Did I ever tell you about the time, not too long ago, when Jason and I went on a treasure hunt in our couches?

Well, we did, and it was akin to opening a time capsule! We found:
We found:
- my drumsticks from high school band, which I distinctly remember getting in trouble for losing
- my flute cleaner
- Christmas gift labels from my Grandmaman, my Mormor, my aunt Charlotte, some friend of mine named Kathrine (all looked very old)
- a subscription card to Time magazine from 1985
- $5.63 in change
- two pens
- some marshmallows
- a pair of scissors
- a ruler
- a pink barrette that I'm fairly certain was mine as a child
- hair elastics
- two screws
- a square of fabric that I love, which looks to be very old, and I'm excited to iron it properly to see the pattern
- a knife
- a fork 
 - a couple cloth napkins
- ornament hooks
- a book mark from 1984
- and this ring!  It was either my mother's, or my Mormor's. My mom isn't too sure. But, it was bought in the early 80's, in Copenhagen, Denmark. It's sterling silver, and fits like it was made for me. I love it.

Photo Dump!!

Policing the Unit!

Jakob gave Ellie the greatest toy on the planet - a Rice Crispies Bar wrapper

"Don't even think about taking it away, Mommy, or I will start crying and never stop..."

Party in the Crib: Ellie and all her favourite buddies.

Feeding time in the Corner Chair

This is a HUGE deal! Ellie is finally lifting her head during tummy time!

Kitchen, before, clutter and red, red walls.

Kitchen, in progress, waiting on curtains, valance, and cover for my sewing station.

Our Room!

Antique desk, re-purposed as a dressing/vanity table

February 29th is Rare Disease Day. Made these for our ICU nurses, the white icing is a mega-disaster.

Talked with Dr. Dee today. She wasn't too sure what the doctor last week was thinking in saying Ellie should go home. We are going to do one trial night next Sunday, and then I have to tell her Monday morning how *my* night went. Looks like we may only get three nights of nursing, despite being allotted four. That makes a substantial difference.
Turns out Health Canada recently issued some advisory saying that all kids on vents need to be constantly monitored until they're old enough to remove their own mask. While that's sort of ridiculous, it does mean we have reason to be here, even if some doctors don't agree. At least Dr. Dee, bless her, is on our side.
We will see how the weekend goes, and decide from there our plan of action. I don't want to leave, just to come back because it is awful with the current mask.

Dress Up Time!

Tomorrow marks the 9th week we will have been here. Exactly how long we were in the NICU. This time is so different, I am at peace with the situation, I am not afraid. Everything is fine, we know what we are up against, and we are so much stronger than we were.
My brother is helping the hubby paint our kitchen, so I don't have to. Jakob, lucky boy, is swimming with his two aunties. He was so excited to go with them!
That leaves Ellie and I to enjoy a beautiful, quiet afternoon together, while she snuggles and I drink my tea.
Ellie is so sweet. She really melts my heart with love. She smells delicious. I wish this moment could last forever.

Today, Jason and I had the day with Ellie, while Jakob was with Grandma. I love being with Jake, but it sure is nice to have some time with Ellie, when our attention isn't divided.

She was a grump-a-lump this afternoon. Super sleepy, and not up for much playing. I hope she isn't coming down with something. Given the number of people she sees daily, it's a miracle she hasn't gotten seriously sick in the time she's been there.

She did perform during her late-afternoon physio-with-mom session. She is finally starting to consistently hold up her head during tummy time. We've been putting her over one of our legs, as a bit of support, and from there, she pushes up. When she has mastered that, we will move down to a smaller wedge, and then eventually to no support at all. She is so proud of herself!

I have a video of that, I need to upload it, but I'm exhausted. I woke up at 5am, for no good reason at all, and couldn't fall back asleep.

Tomorrow, we are painting our kitchen "nook". It's hard to call it a nook, since it's a relatively large space. It's painted a dark red, which I find incredibly depressing. We are painting it the same colour as our living room, Benjamin Moore's Revere Pewter. Love that colour!

We bought a self-priming paint, so hopefully it works as well as the salesman claimed, and we can be finished in two coats!

Will also take photos of that. I apologise for the lack of photos! It's hard to find time to upload, edit and post them. Unfortunately, laundry usually wins over fun photo time.

