We're weird

Christmas kisses

Sophie's new ride

Nana and me

decorating the tree.

Holiday Fun!

What a fun filled weekend, with holiday preparations and decorating. We took full advantage by getting a tree, going to the Lawrenceville cookie walk with the Aunties (btw Wild Card on Butler Street is my new fav stroe), making goofy elf skirts for next week's Jingle Bell Run to benefit the Arthritis Foundation, and family portraits.

If you want to support the Arthritis Foundation and my crazy idea of running around the 3 rivers in sub zero weather, donate to team Rudolf's Runners by clicking here: http://jbrpgh.kintera.org/faf/donorReg/donorPledge.asp?ievent=338932&supid=314892969

Ho! Ho! Ho!

Jingle bells!

A night on the town

All done up with no where to go

Donate for my jingle bell run team!

This holiday season I will tie bells to my shoelaces and dust off my reindeer antlers as I participate in the Jingle Bell Run/Walk® for Arthritis, a 5K fun run/walk to benefit the Arthritis Foundation. And YOU can help, too!

Won't you sponsor me in my effort to raise funds to fight one of the nation's most common causes of disability – ARTHRITIS? Arthritis affects more than 46 million Americans, including 300,000 children, costing the U.S economy over $128 billion annually. The Arthritis Foundation needs our help.

http://bit.ly/hKxD7i

Thanks!

Decorating

We're busting out the Christmas decorations and Sophie dressed up just like them and decided to be a decoration herself.

bouncing Sophie

this didn't want to upload via email so hopefully it won't load twice

What is about to happen here?

Video will follow soon.

Crazy Thanksgiving

This is Sophie riding a wave at the beach

The holidays are coming!

Apparently, Sophie isn't as scared of animatronic critters this year! She still has some warming up to do with Santa, stating that she will sit NEXT to him, but not ON him. Fair enough!

Interesting morning

Sophie shocked both us by telling us how to spell her name. Then she did it

Cupcakes!!

First day at a new school

Sophie went to my high school Alma mater this morning to give Nana a few hours break. They have a class where high school students watch kids for a few hours. She looked nervous at first

Fall time fun

Playing around in the leaves at frick park.

Birthday party morning

Sophie's birthday was yesterday but we are having the party today. We had to let her open most of the presents from us. I think she likes the book

Super Mega pinchy monster

Dancing queen

The flower girl

Blowing kisses

Someone's sleepy

And someone else tucked them in.

Dancing queen

Sophie at. A birthday party

On the way home

We just got discharged. Whoop, whoop. I hope we r home by dinnertime.

Sophie is doing well, and hasn't stopped eating for the last 3 hours. Here's to a speedy recovery, bambina!

Happy birthday mommy

The kitchen at the hospital was nice enough to bring Heather a cake for her birthday, but Sophie got to it first.

A birthday surprise!

Tomorrow is my birthday and I was pretty bummed to be spending it in hospital for the second year in a row. We had no idea what we were in for when we got here this morning...

So imagine my surprise when the doctor told me in the post surgical consult that he was able to remove the nevus and take the expanders out.

I was dumbstruck, and said,'and you installed new ones?'. To which he answered, 'no, they are out.'

I almost jumped accross the table and grabbed his hands and said at least three times, 'you mean it is gone? The whole nevus is gone? And there aren't anymore expanders right now?' He must have thought I was daft!

What a milestone. This wasn't even in the realm of options. We didn't expect to get here until at least early next year. We don't expect any more surgeries for about a year.

This is truly a wonderful surprise. We are staying @ the hospital tonight, and hoping for a speedy recovery, and a trip home tomorrow so we can celebrate.

Honestly, this outcome had to have been influenced by all the prayers, good thoughts, reiki and positive love coming from you all. THANK YOU!

