Home!

The sleep study went well. It looks like she’s outgrown the obstructive apnea, but that’s made way for some weird periodic breathing. Typical in newborns, periodic breathing is where you take a breath, pause, then take several quick breaths. Sometimes Ellie’s oxygen levels drop, other times it doesn’t. After a long chat with one of her doctors, we decided that it’s best to keep her off bipap for the time being, and slowly try to wean ourselves off electronic monitoring, in favour of relearning to watch her physical cues. We still have nursing hours, so we’re going to take it slowly. We will have weekly sleep studies at home, until our next respiratory  clinic visit in a month’s time.

 

Baby girl is home <3 She was so happy to be with us, that she showed off all evening long! She ate her dinner all by herself (beef stroganoff on egg noodles, with cherry tomatoes, raw spinach and goat cheese feta), slurping up the noodles like nobody’s business. Seriously, I should have filmed her and sent the video to the OT that told us she would never develop a suck! After dinner, I had work to do, so DH cleaned the kitchen while Ellie hung out on a blanket. I had NO idea that he didn’t know Ellie could sit up on her own. He was blown away by her speed at rolling over, and getting into the four point position, and was so excited to see her progress over the last week. It made me giggle to hear him exclaim “Whaaaaat?!?!”, and to see that Ellie had, quick as can be, gotten herself to sitting, and was scooting under the table in a race for the dropped noodles. Ah, she’s so funny. Everything is fun, everything is a game! She really does wonders for brightening my day. DH spent probably half an hour putting her back on her belly, to watch in awe as she sat herself back up.

 

We had a nurse come last night, at the same time as always, so we didn’t have to worry about taking Ellie off monitors. I heard them ring off a few times overnight, but it wasn’t anything too serious.

 

This morning, DH got up with Ellie to relieve the nurse, as I got ready for work. When I came downstairs, she was so excited to see me, that she almost scooted off the couch, trying to get to me! She gave me the best little hug. I can’t even tell you how amazing it is to have her be affectionate and loving. It’s the most incredible, heart warming feeling.

 

Neither of the kids were particularly impressed with my leaving for the day. Ellie waved bye-bye to DH and Jakob, before I gave her back to DH. She cried when I left, poor nugget!

 

I’m going away for the night, with one of my best girlfriends. I am so looking forward to a night off, to relax and unwind. J

 

Sleep Study #3

I should be working right now, but the internet at the hospital isn’t working. Go figure. I was counting on getting several hours of work done, instead I’m going to go to sleep at 9:30pm, and wake up when the test is over at 4am. FOUR IN THE MORNING?! Le sigh.

The doctors told us last week, that Ellie would need another formal sleep study. She’s been staying at the hospital for the past two weeks, for nights only, and has been completely off bipap. Tonight’s study will confirm (hopefully) that everything is good, and we will go home with orders not to hook her up to her monitors unless she is sick, or we have good reason to hook her up. Crazy.

They didn’t tell me that I would have to stay, until yesterday, and I’m not too thrilled about it, but I’m glad I came. Ellie has never been so upset, as when they were hooking up all the leads and probes tonight. Poor girl cried herself to sleep.

We had a PT appointment today, where they gave Ellie a pair of Hip Helpers (see link), to keep her legs from splaying apart. We also got a contraption called Walking Wings (see link), which is much like a harness, only padded, and has handles so I can support her in the walking position, without killing my back. She loves both items, although isn’t too crazy about how much she needs to use her abs while sitting. It’s really good to build core strength, so I think she’ll be in those huggers a lot over the coming weeks.

She was quick to learn the proper method for pulling up to stand. Before, she would try to rely on arm strength alone. Now, she brings herself to kneeling, and then stands. It’s much more effective, and she’s happy to stand, stand, and stand.

Tonight, as we were waiting for the breathing technician to come to the room we’re in, Ellie scooted to the side rail of the crib, pulled herself up to standing, and cruised around her baby jail. 