1440 hours

Today is day 60 of Ellie being in the ICU. 1440 hours... realistically, the average time I am there daily is 4 hours. 240 hours out of her whole stay. Ten days out of sixty.
The village that is raising her, that is loving, and caring for her, is so amazing.
This week, I hope to start a project, before we come home, where I leave a camera by her bedside, and ask everyone who snuggles her to have their photo taken with her. There are SO many people who love Ellie, people whom I have never met! It is amazing.
She is going to miss them, a lot, I am afraid. Why wouldn't she?
I want to make her a book to remember everyone by. We can read it every night, so we remember how lucky she is to be loved by so many.

Home the week after next. For real this time. We do parent led care upstairs (out of icu) starting Friday. Two nights there and one more night in ICU, and as long as the nursing shifts are filled, we can go HOME.

I submitted the details for Ellie's NICU tile today. I have thought about it a lot over the past few months, about what I wanted it to say, since it's likely to be there for a long, long time.

I chose:
Ellie Marianna Kimberly M...
Believe in me, and I will amaze you.
Love me, and I will change your world.
April 22, 2011       3lbs.

I think it's pretty perfect. She is so, so amazing, I truly believe that she can do anything she puts her mind to, she's amazed us so much with her progress, in defying the odds, in proving doctors wrong. And, she has changed our lives in such an incredibly positive way. We are so blessed to have her, to love her.

I'm on a big Thai curry kick this week. I found a box of dried coconut milk that served as my inspiration. We've had three versions, tonight's being butternut squash curry with coconut brown rice. It's delicious.

Before I started cooking, my FIL called to ask if we wanted to go out to dinner. Fine, except the destination was McDonald`s! Are you kidding me? Not a chance!!

Today, I had a personal doctor's appointment. Jakob couldn't quite wrap his head around that. It may sound ridiculously vain, but I am super-duper self-conscious about some moles on my face that have raised since I had my babies. It has recently come to my attention that people don't notice them (or they're just lying...) but I notice them, especially in photos.

I've been wanting to have them removed for a long time, and so today I finally went for a consultation with a surgeon. I could have gone to my gp, but I care about not having scarring...

I thought it would be really expensive to have them removed, and the cost is really what's held me back for so long. I read somewhere that they cost about $150-300 a piece to have removed. *Cringe*

Well, it turns out that the first is $250, and to have another four removed is just an additional $50. $300 total. I was really excited when she said that. Even more excited when I went to book my actual appointment, to find they'd had a cancellation, and I can go in this coming Monday!

After the appointment, we went to see Ellie. She's great!! She has started nodding for "yes", and shaking her head for "no". Adorable! She was in a great mood all afternoon, even had a mini-snooze with me, while Jakob was playing with a volunteer.

All in all, it was a pretty decent day!

Jakob and Ellie

I finally took a video of Ellie sitting that looks like it will work :) I am flying solo this week, so I will have to wait until Jay is around to take another video of her standing.

Because she is cute

I have been staring at my keyboard for a long time, unsure of what to write. There are a thousand words spining around in my head, and I am having a hard time making sense of them.

We have been, as you know, in the process of getting our house ready to sell. This set of days off meant huge changes in our living space, and the more we do, the less I want to leave. I would love, LOVE to have our own yard, and the freedom to let my children out, knowing they are safe. But, is that all it really comes down to? A yard? We have all the space we need, the kitchen works so well, especially since my laundry room has a door on it that can lock, if that becomes our reality. We have a row of cupboards above our hot water tank, utility sink, washer and dryer, which could so easily serve as a pantry, if need be. There is also a pocket door shutting off the kitchen from the rest of the house.

Our bedrooms are huge, especially when compared with what we saw this week at the open houses we attended. I love our bedroom (I'm sorry I keep forgetting the photos... one of these days! My energy is lacking.) I love having a dressing area, a chair to snuggle into, by the window, where I can read,and watch the squirrels, the birds, the wind blowing through the trees. I can close the door to my room, and get lost in my own world, if only for a couple precious hours in the evening, or early mornings when Jason wakes with Jakob, and takes him downstairs for father-son bonding over cereal, and retro cartoons. My time is special, my time is important. It allows me the opportunity to regroup, to sort my thoughts, to find peace in the turmoil that catches me unaware.

