Saturday, May 31, 2008

Friday, May 30th, 2008

What an exciting day! Lot's of good news today.
First, the hospital called and my surgery is scheduled for 8:30 on Monday morning. My parents need to be there at 7 am. Mommy is happy we don't have to wait around all day for surgery and we'll get it done bright and early Monday morning. By mid-morning I should be out of surgery and in recovery. Mommy is going to bring her laptop so she can hopefully get an internet connection and update the blog to keep you all informed of my progress.
In the afternoon, Karen, my OT came by to work with me. She noticed right away that my range of motion had improved and my sitting balance is much better then the last time she was here. She was very impressed!
Finally, and this is the best news of all, my cousin Jackson was born today! He is just one ounce smaller than I was when I was born and the same length. We could be twinners! He is awfully cute. Mommy wishes she could be there to give him hugs and kisses but someday soon she hopes to come visit.
Henry is doing well today. He slept most of the day - probably because of the muscle relaxers he is taking. Chili was very glad to have him home. Since no more stairs or jumping the doggies are officially kicked out of my parents bed and in beds on the floor of their room now. There was some whining and crying but eventually everyone got to sleep tonight.
Peyton Nicole Smith

Friday, May 30, 2008

Thursday, May 29th, 2008

So the pouring has continued!

Ronald McDonald called back and said there is no room at the inn for us - so my parents will be staying in a hotel while I am having surgery. Bummer : (

In the afternoon, I was still on my feeding. So as Mommy usually does, she carries me and rolls the IV pole around with us as she gets some things done around the house. As she was putting my clothes away in the dresser, my extension set caught on the drawer and tugged it a little. When Mommy looked down the extension set had come undone from my button. No big deal. Then Mommy noticed something else - my button had popped out!!!! Since Mommy was all alone she didn't have any choice but to do it herself. Apparently, the pressure was enough to pull the button out with the balloon still full of water. Mommy isn't even sure how it was able to pull through since the balloon is bigger than the stoma site. I didn't cry or anything, though. Mommy put me in my crib and drained the balloon, put the balloon back inside of me and then filled it back up with water. It was a quick fix and I only whimpered a little because I didn't feel like being in my crib. Mommy was pretty shaky afterwards and called my Daddy to let him know what happened. Good thing Mommy was the one who put my button in last time at the dr's office so she had some practice.

On a happy note, though, Henry was finally able to come home today. He seemed happy to be home and Chili was ecstatic for his return. Henry is on strict bed rest though, so no playing, running or jumping. My parents will have to keep an eye on the two of them so they don't roughhouse at all.

While Daddy was at the vet breaking Henry out, Mommy spent some time playing with Chili and I. As you can, I am taking quite an interest in the TV as of late. Mommy can't figure out why I pay attention sometimes and not others but she thinks it has something to do with the color of the screen not necessarily the sound.

Later, she let me spend some time "airing out" on the blanket. I peed a little a few times but I had a great time being naked. The only problem is, I like to explore my button since it's the only time I ever get to play with it.

My night nurse wasn't able to work tonight so Mommy got to be my night nurse tonight. She's hoping I sleep all night so she can get some sleep since she has to work tomorrow!

Peyton Nicole Smith

Thursday, May 29, 2008

Wednesday, December 28th, 2008

What a day! To begin with, it was my preop appointment at Lucile Packard in prep for my surgery on Monday. Mommy got up and started getting everything together to leave about 8 am. When Daddy got the boys up for breakfast, Henry was crying and didn't want to be touched. He also had a hard time walking. The last few days he hasn't been as active but this was a dramatic difference. My parents felt sick at the thought of leaving him home all day while they were gone when he was in so much pain. Mommy made a quick call to the vet, explained the situation, and they agreed to let my parents drop him off for treatment. My parents rushed around getting the car loaded up and headed straight to the vet. They got us into a room immeadiately and the doctor came right in. He was pretty sure that there were some problems with Henry's back since that is really common in doxies. My parents left Henry in capable hands and we got back in the car to head to Palo Alto with Mommy in tears.

