Sunday, July 26, 2009

Sunday, July 26th, 2009

Today I was back to my normal self - my feedings were all normal and my mood was great. As my parents promised, I got to go to the park today to feed the ducks (and geese and birds and squirrels). We stopped by the store to get some saltine crackers (without the salt) and in 93+ degree heat we parked my stroller under some big trees for shade and spent a good hour going through half a loaf of bread and the box of crackers. To say there were a few birds around would be an understatement and they just kept coming (you can see the line of them making their way across the pond to get to us). When Mommy pulled out the crackers and gave me some to feed the ducks I surprised her and decided I wanted to eat them instead! Eventually, I gave a few up to the animals but I got a few bites for myself as well. There was one goose who insisted on standing really close and hissing at us but the rest of the ducks and geese were pretty friendly and willing to take crackers from our hands. I had so much fun and my parents promise to take me back again soon.
Peyton Nicole Smith

Saturday, July 25th, 2009

The morning started out a little shaky but by the end of the day I was feeling pretty good. Around 4 am I woke up and started crying. Carol left me alone to try to work it out but I continued crying for another half hour. She asked me if I wanted to get out of the crib and she would hold me but I shook my head no and laid back down. Eventually, I fell back to sleep and then woke up again at 6:30.
That is when Mommy noticed what she refers to affectionately as "the slime". I had drooled a little during the night but this was something completely unusual for me. It was a slime like substance that would eventually come dripping out of my mouth. My parents kept trying to get in there to suction it out but I wouldn't let them anywhere near my mouth. Mommy thinks all the slime in my mouth is probably why I started dry heaving when I woke up so she gave me some time awake before starting a regular feeding - at a very slow rate. It worked like a charm and once that was out of the way the next problem arose - constipation. My parents have learned not to let this one go on for long so we went right to a suppository. While it took some time to kick in my mood was not so good. I was whining and didn't want anyone holding me but then I produced a stinky and life was good again!
All that working on a diaper made me really sleepy so I went down for my afternoon nap a little early. When Lucille came at noon I was still asleep and continued to sleep for another hour. When I did wake up I was still tired so after a few minutes Lucille asked me if I wante to go back in my crib and I took her up on the offer. An hour later I woke up for good and I was in a much better mood! Lucille and I played and she gave me an early bath and soon enough Daddy and Mommy were back - and they had a surprise for me. Uncle Jeff had left the perfect present on the doorstep for me - a dolly I can take in the bath. Because I had already had a bath, Mommy let me get out the empty tub and sit in the it with my new dolly. Then I carried her around the house with me the rest of the night. When it came time for bed, I had two babies to love! Thanks Uncle Jeff!
Peyton Nicole Smith

