Thursday, April 30, 2009

Tuesday, April 28th, 2009

After all the anticipation, today my great grandma Joyce finally arrived to play with me. And how did I react to her showing up? I buried myself in Mommy's arms and wouldn't move more than a few inches from her! You can't really blame me, I am still throwing up a little bit on my feedings so I am not 100% better yet. As a little time passed I eventually left Mommy's lap and played a little a few feet from her.

In the afternoon, Mommy, Grandma and I went to Mimi's to go get some take out for dinner. While we were waiting for it I walked and danced around the waiting area. I even waved and blew kisses to another man waiting for his take out. I was feeling much better by that point. When we got home I got to eat some ice cream in my high chair while Grandma and my parents ate.

My furry brothers had been at day care all day so when they finally met Grandma they were pretty worn out - not even a bark out of either of them. In fact, Chili sat on the couch next to Grandma and laid his head on her lap for about 45 minutes tonight. I made it on Grandma's lap for about a second before I started crying and wanted off. I may be a little hesitant now, but Mommy knows it won't be long before I am good friends with Grandma and Mommy will finally get her photo op.

Peyton Nicole Smith

Tuesday, April 28, 2009

Monday, April 27th, 2009

After a quiet night for Nicole getting Pedialite while I slept, Mommy had high hopes for today. Within minutes of starting my full strength soy feeding though I threw up all over her. What a way to start the morning!

Since my ER trip a few days ago I have been very whiny and any time I am not in Mommy's arms I start to cry. I really get upset when she makes any move to leave the room. So when Lucille showed up at 7 am, I was near hysterics that Mommy was going to leave me. Despite all my protesting, Mommy did eventually leave. When she came back 20 minutes later I was happily playing as usual.

Because of the vomiting, Mommy had Lucille wait an hour and then start me back on Pedialite to give my tummy a break. I held that down without a problem and felt so good that I bugged Lucille to take me on a walk in my stroller. I finally wore her down!

In the afternoon Mommy had Lucille gradually add some soy in with the Pedialite and by the end of the day I was up to 75% soy 25% Pedialite. No more vomiting and no more fever. Good thing, because I won't have a night nurse the next three nights and it's Daddy's night tonight!

Did anyone notice I turned 20 months old today - such a big girl!

Peyton Nicole Smith

Sunday, April 26, 2009

Sunday, April 26th, 2009

The picture tells the story - it was the kind of day where I needed both my lovie and my Cabbage Patch to comfort me. Carol told Mommy I slept well last night except for the massive diarrhea diaper at 3 am that required an outfit change. Maybe because of that I slept in until 7 and woke up grumpy - not a good sign. It appears I have moved from the fever phase to the vomiting and diarrhea phase. Within minutes of Mommy getting me out of my jammies I threw up on her and me. After that, I was content to sit with her in the chair for the next several hours and relax. When Daddy got up around 10, Mommy decided to try to start another feeding but mid-way through it all came back up. For the rest of the day, my parents started easing me into Pedialite and eventually a mixture of half Pedialite and half formula at a very slow rate and much less volume than normal. There was yucky diaper and after yucky diaper as well. On a good note, although I still had a fever it had come down quite a bit from the last few days - in the 99-100 range. So despite an upset tummy, I felt better in general and was able to play for most of the afternoon. My parents changed my trach tonight for the first time since my upsizing and that went in without any problems. Thank goodness!

The plan for the week is to try to get me back up to full feeds and feeling better. So as not to infect anyone else, Mommy will cancel all my appointments in the beginning of the week. It will probably be a long week but my great-grandma is coming to visit me for a week starting Tuesday so I have something to look forward to. We have never officially met before, but I know we are going to hit it off!

Peyton Nicole Smith

Saturday, April 25, 2009

Saturday, April 25th, 2009

After 5 hours of uneventual sleep for me (2 for Mommy and 3 for Daddy) it was time to head back to UC Davis to the urgent care clinic to be checked out again. When we showed up it was time for a dose of Tylenol so Mommy waited until they looked at me. Initially my temp was 98.6 but within 20 minutes it had already shot up to 100.2. The doctor basically told my parents what they heard in the ER - keep me hydrated, give my Tylenol every 4 hours and hopefully this will all run it's course in 7-10 days. Once the Tylenol kicks in and my fever goes down I play and run around as usual but about 3 hours later it starts to wear off and the fever returns - and then I get grumpy. I took a two hour nap in the afternoon and then played for several hours before heading to bed. My temp is still in the 100's with the Tylenol and my heart rate is much higher then normal but I have held down all my feedings today so that's a step in the right direction. Hopefully it's a quiet night tonight or me so my parents can get some rest while the nurse is here.