Another change I love in the house, is the repurposing of our "den", the open space at the top of our stairs, between our room and the children's rooms. We moved our big, comfy couch up there, gathered all our books from all over the house and placed them on the bookshelf. Our entire bookshelf is full. I have read all but a handful, which were Jason's textbooks from school. Reading is one of my favourite passtimes, yet time to read is hard to find. I have some ideas for decorating the walls, and I need a floor lamp.

Today, I had both my babies on my lap, as we read half a dozen books. Jakob loves stories, his imagination is unbelievable, and he will happily make up stories on a whim. They are so entertaining, it makes my heart smile. Ellie, she loves to be read to. She listens intently to every word, eyes flitting between the illustrations, and my face. Moments like this, where I can keep them both enthralled, both yearing for just one more story, they are moments I hope I can always recreate. I long for the day Ellie is home again, and we can spend lazy afternoons heaped on the couch, with Jakob, reading, and storytelling.

I like how it feels to sit in a different spot in the house. Presently, I'm sitting in the living room, in a chair by the sliding doors, beside our fireplace. We've never had seating here before, and the point of view is nice. From here, I can watch Jason's face as he concentrates on his hockey video game, I can see all our photos on the walls, my beautiful tulips blooming, the tea set that reminds me of my grandmother. From here, I feel a slight draft, a hint of a breeze coming from the fireplace vents. I can see down the hallway, and almost into the kitchen. This really is home, I will be sad to leave it.

I have never been one to embrace change. I dislike surprises, I thrive on predictability, on stability, on routine. Yet, this year has shown me how little I can really control, and how I can rise to the occasion, how I can handle so much more than I ever thought. Ellie and I have now spent a collective 146 days in hospital, most of which were completely out of our control. I couldn't control anything while on bedrest, couldn't look after Jakob, couldn't look after the house, I relied completely on the grace of my husband, the love of my parents, the benevolence of friends, and friends of friends.

I have learned so much this year, especially that change is inevitable. We face the biggest changes of our lives with Ellie, but we are ready, willing, and completely prepared to embrace the changes we need to make, always remembering to hold fast hope.

Tomorrow will be a good day.
Good night <3

Today was hard. I don't know specificially what it was that made it harder to handle than most days.

I am sick of going to the hospital. I am desperate to see Ellie, but I have had enough of the drive, the parking lot, the elevator, the hallways. The smells, the sounds, everything about hospital life, I am so over it.

Ellie keep gaining weight, which is sort of good, and sort of bad. She's gaining more than she's growing, and now her rolls have rolls. Her doctor came to talk to us about it, about her obsession with food, and put a name to it. Early-onset hyperphagia. There, fine, I have confirmation of what I already knew.

It hurts more than I can express, to know that my baby feels hungry. There's nothing I can do to help her, but offer a strict, predictable schedule, and offer distractions, cuddles and love.

I have a few videos on my phone of her sitting, and standing, but I can't get them to upload. So, will have to reshoot tomorrow with the video camera. Her standing is improving by the day. Today, I took my hands off for a split second, and she didn't fall over.

I guess, she's just on an accelerated path. Early (for PWS) at hitting motor milestones, early with the rapid weight gain, early with the hyperphagia.

Why can't it be me that suffers? Why can't I help her? Life isn't fair.

In preparation for selling our house, Jason and I have been dutifully knocking one task a week from our to-do list. This week, I rearranged the living room to center the space around the fireplace instead of the t.v. I moved my bedroom armoire over, put our big floor mirror into the corner, put my dad's school desk beside my armoire, and now I have a dressing table!
We found the most amazing bedspread and pillows set. It matches all the colour in our room, and ties everything together. It was a big find!
In the den, we've got our big bookshelf, and now a couch and our glider. I love it!
We were going to repaint the children's bathroom, but when we were out shopping, we found the best shower curtain, with colourful owls. As luck would have it, we found a matching canvas print, so now that room is pretty much complete, aside from a soap dish, floor mat, and towels. We also bought a damask white on white shower curtain (cloth) which I am going to convert into panels for our three kitchen windows. I have a plan for box valances above those windows, after we paint!
It is all coming together. I love it. Will post pictures when I have a moment to take them!

