Tuesday, November 13, 2012


I took apart an email to my mom to pass this week on,,,,as we learn things, and there is time....we will update our friends and family.  Honestly....I've got good feelings about everything.

We'll be starting our day headed to Primary Children's to see Dr. Drees at 9 sharp. He'll be tested for several degenerative eye poblems with a focus on his retinas. 50% of Pierre Robin babies have Sticklers syndrome ......and upwards of 90+% (of the Sticklers babies) have some sort of major eye issue. For some reason, we're just not worried about this though isn't something anyone can just look at him and know. If we learn something, you'll be the first to know.
From there, we'll see Dr. Siddiqi. He'll make sure Connor's prosthesis is clean and staying put. We'll also discuss a time for his next surgery which will include a palate repair and the clipping of underneath his tongue. I believe his palate repair will take 2 surgeries since he has no hard or soft palate. Part of us hopes this can be done before the new year because we have several pieces of equipment that we're only comfortable returning after he's been home awhile and we know he's handled these surgeries well.
Tomorrow, we'll be headed back to Primary's for Connor's sedated ABR hearing test. Sawyer will stay with a friend. ...his test will be under a deep conscious sedation and he'll be monitored the entire time. He'll have sensors on his forehead and behind his ears.....he'll have small earphones in the ear canals....when the sound goes in his ear, it'll be converted in the inner ear to a small electrical signal that travels along the brain stem auditory nerve pathways. The electrodes will pick up this activity in response to the varying loudness of sound. This should take about 3 to 4 hours and we'll go home once he's had a bottle and kept it down (within reason).
The next day he has speech therapy where we'll need to discuss his eating habits and another needed swallow study. Connor really wants food but there is no doubt about his beyond normal reflux and his aspiration. If a certain baby food is thin, I have to mix cereal with it so he can actually enjoy his meal. .....I'm hoping if these next big appointments go well, we can figure out why he aspirates and fix this because he's starting to really want our food as well. I'd love to let him gnaw on a baby biscuit but of course he has teeth now and we don't want anything to break and him swallow that wrong.
Friday our deaf and blind lady will come to discuss this week's findings and we'll decide the different therapies Connor will need.
Monday we'll visit the pediatrician to relay everything new and also officially change out Connor's g tube for another. His skin has also been irritated around the site, so we'll try to get a handle on that.
Tuesday will be the early development speech guy that comes to our house. He'll follow up with our other speech lady to make his suggestions from what he sees and will also evaluate Connor again for his physical abilities. .....he can almost sit up now. we still feel good about this but will listen to what he recommends.
.....from there, we will prepare and enjoy our Thanksgiving with brand new windows installed that Monday and possibly Tuesday. I'll take a bath in my newly painted (buxton blue) bathroom and thank God for my loving and wanted family.....and hopefully with the windows, a much warmer home. 

Some pics..

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