Peyton Nicole Smith

Friday, April 24th, 2009

Guess where we are??? The UC Davis Emergency Department of course (it has been several months since my last visit after all!)

It all started last night when my heart rate started to go up while I was sleeping - always a sign that something is brewing. Then my night nurse noticed I was running a slight fever. When Mommy got up this morning she gave me a dose of Tylenol and then asked Lucille to give it to me every four hours the rest of the day. Spencer, my music therapist, ended up calling in sick so I got to rest most of the day. Despite having a fever, I played as normal and didn't show any other signs of being sick.

I went down for bed around 7 pm but for the next few hours I tossed and turned and was quite restless. Daddy gave me a dose of Tylenol at 9:30. At 10:00 when Carol came on shift, they decided to get a rectal temperature since I felt so hot to the touch. It was 103.7! A few minutes later I threw up a little in my crib. Daddy came to get Mommy and while she was holding me I threw up a lot more on her (Mommy never gets through this without getting thrown up on). My parents called the on call pediatrician who recommended we all head to the ER. So we said goodbye to Carol and headed to UC Davis. It took almost an hour before we got into a room but they got to work pretty quickly. Over the next six hours I got a chest xray to rule out pneumonia, a catheter to get urine to rule out a urinary tract infection and a blood draw to get a culture and look at my white blood count. Now you all know what a hard stick I am. My parents warned them ahead of time so they brought down someone from the children's transport team who was really good. Even so, it took her almost two hours to get an IV in and to get blood for testing. Mommy is not good with needles so she had to wait outside the room while Daddy held me down. I finally got so worn out from crying (and it was 2 in the morning) I wasn't fighting much anymore.

Around 4 am most of the test results had come back and everything was leaning towards a run of the mill viral infection. Not surprising since my night nurse has been sick with a cold the last week and a half. After some fluids and a dose of Tylenol they told my parents to go ahead and take me home. However, they want my parents to follow up with a visit to the urgent care tomorrow (or should I say today). By about 5:30 I was home in bed and ready to sleep for a few hours. My parents will take turns getting a few hours of sleep until it is time to leave for the urgent care appointment.

BTW - when nurses in the ER start to recognize you it doesn't mean you are a celebrity - just that you are a high utilizer of ER services! We have now officially been in every room in the pediatric section of the ER - another sign we are there way too much!

Peyton Nicole Smith

Friday, April 24, 2009

Thursday, April 23rd, 2009

Did I ever tell you how creative my Daddy is? He decided that I couldn't just have plain ole white trach ties. Nope, he got some pink dye and now I have custom trach ties! Daddy wants to go into business making custom trach ties and trach tubes. He can't believe there aren't jeweled out trach tubes yet - he thinks there would be a great market for them!

Peyton Nicole Smith

Thursday, April 23, 2009

Wednesday, April 22nd, 2009

If anyone has any good advice about time out's please let my parents know. Otherwise, I will stay in my crib the rest of my life! As soon as I am let back out I go right back to doing what I was just told not to do - with a smile on my face!

Peyton Nicole Smith

Tuesday, April 21, 2009

Tuesday, April 21st, 2009

It was another hot day - in the 90's - so perfect weather to try out my new swimsuit and baby pool. Mommy didn't put much water in but it was enough to keep me happy for part of the afternoon.
With all the trach news yesterday, I forgot to mention my IFSP meeting yesterday. Because I am doing so well the only changes are with my physical therapy and special education. Now my physical therapist, Michael, will only come once a quarter to monitor my progress instead of twice a month. Terry, my special education teacher won't be visiting me at all anymore. Although it is sad to say goodbye it just shows how much everyone has helped me that I don't need the services anymore. Thanks Terry and Michael!
This evening Daddy was showing me a $1 bill. I pointed to George Washington and signed Grandma and then pointed to the pictures of my grandmas on the wall above my bed. Mommy isn't sure why but I assume anyone with long white/gray hair is a grandma. Don't be offended though, I also assume any man regardless of size, race, etc is my Daddy!
Just to prove Daddy right that I am following in my Mommy's OCD footsteps I decided to demonstrate for Mommy tonight. She was sitting on the couch and was changing the channel with the remote control. Before she could finish, I walked right over, grabbed it from her hand and set it on the table next to the Lazy Boy - right where it belongs. I think I saw Mommy cringe a little. Like looking in a mirror huh Mommy?
Peyton Nicole Smith

