new equilibrium

Good news to report. Things are, for the moment, stable. I went back to work yesterday, wading through 200+ emails, picking up where I left off two weeks ago. Sophie is at Nana Nancy's, acting for the most part like a normal toddler.

She slept in her Cinderella toddler bed through the night twice, an amazing leap forward for the girl who didn't sleep more than 2 hours in a row for 14 months. Props to Nancy for taking this step I haven't been ready to take.

Sophie is currently obsessed with the Cinderella movie, much to the dismay of the rest of the family.' If I hear , Sing sweet mocking bird' one more time!', is a refrain repeated by  the women in the family. A funny note about this obsession, is that last night she woke up in the middle of the night saying, 'Cinder gaga, cinder gaga'. Silly baby.

We go this Friday for the first clinical appointment, where we will see how they inflate the expanders. Papa Nick is willing to learn so we an save the drive to Cleveland, maybe.

Thanks for all of your good wishes and prayers! 

Montessori gone awry

Dance party

Sophie loved Iggy Pop. She is punk rock all the way.

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The answer

I have decided what to tell people when they ask what happened to
Sophie. ' Baby fight club'.

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Home again

We just got home after a long day. Thankfully the necrotic tissue was
not infected and the eye is just swelling.

The team at rainbow babies is just great. Dr. Gosain said this process
is fraught with complications, but what we encountered should not
cause any setbacks. He moved the port and found a spot it can stay
under the skin, which is way better than an external port that she
could yank out. We are on for starting expansion on 10/2.

For now we will rest, heal and make pasta necklaces.

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How to leave a comment

If u want to leave a comment, here is how: type the comment, then
preview it. You must then enter the web security code (ie the wierd
looking nonsense word.

If you just enter the comment and hit publish it won't work.

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Heading back home

Sophie is out of recover, drank some juice and ate some fruit. The port was moved to her temple, so luckily it is still under the skin. The Doctor added 5 CC of saline to each expander while she was there, and she is recovering nicely. Now the long drive back home.

Out of surgery

Sophie is out of surgery, and all went well. Apparently the skin was streched too tight at the site of the port, and cut off blood flow to that area. I don't know yet if they just moved the port to a different location under the skin, or took it out and are letting it hang outside.

Mimi tries sushi

For the first time . 'it's tasty!'

Pumkin eye

We made Cleveland by 9 am, not bad. Bambina slept most of the way.
When she woke up her right eye was swollen and all fat, looking like a
pumpkin. I guess Sophie wanted to throw in an extra reason to make the
trip worthwhile.

I went back with her to the OR and held her while they adMinistered
the sleeping gas, getting a big whiff of it myself. I think they
should knock out the parents along with the babes. Much more humane.

Moving the port should take about 2 hours. Will update when we can.

Summer symphony

One nice thing about bring up before dawn is noticing the gorgeous
heaviness of the summer insect symphony.

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More surgery

Sophie's bandage came off yesterday and the one port looked funny. I
sent pics to the doc and sure enough we've hit a roadblock.

Surgery tomorrow at 11 am to externalize the port. Pray for smooth
sailing!

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Back To Cleveland

so if you look at the picture posted yesterday, on one of her ports for the expanders, there is a large red/black mark over it. Heather sent pictures to the doc who said the port needs to be externalized and to be there tomorrow at 10 am.
We're trying to sort the details out now.

Hat off

After procrastinating all day, we took her bandage off. Not as bad as I was expecting.

Happy to be home

A little black and blue, she is back, and slept through the nightast night.

Home sweet home

After a long week of being in the hospital ( which is one place where
time does slow down due to the zero fun factor) and convalescing at
grandma's, we were finally all home together again yesterday evening.

I think Sophie was happy to be home too because she slept through the
night for the first time since surgery. Yay!!!!!!!

This morning she was joking around with me , teasing and laughing. It
is so great to see her personality coming back and knowing she is
feeling better despite the fight clib look.

What a relief!

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Return to normalcy?

Thanks for the night out ladies.

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Picky eater

Going to rediculous lengths to get babes to eat. Single peas inserted
into the spokes of wheel pasta...I'd better go help.

Just a recovery picture

Less cranky now, probably because she is in familar settings.

Tired, cranky, and only one of us swollen

We are back in Pennsylvania now. We are in Ellwood City where Heather's parents live. Sophie is recovering quickly, outside of a brusing cheek, a bit of swolleness, she is doing all right. She slept the whole way from Cleveland to here, I ran to the pharmacy to get her presciptions. When I left she was gearing up to see the neighbor's cat.

We ended up getting some sleep last night. Due mostly to us asking the awesome nurses at Rainbows Babies to watch her for a bit so we could sleep(That was at about 4:30 and we really needed sleep).

Back to work for me tomorrow, Heather and Sophie will be staying with her parents till Friday just for a little bit of help. We don't have to go back to Cleveland until October 2nd, when if her incisions are healing nicely, we will start the expansion process.

