Saturday, February 4, 2012

Perfectly Perfect

Dysmorphic Facial Features..... I'm sure you're wondering what I'm talking about.  Those words are the reason the NICU doctor gave us for wanting to do a chromosome analysis 2 days after Tyler was born.  Don't get me wrong, I will forever be grateful to that doctor.  He saw something that made him do tests that diagnosed Tyler before we even left the hospital.  We were able to start therapy and find medical problems immediately.  We know families who don't receieve a diagnosis for years.  However, lets just say I wasn't so grateful the day a doctor told me my precious newborn baby didn't look right.  Dysmorphic Facial Features.  Dys-morph-ic.  Uggghhh! It sounds like he has an ear growing out of his nose or something.  Couldn't we think of a better way to break it to a brand new mother that her child could possibly have a life-altering medical condition?  Since that day, medical professionals still use the medical terminology to describe Tyler and his symptoms.  They see those "dysmorphic features", I see perfection.  Back in the summer, when Kammy's Kause asked for artwork from our kids to auction off at their fundraiser, I had an idea.  Luckily, my mother in-law bid high enough that we didn't have to let it go :) 

Prominent forehead
widE set eyes
shoRt upper lip
epicanthal Folds
hearing impairmEnt
small Chin
down turned mouTh

Wednesday, February 1, 2012

February Updates

Some updates on my little guy....  we go next week to the St. Mary's feeding clinic for a consultation.  Tyler is still not receptive to eating baby food.  He has also become difficult when trying to feed him a bottle and it is quite a stressful event to get him to eat.  They are going to do a 2 hour evaluation and then give us a recommendation.  We are hoping they can help us get him to eat and also be able to monitor him more closely since they have a nutritionist on staff.  We will be going back to Louisville at the end of the month on the 29th for the MRI with contrast.  This is another procedure in which he has to be sedated.  This will be the 3rd time in 5 months and it really makes me nervous.  After the MRI we will meet with Dr. M to go over the findings of how the contrast reacts to the cyst and also the tethered cord surgery.  This is a big day and I am anxious waiting for it.  In physical therapy, we have been working on sitting up unassisted and bearing weight on his legs.  We had made a lot of progress but now the helmet has made things a little more difficult as far as the sitting goes.  Nothing Super Tyler can't handle!  We will eventually get there! Last post, I mentioned a local restaurant contacting us to do a fundraiser.  I am super stoked to announce that Tyler's Benefit Comedy Show will be held at Ri-Ra's on April 5th!  This is going to be a fun evening and we have some awesome comics.  These guys have been on Bob and Tom, worked with the comics of Chelsea Lately, and the list goes on and on...I hope to have the tickets in the coming weeks.  I will keep everyone posted and hope to see you there!