We were adamant that we were going to skip setting the crib up for her again, and just transition her to the twin bed in her room, but I’m having major second thoughts. The twin bed is high off the ground, and she is now mobile. She can get to sitting, and from sitting she can go anywhere! It will be a royal pain to set the crib up again, and in the time where we’re showing our house, I’d be happy to keep her in the Pack n Play until she outgrows it. I think we’ll have to think about it when we set up a new room for her (if we ever sell our house!)

I cannot believe how much she’s changed recently. She gained weigh REALLY quickly (1kg in under two weeks), but the added weight has spurred huge progress in her motor skills. You would not believe how fast she is at scooting, especially when we play “I’m going to get you”! Oh, she’s such a funny little girl, and so with it.

Our PT said today, that he’s amazed at how quickly she learns, and how evident it is that she takes everything in and truly understands what is going on. He said it’s likely this will continue, and that hopefully she won’t be affected by some of the worse symptoms on the PWS spectrum, like autism and behavioural issues. He worked with a boy in England, who had PWS and was autistic, and by Ellie’s age, the sypmtoms were already present. I can only hope that we will be spared that aspect of the disorder.

I read something very interesting, on one of my support forums, the other day. With regards to play food, food tv, and cooking with kids with PWS, there’s a theory that access to play food, and media about food, and being around food, actually reduces the anxiety kids with PWS feel around food. Dr. Miller, the leading PWS endocrinologist, was the one who suggested the idea.

If you start baking, or cooking with them from an early age, and implement rules (like no eating raw batter, and giving the baked goods away after) early on, that they can actually grow up to have a healthy relationship around food, and feel less stress.

I could possibly bake with my Ellie. You have no idea what hope that gives me.

I’ve been looking online at fun felt foods I could start making over the next couple years, and at play kitchens I could build. Before, I thought it was impossible to have any of that, and the thought made me so sad. All we can do is try! If we start with basic rules, right from the time she can grasp them, it might just work!

I am still so tired from our big walk, and busy catching up on laundry and cleaning. Jakob and I made a Thanksgiving wreath for our front door, and started on one for Halloween. Yarn wrapped wreaths are so easy to make! Thank you, Pinterest!

Time to sleep, 4am will come quickly.

Interview at 3 years, 9 months.

A friend of mine posted this set of questions on her blog, so I tried them out on Jakob.

1. What is your favourite colour?
Blue.

2. What is your favourite toy?
Hmmm... my favourite toy is my train set 

3. What is your favourite fruit? 
Mmmm... blueberries

4. What is your favourite TV show?
Kipper!
(this is probably because it's on at the moment)
5. What is your favourite food to eat for lunch?
Um, a grilled cheese sandwich and a peanut butter and jelly sandwich... those two sandwiches.

6. What are your favourite clothes to wear?
My dinosaur t-shirt, it's blue
7. What is your favourite game to play?
The stick on game that's blue and red and magnets
(magnetic checkers)

8. What is your favourite snack?
Bananas
9. What is your favourite animal?
It's grey, and an Elephant, or a  Hippo. They're both grey.

10. What is your favourite song?
Mockingbird, because I like when you sing it to me

11. What is your favourite book?
Hey Little Baby!
12. Who do you like to play with?
Isabella, and Sophie, and those are all my friends I like. I love girls. 
 
13. What is your favourite food to eat for dinner? 
 Pasta with macaroni and cheese, that's yummy! 

14. What is your favourite thing to do outside?
Play soccer
 
15. What is your favourite thing to drink?
Um, blueberry juice
 
16. Where is your favourite place to go?
To Isabella's 
 
17. What do you like to do before bed?
 Read a book 
18. What is your favourite breakfast?
Cereal, hot cereal.

19. What do you want for your birthday?
A robot cake.

20. What do you want to do or be when you’re big?
Be a policeman.

Walk in Photos

Saturday seems like a dream. Honestly, the whole day couldn't possibly have gone any better. I am ridiculously excited for next year!!

Setting Up!

People starting to arrive, registering, getting their shirts and getting their faces painted!

All for her <3

All for THEM!! <3 The Ladner PWS crew!

Walking together for a cause

Great Crowd!

Happy Walkers

What a great group!!

