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.


Sharron said...

Go Girl! Enjoy Gus. I'm torn between dancing and feeling a large whole of sadness. Our thoughts are with you.

rafi said...

thanks for posting the facebook link, i am so pleased to check in on you guys. I'm so sorry to hear about Gus. i personally would wait till he is gone to say goodbye, let her enjoy the months without another worry. are you all living somewhere else while your kitchen is out??? how are you surviving??? congrats on the LOGS and all else going well, i can honestly say we are envious, and would likely have brought our son to the ER if we suddenly saw a log one day, lol, it is a day we hope for. Prayers and positive thoughts are being sent your way. Ellie doing well is a priceless blessing, and the rest of the annoying stuff is well...stuff.

The Hopeful Elephant said...

OH my gosh! What a month!

Hoping it starts looking up. I can't get my little guy to gain weight either.

Sarah Thomas, Nora's mom said...

LOGS = AWESOME!! I'm looking forward to the day when Nora cuts down some trees for us. Congratulations on Ellie's potty training!

On the sad note, I'm really sorry to hear about Gus. We had to say good bye to our 13 year old dog last year and it still makes me sad. But as we've all learned in the medical world, many times the docs under estimate the patient's outcome so hopefully Gus has a little longer than they expect.
Best of luck, Sarah

Anonymous said...

I'm so sorry about your pup! We had to put our dog to sleep about a week ago. It was awful. Don't think I'm crazy when I say this or mean but cancer is manageable atleast. I STRONGLY suggest the budwig diet for the pooch. I've read so many stories and heard a lot of great outcomes for dogs who are on it. Its really simple and doesn't hurt to try it.

I wish you the best of luck

Sarah Sullivan said...

I have been thinking of you all and hoping things were going well. I am glad to hear that things are progressing for Ellie. 2" is A LOT of growth!! Congrats on the potty successes.

I am so sorry to hear about your wonder dog. Howie (our black pug) is only 7 and I am already thinking about the times when he will no longer be here.

Good luck with the house and I will be sending some magic pixie dust your way to protect you :)

Sarah and the rest of the Sullivans.

the crucible said...

Damn, you kids better stay out of trouble, fo' sho'. I am doing a happy dance for Ellie's progress. If the karmic payment is no kitchen and sick dog (wow, is that a bummer!)...? So mad I missed the call-in TPN micronutrients thingy today; had to get Bo's pamidronate scheduled at the last minute (hospitals!). Hope there's a webcast or some record of it?

オテモヤン said...
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K8 from CT said...

When it rains it pours, right? Whoa. I read this on my phone at music class and had to hold back the tears. Give that Gussy an extra cuddle (and maybe a peanut butter kong?) from me. He has been such a trooper, such a good "first born" and big brother and understanding and adoring guy. Family-wide snuggle.