The kind of pretending Cicily's life inspires...

Maya is a huge pretender - from being chipmunks to "you're the little girl". Every day we're somebody new. I love the variation that she comes up with from being a big sister to Cicily. Two latest examples:

A couple weeks ago I was feeding Cicily orally in her high chair and Maya says, "lets pretend that we both came to this house and you're the feeding therapist and I'm the cleaning lady." Ok, I didn't even know there was such a thing as a feeding therapist until 16 months ago! I'm still not sure where the cleaning lady thing comes from though - is that what your role is Grandma?? :)

Yesterday we were enjoying the great weather outside and our wonderful new backyard. Maya, Cicily and I had their two trached Cabbage Patch dolls outside with us pretending something. Maya says, "let's pretend our babys' trachs came out suddenly while we were just sitting here, ok." So she unstraps the trach band and pulls out the trach and then puts it back in again. I of course, did the same as instructed, as I was laughing!

Photo Album - 16 months

Happy 30th Birthday Daddy!!!!
Sleeping time has been much more interesting lately. Cis loves to roll over and pull herself up on the bumper of her crib to see what she can see. We always keep her door open so when she's peeking out and we walk by she gets really mad! It's cute to see her little head pop up though.

Can you tell we got a videocamera recently? I'll have to remember to keep taking pics too.

More good news - jaw distraction

At Cicily's appointment with her craniofacial plastic surgeon, Dr. S, on Tuesday we learned that the jaw distraction (mandibular distraction osteogenesis) is a go!! Sometimes the jaw bones or joints (temporal mandibular joint) aren't developed enough to distract a jaw. So before they can distract, they need to graft bone and let it heal. Dr. S said Cicily's bones are all very small and underdeveloped (hypoplastic) but that they should be able to withstand a distraction and grow well. YAY!!!

How does jaw distraction work? Here is what I've gathered: There is an initial surgery where the lower jaw (mandible) is cut on each side and the distraction device is put into place, which consists of metal rods and screws. Then the patient goes home and the parents turn the screws on the device typically once a day for 2-3 weeks. This moves the bones out and down, leaving a gap in the bone where it was cut. For the next 2 months the device stays in place so that new bone can grow in and fill in the gap. Thus lengthening and growing the jaw bone. Then 3 months after placing them, another surgery is done to remove the distractors. Distraction is done - Happy Day!
To see an awesome video explanation, go to http://www.pedsent.com/surgery/swfs/distraction/distraction.htm Click on "How distraction works"

So, with Cicily now they send out her CT scan to have a silicone 3D model made of her head (I'm picturing beauty school practice heads). Once Dr. S gets the model, she'll take the distraction device she thinks will work best and actually do a "practice surgery" where she cuts the model and places the distractor rods and pins and then turns the pins to see what kind of movement she can get with that device and a model of Cicily's jaw. Then, if it works out well, we're ready to distract. Surgery will probably be scheduled for April. And the hope for this procedure is that it will make eating easier and create an adequate airway and make the trach unnecessary.

CT scan

This is a lateral (side) view of Cicily's head. This is one slice of the 3D CT scan she had done in the hospital. You can see her lower jaw is quite recessed. If you think about how your teeth match up vertically, her teeth don't at all. On her mandible (lower jaw) her molars are back almost to where your throat should be. 'What are they going to do about that' (as an infamous pediatrician asked me when Cis was 2 mos old) - mandibular distraction osteogenesis (aka: 3 months of hell for hopefully a HUGE payoff!)

The Perfect Palate!

I'm not sure that it's "perfect", but it sounded good for a title. Cicily's palate is healing beautifully. She still has stitches dangling down all over, but no holes! We saw Dr. S yesterday and she said it looks great and she should be past the point of developing any fistulas (little holes). So, the surgery obviously went perfectly, and honestly it's all been much better than I ever hoped for. I have to say, Cicily and our family have been blessed with a lot of best case scenarios lately. Cis has to go through a lot of crap, but she is certainly blessed a lot along the way.
One HUGE benefit of having a palate is that now Cicily has normal drool!!!! No more "bubbles". We only use the "bubble cloth" (cute crocheted burp cloths) once a day or so instead of 5 times an hour! I figure she must have had nasal drainage going down into her mouth and mixing with saliva, creating thick bubbles. This benefit was not expected and it's great! The bubbles actually didn't bother me that much, but now that they're gone, it's nice to have them gone!

A Day at the Park

We spent our afternoon at the park yesterday. Cicily is feeling so much better 2 weeks post surgery. She's pretty much back to normal. We fed the ducks at the pond and then went to play at the playground. Cicily loves to swing! It was a beautiful day so we got some good pictures.

Photo Album - 15 months

Tea Time! Cicily loves her big sister Maya SO much! The day she got back from the hospital from her surgery, she saw Maya and forgot all about her pain and arm braces as she lunged and clawed her way over to see her big sis. It was very sweet.
Reading books before bed
Playing in the backyard
This is what happens when Cicily's feeding tube comes out while she's taking a nap and eating. A bit of a mess!
Crackers! Cicily actually chewed on 2 crackers. Nothing was swallowed, but she was loving chewing on them.

Looking like such a big girl