Silent Auction!

We did it!

I am still processing and decompressing, but yesterday was a HUGE success!!

WE RAISED $20,000!!!!!!!!!!

I am completely drained, and we're having a bottle drive at the moment, so I have no time to really update. I will post a whole write up of our walk, including pictures. My mind is BLOWN at how much our little town raised, with the help of all our friends around the world.

THANK YOU <3

I made A Kitchen Addiction's Pumpkin Bread with Salted Caramel Drizzled Pumpkin Buttercream. It's really good. You should come have a piece! Save me from myself, I am going to eat the whole thing. Jakob said it was the best cake he had ever had, and that it tasted like pumpkin pie (his favourite).

I am in a funk. The bad kind.

I'm not sure what my problem is, but everything makes me so emotional, I must have cried half a dozen times today. I don't normally cry at anything. I am having an extremely hard time leaving Ellie at the hospital, and I've had my husband drop her off to save me from having to walk away from her. I feel completely gutted at the separation. I just want to strap her to me and run away somewhere.
That's probably why I'm so upset.

Jakob is my angel, he is such a sweetheart. Last night, we were snuggling in my bed and he told me "Don't worry Mommy, I'll look after you when you're older and have problems". I laughed out loud, and asked him what kind of problems I was going to have. He answered "BIG ones!! But don't worry, they're all in your head". My three and a half year old said that to me! He says the funniest things.

I was feeling down, so I baked. I love to bake, but then it reminds me that I won't be able to do that when Ellie's older, and then I feel even worse.

Honestly, I've been doing SO well, and I've been so pumped up about our walk, and all of Ellie's tremendous progress, and it feels like I could keep carrying on, doing well, when *WHAM* I slam into a brick wall, and everything falls apart.

I made A Kitchen Addiction's Pumpkin Bread with Salted Caramel Drizzled Pumpkin Buttercream. It's really good. You should come have a piece! Save me from myself, I am going to eat the whole thing. Jakob said it was the best cake he had ever had, and that it tasted like pumpkin pie (his favourite).

I've cleaned the kitchen, and done all our laundry. I clean when I'm upset, for whatever reason it makes me feel better. Well, I was listening to the radio (country), and Taylor Swift's new song Ronan, came on. Oh, my word! What a sad, sad, sad song. I was bawling. I didn`t realize it was a true story, and hearing the back story, and finding Maya Thompson`s blog Rockstar Ronan had me sobbing. Jakob is looking at me like I`m a lunatic, and doesn`t understand why I keep hugging him. 

Sigh. 

Woohoo! Ellie can get from lying prone, to sitting up, all by herself! It's taken forever, but now she's all over the place. I can't believe how quickly she is progressing. She scoots so quickly, and now that she can sit up on her own, nothing's safe! Fun times. Better get baby proofing!

Busy

This time, last year, I was feeling down and discouraged about getting Ellie's GH covered, and wondering how everything was going to work out. It's amazing how much changes in a year.Things I stressed about, and worried about, ended up not being a big deal. Oh how do I wish I could convince myself the worries I have now won't seem like a big deal in a year from now!

Today, Jakob and I got up early, we ate breakfast, got dressed, brushed our teeth, and headed out the door to pick up Ellie. I am so tired of this, so tired of the back and forth. Every time we think that we're done, we end back at the hospital. It's hard on Ellie, she knows when we're leaving, she knows when I'm walking away from her.

It was a rush getting to the hospital, and a rush getting back in time for her OT appointment. Nothing new, although her IDP worker brought us a new standing table, which she can pull herself up to stand on. She ate like a champion, and wowed them with her signing.

When they left, we went to the grocery store, to post the flyers for our walk, and to buy ingredients for some Pinterest cookies. I made Caramel Stuffed Apple Cider Cookies, from Scrambled Henfruit's blog.

How could I resist, when the advertised photos were so amazing?!

 I tweaked the recipe a bit, and they were outstanding (used a different brand apple cider, used vanilla bean paste, and Werther's soft caramels).  Seeing as I ate four of them before they'd even properly cooled, they were clearly unsafe in the house! I sent most to work with DH, the rest in a care package for the nurses at the hospital.

