12 April 2009

New Lips = New Words: The Marvel of Willow's Surgeries

Peek-a-boo. Hanging out in the back yard, down at the river's edge.

Here is a picture of the dock which floats along the shore of our back yard (water level pretty high right now). Our neighbors dock their pontoon here during the summer.

Willow learns about Chloe's favorite thing: belly love (i.e., rubbing her tummy).

Kissing Chloe. So gentle (most of the time)!

Willow sketches the tree branches, before leaf-out.

Really happy or really sad: there doesn't seem to be many "inbetween feelings" this past week. She's changing a lot; growing emotionally (this includes running headlong into the terrible twos).

We made our first attempt at pre-school (Early Childhood & Family Education classes provided by the state of Minnesota). Parent's stay, which is important for Willow right now.

Willow had her 2-week post operative check-up (see also, blog post below). Greeting Willow, above, is a picture of the PNP for the Cranio-facial Specialty Team at Gillette Children's Specialty Hospital.

Here is a picture of the "allergic reaction", though in this picture it is already starting to moderate. Willow's surgery is perfect (except for the increased redness and swelling). I may have mentioned this before: the surgeon has cautioned us that it will begin to look worse over the next month or two; then, over the year, it will start to look better again. She now has a beautiful little "cupid's bow"on her top lip, thanks to the skill or her surgical team, but it is hard to see because of the irritation.

Daddy and Willow hard at work on their laptops.

Willow, Chloe, Gus, and Mom go for a walk (self-portrait).
New words: March 31st, just a week after surgery ... out of the mouth of babes' came something that sounded like 'ma ma'. I watched carefully, and her lips were moving together; this is something she was unable to do before. But, she hasn't really tried to articulate the letter "m" again. She is making lots of new sounds, including "clicking" with her tongue. She has found her voice (screaming, just for fun); I occasionally see her feeling her top lip, with her tongue. She stares at herself in the mirror, as she did before surgery (what does she see?)
She also says "oy, oy, oy" in rapid succession. As of this past week, she has started saying "hi", using it in context (and for goodbye). Happy Passover. Happy Easter.

09 April 2009

Melted Together (Surgeon and Cleft Staff so Talented)

Hi. I'll post some pictures very soon. I have had some other items to attend to, and utter exhaustion (lack of creativity) at night have hampered my ability to post.

Miss Sock Monkey is looking a little better; the redness is beginning to fade and the random infection (reaction to something related to bandages or skin adhesive) is clearing a little each day.

I am not exaggerating when I say that it is very difficult to see the incisions themselves: it appears as if she was melted together. Simply amazing (a pediatric dermatologist, who examined her upper lip this week, wasn't sure what surgery she had? He couldn't tell and asked the surgeon if she had stitches: the surgeon replied that she actually had hundreds of them).

Our doctor cautions us, however. He said it will begin to look worse before it looks better again. It will take a year for the healing to be complete.

02 April 2009

Miss Sock Monkey

Willow has a very swollen rash and looks like a sock monkey.

She has had a reaction to either the dermabond (used on her entire upper lip), or … who knows. After viewing her picture, and consulting with each other, they had us come to the hospital last night for admittance (but then ended up releasing us). They brought in their infectious disease pediatrician to take a personal look and swab it; cultures so far are positive for staph—the kind that is hard to treat (we all knew she already had it) and yeast … awaiting swab for herpes simplex. Regardless, we are treating her for all and not waiting on further results of the cultures (meds will stop if something doesn't grow). She’s so swollen and red (as if the surgical incisions weren’t enough).

But, she’s happy and her super, kooky, nutty self (it is me that is stressed out about it … and wondering when it will go away). Positive thoughts or prayers, please.