Saturday, February 27th, 2010

It's official we are now suffering from MTS in our household. MTS is short for multiple tank syndrome. Several weeks back we discovered we had two fish babies. One managed to make it in the tank for a few days the other close to a week. Although we would like to believe they passed away peacefully, most likely they were eaten by the adult fish. Imagine our surprise when we saw three new babies in the tank today! They were teeny tiny and we knew they would not last long if left with the adults so Mommy begged Daddy to find a way to keep them apart from the rest of the fish. Daddy came back from PetSmart a little while later with a brand new tank to house our baby fish - it's the fish nursery! If you look closely you can see our three new fish babies enjoying their new tank.

After a yucky rainy night it was a cold and overcast day but I got to go with my parents to run some errands. Now that Daddy is my weekend night nurse first stop was to find a blow up mattress he can use to sleep on in the living room. Not very glamorous but it works! While out shopping we also went to find me a bike helmet. I am a pro riding my tricycle around the house but now that it is starting to warm up, my parents are going to let me ride outside. Before I can do that, though, they told me I had to get a bike helmet. There were lots of cute helmets to choose from and I settled on Abby from Sesame Street. It's a little big but they don't make them any smaller. Unfortunately, I am not the typical kid and two problems quickly presented themselves - my hearing aids get in the way and my unusually small chin doesn't work well to keep a chin strap on. My Daddy is a pro at modifying things for me so I am sure he will find a way to make it work.

Mommy took me to the park in the evening to play and I had a great time - and a wet backside from the slides. Before bed I got to play around on the blow up mattress (it's an awesome trampoline!) and then Mommy read me some stories in bed. Great day.

Peyton Nicole Smith

Friday, February 26th, 2010

It's been a long week with Mommy out of town. She left Monday afternoon to go to Salt Lake for work and didn't get back until last night. Daddy has done a great job of taking care of me and made sure I got time to talk to Mommy in the morning after I woke up and at night before bed time.

This morning both Mommy and Daddy were anxious to get back to their egular work routines but Mommy was in for a surprise. When Lucille came to work she told Mommy she needed to talk with her. She said she has been having a lot of back pain and although surgery isn't scheduled until the end of April she won't be able to keep working until then. Mommy said she would call the agency when they opened to see about working something out for next week but Lucille said she couldn't even work today and would need to leave. Mommy had a conference call in less than an hour not nearly enough time to get a replacement so she waved goodbye to Lucille and scrambled to get me set up with movies and snacks so she could hop on the call.
It was interesting to say the least - Mommy trying to focus on a conference call while running after me and Yo Gabba Gabba blaring in the background. After several hours on the phone, Mommy and I got to spend some time together in between her checking emails. She wasn't able to get much work done today but I had fun! Later, the agency called and told her that Lucille would be back to work Monday on pain meds that shouldn't impact her ability to care for me. Mommy is crossing her fingers that it will all work out.

Peyton Nicole Smith

Sunday, February 21st, 2010

That's right - future MD!

Peyton Nicole Smith

Saturday, February 20th, 2010

Although it looked like it could start raining at any time, my parents made good on their promise yesterday to take me to the park today. We even brought Henry and Chili along for the fun. Unfortunately, some people showed up with a St Bernard and yellow Lab that they took off leash so while Daddy was busy protecting my brothers by keeping them far away from the big dogs, Mommy and I got to play on the ladders and slides. On the walk back home, Chili got pretty tired so he rode in the stroller with me the rest of the way - too cute! Once home, I wanted to walk the doggies myself but Mommy didn't think that was a good idea but she let me hook up a leash to my stuffed doggie and I dragged that around the house for quite a while.

Peyton Nicole Smith

Friday, February 19th, 2010

Now you've all seen me count from 1-10 but today during a visit from my hard of hearing teacher I was tested on number recognition. I already recognize my letters so maybe Mommy shouldn't have been surprised that I could point out my numbers too but she still was. 6 and 9 were a little tricky but Kirsten tried several numbers just to make sure it wasn't luck and it wasn't!

I had been complaining all day that my bottom hurt and in the evening when it was time for a diaper change it was clear why - I had a serious diaper rash that seemed to come out of nowhere. Daddy put on a lot of diaper rash ointment and then Mommy suggested a little Tylenol to help with the pain. One of the benefits of the g tube is that I don't ever have to taste nasty medicine if I don't want to - it can go right in the tube - no fuss no mess. Today I decided that I wanted to give myself my own meds so Daddy let me help. Once the meds were in, though, I wanted to continue using a syringe to put things in my button. So Daddy let me add some water a few cc's at a time. Being that I had just finished a feeding and my tummy was extra full, Daddy changed from a 10 cc syringe to a 6 cc syringe and finally to a 1 cc syringe! Once Daddy filled it with water I got pretty good and was able to put the syringe in my button and push the water in. As Daddy said in the video - they're in trouble now!!

