Endo Check-Up

Everything is perfect. Ellie is growing amazingly in height, so the growth charts are visible on the horizon. Dr. S said we might reach them next summer :) She hasn't gained enough, but that's a lot to do with being in the hospital so much. I had a long visit with the dietician, and we plugged out a plan to get Ellie back into the proper weight-for-length range by December. Wee Miss needs to gain 2.5lbs by then. Eek.

She's 6.155kg, and 67.7cm. (or 13lbs8oz, and 26.7")

Meds are staying the same.

I spent the afternoon at Harbour Park, with the kids, scouting out the location for our walk! I also met a reporter from South Delta Leader, so stay tuned for a story about us next week!

Media Darling

All of this attention is really, REALLY exciting, and a little overwhelming at the same time.

 

As I mentioned, they featured our story in The Province on Tuesday : http://www.theprovince.com/news/Paul+babies+little+girl+will+never+feel+full/7152904/story.html

 

And, as I also mentioned, I was interviewed by CTV news online. Today, they ran our story as the headline story!! http://bc.ctvnews.ca/mom-campaigns-for-toddler-who-will-never-feel-full-1.935119

 

Within an hour of the CTV story being posted, an acquaintance sent me an email asking if I was interested in getting local television coverage, through DeltaTV (Um, YES, please!!), and I’ve been in touch with both local community papers, The Delta Optimist, and The South Delta Leader!

 

People are joining the event page who aren’t people I know, and that just blows my mind!!!!

 

This is going to be an INCREDIBLE event. I just know it!!

And, in case you forgot, all the information you need can be found at http://facebook.com/OneSmallStepLadner

 

I am so, so grateful.

Everything is falling into place!

Life is jam packed these days. I can't believe how busy my schedule is! I've recently increased my work days to twice a week, which is amazing for my personal development, and great for our budget, but it certainly cuts back on the time I have to get everything else done! With 25 days until our One Small Step walk, I have SO much to do! Today was a particularly exciting day. I woke up to discover that they ran our story in The Province, which is super exciting.

Then, DH and I met with the manager at the local Scotiabank, which is just opening. Seeing as we gave him three weeks notice before our walk, and we were coming in at the end of the year, we didn't expect much, but were hopeful we could get our out of pocket costs for running the event covered. They're having their big grand opening ceremony/day next Thursday, and said that they would have a collection jar for Ellie, with our poster, and some flyers, and everything donated would be matched, dollar for dollar, by Scotia's regional (?) head office. We were thrilled!

Off I went, to spend the most lovely afternoon with a dear friend I haven't seen in far too long. While I was there, a high school friend of mine, who is now a reporter for CTV, called to interview me about the walk! I thought my day couldn't possibly get any better.

Imagine my surprise, when I walked in the door this evening to see my husband beaming. The manager at Scotiabank had called in the afternoon, to say that he'd talked to some higher ups, and they were going to present us with a cheque for $500 (!!!!!) at their opening ceremony. They asked if we could be on site for the ribbon cutting, and to promote our event. I'm ecstatic! To top it off, they're still going forward with collections. Amazing.

Oh, and nursing coordination called to tell me they're not touching our nursing hours or funding at all until our review at the end of January. Yay!

We have decided to take the plunge and host our very own walk, which will be held in Ladner's Harbour Park, on Saturday, September 22nd!

Please visit our event page: http://onesmallstep.fpwr.org/dw/walking/location/434
Or, check out our FB page for up to the minute updates! https://www.facebook.com/OneSmallStepLadner

Take One SMALL Step with us!

Little lady has been gaining weight rather quickly since coming home from the hospital. I can't recall if I posted, but she lost a fair bit while she was there, dropping back down to 12lbs15oz. As of Friday, she weighed 13lbs12oz!!

A doctor at the hospital made some comment that Ellie looked like she was wasting away (thanks, a lot, that was nice), and I started worrying about under feeding her, despite following what the dietician recommended. I think that Ellie`s metabolism has sped up, in the wake of sorting out her thyroid problems, so it's entirely possible that we have been underfeeding her. In any case, she's gained almost a pound in a week. That's FAST. Half a pound more, and we have to go back to maintenance calories, because she will be back in the perfect range weight-for-length.

We've stopped giving her formula, having switched to local, organic whole milk. I was worried initially, because she had a few bad experiences with cow's milk. I think the problem was that the fat content was too low. She's taken to whole milk with no problems at all!