Everyone is sick!

You wouldn't believe the icu today, every kid in Ellie's wing is in "isolation". I put the term in quotations, because I really wonder how isolated they are when they're all in the same room!

I am so scared that Ellie is going to get more sick than she already is. There is MRSA and RSV running rampant.

The sight of all these barriers in front of every bed made my heart hurt. I want her out of there!!

It is the weekend now, so nothing will change before Monday. Jay works tuesday-Friday, so realistically, I can't bring her home until next Saturday, unless the nursing is set up for home. But, as soon as he is off work, there is no point in waiting another 4 days just so the nurse is there for her first night back home.

Must not compare...

Sometimes I wonder how much people really want to know about our lives. I just spent the past hour reading a debate over whether people like or dislike Kelle Hampton. I love her photos, but her constant "positive only" posts have a tendency to make me feel like a bit of a crappy mom.

The thing is, I know I'm a fantastic mom. I don't need anyone to validate me, to tell me I'm doing a good job.

I know I am.

The proof is in the pudding; look at my babies. Jakob is three years old. He willingly spends hours upon hours playing at the hospital, making his sister giggle, forgoing nap-time to spend time with his Ellie. At the end of the day, when I'm exhausted, run down, and feeling sorry about our situation, and lacking patience with him, when he is hungry, overtired and bored, there are times when I crumble, and I raise my voice. He looks at me with his big blue eyes and says "I'm sorry, Mommy, I won't do that anymore, I'll be a good boy, because I love you". And, with that, I find renewed patience, renewed strength, and I know that I will always do right by him, and by Ellie. He is confident, he knows how much I love him, and in turn he loves. The boy has such a big heart, it makes mine want to explode.

I digress.

Having read a fair bit of KH's blog, I wonder if maybe I should only post the positives. I know that my mother, whom I love very much, cares very much about what other people think. She would rather we keep all the details of Ellie's complications, health issues and delays within the family, and only present a very staged, "perfect as can be" image to the rest of the world. Somewhere along the lines, I started caring less about what others think, and more about what I, myself, think.

My blog is a record, for Ellie and I (and the boys, if they care). I want it to be real.


I don't want to cannot put on a brave face every day, and make people think that I live a perfect, stress-free life. My life isn't perfect. No one's life is perfect. If that's all I kept record of, I would be lying.

Jason and I are doing our best on this crazy roller-coaster ride. So, I include the good, the bad, and the ugly. You all know we've been through our fair share of the bad and the ugly, perhaps even more than our fair share. But, you know, that's alright. I would much rather be the one to deal with the messy parts, heaven knows I would never wish anything like this on anyone.

I am strong enough to deal with what life is giving us, and I'm not going to pretend our struggles don't exist. I wake up every morning, thankful that this is my life, and not someone else's.

I will never be a Kelle Hampton, I don't have time to make myself look perfect for every picture, I don't always have a camera with me, and I can't throw amazing parties like she can, or focus almost only on the good. She's so lucky her daughter isn't severely affect with DS, and I understand her trying to make her blog about more than just her daughter's disability.

I want that sentiment to show up in my blog, to write like Ellie's disability does not define her, or us. But, it sure has given us a beating this year, and it shows. Honestly, I am completely jealous that KH has time to do it all, and that she manages to still look amazing. Jealousy sucks.

I have to remember, I don't compare my children to others, and I shouldn't compare myself to others either. Especially if it makes me feel poorly about myself. We're all on our own journeys, we are all different, and we all deal with things in our own way. Must not compare.

So, I'm just going to keep writing about our ups and downs. The fact that we've been in the ICU for 51 days and counting this time, only makes Ellie's personal triumphs all the sweeter.

Pictures from Day 50 in hospital!

Can you tell we've been here a while?

She can stand!! (With help for balance)

She is so proud of herself!

Ellie's sign for "Up"

Her eyes just keep getting lighter!

Can you see her hair starting to curl? It's so long!

Eyelashes that go on for miles...

Little feet, which are getting bigger

Fixated on her balloon

Fml. Ellie is sick.

She is on respiratory and enteric isolation, in a spot against the wall, with curtains drawn. She isn't happy at all! She won't keep her mask on, she is cranky and tired. Ugh.

