Friday, February 29, 2008

Thursday, February 28th, 2008

I spend so much time taking my HME off now, that you can see I fell asleep with my hand around it - ready to take it off again! My lips are all puckered too, in the middle of giving my lovie a kiss.

The last few days I have been grouchy and then when I go down for bed at night I start coughing so much I start gagging. The coughing just never seems to stop. It's happened two nights in a row and as a result I am not getting a good night's sleep. Because the suction machine keeps turning on in the middle of the night I don't think my parents are sleeping much either. My parents aren't sure if I am fighting a cold or not because I seem fine (minus grouchy) during the day. Here's hoping I start feeling better soon so everyone can get a good night's sleep!

Peyton Nicole Smith

Wednesday, February 27, 2008

Wednesday, February 27th, 2008

So here is some video of me pulling off my HME!

In case you didn't notice - it is my half-birthday today. Yes, I am six months old. For those of you who have been reading my blog for the last six months hasn't it gone by so fast! I started at 5 lbs 8 ozs and as of last week I was 12 lbs 2 ozs. I had a rough start but I am making good progress now - getting bigger and smarter every day. Thanks to everyone for following my life on my blog and providing support to my parents - I know they really appreciate it.

Peyton Nicole Smith

Tuesday, February 26th, 2008

I think Mommy is getting very frustrated with me. I have learned to take my HME off over the last few days and now it is everything she can do to keep it on me. The HME (heat & moisture exchanger) is the "artificial nose" that is put on my trach during the day when I am not getting the mist. It keeps my trach humidified since I don't breath air through my noise and add humidity that way. So, it is kind of important to keep it on. As soon as Mommy puts it back on me, I take it back off and try to eat it. Mommy even gave me another HME to eat if I wanted but as soon as I drop it I grab the one on my trach. I think it is a fun game to play to show her how smart I am but I don't think Mommy feels the same way. She keeps telling me "no, that is not for playing it is for breathing" but I'm just a baby - I don't know what that means! Mommy is seeking advice from other trach mommies to see if this is a phase and how to live through it (besides wine and counseling).

Terry my special education teacher brought out Karen an occupational therapist today. They were both very impressed with me. They brought me some new toys that are smaller that I can get to my mouth. I like new toys! Karen did some exercises with me and thought I actually had pretty good rotation in my arms and shoulders but encouraged some more stretching to help keep me "loose". They kept telling Mommy and Lucille how very smart I am and I showed them my trick of pulling of my HME. They tried not to laugh but I know they thought it was funny!

Since I have had trouble adjusting to my Passy-Muir speaking valve Mommy asked some other trach mommies what they have done. They suggested drilling holes in it and then as I adjust to cover the holes with tape until I am using it like a big girl. So, Daddy came home tonight and got out the drill. My parents put it on with two holes and within a few minutes covered one hole with tape and then a few minutes later covered the other hole. I wore it for 5 minutes or so without any holes and was making some funny sounds. It really wasn't that bad. My parents were so proud that I am learning how to talk!

My parents also put me in my walker today for the first time. I haven't figured out yet how to move but it won't take me too long. My parents think I will be happier once I am more mobile and don't have to catch rides with them but they also know that means soon they will be chasing me down the hall in my walker which is a whole new set of problems!

Peyton Nicole Smith

Monday, February 25th, 2008

Today I had a PT visit with Michael. I was already tired by the time he got here (about 20 minutes late) so I was just not very happy in general. He was very happy to see that when I am on my tummy I can lift me head up pretty high - but just not for long periods of time yet. He is wanting my parents to work with me more on that so I can build endurance. Michael is also going to look into a feeding specialist to see if my parents can get some help with how to start introducing me again to solid foods.

While Daddy was at H&R block trying to get the taxes resolved (yes, they were wrong, and yes it ended up not in their favor) Mommy tried some rice cereal with me again. Let's just say I didn't get much in my mouth but I was a little more receptive to trying it this time. Mommy is encouraged and will try to slowly introduce it from once a week to every few days to every day so it is a routine for us.

Peyton Nicole Smith

Monday, February 25, 2008

Saturday, February 23rd and Sunday, February 24th, 2008

On Saturday, Sarah came at noon to spend a few hours with me. My parents took the dog's for a walk since they haven't gone since before I was born. Then, they went shopping together. They went to Barnes & Noble and got some books on hearing and also three sets of ASL flash cards so they can start learning how to sign with me. One of the books was a book just for me with some signs I will learn first like Mommy, Daddy, milk and more. My parents had a lot of fun learning some signs - Daddy's favorite is signing "mommy old" to me. Mommy is worried that I will think that is her name! Although it was nice to get away for a few hours, my parents said they were so happy to come back home.

