Tuesday, March 31, 2009

Tuesday, March 31st, 2009

Yes, that's my Daddy and yes that is a smile on his face. He is not up to driving yet, but he felt stable enough to have Mommy bring him in to work today. As long as he didn't move he was able to keep from getting so dizzy that he got sick, although he was still pretty groggy from all the medications. Mommy and I went to pick him up after my therapy appointment and I got to check out Daddy's office for the first time. I am so glad he is starting to feel a little better.
Peyton Nicole Smith

Monday, March 30th, 2009

Daddy is still not feeling well but at the doctor's appointment today, he didn't recommend really doing anything differently. He changed out a medication for the dizziness and told Daddy to come back towards the end of the week if there isn't any improvement.

Mommy and I are certainly getting a lot of quality alone time together with Daddy being sick. Daddy normally puts me to bed at night but that hasn't happened in almost a week. I like to test boundaries with Mommy so I have been doing a lot of crying when she puts me into the crib at night. When that doesn't get her attention I throw my lovie or doll out of the crib. Mommy doesn't get right up to put them back though, she lets me sweat it out a little while!

Peyton Nicole Smith

Sunday, March 29th, 2009

Daddy was insistent that he go pick up his car today. It has been sitting at work since Thursday and had his phone and other items in it. Mid-day he thought he was feeling well enough to drive, so we all got in the car and headed to his work. All seemed fine, but when Daddy got home he admitted his head was killing him and it made the drive back to the house a little hairy. Mommy sent him back to bed for the rest of the day and he only got up briefly to help change my trach. Mommy is going to try to get him back in to the doctor tomorrow.

Peyton Nicole Smith

Monday, March 30, 2009

Saturday, March 28th, 2009

Daddy was still not feeling too hot today so Mommy called the on call doctor to see if there was anything stronger that he could call in to help Daddy with his headache. Initially the on call doctor said that since he hadn't seen Daddy that he Daddy would have to come in to the urgent care clinic. Later, the on call doctor called back and said he had called in some stronger pain meds so Mommy packed me in the car and we headed off to pick them up. Then I went down for my mid-day nap. When I woke up it was time to get dressed for my friend Sophia's first birthday party. Mommy and I kissed Daddy goodbye and headed to the party. Mommy is getting to be an expert at driving around with me without a nurse. I am such a good girl that she doens't need to worry too much about me. There were lots of other kids at the party. We got to play with bubbles and do an Easter egg hunt. I wasn't that interested in the egg hunt as much as pulling all the flowers out of the ground and tearing them apart! When it was time to leave, Mommy and I decided to swing by Baskin Robbins so I could get some vanilla ice cream and she could get Daddy some too to hopefully make him feel better. He was still battling the headaches even with the stronger pain meds so Mommy is going to get him an appointment Monday morning to have things checked out again.

Peyton Nicole Smith

Friday, March 27th, 2009

Mommy had been hoping that Daddy would get better but to be safe, she decided to get him into his PCP today. Daddy's headache had returned so it was a good thing she had gotten him the appointment. The doctor thinks he has two things going on - a pulled muscle that is creating the neck/head pain and then a viral infection in his ear that is causing the vertigo that then results in vomiting. He recommended that Daddy take Ibuprofin to reduce the swelling in the neck and as far as the vertigo there wasn't much that could be done - it would get better in a few days. My parents headed to the lab to get some routine bloodwork and then home. Early afternoon Daddy was feeling a little better after having a nap so he decided to do some neck stretches that the doctor recommended. Immeadiately, he had another attack of dizziness that eventually led to him throwing up again. Mommy put a call into the doctor's office to try to get a call back. After waiting all evening though, the call never came. By early evening Daddy was feeling a little better but once again the headache had returned in force. Mommy is going to follow up with the doctor's office tomorrow.

