Thursday, December 6, 2007

Tuesday, December 4th through Thursday, December 6th, 2007


It has been a busy few days in the Smith household. Tuesday, Daddy dropped the "boys" off to Camp Bow Wow for a few days to see how they do with an overnight stay. You can check them out on the web cam at :

http://bowwow38.serveftp.com/lanmpegview0.htm


On Tuesday, Lucille showed Mommy a new trick of mine. If she sets my Santa doll on my chest I will pick it up and lift it to my mouth and sometimes up over my head. I am getting so strong! I love my Santa doll - we will see if I like him so much in person!

On Wednesday, Mommy and Daddy got up bright and early and loaded me (and all my stuff) into the car for my 8 am craniofacial appointment. Without clothes, I weighed in at 9 lbs 11 ozs - up from 9 lbs 4 ozs on Friday at my pediatrician appointment. A bunch of specialists came by to see me. There was an audiologist, geneticist, nurse specialist, orthodontist, oral surgeon, facial plastic surgeon, pediatrician, social worker, speech pathologist and ENT. I was a popular girl! Some docs (like the dentist and oral surgeon) didn't have much to say yet since I have no teeth but the ENT talked to my parents for a little while. They are going to have me come back in two months to get a CT scan done, then they are looking to maybe do my first jaw distraction surgery when I am about six months old. The ENT thought there might be a problem with my the joint at my jaw (TMJ) when he did a physical exam since it was so tight. But then he checked out my CT from the NICU and the joint looked fine. He wants my parents to do some stretching exercises with my jaw to see if that will help the stiffness. Mommy and Daddy are going to have an evaluation done as well in a few weeks by Dr Morales at Primary Children's to see what his recommendation is.

Mommy and Daddy are going to order the Passey-Muir speaking valve to put on my trach but before they start using it they are going to try covering my trach for a few seconds at a time to see if I will try to vocalize and how well I tolerate it.

On Thursday, Mommy and Lucille took me to my audiology appointment. Since I had to sleep for at least an hour, Mommy kept me awake from 5:30 until my appointment at 9 am. I was very sleepy and Lucille and Mommy had to keep poking me to keep me awake which made for a very long morning since I was very fussy. The hearing test went well but as soon as my feeding ended I woke up and was pretty unhappy. As the doctor was trying to explain to my Mommy the test results I had some projectile vomiting so Mommy was a little distracted. Then as Mommy and Lucille were headed down the elevator with me it happened again. I am sure the people in the lobby thought we were crazy as Mommy & Lucille ripped open the suction bag and started working on me!
Basically, what Mommy learned is that I have conductive hearing loss but my cochleas are okay. So that means that due to my canals being closed off and small only really loud sounds are making it to my cochleas - they are guessing I am in the severe to profound hearing loss range. The fix is to get me a hearing aid that I wear on a head band and then I will be able to pick up soft noises as well and basically have hearing close to everyone else. Eventually when I am around five they might be able to do a surgical procedure to put in a hearing aid so I don't have to wear it on a head band anymore. Due to my hearing loss I will get referred for early intervention services to try to keep my language development on track.

Mommy has a call in to the pediatrician to see about a medication for reflux since even with the rice cereal things have not improved and I am so unhappy before, during and after my spit up incidents. In fact Mommy noticed the other night that my heart rate would jump up after spitting up and stayed that way for close to 20 minutes after even though I appeared to be sleeping. She is a little concerned that it might be more stressful on me then she realized.

Peyton Nicole Smith

1 comment:

  1. PEYTON,
    YOU ARE GETTING SO BIG. IT SEEMS THAT YOU ARE STILL GROWING SO FAST EVEN WITH ALL YOU SPITTING UP. I HOPE YOUR DOCTOR CAN FIND SOMETHING THAT WILL HELP. I WAS EXCITED TO HEAR THAT YOU COULD TAKE A REAL BATH NOW. I SENT A CUTE BATH TOY UP TO YOUR AUNT KRISTIN FOR YOU WHEN YOU COME TO SLC. I HOPE YOU WILL HAV EA GREAT VISIT WHEN YOU COME.

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