On a plus side the Ohio Turnpike is getting easy-pass on October 1st, so that should make it easy to not have to deal with the tolls.

The un-fussy fussy baby

With surgery behind us we are in our private room. Sophie will not sleep in her bed for more than 20 mins, and just wants held, then she sleeps fine. Right now we are trying to figure out a plan of attack so we can be a bit rested for our drive back tomorrow. Oh yea she threw up everything she had(not much) post surgery, however I don't think that is too big a deal.

If worst comes to worst, my parents (hi mom) are staying in town and I wonder if I could sucker one of them into driving our car back if we get no sleep tonight. They don't have internet on their phone which means they can't read my evil plan until they get back(hahahahahahahahaha)

Out of surgery

Sophie just made it out of surgery. She is a it groggy and hasn't come out yet. All seems to be well at the moment.

Of course tonight may be a bit rough, but they only placed the expanders in and did not remove any skin so it hopefully won't be bad. Not sure how big this picture will be on the blog but you may be able to see the expander under her skin of the left cheek.

3:11 surgery started

Got got a message on the pager the lent us. Surgery has started, and all is well

No update

I am outside right now. There in no cell reception in the hospital, my phone doesn't like the wifi there so updates will be spotty I am guessing. Weird there is 3g right outside the door, they must block cell signals.

She's in

Just came to the waiting room after handing Sophie off to the anestist(I totally misspelled that but hey I am on my phone)

Birthday wishes

We are on our way to the hospital, the silver lining of a 215 pm
surgery is we could stay at mom's last night and be in familiar
surroundings where we could be comfortable.

It's funny to still have to study directions to Cleveburgh even tho
we've done this drive many times. Since this will become our weekly
drive it will become rote soon enough.

The hard part to the late start was that the last time the babe could
eat was 6 am. We had to pitch jello as 'breakfast' candy....who really
likes that stuff anyway? Props to Mimi Trudi for waking up so early!

This is too surreal, hard to believe this is the day. A shrink told me
once that fear and excitement elicit the same physiological response,
context makes the difference... I must be as excited as hell. A yoga
teacher told me once that breathe is life, and there is power in the
act of breathing... these are two thoughts are rattling around in my
head.

Today is my birthday. I know u r not supposed to tell your wish, but I
bet yinz can guess what mine is.

Thanks for all the good thoughts and prayers, we'll update later today.

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Packing it up

We couldn't make Cleveland last night so we are headed off about now. We don't have to be at the hospital until 1 so we should be able check into the Ronald McDonald house before we have to be there.

Althoughwe may as well be locked into doing this we still don't know if we are doing the right thing. We know the risk of melanoma, but it seems a shame to have to put Sophie through all this for something that can range between 3-20%. They also can't tell us, because they really don't know, if this really reduces the risk. It makes sense that it would reduce the risk, however not much in this life really makes sense.

I wonder if the Ronald McDonald house has a bar, I think I need a drink *sigh*

Something's in the air

Sophie must be pickingup something in the ether as we have been trouble getting her to sleep the pas few nights. I think she is just picking up on the unspoken tension in the air.
I am really not looking forward to tomorrow.

Eat!

The Italian in Sophie is coming out, her new mission is to feed the
dog all day, everyday.

Ziggy loves her.

Gone shopping

Heather just got back from trying to find new outfits for Sophie. Partially because she is outgrowing everything, and a new season is upon us. We also needed to find oufits with buttons around the neck.

She returned with many new outfits, Sophie thought this was the nicest and demanded it to be put on.

We're in

Just called the Ronald McDonald house in Cleveland, I am happy to say that they have a room for us. Since we have a follow up visit on Friday, they said it shouldn't be a problem to stay through Friday.

I am glad we have a homebase for while we are in Cleveland. Hopefully they won't hate us since we are fans of the greatest football team of all time (go Steelers!)

Finished product

The verdict is in and the home made Graham crackers are yummy!

They have a much more grainy taste than commercial varieties. Here are
changes to the recipe posted yesterday...

Add 1tsp cinnamon
Omit honey (only because I didn't have any)
Add an extra 2 Tbs of milk
Added 1tsp oil

Graham crackers

The east end food co op is having a challenge this month where participants try to eat one meal a day using locally produced food. Bring queen of local foods (a self styled moniker) I thought,'this will be simple'.

Ha! My first attempt to simplify this challenge occured while staring in my fridge, whose contents were almost nil thanks to vacation and a mishap where the freezer was open for 10 days while we were away. In August.

There went the pork shoulder from Hileman's Hog Farm and the whole pastured chicken from DuBios. Gross.

I digress, the challenge record sheet was pretty empty and I decided one ingredient at least one meal a day was enough. So tonight I realized neither our veggie dogs, baked beans or corn came from close to the burgh.

So I thought Graham crackers, made with local butter would count, no?

Here's the recipe I used. The dough is chilling in the fridge so results will have to wait til tomorrow.

http://smittenkitchen.com/2009/05/graham-crackers/

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Graham crackers

The east end food co op is having a challenge this month where
participants try to eat one meal a day using locally produced food.
Bring queen of local foods (a self styled moniker) I thought,'this
will be simple'.