Peyton Nicole Smith

Thursday, March 26th, 2009

Until early afternoon it was just a pretty normal day. Then Mommy got a call from "Uncle" Jeff at Daddy's work that Daddy wasn't feeling well and they had called the paramedics. When Uncle Jeff called back later he let her know that Daddy was being taken to Methodist Hospital (yes, the same one where I was born). Good thing Mommy has practiced driving with me alone recently because she let Lucille go home and then packed me in the car and we were on our way. We listened to some CD's on the way which helped to calm Mommy's nerves. Mommy had to wait in a line at the ER to talk to someone but once she told them what was going on, they led us back to a room where Daddy was lying down. He has had really bad headaches the last 10 days or so after lifting some stuff at work. All the different pain meds he has tried has not really helped. Today he was sitting in his car at lunch time reading a book and he got really dizzy. So dizzy that he couldn't make it out of the car for awhile. Then he started throwing up. When he finally could, he stumbled into the office and that is when the paramedics were called. Although the paramedics were initially thinking food poisoning when the ER doctor came in he ruled that out pretty quickly. He had Daddy do a few tests (touching his nose, etc) and decided it probably wasn't any type of brain injury and maybe just a pinched nerve or strained muscle. He gave him some meds for the dizziness and vomiting and let him leave. It wasn't a quick process to get to that point - it took about 5 hours. Good thing Mommy had packed my feeding and a few toys. Even so, I got bored quickly so Mommy and I would walk up and down the halls of the ER. One of the EMT's even gave me a Junior Firefighter sticker after I showed him the sign for "firefighter". I think I was the bright spot in the ER that day since I was just so cute smiling and waving at everyone. By the time we left, Daddy was feeling a little better but Mommy is going to take the doctor's advice and have him follow up with his primary care doctor as well.
Peyton Nicole Smith

Wednesday, March 25, 2009

Wednesday, March 25th, 2009

Now that I am such an accomplished eater - I have a very strong opinion about what I will or will not eat. At my VitalStim appointment today I was doing very well - until about 10 minutes in when the vanilla ice cream ran out. Mommy had brought some other options - apple juice, mac & cheese, oatmeal & frozen watermelon. But I wanted vanilla ice cream and there was no changing my mind. So in between miniscule bites of the remaining vanilla ice cream Mommy was able to sneak in some apple juice to keep me swallowing during the stimulation. My parents are going to have to buy this stuff in bulk!

Peyton Nicole Smith

Tuesday, March 24, 2009

Tuesday, March 24th, 2009

What do I do with Play-Doh? Eat it of course! (Or at least threaten Mommy that I am going to eat it but never actually put it in my mouth). I think Mommy calls this "pushing buttons".
I had a lot of fun with Karen and Terry today during my therapy session. I played with Play-Doh, painted with finger paints and practiced climbing up on the couch. In the afternoon, the remaining two ounces of the oatmeal with pears and then had some milk (yes, my parents really did learn from the apple juice episode yesterday). My parents aren't trying to get too excited but all this oral eating is pretty cool!

Peyton Nicole Smith

Monday, March 23rd, 2009

This afternoon I had a great physical therapy appointment with Michael. I crawled!!! OK, it was only a few feet a few times through the collapsable tunnel - but it was actual crawling! So much for that "have to crawl before you walk" advice : )

After all that moving around, Mommy figured she would try out some more pureed baby food with me. I ate 2 ounces of oatmeal with pears. Yummy! As if that wasn't good enough I then drank 4 ounces of apple juice in my Infa Trainer! When Mommy started adding up calories she realized I had consumed about 1/5 of the calories I would need to get in the day - so enough to replace one of my bolus feeds. Yeah for me! So what was the effect of all the juice you ask - how about a baby that WOULD NOT GO TO SLEEP! That's right I had lots of sugar coursing through my veins and there was no way I was going to bed at 7:30 even though I hadn't had my afternoon nap. After crying in my crib for an hour, Daddy came to get Mommy to see what should be done. She suggested letting me run around since I obviously wasn't tired. As soon as my feet hit the floor the crying stopped and the dancing and running began. I could tell my parents were having a hard time not smiling because the sight of me running around the house in my pajamas super happy was pretty cute! After about 45 minutes of non stop movement, Mommy put me back in bed. It took me about 10 minutes of crying to eventually fall asleep. So new rule in the Smith household - no juice after 5 pm. This is probably common sense to all the parents of toddlers out there but my parents are new at this oral eating stuff so they are still figuring it out : )

Peyton Nicole Smith

Sunday, March 22, 2009

Sunday, March 22nd, 2009

After the cold, windy day yesterday and a rainy night - today was nice and sunny. When the wind wasn't blowing it was warm too! In the afternoon while Daddy was napping, Mommy got really brave and took me out to do some shopping. It's only the second time Mommy has been alone in the car with me. The last time she just went a few blocks to a drive thru. Today we actually stopped several places. I was a really good girl and clapped and danced to my music therapy CD's until we got to our destinations. The first was a children's store where we were looking for a birthday present. Then it was on to Kohl's to get me some new socks. While we were there, something caught my eye. It was a Disney Sleeping Beauty dress - one of those frilly ones! It looked too big for me and Mommy couldn't find a tag - but it was 60% off so Mommy couldn't pass it up. Mommy is sure it will come in handy in a few years when I want to play dress up! On the way home, it was so nice that Mommy decided to stop at the park. I was a big girl and got on the baby swing all by myself. Then Mommy let me run all over the grass. It started to get pretty windy so Mommy and I headed home. I am very proud of Mommy for getting so adventurous with me!