Sunday was a rainy, windy day so it was spent at home. I took a few really good naps and both my parents got some nap time in as well. They changed my trach like they do every Sunday night and I was such a good girl -no crying or anything.

Peyton Nicole Smith

Friday, February 22nd, 2008

Today I had a visit from Sarah. She is the respite nurse that will allow my parents to spend a few hours every other weekend to spend some time together, run errands, etc. Basically, she is a highly trained baby-sitter! She seemed very nice and spent about an hour going over my care with Mommy and Lucille. Then Mommy had to go back to work so Lucille and Sarah played with me for a little while together.

Peyton Nicole Smith

Friday, February 22, 2008

Thursday, February 21st, 2008

Day 2 with my BAHA! I did so well today and wore it pretty much all the time while I was awake. In the morning I got a little scared a few times but by mid-day it was as if it wasn't even on. My parents are trying to provide me with exposure to different noises to see if I respond and turn my head. I am not doing it consistently just yet.

So far the only problem with the BAHA is trying to keep the headband on my head - it slips off my head or falls over my eyes the more active I am. Mommy found a BAHA support group on-line that she is going to ask about ways to help with that.

Peyton Nicole Smith

Thursday, February 21, 2008

Wednesday, February 20th, 2008

What an exciting day! I got my Baha sound processor! Hearing loss can be caused by outer, midder or inner ear problems. Because I don't have ear canals - my outer ear is the problem. That is why a cochlear implant (which is for inner ear problems) won't work for me.
Baha is an alternative to a traditional hearing aid. The Softband is an elastic band with a Baha sound processor connected to a plastic snap connector disc sewn into the band. The band is adjusted to the size of my head with Velcro. The plastic snap connector disc is held against the skin behind my ear, or at other bony locations of ,y skull, through the pressure from the band. The sound travels from the sound processor, via the disc through the bone to my inner ears that are functioning just fine. Later, when I am about 5 or 6 and my skull is thicker they can take the sound processor off the band and snap it directly to my skull via a "snap". You can see pictures of another little girl that got the surgery and what the snap looks like at this website:

My softband is pink and the processor is a medium brown color. You can see it behind my right ear in the picture above. By wearing my Baha I can hear within normal range. At first I was a little unsure in the doctor's office. I stopped fussing and froze when it was turned on. For the 45 minutes we were sitting in the doctor's office I was very quiet - just taking it all in. When Mommy put me in my car seat to get me ready to leave the Baha got bumped and caused "feedback" and I started to cry. Mommy took it off for the drive home and my nap to give me a break and then put it back on in the evening during my play time. A few times I got scared in the first few minutes with the doggies barking and playing with squeaky toys but later I played with my own toys and I forgot about it.

Right before bedtime, Mommy took it off in prep for bath time and let me roll around a little. I immeadiately turned over on to my tummy and started pulling my legs up underneath me a little. Mommy was so excited since for so long I HATED tummy time! I really am growing up!

Peyton Nicole Smith

Wednesday, February 20, 2008

Tuesday, February 19th, 2008

Mommy and Daddy went to go get their taxes done today and left me home with Lucille. First off, my Mommy likes to make things difficult by "working" in Utah but living in California. This caused serious issues last year when she was considered a part resident of Utah. So this year they threw the older lady (they think she comes out of retirement just to work during tax season) completely for a loop - in fact Darlene told them in doing taxes for 10 years she has never run across this situation. Needless to say, my parents don't think they were done correctly and will probably have to go back and have a supervisor fix them and amend the returns.

After that was completed it was time to take me for my monthly Synagis shot as well as get blood drawn as a family for the genetic testing they are doing at University of Washington. My parents said I had to go first, because if they weren't able to get blood from me then there would be no sense getting their blood. Although the tech had experience with kids after one stick my parents decided to wait until another time, it wasn't worth getting me all upset espescially since I still had my shot to go.

I was a very brave girl for my shot, just cried a little and calmed right down. I also weighed 12 lbs 2 ozs so I am putting on the weight, too.

Congratulations to my Grandma Marilyn who won Manager of the Year and Store of the Year!

Peyton Nicole Smith

Monday, February 18th, 2008

Look Mama - no hands! Have I told you before that I like "flying"?

Peyton Nicole Smith

Monday, February 18, 2008

Friday, February 15th - Sunday, February 17th, 2008

It was another quiet weekend with my family at home. On Friday afternoon I got my first card in the mail from Grandpa Gil since he had his stroke. It was so nice to hear from him again. I can't wait to see him in March in Salt Lake!