While I was cleaning the kitchen, Ellie scooted across the room, to the cupboard where I keep my Tupperware goods. She was so chuffed with herself for getting over there, and she pulled every single item out. If only she would put them back in! 

What a difference a year makes!!!

DH took Ellie in to town with him on his way to work. She cried as I put her in her car seat, and waved goodbye, and blew me a kiss as tears streamed down her face. The girl is a professional at tugging on the heart strings!

I can't believe it's Tuesday, our walk is just around the corner, and I have SO much left to do!! Jakob is napping, I really should be getting things done!

Planning ahead

I have a couple big events coming up. We're hosting 14 people at Thanksgiving, and I would really like to outdo my performance from last year. I know what I'm making: Brined Turkey, cranberry-apple sauce, pecan candied yams, mashed potatoes, roasted brussel sprouts, gravy, hmmm... I'm sure there's more! I have been on Pinterest a ton, what with Ellie being in the hospital at night, and Jakob being a good little sleeper. I am going to make a wreath tomorrow, either

or...

They're both so different, but I love them both equally! I guess we'll see what I find at the hobby store tomorrow. We have a CRAZY morning, DH gets home from work at sunrise, so he'll go straight to bed. I have to get Jakob up, fed, dressed and out the door in time to beat tunnel rush hour, pick up Ellie, come back through tunnel traffic and home before our 10am OT appointment. I have nothing else going on after that, so hopefully I can get a trip to the store in before DH heads back to work! If not, this can totally wait until after our One Small Step weekend! We've raised almost $12,000.00!

Jakob is turning 4, in December (yes, I know it's a long way away!!) and ever since his third birthday, he has been asking NON-STOP for a robot themed birthday. I am on top of things, because I know that time will fly, and before I know it I will be freaking out that I don't have everything I need. Also, you never know what's going to happen with the wee girl, so it's entirely possible she'll be back in the hospital, and I won't have time to do all that stuff when the time comes!  We spent some time yesterday, looking through cake ideas, and Jakob decided he loved this:

I showed him a TON of actual robot cakes, but he fixated on the sprockets and the bolts, and said "I WANT THIS!!" So, thanks to A Blissful Nest, I found the silicone molds to make the parts out of fondant at Decorate the Cake . I bought a cool chevron table runner on Etsy. I could TOTALLY have made it myself, but I didn't feel like buying fabric, and setting everything up, so Jakob asked for blue stripes, and blue is what he gets!

 

While I was shopping, I decided to buy myself a runner for Thanksgiving!  Win!

I love Autumn. This week, we're going to welcome a new baby into the family (my SIL is delivering our new niece or nephew on Friday!). I love the cool mornings, the fog as the sun rises. I love the changing leaves, snuggling up with my family under a soft and cuddly blanket. I love everything about the season. Well, everything except the psycho bees/wasps who make me fear leaving the house.

Mobile!

Another day bites the dust

As my husband and I tucked Ellie in for the night, after marvelling at her ability to pull herself up to stand using the hospital crib rails, we pulled them up as high as they could go, and secured her in her baby jail. I said to the nurse, as we were leaving, half jokingly "Looking forward to hearing that she desatted over night". There's something about the hospital environment, and I don't know what it is, but Ellie sleeps perfectly, not at all like she does at home.

I turned to wave goodbye to my little lady, and we left. Straight past the empty Special Needs Unit, left at the isolation rooms, right at the water cooler, out the automatic doors. At the mural, I grabbed Jay's hand, and we turned right, walking down the hall, just the two of us. "How are we here again? How do we always end up back here?", I asked. He laughed, "I don't know".

We turned left at the end of the hall, my fingers trailing along the rubber wall bumper, past the empty gurnies, past the carts of clean linens to the main hallway connecting BC Children's Hospital, to Women's Hospital. We turned right, pausing for a moment outside the doors of the NICU, memories flooding me, as they always do when I pass by. The smells, the sounds, all entwined and engraved in my mind. Will I ever be able to walk by without the onslaught of emotions?