Friday, July 24, 2009

Monday, July 20th - Friday, July 24th, 2009

It took longer then expected, but Mommy finally made it to Madison on Monday and Daddy and I were on our own again this week. I had a few more episodes of vomiting with Lucille during the week but other than that everything went smoothly. Daddy was kept busy taking such good care of me that he didn't have much time for pictures. Mommy got in really late last night so she didn't wake me but she was waiting for me when I woke up this morning. The day was off to a great start but then Mommy broke the news that it was time for my return visit to the dentist. I was just excited to get in the car to go somewhere. We were a little early so I got some time to play before Mommy and I went back to an exam room. Before I had a chance to protest too much, I got a shot in my leg but within seconds I started to feel a little strange and then I don't remember much after that so I'll tell you what Mommy told me.
After the shot took effect I was dead weight in Mommy's arms and she wasn't quite prepared for that - good thing she was holding on tight! It scared her a little to see me so out of it and she started crying but the anesthesiologist assured her I would be fine. Then she was back to the waiting room with Lucille while I went to the surgical room. My anesthesiologist was never able to get an IV going - yes, I was the first of his entire career! Instead, they had to give me shots in the muscle instead to control pain and keep me under. Once the dentist got a good look in my mouth he was pretty surprised by what he found. Apparently, it is not unusual for children to have teeth that are fused together but I have lots of them. - probably because my mouth was so small that when my teeth developed they fused together because there wasn't much room. The plan initially was to have three top teeth crowned and one extracted. Then a tooth on the bottom was going to need a filling. The first top tooth got crowned but even though it is the smallest crown they had it looks pretty huge in my tiny mouth (I will have to grow into it like a pair of shoes that are a size too big). When he started looking at the three other top teeth he realized they had erupted individually but they all shared a common root - the first time he has ever seen that in his practice. Because one of three teeth was so decayed he couldn't crown it so all three teeth had to be extracted. So now I have one really big crown and one really big hole where three teeth used to be (thus the goofy grin above!). The tooth that had a potential cavity ended up being okay - no cavity required. But I did end up getting two more crowns - a top and bottom molar on the left side. So here's the score:
3 crowns
3 extractions
The dentist came out to tell Mommy all of the above which she then relayed on to Daddy who needed to work today. Mommy and Lucille got to come back to see me where I was lying on a bed completely numb to the world. They kept reassuring Mommy that kids went home still out of it like me all the time but Mommy was still nervous strapping me into the car seat! It took almost another hour of being home before I started to wake up. Mommy knew I was lucid when I noticed the three balloons the office sent me home with. The next hour was challenging as I wasn't sure what was going on. I had no ability to sit up or stand without falling but I didn't want Mommy to hold me. So she held me in her lap against my will and I cried and fought her. Eventually the haze lifted and then I was in a great mood - the only problem was that I couldn't understand why Mommy wouldn't let me run around and play. Despite being "awake" I was in no shape to stand (or sit) unassisted. I would look up at my balloons and proceed to fall backwards or I would try to walk and fall over sideways. Mommy was sure wishing for a padded room at that poing (not sure if that was for her or for me though). It took hours before I was with it enough to walk on my own which made for a long day trying to keep me entertained without allowing me to leave Mommy's lap! By the end of the night not only was I running around the house but I was drinking soy milk and eating rice crackers - as if I hadn't just had serious dental work done a few hours earlier - pretty hard core!
Now that all the dental work has been done I just need to start going in for cleanings regularly. The dentist thinks cleanings every three months instead of every six months might help to prevent more of this in the future. Because my anesthesiologist doesn't believe anyone with my syndrome has ever had this extensive dental work outside of a hospital, he plans on submitting a case study to a medical journal. He promised to send Mommy a copy if it ever got published. Mommy dares to say this won't be the last time there will be a case study written about me - I am a pretty amazing kid if I do say so myself!

Peyton Nicole Smith

Sunday, July 19, 2009

Sunday, July 19th, 2009

It was supposed to be another quiet day with all the family together. That came to a screeching halt, though, shortly after my second feeding of the day. I went running down the hall after Mommy with the dogs close behind. When Daddy found me a few minutes later I had apparently thrown up some of my feeding and then slipped and fell in it landing on my back. When Mommy came out a few seconds after Daddy found me the boys were "cleaning" up after me. My parents think that I am too full from my feedings at times and then when I start running around with my full tummy it doesn't always stay where it should. I don't act sick and as soon as I get cleaned up I am back running again. The rest of the day my feedings stayed down so my parents felt pretty comfortable taking me to the grocery store to stock us up while Mommy is gone the next few days. I got a nice long bath tonight (boy did I need it) and then it was time for my trach change and off to bed. Since Mommy will be leaving before I wake up in the morning, she gave me lots of big kisses when she tucked me in for the night. I know she doesn't like leaving me but she'll be home really soon.

Peyton Nicole Smith

Saturday, July 18, 2009

Saturday, July 18th, 2009

When I woke up this morning Mommy was there just as Daddy had promised. I was happy to see her - it felt like she was gone forever! Despite her being gone so long, we were back to our normal weekend routine with Mommy and Daddy trading off time with me and each other as they tried to get caught up on errands and laundry. Mommy is leaving again early Monday morning so there is a lot to get done.

While Daddy was off running a few errands, Mommy and I had some alone time together. I had a normal feeding and then Mommy and I did a little rough housing. Just to make sure she was welcomed home the right way I proceeded to throw up - but at least this time it wasn't on her. Actually, I was playing in the kitchen drawers and well you can guess the rest. Instead of Mommy being upset she thought maybe this was a precursor to learning to throw up in the toilet (she can dream, right?). So besides throwing all the kitchen utensils in the dishwasher this was a pretty easy clean up - no need to change outfits!

My parents and I met Uncle Jeff at a steakhouse for dinner and I was a really good girl. I didn't want to sit in the high chair for long but ended up in the booth between my parents - usually just sitting quietly on their laps and drinking some water and Daddy's iced tea. We got home too late for me to get my bath in but Mommy promises I'll get to take a long bath tomorrow to make up for it.