I was able to nap for 20 minutes or so on the way down, otherwise I just played with my toys and was in a pretty good mood. When we got to Palo Alto at 11 we had to check in and then wait to be seen by the doctor. While we waited, I checked out all the kids in the waiting room. They called us back and first got a weight. Mommy was happy to see that without clothes I was up to 14 lbs 8 ozs. The 24 kcal seems to be working. Then we waited in the room for my doctor. He answered some questions for my parents and then it was time for my preop pictures. Now, my parents have me trained really well, when I see a camera I turn towards it and smile. Unfortunately, the doctor wanted some shots from the side and I wasn't cooperating because I kept turning to look at the camera! After a few minutes he got the pictures he needed. Our last stop before heading home was to get blood drawn. It took almost 45 minutes before they got us in and by then I was long past nap time. Daddy held me while they tried to get some blood. Although my parents warned them I was a hard stick, I don't think they believed them until they actually had to try and get the blood. They decided it was going to be too difficult so they poked my finger instead and "milked" it for quite some time to get enough blood for testing. After crying for 15+ minutes I was exhausted. So when my parents put me in my car seat and turned on my feeding I zonked out immeadiately.

Unfortunately, I don't sleep so well in the car and after about 15 minutes I was awake and crying. The next 2 1/2 hours I would alternate between sleeping for a few minutes at a time followed by long stretches of waking up and crying. It was a long ride for all of us!

We made it home by about 4 pm and a little after 5 pm, we got back in the car to go visit Henry at the vet. We got to take him outside and let him walk around a little. The doctor told my parents that two of his discs are calcified. They haven't ruptured yet so no surgery for now, but Henry will have to be on strict bed rest for 4-6 weeks. No running, no jumping, no playing. He will have to be confined to a room and not allowed to go up and down stairs and only taken out to go to the bathroom a few times a day. Since the boys were supposed to be boarded next week my parents aren't sure if Henry can go now. They will have to check with the doctor and the boarding facility to see what is best for Henry's recovery. My parents feel very lucky that it wasn't worse and that Henry should fully recover, although the vet warned them that he may have this happen again in the future. One in four doxies have back problems so they will have to be careful with Chili as well.

Daddy says when it rains it pours - and right now I guess it is pouring!

Peyton Nicole Smith

Tuesday, May 27th, 2008

Here are my new signs for the next few weeks - Family, Please, Want, Hair and Beautiful.

Today I am nine months old! Just a few more days until surgery. My parents are just hoping to keep me healthy until then.

Peyton Nicole Smith

Monday, May 26, 2008

Monday, May 26th, 2008

It was a nice enough day today, that Mommy finally got a chance to mow the lawn. Now Daddy doesn't really like Mommy to mow the lawn, he thinks it sends the wrong message to the neighbors but she really likes to do it. So Daddy brought me and my feeding pump out to the front yard and we sat in a chair and watched her. Then, it was time to mow the backyard. My Daddy and I sat in the Lazy Boy with my brothers right next to the sliding glass door. Mommy would wave at me each time she would pass by. Once it was all cut, Mommy let me come stand out on the grass in my bare feet. It was all prickly so I didn't want to stand on it long, but I did like sitting out on the grass watching the birds and bees fly by.
Michael, my PT, stopped by for a visit at 1. I had just woken up from a nap so I was in a really good mood. He said that my balancing skills while sitting are age appropriate but I am lagging a few months behind in my pre-crawling skills. He isn't too worried, though, and thinks I will catch up in time.
Hope everyone had a nice Memorial Day weekend!

Peyton Nicole Smith

Sunday, May 25th, 2008

It was another windy day in Elk Grove. Although I went outside for a little while in the afternoon, I was wrapped up in a blanket to keep warm so it wasn't much fun. My brother, Henry was acting kind of sick so my parents are watching him closely to decide if he needs to go to the vet. Happy birthday to my Grandma Mower!

Peyton Nicole Smith

Saturday, May 24, 2008

Saturday, May 24th, 2008

It rained last night and was rainy and overcast today so we
didn't get outside until after dinner. Once my parents strapped
me in the stroller, though, I was so happy to get outside. I got
all bundled up and had a pacifier to keep me entertained. The
whole family had a nice walk around the neighborhood.
By the way, I have my first official "boo-boo". Last night,
the whole family was sitting on the floor playing together.
When my parents looked up at the TV for a moment, I leaned
over for a toy, lost my balance, and fell forward hitting my face
on a toy. You can see my "boo-boo" under my right eye in the
picture above.
Peyton Nicole Smith

Friday, May 23rd, 2008

When I woke up this morning, Marianne got me ready for the day. Yesterday, she bought me new hair bows and a new summer dress. She said it was just so cute and she thought of me so she couldn't pass it up. She put my hair up in pigtails for my Shriner's appointment today.