Peyton Nicole Smith

Thursday, February 18th, 2010

One of the great things about living in California is being able to enjoy the 70 degree weather in February. It was so nice today that I talked Mommy into going to the park after my nap. I was super excited to get out and start running around and I got a huge surprise when I saw my friend Gwen from taekwondo class there too. She lives one street over from us! As soon as she saw me she yelled "Peyton!" and came running up to me. We had so much fun playing together at the park. She was a little nervous to go down some of the slides but I am a pro so I went with her and then she taught me how to kick bark. I had brought Foofa from Yo Gabba Gabba with me and she is also a big fan. There was only one swing available so I would push her and hold Foofa and then we would trade and she would hold Foofa and push me. Our parents thought we were pretty cute together and I was pretty sad to leave when it started getting dark. But because she lives so close we will have to play together again really soon.

Peyton Nicole Smith

Wednesday, February 17th, 2010

These are the tricks of the trade of feeding therapy - at least for me! Because I don't have the ability to chew very well everything I eat has to be able to be disolved pretty easily in my mouth. I DETEST pureed baby food. Although they are the perfect "safe" food for me to eat I want nothing to do with them. For trach kids, though, that is apparently not so unusual. Since a lot of tasting food is related to how it smells - breathing through the trach and not the nose seems to have an impact. Parents of other trach kids have noticed their kids prefer foods with strong flavors and Mommy has noticed that with me as well. One of the first kinds of ice cream I would eat was ginger - not usually a flavor you would think a baby would enjoy. To expand on that theme Mommy is investing in things like hummus, salsa, sharp cheddar cheese spread, port wine cheese spread and condiments. If I had my choice between Gerber graduate cheese puffs, Goldfish crackers or Ritz white cheddar crackers guess what I choose? That's right - the Ritz every time - they have a sharp tangy flavor and I love them. In fact, today during feeding therapy with Karen I was unwilling to try just about anything. As soon as Mommy pulled out the Ritz crackers, though, I had my mouth as wide open as Mommy has ever seen it - waiting for Karen to put a spoonful of crushed up crackers in my mouth! Mommy and Karen were laughing so hard - I looked just like a baby bird waiting for a worm! So the challenge is to continue to find textures that are a pureed consistency but have a strong flavor. Any good ideas?

Peyton Nicole Smith

Tuesday, February 16th, 2010

A note from Mommy:

A community that excludes even one member is no community at all. Dan Wilkins

Tonight I started discussions with the local school district on where Peyton best belongs when she has the option to attend preschool this summer. The transition from the infant program to preschool in the school district is complex enough that they publish a small manual on all the steps. Peyton is more complicated then most in that she not only has medical considerations but physical ones as well. Peyton is hard of hearing but "aided" she could easily be mainstreamed. Peyton has a trach and g tube but with a nurse she could easily be mainstreamed. Peyton has a few physical limitations due to her upper extremities and being smaller than most children her age but with some modifications to the classroom she could easily be mainstreamed. The sticking point continues to be her communication style - or should I say styles? Receptive communication (what she is taking in) she was actually above age level when tested in the fall. It's the expressive communication (how she communicates back) that is in transition for her. Up until about six months ago, her expressive communication was entirely ASL. Then she started talking and we were thrilled! Unfortunately, being so late to talking and compounded with craniofacial differences she is very difficult to understand. So where does this little girl belong? In a deaf/hard of hearing classroom where everyone is "speaking" her native language (ASL) or in a mainstreamed classroom with an interpreter to help her communicate with her teacher, nurse and the other students in the language most compatible with the rest of society? There are pros and cons to each and as she gets older it may be she spends time in both during the course of her day. This will be an interesting journey for her and for us.

I am grateful for all the children that came before Peyton who did not have the luxury of IEP's and infant programs and deaf/hard of hearing classes - they have paved the way to Peyton getting the best public education possible.

Monday, February 15th, 2010

Although Mommy had the day off of work today, she had so much work to catch up on that Lucille went ahead and took care of me. So without any phone calls or meetings and relatively few emails it felt like a pretty relaxing day even though Mommy spent it working. I had a great time playing with Lucille and was all over the house on my tricycle today. I was so worn out from all the riding that I even requested to take a nap!

In the evening we enjoyed watching our new fish babies swim around the tank. Yes, I am now the proud parent of two baby fish. Not sure where they came from (okay we know where they came from just not sure which particular fish they came from) but we first caught sight of them this weekend. They have spent most of their time hanging out together and hiding from the other fish in the tank. Tonight when it came time to eat they came out from their protective cave and attacked the food. Obviously, Daddy is doing a great job on the tank!