Peyton Nicole Smith

Friday, July 17th, 2009

Don't let the jacket fool you - it is 108 here in Sacramento! To spend any time outside, Lucille has to take me to the park almost as soon as she gets here in the morning or else it gets too hot for me. In the afternoon we had a great music therapy appointment - me, Lucille and Spencer. In fact, Lucille says I am more focused when Mommy doesn't attend (don't worry, Mommy won't take it personally).

Speaking of Mommy, Daddy let me know she is coming home tonight. It will be really late so I won't get to see her until tomorrow morning. I can't wait!

Peyton Nicole Smith

Thursday, July 16th, 2009

Daddy is not one for taking lots of pictures but he has done a good job getting a few each day so Mommy can keep track of how I am doing. He's not much for blogging, though, so while Mommy is out of town a few days may pass before this gets updated.

Peyton Nicole Smith

Wednesday, July 15th, 2009

Here I am with the picture of Mommy and me above my crib so she is the last thing I see before I go to bed. With Mommy gone today, Lucille got to help with my feeding therapy with Karen. Karen was very sweet and sent Mommy the following email so she could keep up on what was happening while she was gone:

Great session with your little gal today!! I was proud of her, after initial refusals to try the lemon cream pudding....she eventually tasted trials off her finger, spoon, mixed with cookie crumbs AND licked it off a sucker! We ended the session with me cleaning her incisors with a Spiffie wipe! Hurrah! Hope things are going well for you. Relax and know Lucille is taking good care of your little peanut.

I am so lucky to have so many wonderful people taking care of me while Mommy is gone.

Peyton Nicole Smith

Tuesday, July 14th, 2009

It started to occur to me today that Mommy hasn't been around for awhile. Daddy got down the photo of her and I together and I carried it around with me today. Despite missing Mommy, I am having a good time during the day with Lucille and at night with Daddy. When Mommy calls to talk to us at night I am usually on his lap and he is reading a book to me. Although she is missing me too, she knows Daddy is doing a great job taking care of me.

Peyton Nicole Smith

Monday, July 13, 2009

Monday, July 13th, 2009

Because I am doing so well with my talking, Mommy ordered a new video for me before she left and it showed up today. Apparently, Daddy doesn't think it is as flashy as the Signing Times videos but I was fascinated by it. No matter what Daddy did to try to distract me (poke me, kiss me, twirl my hair) I just turned around and gave him dirty looks and then went back to watching my program. It is still to be seen if it will encourage me to vocalize more but at least for part of the afternoon it kept me entertained so Mommy thinks it was worth it!

Peyton Nicole Smith

Sunday, July 12th, 2009

The day had arrived and it was time for Mommy to fly to Wisconsin for training. She gave me a kiss before she left (around 4:30 am). Then Daddy was up with me at 6 am which is really early for him but he is handling it well (Mommy had the coffee pot all ready to go for him - he just had to hit the on button!) He took me for a walk this morning while I was getting a feeding and then Lucille came to stay with me for the afternoon. It gave Daddy a chance to run some errands and to catch up on some sleep - he is going to need it this week as he will be up until 10 to wait for the night nurse and then up at 6 to let the night nurse go.
In the evening, I talked a little to Mommy over the phone - making my animals sounds for her. I think she got a little choked up because she misses Daddy, the doggies and I all so much. We are doing just fine though so she doesn't need to worry a bit.
Peyton Nicole Smith

Saturday, July 11, 2009

Saturday, July 11th, 2009

With Mommy leaving town tomorrow for almost a week we had to get a few errands out of the way today but we still managed to have some fun. My parents took me back to Toys R Us to check out the play equipment. They are thinking of getting me a small slide to put in the house for my birthday. They also put me on a few trikes but I am still pretty small and was having a hard time reaching the pedals. They weren't able to escape empty handed though - I insisted on bringing a bouncy ball home with us.

We also stopped by Uncle Jeff's apartment now that he is all settled in. Since Daddy and I will probably go hang out while Mommy is gone, she wanted to check it out to make sure I wasn't able to get into too much trouble. Uncle Jeff is pretty good at kid proofing though so Mommy has nothing to worry about.

After an early trach change tonight, Mommy gave me some extra kisses since she will be gone when I wake up in the morning. I know she is going to miss me but with Daddy in charge she knows I am in good hands.

