Thursday, April 22, 2010

Wednesday, April 21st, 2010

Another day of rain here in Northern California but my nurse did a good job of keeping me entertained during the day while Mommy worked. I took my heels off long enough to play with some old match box cars that Mommy has. In the evening, it cleared up enough that Daddy and I could go for a walk around the neighborhood and I collected some flowers to bring back to Mommy.
Peyton Nicole Smith

Wednesday, April 21, 2010

Tuesday, April 20th, 2010

I have a great big grin despite it raining most of the day and not getting to go outside with my nurse. By the time Daddy came home it was clear enough that I was able to go around the block a few times on my tricycle. Getting that energy out seemed to help because I went to bed tonight without too much of a fight.

Peyton Nicole Smith

Monday, April 19th, 2010

Me with my two favorite "beans" - Chili (aka Beanie) and a frozen green bean - my new favorite snack. I don't actually swallow the green bean but I do like to chew on it!

Peyton Nicole Smith

Sunday, April 18, 2010

Sunday, April 18th, 2010

One day - three outfits. This is pretty normal for me. I like to snack and paint throughout the day and I don't like wearing bibs anymore. Good thing Mommy does laundry every day!
Peyton Nicole Smith

Saturday, April 17th, 2010

Lisa came to play with me today so Mommy and Daddy could get a few things done. Mommy spent that time working while Daddy brought his car in to get new tires. So my parents didn't get to do anything "fun" while the nurse was watching me today but they got a few things checked off the "to do" list.

Peyton Nicole Smith

Friday, April 16th, 2010

Busy, busy, busy. Although I may not have a lot of therapy or doctor's appointments this month things are still busy. Mommy is working all hours of the night and day to try to get a big work project completed. Daddy has been very accomodating and spending a lot of quality time with me.

Peyton Nicole Smith

Friday, April 16, 2010

Thursday, April 15th, 2010

Long time no blog! Life has been pretty crazy the last week since Mommy took a trip to Salt Lake. Daddy and the nurses did a great job taking care of me while she was gone. I am still adjusting to my two new day nurses - Lisa and Michelle. They both take advantage of the good weather and I get to go to the park every day if it's nice. My parents are glad that I don't fight the nurses taking my naps (I save that for my parents). In the mornings I am pretty clingy to Mommy, though, but it won't take long before I let Mommy go to work without a fight (at least that's what she is counting on).
Peyton Nicole Smith

Friday, April 9, 2010

Wednesday, April 7th, 2010

I am officially a pro with the high heels at this point. I walk in them, I run in them and I am now jumping in them! I requested to go to the store in them the other day but Mommy wouldn't let me. Suri Cruise is constantly walking around in little heels so I don't know what the big deal is?

Peyton Nicole Smith

Tuesday, April 6th, 2010

Nestle just came out with Lil Drums - the Drumstick cones in minature - perfect for little hands (and appetites) like mine!
Peyton Nicole Smith

Thursday, April 8, 2010

Monday, April 5th, 2010

As you can see, I am obviously feeling pretty good today! I am thoroughly enjoying my Hershey's chocolate. Not much is ending up in my mouth but I love making a mess!
Peyton Nicole Smith