Monday, April 20, 2009

Monday, April 20th, 2009

Mommy was on the phone first thing this morning to the ENT at Stanford to figure out what to do next after the trach fiasco last night. Mid-afternoon the ENT nurse gave Mommy a call back and the news wasn't good. My parents needed to try to get the 3.5 trach back in and it wasn't going to be pretty. Although I was in no "iminent danger" if I was to get sick the trach would be too small and I might start having respiratory distress. A 3.0 trach is really only made for infants 6 months and younger and there is no smaller trach size to put in after 3.0. The nurse was very honest with Mommy about the fun of upsizing. Here's what she told Mommy:

1. Hyperextend my neck - use two rolled up blankets instead of one
2. Moisten the trach with water soluable lubricant
3. Be prepared to push really hard
4. Wait for the popping sound when the skin finally gives
5. There will probably be blood - quite a bit of it
6. If all else fails and the 3.5 trach won't go back in - come to Stanford later in the week and have the doctor put it back in - she's not afraid to use some muscle if she has to

As you might imagine with those comforting words my parents were oh so excited to change my trach tonight. In anticipation of there being some pain, my parents gave me a dose of Tylenol with codeine. They gave me thirty minutes of play time to let it kick in and then it was time to start. (My parents had considered taking a few shots of tequila to relax them a little but Mommy faints at the sight of blood so she was already iffy for the procedure to begin with).

As soon as my parents picked up the trach I started to cry - I have a pretty good memory and last night was not something I wanted to repeat so quickly. Mommy started into "Five Little Ducks" in an overly happy voice and handed me a toothbrush to keep my hands busy. And then after a lot of pushing and some tense seconds the 3.5 trach was back in! My Daddy is totally awesome - such a pro - not even a drop of blood! It hurt and I was crying but within just a few seconds my parents had the trach tie secured and sat me up and I was back to sucking on my toothbrush as if nothing had ever happened. Daddy felt horrible for hurting me so he picked me up and I swear he had tears in his eyes. I could have asked for anything from him at that point and he would have given it to me - too bad I don't know the sign for Shetland pony!

It wasn't long before I fell asleep - peacefully - and now back in a 3.5 trach. Good job Mommy and Daddy!

Peyton Nicole Smith

Sunday, April 19, 2009

Sunday, April 19th, 2009

Just when my parents were feeling pretty comfortable with my trach changes - there was a little excitement tonight to keep things interesting. As usual, my parents warn me when it is time to take the trach out. Then they count to three and out it comes. Now, over the last few weeks a little granulation tissue has been developing around the stoma (the hole where my trach goes). So when Daddy couldn't get my trach in my parents figured that must be why. So they did something they have never had to do before - they got the smaller size trach (3.0 vs 3.5). That went in like a charm. My parents decided to try the 3.5 one more time so they took the 3.0 out and once again the 3.5 would not fit so the 3.0 went back in. Talk about musical trach changes! Mommy started checking out the old trach and discovered - it was a 3.0!!!! Apparently, last week my parents put in the smaller size trach without realizing it. Ooops! No wonder the 3.5 wouldn't fit in tonight! So my parents have officially downsized me without meaning to. They are a little unsure what to do about it now so Mommy will put a call in to the ENT tomorrow first thing. The good news - I tolerated a smaller trach. The bad news - they don't have a trach smaller then the 3.0 now. Here's hoping they won't need to worry about it until this gets worked out with the ENT. Now it's a little scary to my parents that not only did they not notice they had put in the wrong size trach - but over a week's time not one of the four nurses who cared for me noticed either!
Peyton Nicole Smith

Saturday, April 18, 2009

Saturday, April 18th, 2009

It was a warm beautiful day in Elk Grove - in the 80's - so while my parents ran errands Sarah took me to the playground so I could get on the swings. I also took a long walk in the stroller with Mommy this morning. Unfortunately, I lost one of my shoes along the way. When my parents drove the route later in the afternoon though they were able to find it. It was a chilly walk at 7 in the morning so I had to be all wrapped up in a blanket. I was warm except for my hands - no matter how many times my Mommy tried to keep them under the blanket I would take them out because I wanted to sign. Now she is going to have to find some mittens for me!