Ellie gets a bottle when she wakes up, with her Synthroid pill. She usually goes back to sleep for a couple hours. Then, when Jakob wakes up, we have breakfast. For her, that includes an egg (although this week we've been doing two), a half cup of yogurt, with Boring Porridge. I discovered this stuff at Budget Foods, our local little specialty grocer. It is AMAZING. We all love it, and it's the perfect way to start the day. I've found that after including this in Ellie's breakfast, she doesn't cry when the meal is over.

"Whoa" FACTORS

- very High source of Fibre
- very High source of Vitamin A
- very High source of Iron
- good source of Calcium
- good source of Vitamin C

- whole Grains
- NO Wheat and NO oats
- gluten-Free
- lactose-Free
- vegan

SECRET INGREDIENTS

ingredients: Flax seeds, Sesame seeds, Chia, Goji Berries, Red Dates, Cane Sugar, Sea Salt.

We have a light lunch, for her it usually includes chick peas, veggies and some fruit. She gets another bottle in the afternoon, and has whatever we have for dinner. We give her NutraSea for Kids (Omega-3 Supplement with EPA, DHA, GLA and vitamin D), before bed, around the same time as her GH shot. She loves the supplement, and I feel better knowing she's getting all the good fats she's supposed to get to support healthy brain development. It's so complicated making sure she gains the right amount, but it's worth it to make sure she gets everything she needs.

Awake!

I should NOT have had coffee tonight. Seriously, I am buzzing, and the nurse is here. Sigh, stupid move, Sus.
 
Ellie has needed bipap two nights in a row :(
 
Her sats fell into the high 80s on Wednesday, but recovered within 5 seconds. Last night, she hung out in the 80s, without recovering, so bipap all night it was. Even when the nurse tried givingg her a break, she would plummet back to the 80s. Lame.
 
I talked with our nursing manager, who'd talked with both nurses (who were concerned enough to call in). Nursing hours are staying the same. That's a relief.
 
I will have to talk to nursing support, but with proof of continuing desats (E is at present doing an At Home sleep study), they can't very well take away her care.
 
I guess it is alright. I want whatever is best for Ellie. She slept like crap off bipap, so restless, and fidgety. On bipap, other than rolling around like a normal person would, she would sleep right through. Off bipap, she was awake multiple times.
 
I told tonight's nurse to record the times E desats, to wake her up if she does, but no bipap. I need one night, at home, to show the docs what is reeally happening. Hey, at least we didn't have to spend all this time in hospital!!
 
Ellie is now waving goodbye, signing more, all done and saying Mama, Dada, bubbah (bottle). She has a special smile reserved for Jakob, and she loves him the most! progress is progress :)

Dreams

For as long as I can remember, I have always had the most vivid of dreams. For whatever reason, I also seem to cycle through themes, such that I dream about the same topic for a couple weeks, and then move on to the next. There doesn't seem to be any particular rhyme or reason to it, and most of the time it surprises me what my subconscious fixates on.
This week, I'm stuck in high school. I can't tell you what a trip it is to be 10-15 years in the past, dreaming like it happened yesterday. I takes me a few solid minutes to come back to reality, and for some reason I've been feeling sad that it wasn't real.
Nothing happens in particular, there's school, and handing assignments, and hanging out with friends, like old times. We drink, we laugh, we goof around, with nothing remotely important to worry about. Maybe that's what I miss, the freedom from responsibilities.
These days, I have a lot on my plate. I can handle it just fine, and I'm in a very happy place. I couldn't be happier with my marriage, and the kids are an absolute joy. I love my job. I love the planning of our walk, getting ready to start Jakob's second year of preschool, and putting our house back on the market. I wouldn't change any of it, but the way things are these days certainly make me feel grown up.
I also miss a lot of the people I used to be close with. That's the hardest part of these dreams... waking up realizing that I haven't talked to some of them in years, that I didn't just spend the evening laughing with them, that I don't have a clue what they're actually up to in real life. Almost everyone has moved on, started careers, gotten married, settled down. I'm sure a baby boom is coming one of these days.
I am SO grateful to have reconnected with my girls. There's something special about growing up together, a comfort level that you just don't get meeting people as adults, I love that connection.
Wonder what tonight will bring!

