Cleft Palate Update...

April 18th we attended our second cleft palate team clinic. Her review team this day consisted of a Geneticist, Pediatrician, Plastic Surgeon, Audiologist, Ears Nose Throat (ENT) Specialist, Pediatric Dentist, and a Speech and Language Pathologist. The professionals who help out with clinic carefully reviewed her progress and provided guidance for her care. It is a long day in the clinic but I really do appreciate that all the services are coordinated and in one building.

Most individuals see Su Yee like this...can't really see that little scar under her nose.
Her expression is kinda' how we all felt about attending Cleft Palate Clinic...really, do I have too!

She has a beautiful smile and gorgeous eyes.

The clinic was terribly uneventful. We are pretty sure that Su Yee's unilateral cleft was not part of any syndromes so we won't speak with the geneticist again until she is ready to have children herself.

She is growing and developing right on track. The Vitamin D deficiency and concerns with spine, rib and head bone shape and growth are correcting themselves with our regimen of good nutrition and the the natural course of time.

One of her ear tubes is in place and the other one is dislodged. They were able to remove the tube, clean out the wax and found a bit of fluid behind one ear drum. Hearing was assessed as OK but needs to be reviewed every three months to see if the fluid resolves itself or if she needs another ear tube.

Occassionally the overbite is noticeable

Her dentition is hypoplastic, typical of kids with cleft palates, which means she sprouts cavities even with lots of careful brushing, flouride treatments, and staying away from high sugar foods (candy, juice, pop) as much as possible. However, the entire time we were with the dentist Su Yee asked "Do I get my sucker now?"

Pathetically I had promised a sucker for good behavior at the end of a very long day. The dentist was her second last appointment. She kept repeating this question over and over in the tiny room with the Ped Dentist and the four dentistry students!  I had to keep my promise so I found myself profusely promising to brush my childs teeth and apologing that I had to use food as a bribe. And to think that I am a Registered Dietitian...just a little humbling! I wanted to shout "All foods can fit Right?" :0

The fistula is rarely visible...only when she is super happy

Our last appointment of the day was with an unknown Plastic Surgeon. Su Yee's surgeon Dr. Zondervan had beautifully repaired her hard and soft palate last June...and then promptly retired. The health district never did find a replacement and is now unable to provide this service. The cleft lip and palate children are required to travel to Regina (or Edmonton) for the same surgery. Going to clinic we had lots of questions for visiting Plastic Surgeon about the next steps for Su Yee inlcuding the need for a velopharanygeal lengthening and the timing of the future oral surgery to close her alveolar fistula. How delighted we were to find Dr. Zondervan in that last clinic room waiting for us. He had generously agreed to help the Cleft Palate clinic out with reviews even though he is indeed officially retired.

What a treat for Su Yee to have her picture taken with Dr. Zondervan.  

 We had a great chat about her progress. Her speech has the typical cleft palate high pitch nasal quality with many ommision and articulation errors, but she is still young. We are currently receiving speech and language help biweekly which in 6 short weeks has resulted huge improvement. Non-family members  now understand her much better.  It was decided that our next visit will be at 5 years old when we will begin discussions with the cleft palate team about the oral surgery to close the fistula, the need for braces, and possibly a tooth. Any other cosmetic revisions won't happen until she is done growing in her late teens (and only if she feels a strong need as we personally think she is beautiful).