Peyton Nicole Smith

Friday, April 17th, 2009

Do you like my new shorty robe? Lucille got me some cute outfits for spring and the robe. Now that I am taking baths more often the robe has come in quite handy. Mommy puts on my diaper and robe and lets me run around the house for a while before putting me in my jammies for the night. As you can see I don't mind it at all.
Now that Spencer has come to see me over the last few months I am well versed in how our sessions go. As soon as he sits down with his guitar I start making requests - showing the star sign for "Twinkle Twinke Little Star", turning myself around for the "Hokey Pokey" and touching my head for "Head, Shoulders, Knees and Toes". Once I run out of requests then we move on to looking in his big bag for instruments and activities. I am not a big fan of playing the drum but I like watching Spencer play it.
Peyton Nicole Smith

Thursday, April 16, 2009

Thursday, April 16th, 2009

My parents are getting much more brave with me. Today since Daddy was working late, my Mommy decided to try me out in the bath. Now I have only been in the bath a few times in my life so for Mommy to do this without Daddy around was a pretty big deal for her. Although I love putting my fingers and toes in water - I haven't ever been a big fan of the bath tub. Mommy wondered if I would like it better in the infant bath (I've only been in it once - my cousin Jackson has actually been in it more than I have!) She got some water and made sure it was the right temperature and helped me put my feet in. I whined a little but no all out sobbing so Mommy put me in the rest of the way. Initially I was not so sure but eventually I warmed up to it and within a few minutes I was splashing away. Because of the trach my parents have to be VERY careful with me in the tub but I think they will let me take a bath more often now. Next stop - the baby pool!
Peyton Nicole Smith

Wednesday, April 15, 2009

Wednesday, April 15th, 2009

It was a busy day with both a feeding therapy appointment and an occupational therapy appointment - all the more confusing when both the therapists are named Karen! Feeding therapy didn't go so well - midway through the session I threw up everything I had just eaten after a coughing fit.

Afternoons with Mommy until Daddy comes home from work can be quite challenging depending on the state of my naps earlier in the day. There is usually at least a few time-out's in my crib for hitting the doggies, Mommy or some combination of the two. Today was no exception and so Mommy had to capture this moment on video. While still in the crib I understand what I have done wrong and what the expectation is for my release but as soon as I am out of that crib the process begins again - usually within mere seconds of my feet hitting the floor. Does this make me a repeat offender?

Peyton Nicole Smith

Tuesday, April 14th, 2009

It was a big day for me today. I went poo-poo in the potty - and not just the little potty but the Mommy and Daddy potty! I asked for Prudence - my potty doll so Mommy asked me if I wanted to sit on the potty. When I nodded yes, Mommy rushed me to the bathroom and got me situated on the potty. For the next 15 minutes Mommy and I sang songs - she even made one up about me being such a big girl for sitting on the potty. Every few minutes I wanted to get off to check the potty to see if anything had happened and sure enough - I made a little poo-poo (Mommy would call it miniscule but hey it's still something right?). Mommy was so excited and we got to flush the toilet which was probably the best part of the whole experience as far as I was concerned!

Peyton Nicole Smith

Monday, April 13th, 2009

I love my Cabbage Patch doll and as soon as my Mommy and me video starts up I make sure he is close by so I can participate in the songs - me being the Mommy. Here you can see me swinging my baby like the parents are swinging their kids in the video!

Peyton Nicole Smith

Monday, April 13, 2009

Sunday, April 12th, 2009

Happy Easter! You can see above that the Easter Bunny (and family) were very generous this year. Just because I don't eat much candy doesn't mean I didn't get anything for Easter!
After some breakfast, my parents and I had to rush to get ready for the Easter egg hunt at the Haggin Oaks Golf Course. It was a beautiful day - almost 80 an with a slight breeze. I was able to wear a cute sleeveless dress perfect for a spring day. I didn't even protest that I had to wear my socks and shoes. We arrived a few minutes early and I was getting pretty antsy with all the eggs lying on the grass but not being able to go get them. I got to say hi to Sophia and Brighton but it was almost time to start so we didn't get time to chat! They allowed one parent to "assist" so while Daddy manned the camera, Mommy came out on the grass with me. She didn't really help much beyond holding the basket for me since I am a big girl and was able to pick up the eggs and put them in the basket without too much trouble. I was so excited to see everyone else picking up eggs, though, that I was only able to get three eggs before they were all gone. Two of the eggs had candy and one had a voucher for a stuffed bunny! (There were also vouchers in the eggs for a golf club but my parents figured I didn't really need one more thing to hit the dogs with so they were happy I got the voucher for the bunny).
It was over pretty quickly and we headed to the car. I still had a little energy to burn so when we got back home, my parents let me take off my shoes and socks and run around the local park for a while. Then it was home for a three hour nap and then back to the park for more running around. It was a great day!
Unfortunately, my night nurse pulled a no show tonight so my Daddy stayed up with me but I was a good girl and slept all night for hm.
Peyton Nicole Smith

