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.
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
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
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
Yesterday Namine had a clinic appointment to follow up on her frenectomy. Frenulotomy. Frenulectomy. Just pick a word, I guess.
Sep 16, 2014
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
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
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
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