Peyton Nicole Smith

Saturday, March 21, 2009

Saturday, March 21st, 2009

It was such a great day today! It started out with me sleeping in until almost 7 am - Mommy got to finish a whole cup of coffee before I woke up so that made her day! Before Daddy woke up, Mommy and I watched a little morning TV. My Cabbage Patch doll, Payton, was on my lap the whole time. When I get out of bed in the morning, I usually request that he come with me since we are such good friends. First we started watching a little Dora the Explorer. Almost immeadiately, I got up and walked over to my bookshelf and pulled out my Dora book I got for Christmas. Mommy was pretty surprised that I realized it was the same Dora. Later, we watched a few nursery rhymes On Demand. They have little kids sing and dance to the different songs. During "Hey Diddle Diddle" I got up and walked away. A few minutes later, I came to Mommy with a book. It was my "Hey Diddle Diddle" taggie book. Now Mommy has never sang the song to me while reading the book - just read the words - but I knew it was the same thing. Mommy was pretty impressed - she doubts she could have done that at my age!
Shortly after breakfast this morning, we all got in the car and drove to Roseville. We met "Uncle" Jeff at the car dealership where he had left his car for a few hours to get fixed. Then we all drove to the mall. When we walked in who should be there - but the Easter Bunny! Since there was no line, Mommy convinced Daddy to have me sit on his lap. After our Santa experience just a few months ago Mommy wasn't quite sure how it would go over with me. She asked if I wanted to say hello to the Easter Bunny. I was okay with that but as soon as Mommy asked me if I wanted to sit on his lap - I let her know in no uncertain terms with a vigourous head shake - that I did not want to sit on his lap! Mommy asked if I would be okay sitting on her lap next to the Easter Bunny and I was okay with that. So while the photographer, Daddy and Uncle Jeff made silly faces and played peek a book with me - Mommy and I got our picture taken with the Easter Bunny. Now there was no smiling going on - but there was no crying either - so Mommy decided that was an improvement over Santa! We walked around the mall together and then eventually went to lunch too. I was LONG past my nap time by this point so towards the end I got a little antsy - but I was still a very well behaved little girl. I even let Uncle Jeff hold me several times during the day. After dropping Uncle Jeff back at the dealership, it was time to head home and I was asleep within moments of getting on the freeway. I woke up briefly when we got to the house, but fell back asleep for another 2 1/3 hours - I was worn out.
When I woke up I was hungry and ready to eat. Mommy had just gotten some pureed mac and cheese from the store so she pulled it out first. In about 20 minutes I downed 2 ounces! OK that may not sound like a lot to you - but that is the most baby food I have eaten in one sitting - EVER!!! My parents finally stopped giving me any more because they were a little concerned as to how I would tolerate so much food in my tummy but it was all good. Right after it was time for my last feeding and even with all that in my tummy too there were no problems - I am a big girl after all!

Peyton Nicole Smith

Friday, March 20th, 2009

I had a great music therapy appointment today with Spencer and Mommy. I got to pick which songs and activities I wanted by picking laminated pictures off a felt board. Some of my favorites are "The Hokey Pokey" and "I'm A Little Teapot". Actually, it was much more fun to watch Mommy and Spencer doing the Hokey Pokey then it was to participate myself!
I got my new Infa Trainer cup today. It is supposed to be a cup to help transition between the sippy cup and just a regular cup. You can see above that I have a much easier time drinking from it because I don't have to tilt my head quite so far back. When my parents help me with it - I am able to get more in my mouth and less down my shirt and in my trach. Before Daddy got home tonight I requested ice cream so Mommy helped me. I was able to eat about 7-8 teaspoons of vanilla ice cream - but I wasn't done there. I then moved on to 5-6 teaspoons of chocolate pudding. Yum! I finished it all off with close to an ounce of apple juice using my new Infa Trainer cup! Mommy was very impressed - that is a lot of volume in one sitting!
After all that eating I was definately ready for some sleep. I have some pretty funny sleeping positions - but this is a favorite for my parents and nurses alike - the bum up in the air. Yes - I am really sleeping like that!