Ha! My first attempt to simplify this challenge occured while staring
in my fridge, whose contents were almost nil thanks to vacation and a
mishap where the freezer was open for 10 days while we were away. In
August.

There went the pork shoulder from Hileman's Hog Farm and the whole
pastured chicken from DuBios. Gross.

I digress, the challenge record sheet was pretty empty and I decided
one ingredient at least one meal a day was enough. So tonight I
realized neither our veggie dogs, baked beans or corn came from close
to the burgh.

So I thought Graham crackers, made with local butter would count, no?

Here's the recipe I used. The dough is chilling in the fridge so
results will have to wait til tomorrow.

http://smittenkitchen.com/2009/05/graham-crackers/

Sent from my iPhone

Baby re-education

Read Sophie a new book about sleeping before naptime. Swear she looked
at me like she knew it was propaganda!

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Anthropology, medicine & the new president of Dartmouth

Dr. Jim Yong Kim and Bill Moyers gave a fascinating interview last
night on PBS. Dr. Kim has spent the last 25 years helping improve
delivery of life saving drugs for diseases like TB, HIV and malaria to
the 3rd world where health care spending averages $3 per person
annually.

Now, as the new president of Dartmouth he wants to add systems level
thinking to the delivery and outcomes to our health care system in
hopes of improving care in a country where health care spending tops
$7k / person.

You may have to copy and paste the link.

http://www.pbs.org/moyers/journal/09112009/watch2.html

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Miss thing goes to the aviary

This is a testing posting via email. Heather tried earlier, but it doesn't seem to like it. Anyway here's a picture

Out of the mouths of babes

My usual routine is to escape the house after dinner for a jog, especially on days I am a stay at home mom. After running my usual circuit which covers part of Swissvale (sketchy) and half Swisshelm Park (ok). I noticed that it was getting dark while in the questionable part of the hood and kicked up the pace towards the pricier real estate. Wanting to get home in time to read Sophie a bed time story, I made it back to the house in time for bedtime.

I was on the front steps stretching and I heard her little voice singing, "Happy birthday to you mamma'....with E leading the sing along. This was so sweet to hear, with my bday coinciding with surgery day.

Another funny thing happened today. We always joke that Sophie is a clone of her dad, they look very similar, and we all know E is a computer guy. I was checking my email and had to fire up the computer, which always attracts the babe cause she hopes to catch a glimpse of Tigger. As I was logging in I hear her say, "control, alt, delete". Wouldn't dad be proud....

oh, and GO STEELERS!

Pondering the practical

This post isn't going to have much good to say, kind of an open brainstorming, and a request for info from other parents who have already gone through this. If you don't know what Sophie is about to go through, a link is here. I am not posting the picture to this page as you may or may not decide to look at it. I personally find it a bit disturbing.

back yet?
good.

So the practical I am pondering are listed below

1. What kind of shirts can we get to put over her head?
2. Can we go out in public?
3. How do we get a kid who doesn't like hats to wear a hat?
4. What should we say when we get the inevitable questions?

I don't think we are going to hole up while this process is going on, and I am sure we'll sort it out. These are all just things that we have been thinking for quite a while, and now that it is almost time the questions arise.

Sorry for the run-on sentences, and bad punctuation I did study computers after all. At least there is spell check though!
E

T minus six days

We've been thinking about starting this blog for some time now, so that our loved ones could enjoy the cute hi jinx of little baby Sophie. We really wanted to give a feel for our life and the normal ups and downs of having a toddler without focusing on her surgeries.

Alas, we were having so much fun and so busy with our regular days that we didn't get around to starting this sooner. Hopefully there will be a balance of regular stuff as life isn't going to halt because of a medical condition.

For those of you that aren't sure what a giant nevus is, here goes the $.02 description. A nevus is essentially a giant mole which has the potential to turn into melanoma. For this reason, a whole list of pediatric specialists insists it must be removed. Medical stats are hard, but the research shows a 3-20% chance of cancer.Wide range, huh? Click here for nevus.org.

Sophie's nevus covers about 20% of her scalp and forehead. Making her wear a hat or stay out of the sun will not help, the malignant potential is inherent to this type of cell. We should also stress this is not being done for cosmetic reasons. Nobody knows what causes this birth defect, but it is not genetic. Maybe it was that cheeseburger I ate during pregnancy?

To remove the nevus Sophie has to undergo a series of surgeries where tissue expanders are placed under the skin and inflated over 8-12 weeks. This will create 'bubbles' of good tissue which will be used to reconstruct her scalp and forehead.

We have chosen to travel to Case Western's Rainbow Children and Babies in Cleveland after an exhausting period of research when her original surgeon left Pittsburgh's Children's Hospital.

Tuesday, September 15 is the big day. Check back here for updates as we jump down this rabbit hole. I promise it won't be all medical, we'll put the good stuff in too.