Peyton Nicole Smith

Sunday, February 14th, 2010

Happy Valentine's Day! After all the fun presents from family and friends this week I got some from Mommy and Daddy too. I got some new spring jammies, fun hair bows and lacing cards (they are great to work on the muscles in my hands). I helped Daddy bring out pretty flowers for Mommy that I had asked him to order. They were very pretty and she loved them. Even though it was really early in the morning, my parents let me enjoy a chocolate sucker from See's and you can see it ended up all over me but I didn't mind! Right before nap time, Uncle Jeff came by. He got Mommy and I both a big balloon and he got Daddy and Mommy both a box of chocolates. We are all feeling very spoiled in our household this Valentine's Day. Hope you were too!

Peyton Nicole Smith

Saturday, February 13th, 2010

It was my final day of taekwondo class. Despite the early hour, Daddy came along to watch and capture some of it on film. I always start out strong but towards the end of class I much prefer to watch everyone else then participate myself. Gwen and I spent time holding the bag for each other again today. And as usual my favorite part of class was when we get to run around in a big circle and give the instructor high fives as we run past him.

Peyton Nicole Smith

Friday, February 12th, 2010

A shout out to two people in my life who are recovering tonight. My great grandma Joyce in Portland had hip replacement surgery on Wednesday. She was feeling much better today and was up and around - you go Grandma! My grandpa Mike has been recovering from his burns and his trach surgery in Salt Lake and today he had a g tube placed. That's right me and my grandpa have two matching holes now!

Peyton Nicole Smith

Friday, February 12th, 2010

My day started out with a surprise - my Daddy was my day nurse today! It was great, while Mommy was working hard we got to go shopping, to the playground and we even brought her lunch. Then, Daddy got to sit in on my therapy session with Kirsten my hard of hearing teacher and Karen my occupational therapist. Over two years since I started therapy he finally met both of them for the first time! I am used to running around the room when Kirsten works with me but Karen is not used to that side of me. They decided to contain me in my high chair today to work on some hand exercises and signing which made for a more focused appointment.

In the evening, Uncle Jeff brought by dinner for my parents and I got lots of fun play time with him before bed. To everyone's horror (including my own) I lost my balance at the top of my slide and went down face first. I have some pretty serious slide rash but I was back on within a few minutes to give it another go.

Thanks to everyone for all my fun Valentine's gifts. Cousin Jackson sent me the cute pj's above, Karen sent me a fun monkey that sings and I got money from my Grandma and Grandpa Mower to buy something I want (I know I have a lot of toys but I am sure my parents can help me find something to spend it on!) I am very lucky to have so many people who love me.

Peyton Nicole Smith

Thursday, February 11th, 2010

Thank you Grandma and Papa Smith for my Valentine's Day sucker - yummy!


Peyton Nicole Smith

Wednesday, February 10th, 2010

These were the last photos taken on my parents digital camera before I got angry, threw it and broke it. Luckily, I only broke the cover to the lens and the camera can still take pictures and video or else the blog would be pictureless for a while.

I had a great feeding session today and tried "brown" milk, cream cheese frosting and cheese whiz. The cheese whiz was a big hit but I decided "brown" milk is not for me and promptly signed and said "white" milk. No need to get all fancy on me - regular milk is just fine thanks!

You can see me above signing and reciting my numbers 1-10. Mommy espescially likes how I say "six". Pretty cute!

Peyton Nicole Smith

Tuesday, February 9th, 2010

Mommy has been working on creating a scrapbook for me using digital photos and a digital scrapbooking software. She worked on some pages from this summer and one of them happened to be when I got in the baby pool after my cast was removed. Once I saw the photo I was insistent that I get to go outside and get in the pool. The more Mommy would try to explain why it was not an option (it's only 50 degrees outside, it's raining, it's getting dark, she doesn't know where the pool is) the angrier I would get. Finally, Mommy and I came to an agreement. She would allow me to try on the new swimsuit I got for Christmas and wear it in the bath tonight instead. OK, so it's not the same thing but I agreed and had a lot of fun!

This morning it was time for my six month check up with the cardiologist. Last time around was a nightmare and they weren't able to get either the EKG or the echocardiogram. Today I was great getting all my vitals and actually sat still for the EKG. Unfortunately, I still got all weirded out by the gel for the echocardiogram so that didn't end up happening. Dr Choy listened to my heart and with the results of the EKG he isn't concerned and willing to try again in six months.

Peyton Nicole Smith

Monday, February 8th, 2010

My parents tried to distract me tonight before brushing my teeth by asking me to recite numbers 1 -10. Mommy would show me the ASL sign for each number in order and I covered my trach and off we went! Some numbers came out clearly and others were a little harder to understand but there was no doubt that I knew each one of them (my parents tested me several times just to make sure it wasn't beginners luck!)

