update from the slackers

They say no news is good news, but that might not apply in our case. We haven't posted in a while because we are having a string of really bad luck with this round of expanders. She had one expander replaced 2 weeks ago. Last Wednesday daycare called and she was leaking fluid, her cheek is concave and her suture line looks like it pulled apart prior to healing. What a mess of blue dye all over the place!

I am starting to feel like we made a mistake with starting this. The poor kid's head resembles a wheel of swiss cheese. I just hope we will have a positive final outcome. I am so worried about losing the expander option and having to get into grafts and permanent disfigurement.

We have an appointment Friday and will know what we are up against then.They may have to scrub this round of expanders, wait and try again. Either way I bet they will want to replace the cheek expander, fix the sutures, let her heal and try again. We'll let ya'll know when we do.

Nana's birthday

Today we celebrated nana's birthday. Nana was nice enough to let Sophie blow out the candles. Don't ask her how old she is, I'll tell you, She is a very sprightly 25.

Thanks to oakmont bakery for the wornderful (as always) birthday cake!!

Wedding Fun

Our friends were married this past Saturday at Millcreek Park in Youngstown. It was a beautiful wedding and a nice time as there were several friends from graduate school there. Sophie danced the night away.

Here is the link to a photo album.

It is on

Sophie is back in surgery. The child life specialist showed her how the anesthesia mask works this morning. She got to play with a cabbage patch doll and put it on her face. But she kept trying to put the connector end in her mouth like a giant paci. She was scared once we got to the OR but didn't freak out as badly as last time.

We hope to have her out of surgery by 1.

On a more fun note. Last night was the 112th feast of the assumption in little Italy, with a massive street party and festival. It was a nice distraction and great food, as always. we lit a candle for sophie, who wanted to blow out all the other votives! PrestiLs had cassata cake, which was fab. Will post pics from it later.

Prayers that she will come out of this safely, and that we don't hit any other complications in this round. Peas.

Wedding!

We are getting ready for the afternoon wedding of our friends Barbara and Ed. Sophie chose green polish to match her dress, it's her favorite color after all.

Cleveland bound

Surgery Monday. The current expander has a hard ridge that is pressing against the expanding edge of her scalp, and that is causing an ulcer (which is almost healed). Unexpectedly, her doc called to say he had found an expander that would give her skin a better chance of expanding without these erosion issues.  I still trust this team, but it would have been nice if this type of expander would have been used in the first place. It was also a hard decision because all they can do is optimize expansion, but nothing can guarantee that either way will give a good result. It should be outpatient, 'no big deal'.

If I wrote anything about my feelings about handing her over to the doctors to operate again, so soon, someone would surely fed ex me a gift certificate for a massage, or a date with a psychologist :)

Steelers Training Camp

Auntie E, Sophie and I made the jaunt to St. Vincent's College to watch the Back & Gold warming up for the season.

Spa time with the girls

What else do you do with three toddlers? Pedicures!

Daddy's pancakes

budding photographer

Sophie took these herself.

Back already?

Oh the joy of tissuen expansion. A few days into round 2 and a sore spot appeared on her head, along the edge of the top expander. This precipitated a trip to cleveland today, where we found out this ulcer may necessetate removal of the expander while the ulcer heals, then we would hae to start over. This is caused because the construction of the expander has a reinforced ridge that can compromise the skin. Ugh. Prayers that the ulcer heals without sugery are appreciated.

In the garden

Our garden, although weedy, is yielding tomatoes and beans. Sungold cherries are sophie's fav. We also watched the bees pollinate the sunflowers. The bees with the yellow pollen sacks really interested her. She might be ready to skip to first grade!

Sophie eating pop rocks for the first time