Wednesday, June 30, 2010

I've been wanting to do this since I was a baby

That is what she said once she realized she could climb to the top of the car.

Sunday, June 27, 2010

Thursday, June 24, 2010

Science center, unwrapped

We had our first successful outing sans diaper!

Wednesday, June 23, 2010

Meeting with Childrens Hospital Management

Fate has an interesting way of throwing you a bone you don't know if you really want or not.

We were at sushi joint a month back and happened to start chit chatting with the folks at the table next to us. Despite the sake, our proffessional affiliations came up and it turns out they were a board member and a director of one of the Childrens Hospital of Pittsburgh  fund, respectively. Without getting into details we mentioned we take our daughter to the Cleveland Childrens. Business cards were exchanged.

We ended up being contacted by an upper level administrator who handles complaints, which are obliged to be reported according to a state department of health protocol. As those of you who know us personally may remember, we had a few bad experiences with Sophie's two surgeries there. We decided to let things go at the time, as we were so focused on getting her good care, and afraid to complain in case we needed to end up take her back there. With a multi-year treatment plan, and so many surgeries, I didn't want the one wielding the scalpel to ever pause in the OR and think, 'ah, it's THAT family'....

So I find myself in the offices of CHP. The email conversations had been cordial and low key, I thought we were exploring ways that Eric and I could get involved with a parental advisory committee. My job doesn't require power suits, but I wish I would have dressed to impress that day. Something about the exchange made me feel like such a kid, instead of a woman advocating for her family. The response I got to our story was very interesting, she seemed nervous. Kept going back to one really disturbing incident that may need to be turned into a formal complaint with formal action. She has to talk to the head uppity up and get back to me. Suddenly I wonder if I need counsel?

Ugh! We will see what happens. I guess I am so focused on getting this all behind us and forgetting it. I don't want anything but smooth treatment for Sophie. Part of me feels that if we keep our intentions and hearts pure, she will heal faster, avoid complications and dodge any rogue cancer cells at puberty and for the rest of her life. But the fact is: breakdown in hospital procedure and protocol is a problem that needs the whistle blown on it and has nothing to do with my superstitious nature.I am always trying to gloss over hardships and blow it off, so that 'everything is ok'. But having a child with special needs is forcing me to be able to be vocal about things are not ok, or normal.. Guess we'll have to see what happens next.

Tuesday, June 22, 2010

Tuesday, June 15, 2010

The newest trend

While looking like she might passout at a restaurant, Sophie is sporting the latest in toddler fashion. Accessoring (is that a word?) her wrist with zoo animals silly bands.

Sunday, June 13, 2010

Sophie makes a friend at the arts festival

Festival flower

The talented balloon artist made sophie a beautiful flower.

Sophie & the anarchist

sophie busted a move to the angry young man's music, and he started playing a happier tune. :)

Sneak shot at the arts festival.

Saturday, June 12, 2010

Angry face

Nerd

That is a usb stick on the necklace she is wearing

Getting ready to bike

I had to fix the wheel on Sophie's trailer. She loves the bike pump. She is presently putting more air into her nose.

We've also found a handy bottle holder we didn't know existed before.

Friday, June 11, 2010

Tortoises

We had to take sophie for a pre op in cleveland today. We have been enjoying the break and glad we still have until the end of july to play. We stopped @ cleveland botanic garden to see their exhibi, which includes animals in with the plants. Nice dynamic exhibit. I bet we will have to carry her kicking and screaming out of here!

Sunday, June 6, 2010

Saturday, June 5, 2010

Junior paleontologist

Is it really safe to let a bunch of pre-schoolers run around with 6" pieces of metal?  Of course there is one boy attacking the rock like sharon stone with an ice pick. And sophie is following him around like a puppy. Is this the start of a bad boy complex? Hopefully that is just projection!

Thursday, June 3, 2010

Pictures of the trip

We uploaded our pictures to shutterfly.

click here to take a look