Peyton Nicole Smith

Friday, March 20, 2009

Thursday, March 19th, 2009

Mommy was a little nervous for my follow up VitalStim appointment today. After all, she has been putting the stickers that hold the electrodes on me at home while I am eating to try to get me used to them - but I have been pulling them off as quickly as she can put them back on. But Mommy came prepared - she brought a mini-highchair, food, juice, Signing Time DVD's and a portable DVD player. The only thing Mommy forgot - a bib! A bonus is that there was a wall with mirrors so I got to look at myself the whole time - even better! Mommy got me in my chair got the DVD going and got out the vanilla ice cream. Jan put the stickers with the electrodes on and we were off. Mommy thought it appropriate that our first Signing Time DVD was "Time to Eat". While I danced and ate my ice cream, Jan would gradually turn up the stimulation. As soon as it would go up, I would make a funny face and then be right back to dancing. I ate a lot of ice cream! Then Mommy moved on to sips of apple juice from a cup. Jan kept moving up the stimulation and got me to 5.5! We knew it was working because sometimes you could hear me swallow! Every now and again I would touch the stickers but quickly got back to eating and watching Signing Times. After about 30 minutes with the electrodes on, Jan thought we should try a little longer so Mommy switched me to eating frozen fruit from my feeding bag. Then I was getting stimulation while I was sucking the juice from the bag. Mommy really thought my lip closure was much improved. You can see a picture above from Mommy's cell phone where I am wearing the electrodes. After 45 minutes, we were ready to go but we will come back next week to do it all again. I am going to be a pro pretty soon!
In the evening with my parents, I vocalize more than I do during the day. Mommy tried to get me to copy her and say "Mommy". Up until now, I would say "aaahh" but when it came time to close my lips together I couldn't figure it out. I have started to close my lips better though, and actually started saying something pretty close to "Mah". Of course, as soon as Mommy turned on the video to capture that moment I stopped vocalizing all together! You can see that in the video above. (I'm a little shy okay!)

Peyton Nicole Smith

Wednesday, March 18, 2009

Wednesday, March 18th, 2009

I had another successful feeding therapy appointment. I had chocolate pudding, corn casserole, crushed up veggie sticks and lots of apple juice through a special cup with a straw. After eating so well I went down for a long afternoon nap! Today I started on my increased feeding volume - I am getting 155 cc's per feeding instead of 138 cc's. Not a big jump and I tolerated it just fine!
I really like my doggies and you can see it above. I like to lean down and have Chili give me kisses. I also love Henry so much that I brought my lovie to him so he could play with it too!

Peyton Nicole Smith

Tuesday, March 17th, 2009

Happy St Patrick's Day! In honor of the holiday I had to wear some green of course - I didn't want to get pinched! Mid-morning I went to go see my GI. On the way there I fell asleep - when we hit the parking lot! Since we were a little early, Mommy and Lucille sat in the car and let me sleep in my car seat. Eventually they had to wake me up and I was excited to get out of the car. We checked in and sat in the waiting room. I was still a little sleepy and a bit shy - so for a few minutes I kept hiding my face in Mommy's shoulder because other people in the waiting room were trying to wave at me (so not my regular personality!) Eventually, though, I warmed up and was happy to run around the waiting area and dancing for everyone. Then I discovered the bathroom just down the hall and Mommy couldn't keep me out of there for anything - I am all about the potty! Finally we got called back! It had been several months since Dr Davies had seen me - at that point I was still getting feedings at night so a lot has changed! I was up to 18 lbs. 13 ozs. today. She said I was maintaining my growth curve but with a surgery coming up quickly she wants to make sure I have a little extra "cushion" so she wants my parents to increase my feeding volume by 10%. Then, my parents are going to start experimenting to see if they can get me off of my reflux medication. It's possible I have grown out of my reflux but until they stop giving it to me they won't know for sure. Dr Davies is going to refer me to an ENT she really likes locally as well as a pulmonologist. She wants to see me back in about six weeks - so she can check in on my growth before my surgery.
Peyton Nicole Smith

Monday, March 16, 2009

Monday, March 16th, 2009

I may look a little beat up but I am doing just fine! I am becoming a big fan of the sippy cup. Mommy takes the valve out so the water flows without having to suck on it - just tilt it back. This one's really good because the mouth piece is much longer than most of them so I can get it past my bottom teeth which are so far back. The only issue is getting the cup tipped back far enough that I can get it in my mouth. I have solved the problem but Mommy isn't really happy with how I do it. I just lay back on a pillow, the floor, the arm of the chair and then bring the cup to my mouth. That can result in some really big mouthfuls of water and a little too much water down the trach - good thing I have such a strong cough! My parents try to assist me in the use of the sippy cup but I am a big girl and insist on doing it myself as much as possible!
Peyton Nicole Smith

Sunday, March 15th, 2009

It was an eventful day at the Smith household! I decided to start my day early by waking up at 1 am. That's right - 1 am! Carol told Mommy that I sat up all of a sudden and then quickly laid back down. For the next three hours I would peek at her through the crib slats and play with my blankie. I didn't ever sit up again and eventually I fell back asleep. Mommy thought for sure I should sleep in after being awake so long - but right as Carol was getting ready to leave I woke up - right on schedule.