But, I retook my airway management course, and at least if she had to get sick, it is happening when we still have another couple weeks left to our stay.

Got photos of her standing. Will add them tonight!

Today was quite the day. Ellie was so grumpy earlier, but after a long, unscheduled nap, she awoke bright eyed, and full of smiles.
I had forgotten that today was a growth check day, and was surprised when our endocrinology nurse appeared at 4:30pm. Ellie was in such a great mood, and giggled as we lay her onto the measuring table. I was giddy with the results, you won't even believe it! In the last four times we've measured her, she's been steadily growing 3mm every two weeks. In the last two weeks, she grew 9mm!! NINE! Triple the normal rate.
I was shocked!
And then, as if she was trying to knock the socks off everyone in the room, she stood, for the very first time, just holding on to my hands.
WHAT?!?!

Who is this girl? I have no idea!

She happily performed for every new person that walked into the room, and I would bet money that she will be able to support herself on a chair, or table edge by week's end. She couldn't bear weight at all on her legs a week ago, yesterday she could for a split second. Today, practically indefinitely. The change in her level of strength is absolutely outstanding (ha, pardon the pun).

I will post a photo tomorrow! You have to see her in action!

Tough love, already

I just had a chat with Ellie's doctor. I mentioned that Ellie has been a grump all day (actually, the nurse mentioned it). Dr. Dee said that last night Ellie was cranky around 9pm, and that the nurse thought Ellie was hungry. Dr. Dee said that Ellie is already getting probably more calories than she needs, and that under no circumstance are the nurses to give in. We have to start now with teaching her that she only gets a certain amount, at scheduled times. We cannot give in to her pleading cries.
Sigh...
We also talked about Ellie's reflux, and digestive system. I think we are going to add a laxative, or something to draw water to her bowels, because although she doesn't show signs of constipation, she could be very backed up which could cause all her spit ups. She is always spitting up, despite the reflux meds.
The middle mask for Ellie to try is on order. Things look like they will all gel for a beginning of March homecoming.

She is wiped today. I hope it isn't a sign of her getting sick!
Oh the plus side, her hair is officially long enough for a barrette!

Today I met with the nursing coordinator. She was very nice, and we went over Ellie's care plan, where she will sleep while they're there (in the bassinette in the living room), who is going to look after her, and how it all works. She said she was going to make sure the shifts get covered as quickly as possible, which, when I asked, means at minimum two weeks.
Two more weeks. This I can handle. I have been having nightmares about bringing her home. I feel really insecure about it all, about being able to keep up her leevel of care and interaction. Of keeping her well socialized. I need to plan a weekly schedule. If I know I will almost always get to sleep 6 hours, I have no reason why I shouldn't be able to function at a high level during the day. I shouldn't be so nervous. She's my daughter!

The inspiration: Downtown Bakery and Creamery’s Cinnamon Sugar Donut Muffins

 A friend of mine tried this recipe, and said it was amazing! For the record, I found the recipe here. I plan on making both muffins and cake balls. 

Downtown Bakery and Creamery’s Cinnamon Sugar Donut Muffins

Yield: 24 standard size muffins  (52-56 mini muffins)

For the muffins:
12 oz. (24 Tbs.) unsalted butter, warmed to room temperature
1-3/4 cups sugar
4 large eggs
1 lb. 11 oz. (6 cups) all-purpose flour
1 Tbs. plus 2 tsp. baking powder
1/2 tsp. baking soda
1-3/4 tsp. salt
1 tsp. ground nutmeg
1-2/3 cups milk
1/4 cup buttermilk

For dipping:
8 oz. (16 Tbs.) unsalted butter; more as needed
2 cups sugar
2 Tbs. ground cinnamon

Put a rack in the middle of the oven and heat the oven to 350°F. In a stand mixer or a large bowl, cream the butter and sugar. Beat in the eggs, one at a time, until just mixed in. Sift together the flour, baking powder, baking soda, salt, and nutmeg. Combine the milk and buttermilk. With a wooden spoon, mix a quarter of the dry ingredients into the butter mixture. Then mix in a third of the milk mixture. Continue mixing in the remaining dry and wet ingredients alternately, ending with the dry. Mix until well combined and smooth, but don’t overmix. The batter is very thick.  Grease and flour a standard-size muffin tin. Scoop enough batter into each tin so that the top of the batter is even with the rim of the cup, about 1/2 cup. (A #16 ice-cream scoop gives you the perfect amount.) Bake the muffins until firm to the touch, 30 to 35 minutes.

