, I only wet it a little in the evening at home when I got involved watching marathon Blue's Clues episodes. I got a special surprise when Mommy showed me a video from Santa Claus that he made just for me.

Peyton Nicole Smith

Sunday, December 12th, 2010

Otherwise known as Adventures in Potty Training....

Despite the excitement of Friday night with the leaking plumbing and caved in ceiling, we were committed to potty training this weekend. Grandma Glenda had started me off so my parents were bound and determined to keep the process going.

Saturday I was off to a good start by peeing in the potty first thing. A few minutes later, though I was very upset and Mommy could tell I needed to go poo poo but was unwilling to get on the potty. Sure enough, I had started to go a little in my Blue's Clues panties and eventually I got over my freak out moment and came to Mommy so she could clean me up. She is still not sure how such a small amount of human waste could end up all over her, me and the floor but it was no small feat to get everything back to normal. Throughout the rest of the day I did really well getting on the potty every hour or so. At one point we had to go get a birthday present for an upcoming party and Mommy put a diaper on while we were out and about. Sure enough, I got it wet but the rest of the day I consistently went pee pee in the potty.

Sunday dawned bright and early at 6 am and adventures in potty training continued into another day. I had a few hits in the morning peeing but mid-morning I was having too much fun playing in my play room and missed getting to the potty in time.

We stopped by the local Rite Aid to pick up my asthma medications. Our favorite pharmacist (a sweet Russian woman) asked me what I wanted for Christmas. I signed "fire man" and Mommy explained about the fire set I was wanting. The woman said quietly to Mommy, "What is your address, I want to bring one by." Mommy assured her that Santa was fully aware of my request and it would be taken care of but the woman insisted, "We really want to get her something." Mommy let her know I was very fortunate and had plenty of presents headed my way this Christmas but she appreciated the thought. (Obviously I need to have a longer list next year!)

In the afternoon I went to play with cousin Jackson and wore a pull up which I proceeded to wet. However, Mommy was pleasantly surprised that after I had gone a little I requested to sit on the adult potty at Grandma's house and did manage to pee a little there (she is sure this was for the wow factor in front of the relatives).

We headed home and got ready for my nap. After a few minutes of reading books I signed to Mommy that I needed to use the potty. She ran downstairs to get it and helped me on. After a few grunts I hopped off and she was amazed (delighted, horrified, etc) that I had finally gone poo poo in the potty. After not really going poo poo for almost three days she was shocked at the quantity and lack of drama on my part! Since Daddy was at work she took a quick picture on her camera phone and sent it on. He called back immediately and asked Mommy to please not post the photo on the blog (ok so she won't but you can request privately if you wish - hee hee). I hopped back in bed and a few minutes later asked again to go potty. Mommy had just finished cleaning up the last round and I got right on and went pee pee this time. As I drifted off to sleep Mommy was feeling all giddy with excitement at the prospect that in a matter of just a few days I was virtually potty trained. Yee haw!

Peyton Nicole Smith

Sunday, December 12, 2010

Friday, December 10th Round 3

After the fun with Jackson, I came home and showed Daddy my potty training skills by peeing in the potty. My parents were feeling like the night had ended on a high. As Mommy and I headed up the stairs for bed, Daddy called Mommy back down and by the tone of his voice she knew it wasn't good. He pointed up to the ceiling above the kitchen table and when he pushed on it, the ceiling was buckling and eventually his finger poked through and water started falling. As he started to pull the sheet rock down he exposed the piping from the two bathrooms upstairs. A 4 by 8 foot section was wet and the wood and sheet rock were moldy too. The question was what was actually leaking? Within a few feet of each other are two tubs and two toilets. Since it was late, Daddy cleaned up what he could and made a plan to call the plumber in the morning! Maybe it is ironic that the weekend I am going to start potty training in earnest we have a problem with the indoor plumbing!
Peyton Nicole Smith

Friday, December 10th, 2010 Round 2

After the excitement of potty training all day, I was ready to hit Jackson's house for some gingerbread decorating. We ran around with cousin Traiton for a few hours and then got down to business. OK so I helped Mommy with the frosting while Jackson got down to the business of eating the candy! I made a gingerbread house and Jackson made a gingerbread train. Structurally the house was very sound since Mommy put it together - but several people worked on Jackson's train and it was looking a little worse for wear by the end of the night!
Peyton Nicole Smith

Friday, December 10th, 2010 Round 1

Grandma Glenda and my Mommy have spent lots of time discussing my potty training (or lack thereof). I have this bad habit of only peeing or pooping if I am awake and standing up which can create a few problems when I am fed regularly by g tube every 3 hours and for 8 hours overnight. Add on top of that the fact that I can hold it for hours when I am awake can make for a bad combination. You may remember that I attempted potty training a few months back during the summer. That went nowhere quickly so Grandma and my parents decided to give me a little more time. Now that I am in preschool and we make regular trips to the potty as a class (and most of the kids are potty trained) it made sense to try to give potty training another try. Next Friday I have my 3 year old well child check up with my pediatrician and Mommy had plans to discuss my issues with sitting down to go to the bathroom but Grandma Glenda thought it would be a good idea to try potty training ahead of that appointment so we had more information to give him.
Mommy went shopping earlier in the week and got me two packages of panties. One was the basic girly set with flowers and hearts and birds. The other set had all my favorite characters - Blue's Clues, Dora the Explorer and The Wonder Pets. I was totally excited to get started. Since I don't have preschool on Fridays, Grandma thought today would be a good time to start. She sat a blanket on the floor in the living room with my potty chair and we started off the day by watching an old favorite - Elmo's Potty Time. Mommy called throughout the day to get updates and although I was a little rusty in the beginning I eventually got the hang of it. I was able to pee pee on the potty several times through out the day.
Peyton Nicole Smith

Thursday, December 9th, 2010

Give me a box full of supplies (scissors, glue, beads, pipe cleaners, pom poms, etc) and I can be entertained for hours! It is a messy business but Mommy says it is worth the mess because I am at my happiest when creating works for art!

Peyton Nicole Smith