Peyton Nicole Smith

Friday, July 10, 2009

Friday, July 10th, 2009

It ended up being quite a busy day for me. I had a mid-morning appointment with Dr Miller. He is the anesthesiologist who works with my dentist. In the last few weeks he has been doing a lot of research on me - talking to my pediatrician, my cardiologist and several anesthesiologists who have worked on me in the past. Because of the trach he feels comfortable putting me under anesthesia for my dental work in the dental office instead of the hospital. He did want to meet me first so we went to the dental office and he stopped by in between surgeries. He checked out my veins and let Mommy know that the hardest part of the whole procedure may be finding a vein but he is willing to give it a shot - he hasn't had a case yet he couldn't get a vein but there's a first time for everything! So I am headed back on the 24th and Mommy will cross her fingers that my veins are in the mood to participate. This dental office thing isn't all that bad - I got sent home with a Disney princess sticker, a balloon and a sugar free sucker!
In the afternoon it was time for another music therapy appointment. I am really starting to warm up to Spencer and I even start strumming his guitar a few times during the session. I have really started vocalizing a lot in the last week or so - to the point that some sounds are pretty recognizable. In fact "up" comes through loud and clear now. My parents have been working with me on the animal sounds - "quack quack", "ruff ruff", "tweet tweet", etc. They still sound very similar but my parents have seen a lot of improvement in the last few days. I have even let my parents try out the Shikani speaking valve again. I keep thinking with the valve on I still need to cover my trach but I am figuring it out. Don't worry about the coughing at the end of the video - it's just me learning how to use my speaking valve.
Peyton Nicole Smith

Thursday, July 9th, 2009

Two sides of the same coin - the happy face and the sad face. It only takes a few seconds to go from one to the other - espescially when it is past my bedtime!
Peyton Nicole Smith

Thursday, July 9, 2009

Wednesday, July 8th, 2009

With Daddy working late this week Mommy and I are getting plenty of time alone together. To keep me on my schedule, Mommy is getting to be a pro at washing my hair in the bath tub. As long as I keep my chin up as instructed then my trach stays water free. Because my trach tie gets wet, Mommy is also getting better at changing the trach tie all by herself. This is a complicated little maneuver because I don't sit still for trach tie changes as much as I used to. Mommy would not have done any of these things with me by herself a year ago so I am pretty impressed. Mommy is really excited because she loves the smell of my hair all shampooed!
Peyton Nicole Smith

Wednesday, July 8, 2009

Tuesday, July 7th, 2009

When I wake up in the morning crying it is never a good sign and today was no exception. Within moments Mommy knew why when I vomited all over her and I. I continued down that path for almost an hour and when Daddy came out to give kisses before leaving for work I looked like I was on death's door. I was sitting on Mommy's lap being held up to keep from falling over and half-sleeping. When the doorbell rang a few moments later and Lucille came in the transformation was miraculous. I hopped off Mommy's lap and started running around the room because I was so excited to see her. (Did Mommy ever tell you I am a going to be an actress when I grow up?) Lucille slowly worked me back up to regular feedings and by the end of the day you never would have known I had been sick. Mommy swears this is what she gets for taking me out in public around other kids!

Peyton Nicole Smith

Monday, July 6, 2009

Monday, July 6th, 2009

It's gone by pretty fast, but it was definately time to remove the cast - there is a distinct smell coming from the cast that my parents are ready to be rid of. As soon as we walked into the cast room I had flashbacks and started to whine and eventually cry - long before anyone even touched me. It only took a few minutes to get the cast and the gauze off but I was crying huge tears the whole time and Mommy was trying her best to hold me down and keep me from throwing my arm around while the nurse was cutting. After all that work on the finger Mommy wanted to make sure we hung on to it for awhile. After a moment to catch my breath it was on to the next trauma of the day - the post op xray. Despite Mommy continuing to assure me nothing was going to hurt I was having none of it and the tears were flowing. Then it was back to the casting room to have Dr James check out her handiwork and we were finally on our way home.
The hand needed a good cleaning but I didn't want anyone touching it but me. Mommy promised me a nice long bath tonight and she delivered. I was so excited that I got into the bath with my toys long before it was time. Shortly after dinner Mommy got everything together and while I enjoyed splashing in the water for the first time in six weeks, Mommy tried to sneak in some cleaning of my hand and arm. I grew wise to her tricks, though, and Mommy wasn't able to clean it perfectly but it will have to do for now. Daddy will have to cut my fingernails while I am sleeping tonight. I will be wearing a split for the next few weeks while I am sleeping and for periods during the day. At this point I am just happy to have another hand for signing what I want to my parents!

