Red Shoes' FFVN

Red Shoes really struggles with his speech.  He is 4 1/2 right now and has been working with his Speech Therapist since shortly after he turned 2.  He works SO hard during therapy.  To back-up a little, when Red Shoes was a baby he was born with Bilateral Choanal Atresia.

According to Wikipedia.org: "Bilateral choanal atresia is a very serious life-threatening condition because the baby will then be unable to breathe directly after birth as babies are obligate nasal breathers (they must use their noses to breathe). In some cases, this may present as cyanosis while the baby is feeding, because the oral air passages are blocked by the tongue, further restricting the airway. The cyanosis may improve when the baby cries, as the oral airway is used at this time. These babies may require airway resuscitation soon after birth."

Red Shoes did have to be resuscitated.  After he was released from the Neonatal Intensive Care Unit (2 months after his birth) at our local Children's Hospital, I started to notice that it took FOREVER for him to take his feeds.  Sometimes around 30-45 minutes.  Then, we noticed that often times he would lose milk out of his nose.

As I began looking for answers, I came across information on the Haberman Feeder.

 It was designed for babies with a poor suck.  I ordered it that day.  Red Shoes and I had to learn together and get into a rhythm.  I was literally squirting the milk into his mouth.  I was glad to find something, but feeding him was so difficult.  If we were anywhere but home, he wouldn't eat like he needed too.  Let alone let many other people try to feed him.

I only mention all of this, because it leads up to his difficulty with speech.  We really felt like Red Shoes needed to be scoped so that we could see what was truly going on.  We felt like there was a physical reason for a lot of what was occurring.  After much waiting, we had our first appointment with the Cleft Palate Clinic.  That morning was busy meeting with a Speech Therapist, nutritionist, pediatric Dentist, Plastic Surgeon and Ears, Nose and Throat Specialist.  I left the hospital that morning ready to scream and cry both.  The Speech Therapist refused to let Red Shoes be scoped because he didn't have enough speech.  Aghhhhh!  We knew his speech was very limited, but she wouldn't budge at all.  After more research and growing more of a backbone, I went back to the drawing board.  I decided I would email the ENT Doctor that did Red Shoes' Choanal Atresia surgeries.  She had become very special to us and I thought she might be able to give us some direction.  She's the kind of doctor that gave me her cell phone number and email address!  There's not too many of those around. 

She spoke with one of her colleagues and we met with her (another ENT) a month or two later.  From there we got Red Shoes scheduled for his scope (FFVN) with a different Speech Therapist (I demanded) and this ENT Doctor.  Thank you Jesus! 

If you're wondering how the FFVN works... below is a picture of the camera that is used.  It's about the size of a strand of spaghetti.  Red Shoes' nose was numbed and then the camera was inserted. After it was positioned correctly they asked Red Shoes to say certain words/phrases. 

Here's some pictures of Red Shoes during his FFVN procedure in October of 2009:

From this procedure we learned that our suspicions were right on.  Red Shoes' palate was hardly moving at all.  It wasn't completely paralyzed, but pretty close.  We were so glad to finally have some information.

We left that day with a list of "To Do's"

1.  Get a Tonsillectomy (Completed December 2009)
2.  Follow-up with Genetics Clinic (Completed November 2009)
3. Schedule Sleep Study (Completed March 2010)
4.  Heal from Tonsillectomy
5.Consider Pharyngeal Flap Surgery
6. Make another appointment to meet with ENT to discuss options (Completed April 2010)

We completed this "to do" list and met with the ENT, then had just a little bit more to do:

7.  Schedule another FFVN b/c Red Shoes was stronger and saying more (Completed July 2010)
8.  Pharyngeal Flap Surgery.....................Yay!!!!! Scheduled for August 2010!
More on that later... Pin It