Saturday, April 11, 2009

Saturday, April 11th, 2009

In prep for Easter tomorrow, my parents decided to try to put rollers in my hair tonight. They were able to snap a few pictures before I started ripping them out. So there won't be any curly hair in the morning but they'll try them out again in the future.

Peyton Nicole Smith

Friday, April 10, 2009

Friday, April 10th, 2009

Oh the bruises! Mommy is convinced I will be 99 and still have bruises on my forehead. Every school picture, family photos, my wedding portraits and so on and so forth. By anyone's standard this is a pretty brutal one but I am a tough cookie and I didn't cry any more when I got this one then any other fall on my face. I just keep on smiling!
Peyton Nicole Smith

Thursday, April 9th, 2009

Here I am helping Mommy organize - taking the extra diapers out of the drawer and putting them in the diaper stacker. Such a good girl!

Peyton Nicole Smith

Wednesday, April 8th, 2009

Today I had feeding therapy with Karen. I have gotten very picky about what I want to eat, though. Pureed baby food is no longer on the list of options as far as I am concerned. Karen suggested that my parents not present baby food in the jar but "hide" it in a bowl and that might trick me into trying it. Needless to say, I am smarter than that. Karen also said to try adding salsa to it to liven up the taste. Unfortunately, since I won't take the food out of the bowl - with or without salsa - Mommy hasn't had a chance to try this yet. Mommy thinks next time she will try to pull it out of the freezer so I might get tricked into thinking it is ice cream - I will let you know how that goes : )

I got my new speaking valve today. It is a little different and I let Mommy put it on for a little while a few times today. My parents are waiting to spend much time on it until they can introduce the idea of a timer when using it. At my craniofacial panel, the speech pathologist told Mommy to use a timer so that I felt like I was in control - I would know when I would start wearing it and when I could take it off because the timer would go off. When Mommy was talking with Karen about it today, Mommy said the kitchen timer she bought this weekend didn't seem like it would work. It doesn't allow for anything under a minute (we'll start with me wearing the speaking valve for just seconds) and it is pretty boring. Karen suggested using a visual timer. Mommy went searching on line and found one that she thinks I will love. Not only does it have lights to show when my time starts but it will have a yellow light to warn me the time is almost up and then red when the time has finished. It also has several sound options as well for when the time is up. Mommy can't wait until we get it to see if it will work and keep me interested.

Peyton Nicole Smith

Tuesday, April 7, 2009

Tuesday, April 7th, 2009

Here I am checking out my Cabbage Patch kid. Did you know that they have a signature on their bum? I thought that was pretty cool and I signed "red" to Mommy. I decided it was more fun to have my doll go around with no clothes at all so I could see the signature. Mommy tried to convince me that he should probably be wearing a diaper but I wasn't having any of it - so he was carted around with me most of the afternoon naked as a bluejay!

At the last minute, the doctor's office called Mommy last night to let her know I did need a Synagis shot in April after all. Since Mommy's day was all booked out already, Daddy took me in this morning with Lucille to get my shots. I weighed in at 19 lbs 2 ozs - so I am 19 lbs at 19 months - WooHoo!

After months of playing in the dog food bowls I did more than play tonight. When Daddy wouldn't give me any more of his water, I went over to the dog's water bowl and dipped my cup in it and got myself a drink. As if that wasn't bad enough, I had already snagged a kibble out of the dog food bowls and ate it. Although my parents never saw it in my mouth I had a pretty serious coughing fit so Mommy is pretty sure that's when I swallowed it!

Peyton Nicole Smith

Monday, April 6, 2009

Monday, April 6th, 2009

My IFSP is coming up again soon, so when Michael came today he decided to update my developmental checklist to see how I was doing. Basically, I got to run around and play for most of the session so I was happy to comply. Here were the three areas and how I scored:

Motor skills - 18-20 months
Locomotion skills - 16-17 months
Ball skills - 23 months

As you can see I am doing really well - espescially considering I didn't start walking until 16 months!

Peyton Nicole Smith