Melt the butter for the dipping mixture. Combine the sugar and cinnamon. When the muffins are just cool enough to handle, remove them from the tin, dip them into or brush them all over with the melted butter (I recommend the brush method- I did both and found that the dip method lead to them absorbing too much butter and got greasy).  Then roll them- top, bottom, and sides- in the cinnamon sugar.

Make ahead: You don’t have to bake all the muffins right away; the batter will keep, covered and chilled, for up to three days in the refrigerator.

Mini muffins:  I baked mine in a mini muffin tin. I made a half recipe and got 28 mini muffins.  They took about 18 minutes to bake, but I would start checking at about 14 minutes.

Source:Fine Cooking

Helpful Hints:

• Cinnamon sugar is delicious, but powdered sugar, plain sugar, or vanilla sugar would be delicious too.
• Do not overmix, or you will not get fluffy, tender muffins.
• I added a splash of vanilla to the batter, as I can’t imagine any baked good without it

Baking to Come

 I haven't posted a recipe in ages, likely because I haven't really been home in ages! I've been meaning to, but you know how crazy life has been.

I want to do a post about my Christmas baking machines. My KitchenAid mixer, mini cupcake baker, and cake pop maker. This means I have to bake, I haven't baked since, hmmm.... I can't remember!!

Tonight, I'm looking up recipes. Tomorrow, I will bake them!

Every single parent I've met along this crazy journey has been inspirational to me. If it weren't for Ellie, I would have remained in ignorance of everything that goes on at BC Children's Hospital. The parents here, they're outstanding.
Jakob is so lucky to have had this experience. Most children who see kids with various medical devices, be it iv lines, oxygen cannulas, tracheostomies, feeding tubes, are frightened by the sight.
Today, we went to the Valentine's Day party upstairs. There were all sort of kids, ones with broken bones, ones recovering from surgery, ones with cancer. Jakob didn't hesitate for one second. He doesn't see that "stuff", he sees the child. He played, very happily with some oncology patients, and didn't understand when I pulled him out of the "oncology only" area. He is already an amazing, compassionate individual. I am so, so looking forward to seeing him grow up.
I visited with my friend B today, and one of her twins. They've never been home, and I've known B for a year. Our girls were born within two weeks of each other. I am absolutely blown away by her strength. She's been through so much, and when she smiles, the smile still reaches her eyes. Hospitals can break you down, but these parents have so much strength.

I finally got the phone call from Nursing Support, and they're going to come for a visit at the house tomorrow morning at 11am. We chatted for a while on the phone, about Ellie and what sort of care she might need. I know there's a huge nursing shortage, and it's hard to fill hours. Lucky for us, Ellie doesn't really *need* a nurse, which opens up the availability of helpers. They have RNs, LPNs and non-nurse caregivers (most of whom were nurses in their home countries). All the person needs to do, is sit there and readjust Ellie's mask as needed. Shifts are 11pm-7am. We get four of those a week, and they're going to write up the schedule based on when Jason is at work. YAY!

She said they might not be able to fill the whole 36 hours right away, but at least they're getting the ball rolling.

I am excited!!

In other news, today was Pink Day at preschool. Jakob was 100% ready for the day, and dressed head-to-toe in bright pink, with his black skull and crossbones hoodie, and black DC's. Adorable, and completely confident. I love my boy, he's going to be the most amazing man.

Hunger

Ellie's hunger has already started. I don't need a doctor to tell me what is so plainly evident. At least I don't have to wait, wondering when it's going to happen.

A while back, Ellie started fussing after feeds, so the doctor increased the caloric concentration of her formula. The theory was, increased calories means she gets more in less volume, and she will stop when she is full. Ellie never stopped when full. One awful afternoon, and eager nurse who knew nothing of PWS kept feeding her. "You wouldn't believe how hungry she was! She ate twice her normal feed!! Isn't that amazing?". No. NO, it definitely is not amazing.