We look at Ellie's tile on the wall, and agree that the wording suits her perfectly. Was she really so small, so frail? It seems like a dream.

I sigh, and we continue down the long hallway, passing busy people, rushing back and forth. At the five-way intersection, we part ways. Jay leaves past the cafeteria, I turn right, past the cashier's office, pausing to read the bulletin board about ongoing research studies. I contemplate buying a snack from the vending machine, but don't see anything I like. I walk through the doorway, turn right, and push the elevator button.

My mind is elsewhere, as I almost get run over by a garbage trolley exiting the elevator. I back up to let the man past, push the button to hold open the elevator doors, then sneak in, and press "0". I lean against the right wall, staring at the field of flowers, the fake blue sky. I remember all the breakdowns I've had in this small, confined space. For the first time, I wonder if there is a security camera on board. I wonder how many other parents have fallen to pieces, leaving their children, or worse...?

I walk our of the elevator, push the wheelchair button on the right, because time has told me the door is too heavy. I turn left, out the door, walk through the parking lot, to my van. I look at the automated parking machine, and shake my head at the prices they charge helpless families. I find my van on the first try, unlock the doors, open my door, throw in my bag, put on my seat belt, and sigh.

Another day bites the dust.

There is a delay on our sats monitor, I'm not too sure how much, but Ellie is sleeping, and she just whimpered really loudly, followed by her sats dropping to 79. I'm assuming the whimper was her coming out of the desat.

It seems she's been having one great night, with no bipap, followed by an atrocious one, with bipap all night long. Right now, she's rung off her alarms three times in five minutes. I was going to start her bipap, but she's awake, and that never goes well.

We haven't heard back from respirology yet, about the follow-up to her "weaning". We don't have an appointment until the end of the month, I think on the 25th or something like that. Not even word on another sleep study! Definitely feels like someone's dropped the ball in their court!

Oh jeeze, it just went to 70. Time for bipap!

What a Day!

It’s my lunch hour, and I’m slowly processing through the past 24 hours. I started today off, at 5:25am, got up, made tea, got dressed, kissed Ellie good morning, and headed out the door for Sunrise Yoga, at Open Space. I haven’t been to a yoga class in so, so very long. With everything we’ve had going on, it is hard to justify taking time away from my kids to spend time on myself. Seeing as my children sleep until 7am, or so, a yoga class from 6-7am is perfect! I feel so centred today, so much calmer, so much more in myself.

Yesterday was a very stressful, very exciting day. The bank opening started at 10:30am, and it was a mad dash to get us all out the door in time. We made it, just in time for everything to get started. Corey, the manager of the bank, did his spiel, we heard from a Scotia VP, and then they made the two charitable donations. First was to Sources, a great community resource. Then, it was our turn, and they had me say a few words about our walk.

I wasn’t prepared, and I was a little jittery, but it was awesome.

Everyone loved Ellie, they always do! Our little donation jar received a bunch of donations, and we should find out by Monday how much we raised!

I had the honour of meeting a Delta City Councillor, who was there representing the Mayor. She was very interested in Ellie, and such a nice woman! She asked if she could speak about our walk at their council meeting on Monday! Yay! The VP, Mr. Poole, was amazing. He and Corey SO generously donated some of their air time on JRfm (my fav!!!) to promote One Small Step and our walk! I got to meet Barbara Beam, and had three cut-ins throughout the afternoon.

At 3:30pm, Travis Lulay (QB of the BC Lions) showed up for autographs, and he signed two of our OSS shirts, which we hope to sell in the silent auction. Ellie loved him.

I talked to SO many people about PWS yesterday. So many people were genuinely interested in knowing what it was, and what was being done to find a cure. I felt a confidence that I’ve never really felt before. I can do this! This is my calling! After the opening wrapped up, Ellie and I went out to visit with our good friends Gemma and Amanda. I love all my friends, but to have another special needs mom who I can open up to is really special. Today, we’re on the COVER of the South Delta Leader! Ellie and I are on the cover! It’s so surreal.

