Tuesday, September 30, 2008

Jaw Distraction #1, Surgery #7 in the history books!

Cicily went in yesterday to have her distraction device removed. It went very well. Dr. Singh removed everything completely internally (via small incisions inside her mouth) so Cicily will only have two small scars where her pins were sticking out. Yes, Dr. Singh is a surgical marvel! She also said Cicily's bone looked good and her bite is closed in the back of her mouth and only slightly open in the very front (3-4mms). So Cicily has an underbite, which is exactly what we wanted so she could have some room to grow into her jaw.

Overall the distraction was a huge success. What a relief!!!

We want to thank everyone again for helping us. This was certainly a "village" effort. We have such amazing family and friends, extremely talented doctors and have been so blessed. Thank you very much to all of you and to Dr. Singh and Dr. Glick.

Cicily has done quite well since surgery. When she woke up enough in recovery, she started signing "out", "home", "all done", and trying to take out her own I.V. We've decided she equates the I.V. coming out with leaving the hospital! She got so frustrated after signing and trying to leave, she held her breath until she passed out (2 times in fact!). So we were very glad Dr. Singh thought she would do ok coming home. Cicily slept very well last night in her bed and has been up and playing today.

Here are pictures of Cicily post surgery. Once again, I pull no punches, so don't look if you can't handle blood.

Last night at home - about 4 hours post-op The pin sites were left open a little so they could drain. And drain they did! I tried cleaning her up before bed, but she screamed and almost passed out again, so I decided a little blood wouldn't hurt for one night.

Today - looking pretty good! Quite a lot of swelling in her cheeks. It reminds us of 9 month old Cicily. And yes, the right side of her face is not moving much. A little disconcerting, but should go away in a few days.

Friday, September 26, 2008

X-ray before and after

Cicily hates the x-rays, so she always screams and has an open mouth, which makes it difficult to tell what her jaw actually looks like! But, you can note how the mandible is further out in the second slide than in the first and you can see how the distractors are slid all the way to the bottom of the distractor body. Comparing both profiles is pretty amazing. Look in a straight line from her forehead to her chin- quite an improvement!
Also of interest is the difference in Cicily's right and left middle ears. In the first slide you can see a small opening of an ear canal (it's in the middle of the darker white area on the bottom of the cranium-where the ear is). The second slide is Cicily's left side which has complete canal atresia and all you can see is the same darker white area without any ear canal opening.

Saturday, September 13, 2008

Final jaw distraction surgery scheduled

*This will be the last surgery for this jaw distraction, however as Cicily grows, most likely her jaw will not grow enough and she will need additional jaw distractions. *

On Monday September 29, Cicily will have the distraction device removed from her jaw. Dr. Singh will make a small cut in her cheek, closer to hear ears than her chin, to unscrew the distraction rod. Then the device will be removed from her bones and mouth. This will be an overnight stay at St. Joseph's Hospital. Cicily will then wear the helmet for another 1-2 weeks (yup- another) and then this jaw distraction will be over and done with! Very much looking forward to this surgery as it means no more wound cleaning twice a day!!!

Thursday, September 4, 2008

Photo Album - 22 months

Come and play!
(Obviously during the first couple weeks wearing the helmet before it really started to close her mouth.)

Reading books for bedtime. Maya loves to "read" books that she's memorized.

Waking up from a nap. Notice the diaper on the floor. Cicily is a fan of undoing her diaper lately and this afternoon she undid it and tossed it out of her crib! Fortunately I went in to get her out of her crib before we had any real messes.

Playing peekaboo with the curtains.