Peyton Nicole Smith

Sunday, July 5, 2009

Sunday, July 5th, 2009

5 am this morning was the handoff - Mommy got the coffee brewing for her and sent Daddy on to bed so he could sleep a little on a mattress instead of the floor. I decided to be easy on Mommy this morning and slept in until almost 7 am. Daddy got up around 9:30 and while he chased me around the house with my feeding bag Mommy got some breakfast going.
It was the third and final day for Daddy to help Jeff with his move. It was supposed to be a quick trip to Folsom and back with the breakable stuff but when Daddy went to start his car the battery was dead. Thus began a two hour adventure of going to get a battery and then realizing all of his tools were at Jeff's so then off to buy tools. He finally got on the way to Folsom around 1:30. I was down for a nap and as Mommy had promised once I was awake she took me to Toys R Us. Mommy said it was time to start thinking about my 2nd birthday and she wanted some ideas and needed my help. I wanted to take every doll home with me but Mommy convinced me to leave them at the store and she would buy my dolly a "magic" baby bottle that "emptied" when it was turned upside down. I also got a book with flaps that lift up (my favorite book is still my Dora Christmas book with flaps although I have torn off most of the flaps by now), another DVD and some pink tennis balls (I would not leave the store without some type of ball so Mommy settled on the pink ones). I'm not sure if Mommy really figured out what to get me for my birthday but we had a lot of fun looking around together. BTW - the baby bottle was a hit - I was "drinking" it as soon as Mommy got it out of the package. Every now and again I will let my dolly have a swig but it is most definately my bottle!
Peyton Nicole Smith

Saturday, July 4th, 2009

Happy 4th of July! So my 4th of July involved none of the traditional things - fireworks, BBQ or a parade. Daddy was still helping Uncle Jeff with moving and it was still pretty hot so Mommy and I stuck close to home today. Even so, Mommy had to make sure I was festive with the cute red, white and blue shorts Aunt Kristin got me and some red and blue hair ties to match!
When Daddy got home early evening it had cooled down enough that we could go to the local playground. I loved the swing and slide but the best part is when Daddy put a plastic bag on my cast and let me get in the water fountain! My parents figured that even if it got a little wet it was coming off Monday morning so no big deal.
My night nurse took the night off so Daddy slept out in the front room with me while Mommy took the dogs to bed with her. She was concerned they would be all upset about the fireworks going off in the neighborhood (my parents have a messy story about Henry's first 4th of July with them) but they fell right to sleep. The only time they even stirred was when Chili heard Daddy coming down the hall at 3 in the morning and started barking!
Peyton Nicole Smith

Saturday, July 4, 2009

Friday, July 3rd, 2009

While my parents were climbing 3 flights of stairs in 100 degree heat to help move "Uncle" Jeff, I was content playing with Lucille in the air conditioned house while watching my favorite videos. Daddy and Uncle Jeff continued tomove items after Mommy had to leave so Lucille could go home at 4. Daddy finally made it home around 8:30 and because the dogs started barking and woke me up - I at least got a kiss from him. Uncle Jeff and Daddy will be back at it a little tomorrow and Sunday as well but the worst part is over and Uncle Jeff has learned a few valuable lessons - don't forget the dolly, 3rd floor apartments come with a lot of stairs to climb and movers are worth their weight in gold. Maybe next time he will heed these warnings!
Peyton Nicole Smith

Thursday, July 2, 2009

Thursday, July 2nd, 2009

Pouring liquid from one cup to another is my favorite thing to do right now. It's even better when it's something sticky like apple juice! So today when I spilled Mommy gave me a paper towel so I could clean it up myself and then had me put it in the garbage can when I was done. A few minutes later she looked over and I was fishing something out of the garbage can - it was the paper towel. I had another spill to clean up and was going to do it all by myself.

Not long after, I scared Mommy a little. While eating one of my crackers, I must have swallowed it wrong because all of a sudden I started coughing, gagging and eventually throwing up and I am sure you can guess that I wasn't the only one who had to change their outfit! After getting me all cleaned up I was ready to eat crackers again but Mommy decided her heart couldn't take another round.

Peyton Nicole Smith

Wednesday, July 1st, 2009

It's still too hot outside to spend much time there but inside my parents have been busy organizing all my old toys, clothes and other baby items. Some they sold to a local used children's store, other's they are donating to the Child Life program at UC Davis and still others are being given to the future granddaughter or my nurse, Lucille. It's amazing how much stuff I have collected over the last two years! Once all the baby stuff is gone, then it is on to my parent's stuff - they want to start cleaning out their closets as well. It's a pretty good sign that if something has been in a box since they moved into the house several years ago and it has yet to be opened - they probably don't need it!

Peyton Nicole Smith