Berry Bonanza, in photos!

This post is delayed!

20 lbs of cherries, 30 lbs of Blueberries... 50 pounds total!!

German engineered cherry pitter. Love it!

Don't love the purple hands!

Little Helper.

Cherry-blueberry Jam! Why didn't I buy a canning set-up ages ago?!

Water bath processing

Gorgeous

Blue-cherry-cran Juice cooking!

Jam!

Big Jam!

Cooling

Pop-tarts in the making, with Blue-Cherry Jam filling

Out of the oven, sprinkled with sugar!

Om-nom-nom

All clean, ready for bed. Never again!

Sorry!

Where is the time going?! I'm falling behind in my posting, and I apologize for that. Life is great, but so very busy. Saturday, was the Heart of Ladner Night Market, and did Ladner ever show its heart. We were blown away by the turn out, and the support we got at our booth for our One Small Step walk in September. We gave out all 100 of our marketing postcards, all our brochures, and sold out of key chains and necklaces. I still have hair bows left, but they'll be gone on the day of our walk. We raised $235 in 5 hours, which we thought was AMAZING. We went with a goal of raising awareness, and selling everything we had to make $100. $235 more than doubled our goal. But, then an incredible, beautiful angel of a woman offered to MATCH our donations, meaning we ended up raising $470! In one night! From a little charity night market! Blown away. We were so happy. So happy to get out and spread the word about PWS. So happy to introduce Ellie to her community. So happy for everything, and for the opportunity to share our story. Speaking of sharing our story, I forgot to mention that I was interviewed last week by The Province, as part of their Inside St. Paul's series. I'm excited to see what ends up being printed, and if the photos they took of us are any good :) I'm getting totally pumped for our walk in September. I did a rough count, and it looks like we will have over 100 people in attendance! That's pretty awesome for our first go at hosting. Ellie is still continuing to amaze us off bipap. Can you believe she's OFF her machine??? SERIOUSLY?! She's been sleeping in her own room, for the first time in her life. I am so happy about it, it makes me teary eyed. I have a lot of photos to post, but washed, and dried my SD card, so seeing if I can pull the photos off it, or whether I'm hooped. Hope you're all enjoying your summer. <3

Home tomorrow!

Home tomorrow! It will only have been four nights, but Dr. S thinks that Ellie will be fine, so we're being discharged. I'm not sure what to make of it, since Dr. D said two weeks is how long it would take to make sure she's alright. We do get nursing coverage for one week from tomorrow, which isn't much, but at least someone will be watching her. We've been told that it is possible we will lose all our At Home funding, which effing sucks, because they provide a ton of supplies we will continue to need as we move forward (like oximeter probes, needles, and suction stuff). We'll see. In any case, I certainly am happy at the thought of having her home again, having her in the hospital is stressful beyond words, even when she is healthy. A bonus, when I came home tonight, my One Small Step postcards and posters have arrived! I am SO excited to start distributing them!

First couple days of hospital stay

Sorry for being out of touch! It's been a stressful week in our household with Ellie being in the hospital, and hubby on night shift. Jakob would much rather be outside than visit his sister in the hospital, and Ellie is not impressed at being left without her family. She's happy to have the nurses, and her fan club, but it isn't the same as having her mommy at night. Sigh. The first night was good, and I'm trying to get us ready to go in to see her this morning. I'm sure last night will have gone well, too. If she continues to do well, they'll send us home after a week. From there, we will do weekly studies, using the hospital oximeter, to see how she does week on week. There's no way I'm going to feel comfortable having her OFF her oximeter at night, especially not after hearing about the loss of a 10 year old with PWS this summer, due to an overnight obstruction. We took Jakob to PlayLand yesterday, and he LOVED it. He didn't want to leave! Between walking all day, and being stuck in no-natural-light-TCU, it made for a long day.

Hopes for the weeks to come...

I just got off the phone with Dr. D. We are going to admit Ellie for one to two weeks, to figure out the situation with her bipap. Either she's going to be discharged on it, or off it. We're obviously hoping for the latter. How amazing would it be to have our baby back? To have our privacy back? To not be dependent on medical equipment! Dr. D said that that some of these kids fool the sleep study, because there is a certain amount of body memory involved. Because Ellie's been on bipap for months, it could be that she's just used to the feeling of breathing, and does it on her own off the bipap. It can, she said, take up to two weeks to lose that memory and start obstructing again. So, that's the point of the admission. I mentioned my small concern about losing all the progress she's made with the bipap, but Dr. D seemed to think that Ellie is way stronger all around, and reminded me that the last couple of admissions to ICU were because of the bipap. If she doesn't need her bipap anymore, Ellie's smoosh face would go back to normal. Ah, lots to think about, lots to hope for. Could it be possible that my wee girl might eventually sleep in her own room?! And, am I ever glad we decided to host our own One Small Step walk! Now we know she won't be able to go to the Burnaby one!

OSS Merchandise!

I am SO excited! My girlfriend Pam set me up with a bunch of hair clips, necklaces and keychains, to raise awareness of PWS! Going to have them for sale at a booth at the Heart of Ladner Night Market on August 18th!

Sleep Study 2012

We're here at the hospital. Ellie just woke up from a nap, looked around, realized where she is and started beaming! Girl sure loves her home away from home!

7:01pm
We are in Ellie's room, waiting on all the machines to arrive. No one said anything about bringing Ellie's bipap, but apparently they want to do a split study. The first half of the night she is going to be left off the machine. When she fails miserably, like the doctors apparently think she will, they will put her on bipap and monitor her on that. Good thing they've got a half dozen machines on standby!
Taking photos on my camera, will post tomorrow!
Will continue posting through the study.
Wish us well!

8:19pm
All set up. Time for a little girl to sleep.

Chest and abdomen straps, leg sensors, heart rate monitor, and oxygen sensor set up

19 probes on her scalp and face...

Set up with bipap cap, for when they thought she would need bipap!

10:45pm
So far she has done amazingly. A few minor desats, nothing major! Keep it up Sleeping Beauty!

11:24pm

Lowest so far has been 80. She is doing a million times better than the last study!


End of test:
I'm wiped. It's just past 5:30am, we've packed up, and I'm ready to drive home. Ellie has periodic breathing, but no major apnea spells, which is just insane!! Her RT and I sat there all night expecting for her to crash, but nothing. It was so weird!!

I don't know if tonight was a fluke, if maybe she was just not really relaxing with the probes, and not being at home. I don't know what it means, but I'm sure it means no trach. No trach...

We are staying with the bipap, because desats of 80 aren't a good thing, but what an improvement!! I wonder if we can attribute this change to the tiny little Synthroid pills she takes every morning.

I couldn't be happier... and now, we wait until the end of the month, and their formal assessment of the whole situation!

Thanks for the thoughts and prayers <3