Namine was born with Pierre Robin Sequence. It’s a condition that affects children differently at birth; in Namine, it resulted in micrognathia and ankyloglossia.

Namine has had several surgeries to help her airway: a tracheostomy breathing tube, a mandibular distraction and a palate repair. When her jaw had come forward enough that she was able to breathe unassisted, the tracheostomy tube was removed. She has also had a partial frenulotomy, and for a time, she had a palatal lift prosthesis.

Jaw Distraction

Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of the vent then we have been doing. S...

May 24, 2009

Jaw distraction on Dec 1

The post title says it all. As we said before, Namine's jaw distraction would occur sometime last this year or early next year. But Jessica got a call today from Children's Hospital that they would do Namine's distraction on December 1 of this year. Needless to say (but I'm go...

Sep 23, 2009

Jaw distraction complete

Namine's jaw distraction surgery is done and she's doing well!

Dec 1, 2009

Palate closure successful!

Well, kids, that was fast. Not long after I had finished updating the blog, Dr. Denny came out and said he was done. It turns out that since Namine was already asleep, he just started without coming to talk to us. Namine was, as always, a great patient. They were able to do a 2-sided closure; that ...

Jun 3, 2010

Plastics appointment

Namine had an appointment this morning with her plastic surgeon, Dr. Denny, the man who did her jaw distraction and cleft palate repair. He has declared her palate completely healed, and she can eat whatever she wants again. Well, within reason.

Jul 26, 2010

A sudden lack of trache

I'm happy to say that Namine is safely home, and she's asleep in her own bed again.

Sep 15, 2010

Omega loops

Sounds like something out of a sci fi movie, doesn't it? It's not. It's what Namine had placed in her mouth today, in preparation for her new prosthetic.

Aug 20, 2013

The palatal lift prosthesis is a mouthful

I mentioned yesterday that the last big thing is to reschedule Namine's palate prosthetic fitting. She had the measuring before the Fontan, and had to postpone the fitting due to all the complications involved with Namine's chest incision from that surgery. But not only did they finally return our calls, they wanted to do it today.

Oct 30, 2013

Frenectomy follow-up

Yesterday Namine had a clinic appointment to follow up on her frenectomy. Frenulotomy. Frenulectomy. Just pick a word, I guess.

Sep 16, 2014

Dental clinic

With all the craziness lately, I never wrote about Namine's most recent trip to the dentist last month. Some pretty important points were discussed.

Mar 14, 2015

Dental appointment

Namine had a dentist appointment today, and it was a doozy.

Aug 19, 2016

Farewell, Dr. Denny

Namine's yearly appointment with her cranial-facial doctor was bittersweet; he's retiring, so today we said goodbye.

Apr 11, 2017

Cleft palate clinic

Namine saw several doctors in a morning-long cleft palate clinic appointment.

May 29, 2018

Upcoming dental work

Namine had an orthodontist appointment, but this was no ordinary visit. Today we discussed the upcoming dental work she will need.

Jun 28, 2018

Dental appointment

Our visit with the orthodontist was less than stellar. We were hoping to be one step closer to Namine getting her braces, but we seem to be trapped in hospital purgatory.

Oct 26, 2018

Tooth extraction

Namine had two teeth on the right side of her mouth extracted.

Dec 18, 2018

Tooth extraction recovery

Namine is slowly getting better after having two teeth removed.

Dec 20, 2018

Tooth extraction, again

Namine had the remaining two teeth pulled so she can get braces.

Dec 31, 2018

Tooth extraction recovery, again

Namine is feeling much better after having her teeth pulled, so we spent the day taking down the Christmas decorations.

Jan 1, 2019

Dental checkup

You'd think that just a checkup and x-ray prior to getting braces would be pretty standard, right? Yeah, you'd think so, but you'd be wrong.

Jan 22, 2019

Teeth spacers

Namine had a dental appointment to get spacers before she finally gets braces.

Feb 7, 2019

Meeting with the dental surgeon

During a consult today, Namine proved to be her own best advocate.

Feb 13, 2019


The day has come: Namine has her braces. Well, mostly.

Feb 14, 2019

Oral surgery

Namine finally had the last tooth pulled, removing the final roadblock to getting her complete braces.

Mar 6, 2019