She is in

What a day, and we are just getting started! Surgery is starting late, very late. I asked the doctor if he needed to eat something to power up for bambina's procedure. After talking to anesthesia, today's procedure is a lot more serious than I realized. Hopefully, in the next hour we will know what direction they are taking this in. If the skin is strong enough, it will be longer to remove some of the nevis. If not, they will swap the faulty expanders and we will be out. Either way, it looks like we are going to be staying overnight.

Updates as we have them.

Here we go again

I am starting to feel like I should get a job as a trucker running something between Pittsburgh and Cleveland. Honestly, I should be getting paid for the amount of time I spend on the turnpike. That, there is no way to mitigate my carbon footprint right now.

Anyway, sophie goes in for surgery @ 1130 tomorrow am. We are hoping that we can come home tomorrow. We have no idea what we are in for, it could be an expander removal, an excision, a singal or dual implantation, perhaps blood transfusions. Ugh.

So all of the females in the family are on the road, hoping for an easy in and out and to not loose the options of expanders at this time or in the future.

Poor kid, she is wise to this game. I am throwing a pity party).

Updates forthcoming.

Ballerina

The Update

As has been said here. Sophie has been having issues with this round of expanders. After having her wear a compression bandage all week (with a sock in it for just a little bit of extra pressure) to try to correct her issues. We're having surgery on Tuesday. They are planning on removing the top expander, fixing the cheek expander, and putting in a smaller on in the forehead. The doctor thinks he may be able to get all of the nevus in the hair growing area of her scalp, so this hopefully isn't a total loss, and we'll just have to correct her hairline.

Here's to hoping all goes smooth on Tuesday.

Playing with my phone

Got a new camera app for my phone so I took a cute picture with it.

thanks everyone

for all of the prayer and good wishes. We are in a waiting week to see if Sophie can heal up enough to expand. Her cheek expander failed, so replacing that will depend on the ability of the scalp to withstand stretching. Either way we are looking at surgery in the near future.

She is in good spirits and energy despite this, which is fab. She is more and more awareness of this whole mess and it has become part of her daily consciousness, due to her high IQ :)

We go back Friday and will have a gameplan then. We will attempt to get back to the cute pictures and fun stuff sooner rather than later! We have some good ones of her from Labor day weekend we'll get up when we get a minute.

Dog time

Sophie is login on the dog today

Fair fun

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

Sophie dressed herself

Here is a nice picture of what happens when sophie drsses herself. What you really can't make out however, is the halloween pants she is wearing right above the frog boots.

Welcome home!

Heading home

We're all checked out, and heading home. It'll ge good to be back home

Discharging soon

We had an ok night last night. The couch in the room didn't pull out, but we brough a termarest we use for camping for one of to sleep on the floor. That didn't happen.
We spent most of the night switching between the couch and Sophie's bed and she slept the whole time. I actually almost feel rested.

Sleepover

Sophie is more wakeful, watching nemo and madagascar while eating crackers, milk and pancakes. They are threatening the iv again for fluids, so I am encouraging her to drink. Things are stable and we are hopeful for continued improvement and that we will be able to do pain management at home tomorrow. Let's hope for some sleep tonight!

No update

Except it looks like we'll be staying the night here. Sophie is really just sleeping so we can't tell how she would be on a 3 hour ride home

In recovery

Sophie is in the recovery room, vitals are ok but borderline, should improve over the next few hours. She is having a morphine induced nap. Thanks for all the prayers, keep them coming!

She's out

We're in recovery right now. She is doing well. It depends on her, but we may be going home tonight

Surgery started at 8:45

We're not expecting it to be over until 11ish or so

She's in

Not much to report except that she is in, and under. There is a good chance that we might be coming home tonight.

Dear Pittsburgh friends, gifts of beer are a wonderful idea.

In cleveland

For the big day. Sophie is so excited to be in a fancy hotel with fancy pillows. This would be fun if we didn't have to show up at the hospital tomorrow!!

Beauty queen

Tie dye beauty queen

Roller skating

I had something witty to say, but the my phone ate that message, and I forgot what it was.

We took her roller skating, and she liked it. After we skated on the carpet for a bit that is.