With two weeks to go to our walk, and all the publicity we’re getting, I KNOW we’re going to meet our fundraising goal. Our thermometer is sitting at $6511. I saw that the two kids who are fundraising for Ellie are close to $550, so there’s another $200 in offline donations. With the $500 from Scotia, and close to $800 (I think) from the donation bin at Scotia, we’ve raised just over $8000! Only $2k to our goal! I can’t wait to see what happens over the coming weeks, and see how many funds we can bring in for research! We’ve got this!

I'm working on a bunch of things at the moment, one of which is a Family Planning Binder! I'm in shock that I didn't know about this concept until it was discussed on one of my Mommy groups! I am forever looking for pieces of paper I've written important numbers on, always scrambling to remember when Show and Tell is, when Ellie's appointments are, what to eat, when to pay bills. Here's the solution! I intend to update this post with exactly what I did, what I included, and a few photos of how it turned out. I'm happy to have started!

We have a busy few days coming up. My mom is flying into town TODAY, so I'm going to be cramming in as much visiting time as possible before she leaves again on the weekend.

Tomorrow's our big day at Scotiabank, and we're looking forward to that. DH had some drama this week, that's resulted in needed to have his teeth put back where they belong, and Jakob is gearing up for preschool next week!

I promise, I'm going to start posting more frequently, with better content, and include photos again :)

When we were initially in the hospital, for Ellie’s bipap weaning, we were told she would be there for two weeks, then followed for a month or so with weekly “sleep studies” (where they send home a recording oxymetre). As you know, we were sent home after four nights, free and clear. “She’s fine!”, they said, and they even went so far as to call our nursing support to pull the plug on our hours and funding. I was peeved.

 

Fast forward to a few days of being home, off bipap, with “just one more week of nursing”. Ellie started desatting. A little the first night, a little more the next, even more the next. Finally, the nurses decided it was back to bipap time, or else spend the whole night rubbing her belly every time she tripped the alarms. When our nursing manager called, after coming back from holiday, she was in disbelief that Ellie could have been cleared so quickly. But, our lovely nurses had been calling it (on their own accord) to say that Ellie still needed bipap. She told me that we had at least two more months of nursing, which calmed my nerves a little. Then, our nursing support coordinator called, and told me she’d receirved the weird call from the hospital, saying Ellie was magically better. She told me that our funding and nursing hours are secure until our reassessment in January. That made my day.

 

We’ve been home for a couple weeks now, and for the last two nights we have been flying solo. They never staff us over long weekends. The first night, Ellie was great for a couple hours, then had a couple desats, but it wasn’t anything I couldn’t shift her position to fix. Last night SUCKED.

 

We have relisted our house on the market, and all of her equipment was packed away (except the oximeter). I fell asleep at 10pm, and DH brought Ellie upstairs at 12am. She slept fine for the first twenty minutes, and then she started desatting, over and over, and over, and over again. I was going CRAZY. I sat there looking at her, while I recorded the desats with the video function on my phone. Breathe, pause, pause, fast breathing, pause, pause, alarm, alarm, alarm, alarm. DH set up the bipap, which seemed to take forever, and finally we hooked her up. After that, her sats were perfect, she slept amazingly.  

 

Today, the hospital called asking for the BIPAP MACHINE TO BE RETURNED! Are you kidding me?! Are you seriously going to ask for it back without even ASKING if she’s okay?! No follow up to the sleep study, no follow up to anything. DH told them flat-out NO. I’ve been on the phone all afternoon trying to reach someone that knows anything at all, but the receptionist is clueless, and no one is returning my calls.

 

I am pissed.

 

In other news, Ellie is amazing. She’s now waving, signing more, all done, and pretty. She can blow you a kiss, give high fives, and clap. She loves to be sung to, she loves music, she loves to hum along. Gross motor skills are lacking, probably because of the complete absence of physio visits over the summer. Seriously, kids don’t stop needing services just because it is summer. We have an appointment next week, where I’m sure he will tell us we haven’t been doing enough. I hate the stander, it doesn’t work, it makes her cry, it hasn’t improved her standing, we need something better.

 

Blah.