Tuesday, April 6, 2010

Sunday, April 4th, 2010

Happy Easter! So my parents are feeling like slacker parents. I got lots of fun Easter packages in the mail in the last few weeks from family and friends. When I woke up this morning, though, there was nothing from the Easter Bunny! Apparently, there was some miscommunication and my parents forgot to communicate with the Easter Bunny about what to get me. Good thing for Uncle Jeff. My parents and I headed over to his apartment to celebrate his birthday with Jeff and his girlfriend. Uncle Jeff had gotten me a great big Easter basket, a huge chocolate bunny and hid eggs around his apartment for me to fine. Even his girlfriend had gotten me a beautiful lavendar stuffed bunny.
Although I was still coughing, I still didn't have a fever or any other of the normal signs of an upper respiratory infection. While everyone had a nice lunch I got to play with my new toys. Uncle Jeff's birthday was actually yesterday but he had gone to San Francisco for the day so we celebrated today instead. My parents are big fans of Ace of Cakes and Cake Boss. So when Mommy ran across an add for a local bakery and saw pictures of their custom cakes, she had a plan months ago to get Jeff a fun cake for his birthday this year. There has been an ongoing joke with Jeff on how immature it is for a man in his 40's to have a Miami Dolphins bed set that you usually only see on the bed of a 10 year old. So Mommy sent the cake company a picture of a similar bed and as you can see they did a great job making a cake that looks just like it! Uncle Jeff thought it was great and it tasted good too!
After the birthday celebration it was time to head home so I could nap. Because of the coughing I ended up sleeping in Mommy's arms while being rocked. When I woke up, though, I was in a good mood. In the evening I got my bath and my parents did my weekly trach change and then I got into bed. It took a while to fall asleep but eventually, I started to drift off. About that time, my pulse oximeter machine started alarming. Normally, my oxygen saturation level is between 96-100%. It had dropped to the 70's and when Daddy went to check on me, I was turning blue around my mouth. He quickly sat me up and woke me and then hooked me up to my oxygen tank. My parents have had oxygen in the house for several months "just in case" and were sure glad it was there. My oxygen saturation jumped back up to 100% and the blue color was mostly gone. At 10 am, my night nurse arrived. She listened to my lungs and said I was pretty gunky in all four lobes. She thought even with the oxygen and my saturations at 100% that I still looked a little blue so she recommended my parents take me to the ER. So my parents got my stuff together quickly and got in the car. They went ahead and hooked me up to the pulse ox machine in the car to monitor my oxygen levels and they brought the oxygen tank just in case. I was in an awesome mood! How fun to get to go for a car ride at 10:30 at night! And my oxygen saturations - no problem I was at 98% almost the entire way without any oxygen. My parents told me to stop looking so happy and a little more sick! We got right in to the triage nurse and on into a room. It was a quiet night in the ER and Dr. Fair Enough came right in. My parents called her Dr. Fair Enough partly because they can never remember everyone's name and partly because her response to everything was "fair enough". For example:
Dr: "How has Peyton's appetite been today?"
Daddy: "She is g tube fed and really eats very little by mouth normally."
Dr: "Fair enough. Has she been running a fever?"
Mommy: "We have been giving her Tylenol every four hours just in case so it's hard to say."
Dr: "Fair enough."
And so on and so forth...
The doctor was glad my parents had brought me in after the apnea spell but after talking with them, taking my vitals and listening to my lungs it was clear that I was just not that sick. They sent me on to xray to rule out pneumonia just in case. Normally, the process of obtaining a chest xray involves holding me down and lots of tears but I am growing up. Daddy sat me in the appropriate spot and asked me to hold up my arms in front of me and I went right along with the plan. Usually, chest xrays take 1/2 hour or more due to the struggling and having to retake them when they don't come out - today I had two xrays taken and was done in five minutes with no tears - my parents were so proud and the technician gave me three stickers for my good behavior.
A few minutes after returning to the room the doctor came in and said my xrays were clear and i was allowed to go home. In less than two hours we were back in the car and on the way home - a record! Once we got home the nurse came back to be with me the rest of the night and my parents got some much needed rest.
You know you are a frequent ER user when....
They recognize you when you come in.
Your Mom has your medical record number memorized.
You have been in every room in the pediatric ward.
You know how to get to Xray without any assistance.
Peyton Nicole Smith

Sunday, April 4, 2010

Saturday, April 3rd, 2010

Daddy is so proud! Despite starting to come down with another upper respiratory infection, I was in a great mood today and spent time "fixing" my bicycle. My parents aren't sure where I picked up this cold but they're crossing their fingers they can stay on top of it and avoid a hospitalization this time.
Peyton Nicole Smith

Saturday, April 3, 2010

Friday, April 2nd, 2010

Doesn't get much better than this - lying on my pillow pet, drinking Pepsi, eating crackers and watching Caillou. It was yucky today so I wasn't able to go the park with Michelle but I am hoping the weather is better tomorrow. Mommy and I did get to meet a new day nurse who can work 7-4 on Tuesday through Thursday. Her name is Lisa and within 15 minutes I was sitting on her lap as if I had known her all my life. Mommy thinks she is going to be good fit with our family and she is so excited to hopefully be fully staffed again.

Peyton Nicole Smith

Thursday, April 1st, 2010

It was another day without a nurse so I set up my laptop next to Mommy's on the dining room table and we both got some work done!
Peyton Nicole Smith

Thursday, April 1, 2010

Wednesday, March 31st, 2010

It's been almost two years since I first started working with Karen my feeding therapist. To say I have come a long way is probably stretching it a little - but I have definately made progress over that time. Mommy had some pretty unrealistic expectations going into the whole process and would have thought learning to eat wasn't very difficult and the g tube would be out before too long. Once Mommy got past that (see her post on getting the trach out a few weeks ago) she was able to view feeding therapy in a much more positive light and celebrate even the smallest improvements. Here is some of what Karen and I have accomplished together:

Eating frozen fruit out of feeding bag
Lip closure
Drinking from a cup
Talking using a speaking valve, no speaking valve and covering my trach
Eating from a flat spoon
Eating various textures (purees, crushed crackers, uncrushed crackers)
Signing or speaking to make requests for food or drink
Brushing my teeth

Mommy knew for several months this day was coming. With the budget cuts in California, the requirement was for private insurance to pay for therapy when possible. Still it was difficult to consider having anyone else provide feeding therapy when Karen has been doing such a great job. But today was the day - the last appointment with Karen. We will be sad not to see her each week but I am sure there are other little kids that need her help just as much that she will have more time for now. Thank you Karen!

Peyton Nicole Smith

Tuesday, March 30th, 2010

Just when Mommy are sure things are back to "normal" with the nursing something seems to always happen to remind her of why we all loved Lucille so much. Our new Tuesday-Thursday nurse (last week was her first week) called in sick today. AAHHHHH! This is Mommy screaming in frustration! When you don't have dependable child care it is difficult - when you don't have dependable nursing care for your child it is impossible because there aren't a bunch of nurses hanging around waiting to jump in when your regular nurse calls out. So once again Mommy gets to be the back up nurse. I really am a good girl but I am also a typical two year old so trying to focus and work is difficult. Thankfully I took a nap so Mommy had a little time to devote to work but it just meant another late night and early morning to try to make up the time she lost.
Peyton Nicole Smith