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 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 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 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

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

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