Wednesday, October 31, 2007

Wednesday, October 31st 2007

Happy Halloween!

In honor of the day I got dressed up as a pumpkin. Let's just say the outfit was a little too big for me! I was feeling a little better this evening so while I was in a good mood Mommy dressed me up. Unfortunately, Daddy was still at work and didn't get to see me in my costume but Mommy took lots of pictures.

Peyton Nicole Smith

Tuesday, October 30th, 2007

I had my pediatrician's appointment today. With all of my clothes off I weighed in at 8 lbs 2 ozs. I guess I am in the 3rd percentile on my weight but my doctor is not worried - she said I was in the 3rd pecentile last visit so that is a good sign that I am gaining weight steadily. The doctor said I am doing well and she wants me back in a month just to make sure I am still on track for my weight gain. After she walked out, a nurse walked in and gave me three shots - two in my left thigh and one in my right. You can see my band-aid in the picture above. That hurt! I cried for a minute or two but calmed down pretty quickly. Mommy gave me liquid Tylenol a few times throughout the day and evening since my legs were so sore - I just couldn't kick like I normally do without it hurting.

Mommy had some problems with the feeding pump for my 5 pm feeding and it gave me my entire feeding in 30 minutes instead of an hour. Mommy only realized it when the feeding ended at 5:30 instead of 6:00. She was on the phone with Daddy at the time and got all worried that I might explode! Daddy said the worst that would happen is I might spit some of it up but no worries - I slept through the entire feeding and the next several hours.

All the excitement must have worn me out because I slept for my parents the entire evening. They had to wake me up to do my bath and trach tie change. Normally I am really happy most of the time but they didn't get many smiles out of me today. Hopefully, tomorrow will be a better day.

Peyton Nicole Smith

Tuesday, October 30, 2007

Monday, October 29th, 2007

Wow, this day was just jam packed with stuff! First of all, Mommy got a good scare when we lost power in the house. It only lasted a few minutes but it put Mommy's emergency plan to the test. She had the phone number posted in several places to the local electric company so she could report the outage but didn't have the account number so she added that now too. Hopefully, that won't happen again any time in the near future.
A few minutes later both Wendy's from Alta Regional came by to do my evaluation. They had me take a few tests. I passed some and failed others but they said not to worry - they are going to try to help me so I can pass the tests in the future. They are going to send out a physical therapist so Mommy and Daddy learn how to play with me in ways that will help develop appropriately.
Daddy came home early today so we could all go to the doctor's office together. You can see him holding me in the waiting room above. I didn't get my 11 or 2 pm feedings and I was hungry but I was being such a good girl while we waited for the doctor. I got lots of comments about my pretty eyes and all that hair!
First I got weighed. They let me keep my clothes on and I weighed in at a whopping 8 lbs 6 ozs! I have another doctor's appointment tomorrow and we'll see how much I weigh with my clothes off! Then, they put me on the table so the doctor's could take a good look at me. I was smiling and happy up until the point that they reached over and ripped out my g tube! I say ripped because they weren't too gentle about it and they didn't even numb it first! Let's just say I was not a happy girl after that. There was a little blood so Mommy couldn't watch but Daddy held my hand to try to comfort me as they put the Mic-KEY button in. Daddy rocked me for a few minutes until I calmed down and then it was time for the next bad thing to happen to me. What my parents thought was an infection around my g tube was actually called granulation tissue. It was kind of tender and getting bigger and it isn't good to have it hanging around. So the doctors pulled out silver nitrate sticks and "painted" the tissue which will help to make it go away. Unfortunately, it hurts because it is burning the skin. That got me crying all over again! This time Mommy rocked me and within a few minutes I settled down and fell asleep. Needless to say I wasn't in the mood to smile at the doctors after that. Because there was so much granulation tissue they want to see me back in a few weeks to make sure it is going away. They sent my parents home with more silver nitrate sticks and some steroid cream to use over the next few weeks. Then, in three months they will change out the button again and teach my parents so they can do it in the future.
As you can imagine I was pretty worn out by that point so I slept all the way home. As soon as they got me home they started my feeding and Mommy rocked me. It took just a little while and I was back to sleep - and I slept - and slept - and slept. I basically slept from the time we got home (around 3 pm) until 8 pm when my parents did my nightly bath. Then I went back to sleep until 11 pm when Mimi showed up. And then I slept all night too - waking up at my normal 5 am. Getting a button is exhausting!
Peyton Nicole Smith

Monday, October 29, 2007

Saturday, October 27th & Sunday, October 28th

It was a nice, lazy weekend at home. On Saturday, my Daddy moved some things around in my crib and got the Fisher Price aquarium set up for me. My parents got a pleasant surprise when they discovered that it can put me to sleep within just a few minutes. Since I won't take a pacifier, this is huge! Previously, the only thing they could do to get me to sleep was to rock me or pat my back. Now they have another option. It worked several times throughout the weekend.