On Saturday night my parents decided it was time to try another real bath. It has been months since the last time they tried. I am holding my head up a lot better but just to be on the safe side, they had me lay down so they could try to make sure no water got in my trach. Initially, I wasn't sure what to think of the bath but once my hair got wet I was not happy! I got really cold and wanted out immediately! It only took a few minutes after I got dry and my trach care over with and I was sound asleep - that bath really wore me out.

In the last few days I have also really started to "shake" my rattle, so much so that I bonk myself in the head quite a bit. I don't really mind though, I think it is a lot of fun.

Peyton Nicole Smith

Friday, February 15, 2008

Thursday, February 14th, 2008

It was a nice, quiet day at home. There were no doctor's appointments or visitors so I was able to rest and play. I did get some good news today, though. I am finally going to get my travel feeding pump. Yeah! It should take a few weeks but we should have it in time for our trip to Salt Lake. The pump will allow me to get fed while I am in the car, at doctor's appointments, even when I am playing because it will be small and portable. Mommy is very excited. She is even considering taking me off of my one remaining "string" during the day (pulse ox machine) so that I am able to be more mobile. Instead of just playing on the floor when I am off my continuous feeds I could play on the floor whenever I wanted. I have been so stable with my oxygen levels and heart rate I really probably only need the pulse ox at night while I am sleeping.

Peyton Nicole Smith

Thursday, February 14, 2008

Wednesday, February 13th, 2008

So today was my cardiology appointment. Based on the lack of urgency the NICU placed on getting in for follow up to the cardiologist, my parents were assuming that the issues with my heart that were identified early on may not even be an issue any more. Two of the early problems (a VSD and PDA) did get better on their own. Yeah! However, after performing an EKG and echocardiogram on me the doctor diagnosed me with aortic valve disease. You can find out more about it at the link below:

The doctor told my Mommy that he wants to see me again in six months and nothing needs to change for right now - no activity restrictions, no medications, etc. However, this problem rarely goes away and most likely will get worse over time. In the future, I will probably need heart surgery to replace my aortic valve - which could be either a mechnical valve or one from a cadaver. It will probably be years before the surgery is needed and as it gets worse I will have symptoms of having a hard time breathing and getting tired much more easily. The doctor told Mommy this shouldn't interfere with my future surgeries (jaw distraction, cleft palate, hand).

Mommy did really well while he explained everything. She was fine the 30 minutes it took to get 3 blocks in front of UC Davis and another 45 minutes to get home to Elk Grove with me crying all the way. (Thank goodness for Lucille!) It wasn't until she had to call Daddy to explain what happened that she got upset. Mommy says she knows it will all work out in the end but she just wishes I could catch a break somewhere.

Mommy thought it was kind of ironic to find out the day before Valentine's day that I have a congenital heart defect. Actually this week is Congenital Heart Defect Awareness Week and Valentine's Day is Congenital Heart Defect Awareness Day. So to find out more you can go to this website:

An interesting fact:
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

My parents are going to worry about the more immeadiate issues that I am experiencing right now (getting my travel pump & hearing aides) and cross this bridge when they come to it.

Peyton Nicole Smith

Wednesday, February 13, 2008

Tuesday, February 12th, 2008

After two months of waiting (and fighting) I finally got in to see a pediatric gastroenterologist. She is Dr Davis and she is awfully nice! Unfortunately, the appointment was at her office in Folsom which is almost an hour drive away. Since it was so late in the day, my parents couldn't guarantee that Lucille would be able to get back by 5:30 so Daddy took the last half of the day off and the three of us went to the appointment and left Lucille at the house.

I was such a good girl! I didn't get upset or cry the whole car ride, the 45 minutes in the waiting room or the 30 minute appointment. In fact, I whined for a few seconds once in the car on the way home and then turned my head and fell asleep. I was pretty content just to sit in my car seat and play.

At my weigh in I was 12 lbs so I have put on weight since my last pediatrician's appointment. Since my continuous feeds are going so well, Dr Davies doesn't want to change anything just yet. Since it is still winter and cold and flu season she would prefer to give me a few more weeks to get bigger and then come back for a follow up. At that time she will probably switch me to a different formula that she thinks I will tolerate well. In the meantime her office is going to work with the insurances to try to get the travel pump approved so it's easier to get back and forth from appointments and not disrupt my feedings. Then, she will slowly move me back to bolus feedings and put me on acid reflux medicine if I start to have spitting up problems again. I am also going to be followed by a dietician who will help decide when to increase my volumes and if I need to have my calories moved up again. At least for the rest of the appointments they are going to start seeing me at the Sacramento clinic so the drive won't be so far. Mommy was so relieved to finally have someone take her concerns seriously and want to do something about it. She just about hugged the doctor she was so happy!