When Mommy came out to see me she noticed right away that I was really warm to the touch. She took several temperatures and came up with all sorts of readings - 99.8, 100.5, 97.9. I usually run about 97.2-97.9 so she wasn't sure what to make of all the different readings. She decided as a last resort to get a rectal temp (not fun) since it is the most accurate. That came in normally, but I was still really hot to the touch so Mommy gave me some grape Tylenol. I was grumpy most of the morning but eventually the Tylenol kicked in and I wasn't so hot anymore. I went down for a nap with Lucille and after 2 1/2 hours my Mommy had to wake me up to go to my Shriner's appointment.

The plan was to see my hand surgeon at 1 pm, the foot surgeon at 2:30 and hopefully get an evaluation by the anesthesiologist in between. We got right in to see Dr. James but when Mommy explained the proposed surgery schedule for my jaw this summer, Dr. James decided seeing the anesthesiologist was unnecessary. Basically, by the time I would come in for hand surgery, many things may have changed. My jaw would be distracted and I may have already been decannulated. Since Dr. James didn't want me to have to wait around until 2:30 to see Dr. Popejoy, she looked at my feet and said for the time being not to do anything special. I should be fine to walk without any orthotics. Dr. James thinks the anesthesiologist may not want to put me under for the hand surgery if I have been decannulated since my airway will probably still be pretty small. Instead, he would probably want to wait to do my hand surgeries when I am older - around 4. So Dr. James would like Mommy to call her after my jaw has been distracted but before the decannulation. If I pass all the tests to get my trach removed, Dr. James would like to try to squeeze in my hand surgeries before the trach removal so I don't have to wait until I am older. My right hand would be an outpatient procedure and my left hand would be an over night stay. Normally, the would do them separately since both arms would be casted for 4-6 weeks. Since I am such a special case, they would probably do both at once so that I don't have to put off my trach removal. Mommy knows it takes several months to get scheduled for surgery so she asked Dr. James how that would work out. Dr. James said that she would cancel another child's surgery even though they may have been waiting several months in order to fit mine in. At this point, we'll just have to wait and see what happens, but it could make for a very exciting summer!

After a lot of phone calls to the nursing agency today, my Daddy talked them into letting Marianne work tonight. My parents have been my Friday night nurse for three months now. The agency is having a hard time finding anyone to work the shift but Marianne has wanted the extra hours. Although the agency has only agreed to this Friday night for now, it is a start.

When Marianne came at 11, she told Mommy how much she likes our family and we are so great to work for. She said many times she feels she is just working for the paycheck to pay the bills but since taking care of me, she has really begun to enjoy nursing again. She said I have put the spark back in her nursing career. She told Mommy I have given her direction in her life and she now wants to go back to get her RN and wants to work in the NICU with babies like me. Mommy thought that was so sweet. As Mommy told Daddy, "Just one more person whose life has been changed by Peyton."

Peyton Nicole Smith

Friday, May 23, 2008

Thursday, May 22nd, 2008

Today was all about blue food coloring. Karen will be feeding therapist. She called today to schedule my first appointment with her. It will be June 12th, the week after my surgery. Mommy thought that I needed to complete a swallow study before the feeding therapist wanted to see me but Karen explained that wasn't the case. Actually, for an optimal swallow study I have to be able to eat something by spoon so if I am not used to doing that the swallow study results may not be as good. So, Karen is going to start coming out to work with me so I can be referred on later for the swallow study. Mommy gave her my history of oral feedings (not much in the past but I am very willing now) and explained that she thinks I am aspirating on my feedings. Karen also mentioned the blue dye test - where you add blue food coloring to the feeding and if blue shows up in the trach then I am aspirating. Since aspiration can lead to pneumonia, Mommy had decided a few days ago not to do the test at home prior to the surgery so as not to risk it being cancelled. Karen explained that Mommy could just take a tiny bit of blue food coloring and put it on my tongue without giving me food or juice and we could first test if I am aspirating my secretions. Mommy loves experimenting, so after she got off the phone with Karen, she had me suck on a q tip with blue food coloring. Initially, I drooled a lot of blue but over the next few hours whenever I needed suctioning - it was blue. So now my parents know for sure that I am aspirating and Karen will have a starting point to work with when she comes to visit.

After the excitement of the blue food coloring, I spent time on the floor playing with my brothers. Then, I decided to roll around the floor to get to the toys I wanted. I am not in the mood to crawl so rolling gets me where I need to go.

I decided to play a trick on Daddy tonight after I went to bed. When he wasn't looking I started playing with my feeding tube and disconnected the extension from the feeding bag. When Daddy found out (Marianne had just shown up), I was soaked with milk as was my bed. I don't think he thought the trick was that funny. Oops!