Daddy also did minor surgery on the Build-A-Bear bear they had made for me before I was born. Now, she has a trach just like me! Instead of the velcro trach tie that I have, though, she has some pretty pink ribbon holding hers on.

On Sunday, everything was going fine until my 2 pm feeding. Then, I spit up a little after my feeding. Daddy and Mommy cleaned me up and since it was a nice day decided to take me out in my stroller. They got two houses away and I spit up again. They rushed me back home, cleaned me up and then Mommy settled down to rock me. This time I spit up all over me and Mommy. So, three outfits later, I finally fell asleep. Daddy doesn't get rattled much but Mommy was all stressed because she is so afraid it will go down my trach and into my lungs.

Speaking of trachs, Mommy and Daddy changed my trach again tonight. They are still nervous but are getting to be old pros at it now. They try to be very organized and have everything within reach just in case there was an emergency (smaller size trach, trach bag, cell phone to call 911). I know that as soon as they are done each Sunday they breathe a huge sigh of relief that they have another week before they have to do it again. Since they started using the sponges underneath my trach and changing them every day the site keeps much cleaner. They also found out that if they cut the end of the trach ties at an angle they slide into the hole in the trach much easier. Like I said, they are getting to be old pros. Believe me, I am glad they are. The faster they change my trach the happier I am!

Peyton Nicole Smith

Saturday, October 27, 2007

Friday, October 26th, 2007

Mommy and Daddy had a pretty good night with me tonight. I really enjoy my sponge baths now and up until they change my trach tie I am in a good mood and smile a lot. Mommy has started increasing my feedings even though she hasn't been back to the pediatrician with me yet. She wants to make sure I don't stop making progress with my weight gain while we are waiting to get in to see the doctor. Aunt Jan ran the numbers when she was here so Mommy had some idea of what to move the feedings to. I am up to 75 cc's an hour during my daily feedings - I am taking a lot now! Mommy is going to move me up to 80 cc's on Monday and then my appointment with my pediatrician is on Tuesday.

There was a little excitement this afternoon. Right after my feeding Mommy decided to change out my g tube dressings. While she was doing that, Lucille started to change the bedding on my crib. Once Mommy was done, she put me in my vibrating chair and suddenly I was spitting up all over the place. In the midst of this Mommy's work called for a conference call. She was trying to suction me and talk on the phone at the same time - not a good combo! Lesson learned - no vibrating chairs or pushing on my tummy right after a feeding!

Friday, October 26, 2007

Thursday, October 25th, 2007

Call off the dogs! My Aunt Kristin was able to find Chili's favorite chew toy and is sending a couple of them so we are set for a while. Thanks Aunt Kristin!

It was a pretty quiet day yesterday. My Mommy has been busy trying to get everything worked out with Medi-cal to get me nursing services. There is a waiver program that will cover nursing for me so I don't have to be in a facility. They came out yesterday to do an evaluation and today Mommy got a letter that I am considered medically eligible for the waiver. Now, the county Medi-cal office needs a bunch of paperwork from Mommy to determine eligibility. It will probably take a month or so to get put in place. Luckily, another agency is picking up the cost of the nursing in the interim since I have already maxed out what Daddy's insurance will pay. It sounds like it will all work itself out eventually but it takes a lot of phone calls and paperwork to get me what I need. Thank goodness my Mommy works in the insurance industry and understands a lot of this!

I am really a very good girl. I am awake a lot during my parents "shift" but I am pretty happy most of the time. I try to make it easy on my parents since they haven't had a baby before and they are just learning.

Peyton Nicole Smith

Thursday, October 25, 2007

Wednesday, October 24th, 2007

Even with my g tube site looking kind of infected, I am still a happy girl. Just put me in my vibrating chair and the smiles keep coming! Mommy wonders how long it will be before I will start laughing since I grin so big now.

Even with the night nurses, Mommy and Daddy can't seem to get enough sleep. You can see Daddy with me on his lap - we are both sleeping. Mommy took this picture at around 9 pm. Rocking me in the Lazy-Boy not only puts me to sleep - it works for Mommies and Daddies too!

Having a baby in the house must be exhausting to my furry brothers too. They barely make it past 9 pm anymore before crashing on the couch or heading to bed on their own. What is it with these people - I'm not that hard to take care of, I'm a really good baby : )

Peyton Nicole Smith

Wednesday, October 24, 2007

Wednesday, October 24th, 2007

Has anyone seen me??????

This is my brother Chili's favorite chew toy. It is pretty much the only toy he will play with and he has loved it since Mommy brought it home for him from one of her trips to Utah. She got it at the Smith's Marketplace. It is made by Hartz and she looked on line and locally to see if she could find it but no luck. Chili is going to wear this out soon and if anyone can find it in Utah please let Mommy know and she will pay you to ship one (or more) to her so we can keep him chewing it and not the furniture, baseboards....etc.


Tuesday, October 23rd, 2007

Happy Birthday to my Uncle Jason! Kisses from your favorite (and only) niece Peyton Nicole!

It was a pretty good day today. I am much more smiley now and I was awake a lot today (just ask Lucille)! Mommy and I did some more karaoke this afternoon while waiting for Daddy to get home. It's usually country but sometimes she will sing along to hard rock or heavy metal. Daddy came home and had me watch Nickelback's "Rockstar" video. It has lots of celebs and people off the street singing along to the song. So Daddy introducted me to TV today. You can see us chilling out on the rug while watching some Comcast On Demand kid's programs. I was fascinated by the constantly changing light and pictures. He is already making me a couch potato. When I am not watching TV I love watching my mobile - you can see the picture above of me in my crib with my cool mobile - it can keep me entertained for hours!

I gave my parents a little scare today because when they went to give me a bath my g tube site got all infected. They spent some time cleaning it and then called the pediatric surgeon on call. He didn't think it sounded bad enough for an er visit so they may try to get me an appointment later in the week if it doesn't clear up.

Peyton Nicole Smith

Tuesday, October 23, 2007

Tuesday, October 23rd, 2007

A note from Tracy:

I read this today - words of Clare Claiborne Park as she reflects upon the experience and emotions of being a parent of a child with disabilities - I am sure that fifteen years from now I too will feel the same:

"This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare- that one grows by suffering. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse (gift), I would have to stretch out my hands -because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love."

Thanks for everyone's support and comments on the blog. We love knowing that so many people are reading it and following Peyton's progress (and our own)! In the future we plan on printing the blog and comments and binding it in a book for Peyton to read when she is older. So keep making comments - you'll be published!

Monday, October 22nd, 2007

I had more visitors today! Jan and Steve Marty stopped by on their way back to Vancouver, WA. I stayed awake for a little while in my vibrating chair but eventually fell asleep. Jan helped Mommy figure out what to increase my feedings to since the pediatrician appt had to be rescheduled. I was kind of fussy this morning for Lucille my day nurse and my night nurse, Mimi said I didn't sleep most of the night for her either. Mimi said while she was holding me she asked me if I was a spoiled girl and got rocked by Mommy all the time. In response I gave her a big grin! Mimi hasn't seen me smile before and thought that was pretty funny - I seem to understand what she is saying! (And yes, Mommy does spoil me and rock me all the time).
Peyton Nicole Smith

Monday, October 22, 2007

Sunday, October 21st, 2007

Today I had something called Daddy Daughter Day. Daddy took care of me for a few hours so Mommy and Karen could go do something. Karen wanted to go see the famous Sacramento Bridge so they headed down to Old Sac and walked around for a little while. Mommy said it was nice to get out of the house for a few hours. Daddy did such a good job while they were gone - he got me to sleep and then cleaned the house and did laundry.

Karen had to go back to Salt Lake today. It was very nice having her come to visit me. We had a good time together. I started practicing out my pretty smile this weekend and she got to see it. My favorite right now is the bouncer/vibrating chair (thanks Cheri, Cheryl & Traci). You can see my big grin above when Daddy and Mommy put me in it tonight. I just couldn't stop smiling!

Peyton Nicole Smith

Saturday, October 20th, 2007

Today was the day for my first photo shoot. Karen brought me lots of pretty dresses. Most are too big for me now but Mommy can't want until I grow bigger so she can get me in them. Mommy was determined to get a picture so she could send out the birth announcements. The lighting was all wrong but eventually we got a few cute pictures Mommy could use.

Karen and Mommy took me for my first ride in the stroller. We only went a few blocks and Mommy was walking awfully fast but I had a great time. I am sure Mommy will get more adventurous with me as time goes on!

Peyton Nicole Smith

Friday, October 19th, 2007

Today I had another visitor! I am such a popular girl! Mommy knew Karen was coming to visit but she had written down wrong on the calendar and thought she was coming the last weekend in October. Then, Karen called on the way to our house from the airport - surprise! Mommy has a lot on her mind right now, so that could be why she got the dates all wrong. The house was kind of a mess and the lawn hadn't been mowed in a while but Karen didn't care - she came to see me anyway!

Peyton Nicole Smith

Friday, October 19, 2007

Thursday, October 18th, 2007

It was a busy day today. I had a dr's appt at UC Davis at 9 am. Lucille started my feeding early so I wouldn't miss out on one - I am a growing girl after all. I did really well on the car ride and slept the whole way. Mommy was very grateful for the disability placard - she was able to get front row parking. Once Mommy got past the insurance issue (having two out of state insurances seems more complicated then it is worth most of the time) we got in a room. Mommy took me to be weighed in and guess what? I am up to 7 lbs 11 ozs! Last Friday I was at 7 lbs 4 ozs so I put on quite a bit of weight in just under a week! Mommy was so happy because that is one of the big things they are watching for after discharge.

The ENT doc thought all looked fine with my trach. Jeanette, my craniofacial nurse stopped by as well. We talked with her for a while and got some questions answered. Mommy needs to work mostly with the pediatrician now to decide on when to increase the amount of feedings and to decrease the time I am getting my feeding. She will follow up at my appt next Friday.

They asked us to wait around because Dr Sykes, my surgeon, was in surgery at the moment but wanted to come see me. He came by and talked a few minutes about plans to do another CT scan in a few months to make a better decision about timeline for the jaw distraction surgery.

In all, it took 3 1/2 hours to go to the appt and get back home. By the time we got in the car for the ride back I was not a happy girl. I cried for almost the entire ride until I wore myself out and fell asleep.

When Lucille left at 3:00, I stayed awake for almost 4 hrs. No wonder my night nurse, Mimi said I slept well for her! It was a lot of excitement in one day.

Peyton Nicole Smith

Thursday, October 18, 2007

October 17th, 2007

I got visitors today! Mommy left to go to the DMV to get my disability placard and on her way home she got a call from Uncle Steve and Aunt Jan (Mommy's aunt and uncle). Aunt Jan has family in the Sacramento area so they stopped by for a visit. Both of them held me for just a little while but since Mommy woke me up to see them I was not in a very good mood. Aunt Jan helped Mommy try to breastfeed me for the very first time. I was a little interested in trying to figure out what it was. Mommy tried a few more times in the evening but I kept falling asleep. She says she will keep working with me.

Mommy put together the glider that Aunt Kristin bought for me. It is very nice and we hope to use it soon.

Peyton Nicole Smith

Wednesday, October 17, 2007

Tuesday, October 16th, 2007

It was another lazy day for me. I slept really well for the day nurse (probably because I didn't sleep for the night nurse much!) Mommy spent quite a bit of time rocking me tonight, mostly because she loves being able to hold me whenever she wants, and not because I couldn't sleep in the crib on my own. Mommy got in touch with a place called WarmLine that acts as a resource for families with kids with special needs like me. They have a program called Parent Matching - so Mommy got a call tonight from Dawnell who has a 12 year old son with Downs Syndrome. He had a trach from 1-2 years of age and has always had a g tube. It was nice for Mommy to talk to another mommy about those types of things and ask questions. Dawnell says she will call Mommy once a week or so to check in and make sure she is doing okay.

Mommy also emailed the director of the Foundation for Nager and Miller Syndromes to find out about upcoming conventions and to see about getting contact info for other Nager parents. The director said they are getting ready to put out another one of their newsletters and would love to include a picture of me as one of their "new faces". It's my first modeling gig! Now Mommy has to get a photo session with me completed soon in cute outfits so she has a really good picture to send!

Peyton Nicole Smith

Tuesday, October 16, 2007

Monday, October 15th, 2007

I had a good day today. After my day nurse left, Mommy and I spent about 5 hours together by ourselves since Daddy had to close the office. Initially, I was fussy but Mommy and I rocked for several hours together. She turned on the karaoke on Comcast and sang lots of songs to me while I slept. She is not that great of a singer, but she tries! She thought our theme song would be "Brown Eyed Girl" but since I have blue eyes she'll have to come up with another one for the two of us.

Because Daddy got home so late, they skipped on my bath tonight. Whenever I am fussy, Daddy puts me on his lap on a pillow and I calm right down.

