Friday, February 12, 2010

Long, skinny, and strong? Ballet!

Pay no attention to the lumpy things under my leotard...

3-4 year old ballet started last week and Ellie loves everything about it. Everything except the short nap that comes on ballet days. She gets to dress up, play with other little girls and then comes home to 'practice'. Excellent.

It is fantastic winter fun in a year with no snow (really), especially when our house is in epic shambles right now after the asbestos team spent the day here on Wednesday.

Reconstruction starts next week...

Sunday, February 07, 2010

Not so bad...

Yes, it has been a crappy month, but things aren't all bad:

At least the dinosaurs aren't attacking...

Wednesday, February 03, 2010

Just a spoon full of sugar......

The title of this post is in honor of Ellie's new addiction to Mary Poppins. A pretty good addiction to have if you ask me.

Sorry it has been so long since we have posted. Ellie is doing well but we have had a doozy of a month. I am going to do the list in bullet form just to be short and sweet.
  • Gus, the wonder dog, starts coughing
  • Fridge died, dead.
  • Our nurse who we can't live with out, called out for almost 3 weeks. (She had some serious GI issues that are getting much better.) And we did not get a replacement for that time.
  • New fridge arrived, got installed.
  • Fridge installer broke pipe in wall.
  • Rain in basement, puddles on kitchen floor.
  • Damaged by flood and removed:
  1. Carpet in basement
  2. Ceiling in basement
  3. Bottom 4 feet of basement walls
  4. Laundry room floor
  5. Storage room floor
  6. Kitchen floor, this means they removed everything in the kitchen: dishwasher, sink, stove, cabinets and fridge.
  • OH WAIT!!! That kitchen floor has asbestos in it......
  • Now we have no kitchen until Feb 10th when the asbestos removal team arrives. Then we can start rebuilding.
You think that sounds bad? Here is real kicker
  • Gus's cough is lung cancer. He only has months to live.
Sorry to be so sarcastic, but I have to laugh about it or else I will start crying again. Ellie has been really into Gus over the past half year. He sleeps at the foot of her bed (next to her TPN backpack, our TPN team just cringed.) Her favorite way to watch TV is snuggling with Gus on the couch. We are struggling with how we are going to explain the next few months to Ellie.

Gib and I have been afraid to talk about how well Ellie is doing for fear that will go to pot too. You know how they say bad things happen in threes? Well we are working on sixes and sevens and have been walking on egg shells waiting to see what else will happen.

Seriously Ellie has been doing well. We are still on 4 nights of TPN/Omegaven. At clinic two weeks ago they said she grew 2 inches but gained no weight. So, she is now on the weight gainer diet. We upped the calories in her Elecare and we are now kicking up the good fats in her diet.

We were taken aback this past month because Ellie first off is potty trained! Not at night, come on.. she gets a liter of fluid every night. But we still collect her urine and stool in a hat in the toilet so we can gage how her hydration is doing and better yet how her stools are looking. But starting at the beginning of the month we started to see honest "logs" when Ellie pooped.

Now, if "logs" don't sound exciting to you, then you are not the parent of a short gut kid. It was our first log in over 3 years. She also started pooping only once or twice a day. We were happy at first and then freaked out. Is she dehydrated? Overgrown? What could it be?

They laughed at us a little bit at clinic and reassured us that is was just a well functioning colon. WHOA. Mind Blowing. IT WORKS!! So, it took 3 years, we are not going to complain.

So now we fatten her up and get her off of TPN. I hope. Knock on wood, cross your finger, sacrifice a goat, do a dance around a fire, do what ever you do for good luck and send it our way. We need it.

I'm off to snuggle with my dog.