DH and I were watching Ellie in awe, last night. Where did she come from?! It seems like someone switched our baby with one who can breathe perfectly at night (we're over a week now, off bipap!), who babbles all day long, who giggles, and laughs out loud. She plays games, loves peekaboo, waves and claps for herself. She rolls, she butt scoots, she can get from belly to sitting, and back again. She can push a paced walker, and walk around the room. She can stand for ages at her activity table.
She eats like a champion, no longer gagging on anything. She loves her veggies, she loves textures, different flavours and colours.
She loves her brother, and recently learned that saying Dada will bring DH running.
Last August, we were reeling from her diagnosis. We were thrown headlong into a world of researching, fundraising, and figuring out how to swim in the murky waters of being different.
This August, we're a family. We are whole, complete. We don't miss Ellie's missing genes. We embrace our individuality, our differences, and are proud to spread the word about Prader-Willi Syndrome, and we are no longer afraid of the future. Our family has united around Ellie, we are strong, we are confident.

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

Hot Potato!

Today was our last day together before Jakob came home. It was hot!! Ellie was happiest sprawled on the tile floor :)

Change of plans... Sort of.

I talked to Dr. D today, and Ellie isn't going to be admitted on Monday. She is going to have her sleep study and then we are going home. Because the sleep study takes a while to interpret (read it is summer and everyone is away) they need a whole before they want to admit her. Now we are looking at a late August admission, on the heels of a clinic visit.
I mentioned that ENT didn't feel there was anything they could do with regards to removing tonsils and/or adenoids.
She asked how Ellie was growing, and didn't sound particularly pleased with what I told her. Wee nugget is still very wee!
Dr. W, head of ICU is away for most of September, so the plan is to have Ellie in well before he leaves.
We are hoping and praying that at the very least, Ellie's central apnea has improved. Dr. D said that OSA can be managed with bipap, but central is concerning. If I remember correctly, the results of the first sleep study showed sever central, and moderate obstructive apnea. Hoping for improvement, and a very short, uncomplicated stay at the end of the month.

Thanks for reading. It is always nice to see that I am not just writing to myself :)

15 month weight/length check

It seems to me that Ellie's growth has slowed again. But, I don't have her chart in front of me at the moment, so it's hard to tell.

Today, she was 66cm, or 26", and 6035g or 13lbs4oz.

Still tiny, and still super duper popular wherever we go!

Ellie giggles

http://www.youtube.com/watch?v=WSBAEfo292w


Sent from my iPod

Smoosh-Face Revisited Again!

Someone was asking to see how Ellie's face has changed, so I pulled up our before picture, one from February, and one from today. The change is very, very noticeable, although Dr. Dee said it wasn't as bad as some of the kids she sees. It will only continue to get worse if we stay the course with Bipap as a method of treating Ellie's apnea.

Ellie before starting Bipap

 

Ellie two months into bipap therapy

Ellie five months after starting bipap

Ellie seven months after starting bipap.

August 1st update: Ellie now has five teeth (three on the top, two on the bottom), and her lower jaw protrudes about a centimeter in front of her top jaw, such that the space created between upper and bottom teeth is interfering with her ability to chew/bite anything effectively. We have an OT appointment tomorrow morning! Finally, she's been picked up by OT, so they're going to assess that. And, I guess we'll see what happens next week while she's at the hospital, and if that plays into their plan at all!

What the what?? I just called the Respiratory clinic to figure out the planning for next week, and Ellie's stay, and the receptionist who books everything didn't know what we're supposed to be staying.

So, now I'm really confused! I called to ask if we were going to come home after the sleep study, or go straight to TCU, and apparently no one's mentioned us staying.

Dr. D who makes all the decisions, had already left for the day, but I'm hoping to hear back by tomorrow, so I can plan things out a little better. We've been waiting for months for this stay. I wouldn't be too impressed if it doesn't happen.

That said, I'm sure it's going to happen, so we shall see.

We're nearing the end of our Mommy-Daughter holiday, with my going to work on Friday, and Jakob coming home on Saturday (yay!). Yesterday, we spent the day with Auntie Liz, my brother's girlfriend. I left Ellie with Liz, while I went to donate blood. Then, we went shopping at the mall, followed by dinner out with my brother.

Today, I got my hair cut! I've been meaning to for quite a long time, and decided it was time. She cut off 9 inches, and it feels phenomenal. My next plan is to grow it until I have enough to cut off to donate to a wig making company, like Pantene's Beautiful Lengths program. Ellie was happy to pose for photos with me: