Updated: Jan 14, 2019
Wednesday, November 08, 2000
Today was very busy. My custom trach came, so Mommy changed my trach with the nurse’s assistance. Mommy and Daddy have “graduated” from trach training and now do all of my care with the nurses helping them to lift me and hold my vent.
The new trach makes me look like a new man! It was a good thing they changed it today because I was getting some yucky stuff around it that should have been cleaned up better.
Mommy talked with a speech therapist this afternoon. She's going to work with me 2-3 times a week to help stimulate the muscles around my mouth for sucking. She is also going to work on massaging my tongue to help move it more forward in my mouth so that I'll be able to eat better.
The therapist showed Mommy things that her and Daddy can do with me while they are visiting. The important thing is to make it pleasant so that I don't develop an oral aversion. I'm a high risk for that happening because of all the trach suctioning and oral surgeries I'll eventually have. The therapist also talked to Mommy about enrolling in the Early Intervention Program as well as finding a private therapist to work with once I'm home.
My geneticist stopped by this afternoon. Mommy wishes that she could remember everything he said, but most of it was pretty confusing! I probably won’t have too much follow up with genetics unless Mommy and Daddy have specific questions or want to have me evaluated again in the future. Mommy asked about some theories she's heard about what causes Goldenhar Syndrome as well as a scoring system that exists to rate the severity of my condition.
All of this is interesting, but the important thing is that I get checked out for everything that's been identified to part of this spectrum of anomalies. Genetics and Mommy both agree that I have been thoroughly evaluated by all the necessary specialists. Do you know how many have seen me so far? Eleven! I've been inspected by pediatric orthopedics, neurosurgery, ENT, ophthalmology, genetics, neonatalogy, cardiology, craniofacial/plastics, nephrology, audiology, and speech therapy!
After genetics left, ENT came by to see if I was wearing my new trach. They were very impressed that Mommy changed my trach, and they thought I looked really good. They also told Mommy I have a hearing test scheduled for sometime this week.
After reviewing my latest MRI and CT scans, ENT was able to see the anatomical parts of my ears. They think I have some hearing in my left ear, kind of like how it sounds when you plug up your ear. My right ear looks good structurally, although there are a few abnormalities that may or may not impact my hearing. My middle ears on both sides look fine, so I should have normal balance.
I am getting quite the personality and Mommy and Daddy are getting a kick out of all the funny expressions and movements that I make. Mommy held me this afternoon, and I had my eyes open almost the whole time while she was talking to me. I can’t wait to come home so that I can be with Mommy and Daddy all the time!