Wednesday, 22 October 2014

Hiccups

I've been delaying writing for so long because of nothing. Because of something. Somethings. Because it was easier for me to stay silent. I haven't been well and I am slowly bringing myself back. Back to health. Back to the light. Back to life. It was a long spring and a hard summer but I'm feeling much better. I want to write about my experience in depth, and I will at a later date, but for now we have had a little hiccup. A tiny hiccup that is probably nothing, but until all avenues have been explored, it's still scary. Eleanor had a routine ultrasound last week and something showed up on her liver. She's never had any issues with her liver, which I am so grateful for. It seems that once adrenal cancer hits your liver, the likelihood of living cancer free greatly diminishes. She had blood drawn and her tumour markers were nonexistent for adrenal cancer and any new liver cancer, so we are hugely relieved, and this DOES NOT look like a sick kid: 



Still, we are going in for an MRI tomorrow morning to get a closer look. If you could hold my little (big?!!!) girl in your thoughts and prayers tomorrow, I would really appreciate it. Its probably nothing. In my heart of hearts I feel it is nothing, but her Li Fraumeni means we have to take everything seriously. 



Even if she doesn't. She's too busy being a preschool-dominating, pink-wearing, Minnie-Mouse-and-princess-loving, superhero superstar!

Sunday, 1 June 2014

A New Home

All dressed up and ready to go

Climbing the front steps...

Penny got left behind

Come on sister!





Atia was a bit stressed, but she liked the porch





Don't worry - she fits in most cupboards. 

Penny did not fit in the freezer. She sure did try though



We are so happy to be taking this very concrete step in our lives. 



Friday, 18 April 2014

Good(ies) Friday!

It has been far too long, I know. Our computer died its dying breath recently and I'm back to typing on my phone, which I don't love. A lot has gone on in the past two months - mostly good (we bought a house!) some not so good (2 stomach bugs = 2 emergency shots in her leg) - but today I just wanted to upload some photos from our Easter egg hunt! We have watched this community event from the sidelines for the past two years and were really excited to take part this year. I wasn't sure if she would get the concept, so I did a practice run last week. It was completely unnecessary and created a little tension in the house! Everyday since she has put on her egg hunting hat and asked for Easter eggs. Whoops. So she was REALLY ready for today. And the girls looked really great. 




Bouncy "castle", anyone?



Girlfriend never fails to amaze me. I thought she would hate having her face painted. She loved it! Here she is getting a flower painted on one cheek. 

Then she went back and asked for Spider-Man on her other cheek. Uhhhh....

The hunt is on!



This is her "cheese!" face. It is a happy face, I swear!

I'm going to dig out my little net book from our "stuff that came home from the hospital" box and try and write more updates. I miss writing and I have a little time. Not much, but a little. Don't hold me to it; it seems every time I embark on a new project, Eleanor gets sick or Penny goes through a "wonder week". They sure do keep me busy, those girls!


Friday, 14 February 2014

Sweet, Comic Valentine

Your looks are laughable

Unphotographable

Yet, you're my favourite

Work

Of art

It's been awhile so here's a quick breakdown of what's been happening:

Potty training? Check
Big girl bed (mattress on the floor)? Check
Preschool enrollment? Check
Long term follow-up (appointments every 3 months vs 4 weeks)? Check
Speech and language catching up? Check

Happy Valentines Day!



Thursday, 26 December 2013

Rowdy Rowdy Eleanor Goudie


I started this post this morning and it was titled "Simply Having a Wonderful Christmastime" and was basically just photos from the past month. I didn't get a chance to finish it because Eleanor woke from her nap a little off and we have spent the last 5 hours watching her like hawks. The last four days have been very busy. We stretched our girls pretty far and had them out late and going all day. Penelope was pretty obvious when she got fed up. She would cry and cling tightly to me or Kris and not make eye contact with any admirers. Eleanor, however, was the centre of attention. She was bossing everyone around ("more Jingle Bell Rock?") and was the life of every party. She loves the spotlight and turns into a little Energizer bunny. She just keeps going and going and going and going...
Bossing her beloved Jack
But it seems that today she really hit the wall. She woke up groggy and played a little bit, but then was content snuggling and watching Winnie the Pooh. She nearly sat through the entire thing, which is unheard of for her. Kris made her favourite yummy dinner (yummy chicken - everything is yummy at the moment) and she wouldn't touch it. Her temperature was high, but not quite a fever. We gave her some Tylenol and another dose of cortef and waited an hour. Nothing changed, so we gave her another dose of cortef. That seemed to do the trick and about an hour later she started eating and drinking again. Her temperature came back down to normal and she perked back up. Kris and I had a moment of "what the fuck?" because seriously? Too much Christmas sends this kid into adrenal crisis? She has had an incredible year and has been in such good health, I feel totally overwhelmed when something like this happens. I hope when she wakes up tomorrow she is back to her regular self. We are cancelling the rest of our holiday parties, though! Girlfriend likes to pretend she can keep up with the big boys, and she is such a good little actress I thought she could.

***

I've spent a good deal of time over the holidays thinking about the ghosts of Christmases past. We have had four with Eleanor, FOUR. That feels like so many for such a tiny girl. The first she was only two weeks old, and I spent most of it lying on the hide-a-bed in the tv/playroom at my parents house, watching episode after episode of Mad Men and nursing Eleanor. It was pretty awesome. The second was awful. We were discharged from Children's with the intent of having a quiet Christmas and instead ended up in the PICU at Vic General and watched a young man die. We got out just in time to celebrate, but ended up back in the hospital on Christmas Eve when she pulled her NG tube out. Last year everything was good, but we had no family around, so it felt a little lonely. This is the first Christmas she has been healthy and I guess I got a little carried away with how much she could handle. It doesn't help that this holiday season came right on the tail end of a very busy month of hospital visits.

Anyway, here are some of the lovely photos of our very special Christmas - our first with Penelope!
Who eats, and eats, and eats...



The carousel at Butchart Gardens



 The Festival of Trees at the Empress


Gingerbread!


Playing til the breaka breaka dawn at our old friend's Christmas Eve party (well, til 9:30 but it might as well have been the break of dawn)

 Oh, speaking of... this was the sunrise on Christmas morning. You can almost hear the angels singing :-)


These dolls will be the death of me...




Happy Holidays!