Peyton Nicole Smith

Thursday, May 22, 2008

Wednesday, May 21st, 2008

It was a very windy day today. In the evenings before my bath, my parents like to take me out front and let me sit on the grass and watch the world around me. I like the birds and the cars the most. My hair was blowing wildly in the wind tonight but it didn't bother me at all.
Inside, we had a family turn taking activity. First Daddy would bang on something then Mommy would and then it was my turn. I am getting very good at listening and then taking my turn. Maybe we should start the Smith family band!
By the way, that isn't a new beauty mark on my cheek. A few days ago my parents put silver nitrate on some granulation tissue at my trach site. It turns the skin gray and then eventually kills it. Sometimes, the residue from the nitrate migrates (although my parents have never figured out how exactly) and I got a little on my cheek and a little on my chin. Daddy says all the prettiest girls have beauty marks so I should live it up.
Daddy likes to sing to me made up songs. My favorite is sung to the tune of "I love rock and roll, put another dime in the jukebox baby" but my Daddy's words are "I love P Nicole, even with no chin she's still my baby". My parents try to keep things light, after all if you can't find humor in some of this it could get very stressful!
Peyton Nicole Smith

Tuesday, May 20, 2008

Tuesday, May 20th, 2008

The count down to my surgery has begun - just two weeks to go! Everyone is getting excited - family, friends, nurses, therapists and teachers. Today was Terry's last visit with me until after my surgery. Since it is summer break I won't probably see her again until late June. She brought me lots of fun toys to tide me over until she comes back. There was a big piano, a vibrating elephant to chew on, little plastic Elmo dolls and red hair rollers. She has lots of great ideas of how to play with me to teach me all the things I need to know. For example, one developmental milestone is imitation. Terry would bang something on my tray then Mommy would bang something on the tray and then it was my turn. I watched and listened really carefully and when Mommy and Terry would stop banging then it was my turn to bang whatever I was holding at the time. It was a lot of fun! I am very good at what they call "turn taking". I am also becoming a very polite little girl. Most of the time when Mommy asks if she can have whatever I am holding I will give it to her so she can play with it too. If it is a brand new toy and I haven't had a lot of time to play with it I don't always share - but most of the time. I am going to try to learn lots of new tricks between now and Terry's next visit so I can show her what a big girl I am!

Peyton Nicole Smith

Monday, May 19, 2008

Monday, May 19th, 2008

Today was my follow up with my GI, Dr Davies. It has been three weeks since I was there last with all the problems with throwing up. Since the switch to the soy formula - 20 cal, all the throwing up has stopped. Minus teething and a bout of separation anxiety I have been doing really well. So Mommy was surprised at my weigh in that I had dropped 10 ounces! Now I am down to 14 lbs 2 ozs. I have never been on "straight" formula - it has always been increased in calories to 24 cal (and briefly to 27 cal). So Dr Davies recommended that I go back to 24 cal on the soy formula to try to bulk up a little in the two weeks before my surgery. Mommy talked with her about moving me back to bolus feeds at some point. Dr Davies scheduled another appointment on 6/30 to see how I am doing on the higher calorie soy formula and post surgery and then come up with a plan to try bolus feeds again. Now that I am older everyone is hopeful that I will have better luck with the bolus feeds. Dr Davies also said it would be good to talk to my surgeon about my secretions from eating orally - she is also suspicious that it is an aspiration issue. She thinks it best to hold off on any more oral feedings until there is a swallow study. She doesn't want to risk pneumonia or infection - there will be plenty of time for me to be introduced back to juice and baby food orally. The fact that I am so interested in oral feedings is a good sign that I will be intrested later, too.

I was such a good girl in the car on the way to the appointment and back home. I really like car rides. I fell asleep half way home without a fight and after waking up briefly when we got home I was back to sleep pretty quickly for a 2 hour nap.

In the evening I was pretty moody again, though. Mommy decided to try another real bath with me in the sink but I wanted nothing to do with it tonight. No amount of toys was making it enjoyable for me. So my parents wrapped me up in my cute towel and took me outside in the back yard. Daddy turned on the sprinklers to hit a dry patch and Mommy let me get a little ways into the sprinkler water so I could feel it on arms and face. Even though I didn't really like the bath, the sprinklers seemed kind of fun. When it is warmer Mommy is going to put me in my bikini and run through them with me.