In the afternoon, I decided to give my parents a good scare. Normally, all the doors down the hallway are closed to the bedrooms and bathroom so I can wander and stay out of trouble. While Mommy was getting my feeding ready, Daddy headed outside with the dogs through the garage. So when I followed him down the hall, Mommy didn't worry too much. A minute or so later, Mommy went to check on me and found an empty hallway, all the doors closed and nobody to be found anywhere. Although it seemed strange, Mommy figured Daddy must have taken me outside with the dogs. A few minutes later when Daddy came back inside - without me - Mommy got a little worried. She asked him where I was and he said he didn't know. Mommy thought he was kidding - but he wasn't. So they both started searching. It didn't take long to find me. I had walked in the master bedroom (oops the door was left open) and then shut it behind me. Then I walked into the master bathroom and shut that door behind me as well. When Mommy found me, I was standing next to the tub signing "bath" and there were a few tears running down my cheeks. Although I can't open doors yet - my parents learned I have no trouble shutting them!

Just as my head was starting to heal, I fell and skinned my nose. As if that wasn't enough, when I was busy "twirling" I got dizzy and head butted the fridge. That's right - another goose egg and right in the same spot. You can see me in the video above showing off my bruise. As you can tell, it doesn't bother me too much as I was more interested in showing off my dancing then my owies!

Peyton Nicole Smith

Saturday, March 14, 2009

Saturday, March 14th, 2009

Does anyone happen to see any resemblance in the first picture between me and anyone else you know (Aunt Kristin hint - hint). I had a great day with Sarah while my parents were out and about running errands. We played, watched Signing Times and walked around the front yard together. I was super happy, though, when my parents came home and I got to spend some time playing with them before heading off to bed.
Peyton Nicole Smith

Friday, March 13, 2009

Friday, March 13th, 2009

Yes that is quite the shiner on my head! This is what comes from a girl who never learned to crawl - I have not developed good upper arm strength so when I fall forward - I generally don't stop myself with my hands. Thus the shiner. Just about the time one starts to fade away it seems like I fall again (or several times in the same spot) and the process starts all over again. Mommy is guessing that every school picture until I graduate I will have a bruise in the same spot!
Peyton Nicole Smith

Thursday, March 12th, 2009

I have figured out that my frozen watermelon is not the only thing in the freezer. It also has vanilla ice cream! I don't know the sign for ice cream yet so I have learned to stand by the fridge, point up and whine until my parents figure out what it is I want. I also insist on feeding it to myself - by finger or by spoon. It is a messy business but lots of fun for me. Since not everything makes it to my mouth my furry brothers seem to like it too!
Peyton Nicole Smith

Thursday, March 12, 2009

Wednesday, March 11th, 2009

Today was my very best feeding therapy session ever! I took the largest amount of volume my Mommy or Karen has ever seen - probably about 4 teaspoons. I also was perfectly content to use a spoon to feed myself or my finger - I was shoving it in! I also was willing to eat lots of types of foods - vanilla ice cream, chocolate pudding, crushed up cheetos, pureed mac & cheese.
Karen and my Mommy talked about the new speaking valve that Mommy is trying to order for me. I really don't like the Passy Muir valve and Mommy has heard good things about one called the Shikani-French valve (see the picture above) from adults who are trached. Hopefully we will get it in the next few weeks. I even "talked" a little for Karen by covering my trach with my finger. She was very impressed and really thinks I should start some speech therapy sessions soon. After such an exciting feeding session - it was off to a 3 hour nap.

Peyton Nicole Smith

Tuesday, March 10, 2009

Tuesday, March 10th, 2009

Is that me getting into trouble - of course! Despite not getting an afternoon nap, I was a pretty good girl today. Thank goodness Kiersten, my hard of hearing teacher brought me new Signing Time videos! My parents are so sick of the ones I have been borrowing and I am ready to learn some new signs.

Peyton Nicole Smith

Monday, March 9th, 2009

As seems to be the case lately, when I am having a therapy session if a word comes up that I know I will get distracted. So when Michael talks about playing ball rather then play with the balls he brought I want to get my own. Mommy let Michael know it's nothing specifically he is doing wrong - I do this with all my therapists! Now that I know the sign for "star" I am finding them all throughout the house. Mommy never even noticed most of them - but I am into details and I do. There have been times that Mommy thinks I'm crazy because she can't see the star that I do - but if she looks really close - they are always there. Can you find all the stars above?
Peyton Nicole Smith