Peyton Nicole Smith

Monday, October 15, 2007

Sunday, October 14th, 2007

Daddy went and picked up the glider that Aunt Kristin bought me while Mommy cared for me. Daddy then took care of me while Mommy went to the grocery store. They are getting very good at coordinating with each other. They work really well as a team.

I gave Mommy a scare this afternoon, though. She went to change my diaper and found a little bit of blood mixed in. That got her all worried so she called my pediatrician's office. The on call nurse had Dr Scott call her back. Mommy explained what she saw and Dr Scott said as long as I didn't have a hard tummy or any other bloody diapers that I was probably just fine but to call her back if there were any other symptoms. Mommy watched my next diapers really closely and everything seemed fine, but she still hung on to the diaper for a while just in case she needed to bring me in. Daddy thought this was pretty funny and wondered if I wanted to frame it or put it in the baby book.

Tonight Mommy and Daddy changed my trach for the first time since being home. It was kind of scary but Daddy is so calm and got it in just fine. There was a teeny bit of blood the next few times they suctioned but I am doing fine.

I had a new night nurse tonight, her name is Carol Lee. She seems very nice and on the ball so Mommy felt very comfortable leaving me with her. Carol Lee said she wouldn't mind taking the night shift on the weekends since I was such a good girl.

Peyton Nicole Smith

Saturday, October 13th, 2007

Mommy and Daddy decided not to get a day nurse on the weekends. My night nurse, Terry, had to leave early (at 5 am instead of 7 am) to go to another job in the morning so Mommy got up around a quarter to 5 so he could get ready to leave. She was shocked to find him sleeping away on the couch and not taking care of me! She did a few things in the room thinking that might wake him up but a few minutes later his alarm on his cell phone rang and he got up. She wasn't sure if the home health company policy allowed for sleeping so she didn't say anything at the time. For the second night in a row he indicated he had forgotten to change the ice pack in my feeding bag and that bugged Mommy too. Although he is really nice, she is going to follow up with Maxim to ask that he not come back.

Once that excitement passed it was a pretty lazy Saturday morning. Mommy and Daddy decided to move everything around to make it easier to get to things. They tried to get a few things done around the house while I would sleep. In the evening, though, I got really upset for about an hour. I was crying like I had never cried before, all red and mad, not like me at all. Mommy and Daddy tried to comfort me but it wasn't working. All of a sudden, while Daddy was holding me, I let out a big noise in my diaper and then I calmed right down and started to fall asleep. I had a tummy ache!

Lucille, my day nurse, agreed to watch me tonight since there wasn't a night nurse available. Mommy feels really comfortable with her so she was glad Lucille was able to stay with me. The rest of the night I slept pretty good - I wore myself out with all that crying.

Peyton Nicole Smith

Friday, October 12th, 2007

Today I had my first pediatrician's appointment. Her name is Emily Scott. She is very nice. She had a baby two days after I was born and her first day back to work was on Friday. Mommy got one of her first appointments so she could finally meet me. Mommy and my nurse Lucille drove to my appointment. I got kind of mad so when we got there I had to be suctioned a few times. Then, I had to get all naked to get weighed and I started crying again. I had to stay undressed until the doctor could come check me so Mommy wrapped me up tight in my blankie and rocked me until I fell asleep. I was a lucky girl today, Dr Scott said I could wait to get my first shots on my next visit in a few weeks. She said I had already been through enough.

Peyton Nicole Smith

Friday, October 12, 2007

Thursday, October 11th, 2007

Today was my Daddy's birthday! He turned 32 today. Mommy and I worked on a shadow box for him with some of the things they have kept from the hospital and pictures of us together. Daddy said I was the best birthday present ever so not sure what Mommy is going to do next year (maybe a sibling?) Mommy went and got some chinese food from a local place they like and traded off holding me so they could eat. It wasn't an exciting birthday but it was our first together as a family.

Mommy scheduled my visit to get my MIC-Key (Mickey) button put in place for the 29th. Right now I have a tube that hangs out a little from my tummy. The MIC-Key button will lay closer to my skin so I can wear regular clothes and spend time on my tummy.

You can see pictures above with my and my brother Chili. Henry doesn't seem very interested in me, but Chili loves me. (No, he is not licking his chops because he wants to eat me, he is trying to figure out how to get to the milk in my g tube!) Chili uses his big nose to poke at things and I was just something new to poke. Daddy stopped him before he got too excited and poked me over onto my tummy! I had been really upset just a few minutes before during my bath and trach tie change but as soon as Daddy put me on the floor with my brother Chili I calmed right down and watched him. I think we are going to be really good friends!

Peyton Nicole Smith