Peyton Nicole Smith

Sunday, May 18, 2008

Sunday, May 18th, 2008

After a late nap last night and my bath it took me until almost 10 pm to fall asleep - right as Lucille was showing up for her shift. As if on cue, as soon as Mommy walked out this morning to relieve Lucille I woke up. Lucille said I had slept all night long. More often than not I don't wake up anymore at night and sleep for 8-9 hours straight.

It was a restful day at home for me and my family. My parents tried to introduce a sippy cup to me with some juice in it. It is a new skill for me so I don't quite have it down yet but they will keep trying. Towards the end of the day I spent some quality time with my pacifier. Although Mommy knows that most parents are trying to wean babies off pacifiers at this stage I never really liked pacifiers until now. I still don't suck them - but now that I have teeth I love to chew them. I spent about 30 minutes working on this one tonight before it was time for my trach change. I am starting to get a little granulation tissue around my trach stoma site so my parents will try to work on that a little tomorrow night. Goodnight!

Peyton Nicole Smith

Saturday, May 17, 2008

Saturday, May 17th, 2008

I am happy to report (as is Mommy since she was my night nurse) that I had a great night last night. Although it took me over an hour to fall asleep, I slept from about 9:30 to 5:30. My pulse off alarm didn't go off once! Mommy only had to get up a few times to add water and drain my trach mist machine and to change my feeding.

Once I was awake bright and early, Mommy decided she would try pigtails with me. Since I don't sit still for long periods of time it is not a professional job but it is still pretty cute I think. Daddy really thinks I am a pigtail kind of girl and I think I agree. Now that my hair has grown out a little more my parents finally have some hairstyle options!

Today my parents got to go spend some quality time together while Sarah watched me. They went to lunch and they went and got Daddy some summer clothes. It was another scorcher today. Although my brother Henry loves to sunbathe even he won't stay out too long.

My parents got some information on my upcoming surgery. I have a preop visit on 5/28. They are supposed to get a call on the Friday before my surgery, 5/30 to let them know what time my surgery will be on 6/2. Then, they will need to report to the hospital 1 1/2 hours before the surgery. Since most surgeries tend to be pretty early in the morning, my parents will most likely spend Sunday night in Palo Alto rather then trying to drive there on Monday morning. It will just depend on what time surgery is actually scheduled for. The date is coming fast and we are getting very excited. My parents goal now is just to keep me from getting sick so surgery doesn't have to be cancelled at the last minute. Wish us luck!
Since I am sitting up so well on my own, my parents decided to try a real bath with me for the first time. The easiest way to bathe me was in the kitchen sink. I was definately wary of so much water. Once my parents added a few toys I warmed up a little. Mommy doesn't want me afraid of the water like her so they are going to keep trying.

Peyton Nicole Smith

Friday, May 16th, 2008

It's summer here - been 100 or more the last few days so Mommy is starting to pull out my 9 month clothes since they are mostly short sleeved and sleeveless. The tops are still a little big on me but they are really cute.

My other top tooth is really close to breaking through - not much longer - I am guessing it will happen this weekend. Now that I have teeth and am actually starting to chew on everything - pacifiers, toys, my g tube extension set tubing - my parents are going to have to keep a closer eye on me. Right now I can only get my top tooth working really well but as soon as I get my jaw distraction and my top and bottom jaws are more aligned all bets are off!

Peyton Nicole Smith

Friday, May 16, 2008

Thursday, May 15th, 2008

Mommy decided to try to feed me some juice this morning by syringe. It was only .5 cc's or so, but I loved it! I kept coming back for more. Later, when Daddy got home from work, he gave me some, too. Although I initially make a funny face, I start getting excited and want more so my parents figure I must like it. Unfortunately, all the excitement causes lots of secretions and therefore lots of suctioning, but my parents are just happy to see me enjoying something by mouth so much. They hope that means that in the future when my jaw has been distracted and maybe my trach has been removed learning to eat by mouth won't be so difficult.

Peyton Nicole Smith

Thursday, May 15, 2008

Wednesday, May 14th, 2008

When you are as short as I am, a ride on Daddy's shoulders is pretty cool - after all, I am probably 6'5''! Earlier in the day, I helped Mommy in her office while she opened a few emails from work. She gives me a highlighter and that keeps me entertained for quite some time.
I spent some time this morning and this evening wearing my speaking valve - probably about 2 1/2 hours in total and did really well. Mommy is going to try to continue increasing my time on it just like she did with my HME when I first came home from the hospital. The more I am wearing my speaking valve the more opportunity I have to develop my voice. Even if I get my trach out this summer, it's good practice.
Peyton Nicole Smith