Peyton Nicole Smith

Sunday, February 7th, 2010

While most people were watching the Super Bowl, Mommy and I took advantage of the nice weather and headed to the park to spend some time on the swings!

Peyton Nicole Smith

Saturday, February 6th, 2010

I had tons of fun at karate class today. Gwen and I met last week when we decided to share the punching bags. This week she made it a point to share the punching bag with me even when she didn't need to. I would hold the bag why she would punch and kick and she would hold the bag for me. Mommy is very impressed with my sharing skills - espescially since I haven't had much experience with sharing in the past.

Peyton Nicole Smith

Friday, February 5th, 2010

It's been almost two years since my parents donated some of my blood for testing to the University of Washington. At the time, they had identified a particular gene that they thought may be related to Nager Syndrome. We recently received a letter letting us know that the research studies on the COL27A1 gene showed that I did not have a mutation of that gene. Meanwhile, the same researches recently completed whole exome sequencing and identified the gene mutation that causes Miller Syndrome - a very similar syndrome to Nager. Miller is caused by the gene DHODH and it confirmed that Miller is autosomal inheritance which means each parent must carry one copy of the mutation in the gene to have a child with the syndrome. So now the researchers have asked my parents if they can use my previously submitted DNA sample to do whole exome sequencing to try to find the gene that causes Nager Syndrome. It's very exciting to know that within a few months there may be an answer!

Peyton Nicole Smith

Thursday, February 4th, 2010

Earlier in the week I met Linda and she did a feeding evaluation on me. Today, we returned for my speech evaluation. Lucille had to leave early for the day so it was just me and Mommy and Linda. I got a few minutes of play time while Mommy caught Linda up on my past (short) history of talking. Then it was time for me to perform. Linda would ask me to say particular words or imitate the sounds she was making. Usually, I did it as I was running around the room or fishing a ball out from underneath the table. Even with the distraction, I was doing a great job following instructions. Linda also wanted to hear the difference in my speech when I was occluding my trach with my finger or using one of my two speaking valves (Shikani French and Shiley Phonate). At the end of the session, Linda shared some of her ovservations with Mommy. First, she wanted Mommy to know that for all that was working against me (trach, small jaw, abnormal palate and being hard of hearing) I was doing a great job with my speaking. She said my vowel sounds are great and I am making great use of my tongue and lips. One thing that was a unusual was that there wasn't a lot of change in my pitch - espescially since I was doing so well in other areas. Since I am going to have my airway scoped in the near future, she recommended that the ENT's pay attention to the movement of my vocal cords to see if there is any physical reason for the lack of pitch. Meanwhile, my parents will start working with me on pitch at home - by singing "la la la" to the different notes on my mini piano and practicing "Mommy, Daddy and Baby" voices.

Peyton Nicole Smith

Wednesday, February 3rd, 2010

Mommy ended up on my %*^@ list today. She noticed mid-day that I wasn't pooping the way I should and she tried to wait me out. By early evening my tummy was big and hard and she made the decision to give me a suppository. Since Daddy was at work, she had to try to hold me down which is not as easy as it used to be considering I am much stronger and I know what is going to happen as soon as she pulls the bottle out of the fridge! Although I was very unhappy, Mommy was patting herself on the back that it was a pretty easy process this time but when she checked my diaper a few minutes later she saw it had come back out. So then it was on to round 2. This time around it wasn't quite so easy but in the end the round went to Mommy as well. For the next 45 minutes I sat in front of my mirror and cried. I wouldn't look at Mommy and certainly wouldn't let her try to comfort me in any way. Eventually, Mommy talked me into taking a bath and that seemed to help because shortly after getting dressed in my jammies - success - we had poop! So although Mommy won both rounds, I guess I won the fight because I felt a lot better and slept peacefully - whew!

Peyton Nicole Smith

Tuesday, February 2nd, 2010

Our lives (and our furniture) will never be the same - I have discovered chocolates! And not just any chocolate - Dove dark chocolate (Yes, my Mommy and I are in agreement on the dark chocolate part. Daddy is a a milk chocolate type of person). As you can see above, I was a fan from the moment I tasted it and was not happy when Mommy called an end to the chocolate fest so that I wasn't up all night bouncing off the walls!

In the early part of the day, Daddy and Lucille took me to the ENT's office at UC Davis. My feeding therapist last week noticed a strange smell coming out of my trach and thought I might have pseudomonas. Apparently, this is VERY common with folks with trachs. Since my parents had never been told before that I was colonized with it, they made the appointment this week just to be sure everything was okay even though I wasn't acting sick. Daddy did a trach change in the office so they could check out the secretions and they put a scope down my trach as well and I have a clean bill of health!

I will now treat you to me singing the Itsy Bitsy Spider with my speaking valve on!

Peyton Nicole Smith