Then to top off an already good day, I came home to presents! My aunt and uncles on my Mommy's side sent a Valentine's coookie bouquet. Ok, the cookies are really for Daddy since there is a box on the way with presents for me and Mommy but it was fun all the same. Then, my Papa and Grandma Smith sent my parents some chocolates and me a stuffed doggy. How did they know red is my favorite color? I kissed my doggy right away and had to fight my brother Henry since he liked it so much, too! Thanks everyone!

Peyton Nicole Smith

Monday, February 11th, 2008

Today I had another PT appointment with Michael. He is very impressed with my progress, although there are a few areas he wants me to work on. He wants me to start putting more weight on my feet and pushing off from my belly on the palms of my hands. This is kind of hard for me due to my fused elbows.

You can see me above in headphones next to a picture of my daddy in headphones. Don't we look alike!

You can also see a photo of me helping Mommy in the kitchen. When Daddy got home from work tonight I was bonking myself in the head with a wooden sppon and I thought I was pretty funny!

Peyton Nicole Smith

Sunday, February 10, 2008

Sunday, February 10th, 2008

Saturday, February 9th, 2008

After a few short-lived walks in the stroller (one with Mommy and Karen, and one with Daddy and Mommy that involved spitting up) it was time to get back on the horse. It was a beautiful California day, in the 60's, and my parents decided it was the perfect time to go out in the stroller and visit the new park that opened up a few months ago. I was pretty quiet, just taking it all in. But most importantly there was no spit up and no crying! My parents only had to suction me once. What a big moment for all of us. Next time the boys get to come too!

After all that excitement I took a nice long nap!

Peyton Nicole Smith

Friday, February 8th, 2008

Friday was back to the old routine because Daddy went back to work and Lucille took care of me. In the evening, Daddy and I played peek-a-boo on the couch although with a twist - he used my feet instead of my hands and I thought that was pretty funny. He also "flew" me around in the air which was great fun too.

Mommy took her friend, Kelly's advice and got some baby oil gel to try the slicked back look. It smelled great and definately got my hair under control but it was a little too greasy. Even after a good shampoo it didn't seem to want to go anywhere. Mommy will keep that in her bag of tricks for photo ops in the future, though.

Peyton Nicole Smith

Friday, February 8, 2008

Thursday, February 7th, 2008

Three weeks ago, Lucille notified Mommy that she couldn't work today. Mommy let the home health agency know right away but as of yesterday afternoon they still didn't have someone to cover her shift. Work is crazy busy for Mommy right now so Daddy volunteered to stay home and play with me today. He said he was looking forward to having a Daddy-Daughter day with me. I had a really good time playing with him. He lets me get away with being rocked to sleep or falling asleep in my swing - while Mommy makes me fall asleep in my crib. I definately have him wrapped around my finger and will use that to my advantage in the future : )

Later in the evening, Mommy read me a a book that my Great-Grandpa Gil gave me for Christmas. It was all about a princess who didn't want to go to sleep. You can see above that I liked it a lot.

Peyton Nicole Smith

Thursday, February 7, 2008

Wednesday, February 6th, 2008

I am getting so big now that I don't even have to do "modified" tummy time anymore. Now, Mommy just puts me on my Boppy pillow made for tummy time and I hold my head up and look around. I am even comfortable enough now that I am reaching for toys and sucking on my hand while on my tummy. I can also hold my head up for longer periods of time in my baby chair.

Poor Mommy broke a tooth and had to go to the dentist today. They didn't have time to fix today, just an exam and xrays so she will have to deal with it a few more weeks until she can find time in her schedule to get back in to the dentist.

Peyton Nicole Smith

Tuesday, February 5th, 2008

Today, Mommy and I played with Terry, the special education teacher from Sacramento County. She brought some fun toys that she calls "incidental toys". Basically that is a big way of saying that when I touch something then something happens. One toy when I press it, the light comes on and it vibrates. Another toy is an old See and Say that has farm animals then make a sound when you pull them. I was a little unsure about some of them at first but after I watched Mommy's face and saw that she thought it was fun then I decided it must be okay. Terry thinks I am awfully smart and thinks I am doing really well with my development.
Peyton Nicole Smith

Monday, February 4th, 2008

Today Kirsten, the hard of hearing teacher came out to visit me. Mommy already figured out most of the basic signs so Kirsten didn't have a lot of advice to offer Mommy right now. Once I get my hearing aid Kirsten wants to come back out to follow up. I was already kind of sleepy before she came so by the time she left I was exhausted and grumpy when trying to get to sleep for my afternoon nap so Lucille had to rock me to sleep.

Peyton Nicole Smith