Ellie went from 10lbs to 12lbs in the blink of an eye. It seemed like she stalled for so long at 10lbs, and then all of a sudden she was at 12lbs and gaining. That would be fine, if she were gaining in height to compensate, but her height is slow to follow.

Ellie is getting chunky.

About a week ago, we re-introduced solids. Our doctor said "start with cereal", I am not giving her empty calories. No cereal. We started with veggies. I started off giving her a bottle, then offering solids, just like I did with Jakob. It didn't take me long to realize the girl would overeat. She would eat a few bites, and while I paused to try to teach her the sign for "more", she would freak out. Tears, screaming, a full tantrum. The second you offered another bite, she would calm right down. After what I determined was enough food, she would cry. Hard, for several minutes, until we could distract her with something else.

I've since learned to skip the formula on solid meals. She will get her allotted amount of calories from fruits and veggies at that meal. When meal time is over, we put all the food away, and we distract. We cannot eat in front of her, if she isn't eating, because she complains, loudly.

They told us the hunger wouldn't come until she was 2 years old, or older. She's 8 months adjusted. I guess by the same token, they told us she wouldn't sit until she was over a year adjusted, and she sits just fine. There is no real textbook for PWS, and how could I forget? We live in the grey-zone.

Ellie started smiling as soon as we got in the elevator at the hospital. That turned to beaming when she got into the TCU. She loves it here.

And, she missed her dollie!

Today was the single best day of my 2012 so far. Today, for seven perfect hours, I had my baby doll home. She napped, she fed, she played, she visited with her Auntie Amber, Uncle Sandre and cousin Linnea. She snuggled me, oh how she snuggled, like she was trying to erase every space between us. She was a ham for the camera, and made us laugh at dinner. She had a midbacker poop, had a bath, got dressed in new pj's, and got ready to go back to her home away from home.
She doesn't like the car, the darkness of night. She is staring at me, she knows she is going back.
With the rain falling, the cold wind blowing, it is all I can do not to keep her in my arms, where she belongs, at home.
I will be patient. The end of this ordeal is almost near. And, tomorrow I will see her in the morning.
I can almost keep my composure, but the Jakob says, in a little tiny voice "mommy, I want to take care of her. Can't she stay if I help?".
:(

Beautiful Girl

My Little Angel Baby

:)

Trying out her new headband

Trying out a Mama-Made headband

Ellie Before

Smoosh-face

I can't upload two photos at once from my phone, so until we are home this will be a two part entry. This is Ellie's face two months in to BiPAP treatment...

Just a few photos that make my heart happy:

Perplexed!

My camera was a half-second too fast, her smile gets even bigger!

Playing the Funny Faces game with Mommy

Sitting....

SO proud of herself!

Pearfectly perfect!

Pictures of Babies with PWS

This search phrase takes me back to when we were waiting for our diagnosis. I Googled like you wouldn't believe (well, if you're going down that path, you might actually believe), and what I was desperate for, was to know if having PWS meant my baby would look different. I didn't care about the actual lack of genetic material, I cared about what she would look like, because people are so mean to those who look different. It's bad enough being called "Four-Eyes" when you have glasses, or being made fun of because you have a weak jaw line, or your teeth have spaces between them (all relevant to me, if you were wondering). I am normal, and it hurt. I couldn't fathom having a child that looked outwardly different, the thought was soul crushing.

Lucky for me, my beautiful girl is, just that, beautiful.

My baby with PWS

Look through my blog for more photos of Ellie. She really doesn't look any different!

Toaster Head Syndrome

Every now and then, I look at the search terms that lead people to my blog.

This week, there are a couple terms that stood out, and I wanted to write something about them!
The first, I had to Google, because I had never heard it before: toaster head syndrome.

TOASTER HEAD!!!!!!

What a name! I am very familiar with the medical term, which is dolichocephaly, more often referred to as preemie head.  Ellie had very pronouced "toaster head", (oh my word, that makes me giggle) when she was first born. The doctors said it was because she was breech for the majority of my short pregnancy, and because she was early. Kids with PWS also tend to have that head shape.

Ellie's head has rounded out a LOT, all on its own. She was a little wonky, from having spent too much time in the NICU on her right side, but positioning has helped fix it.

Ellie in the NICU a couple weeks after birth:

Long and Narrow (Dolichocephalic) Head

After, at 9.5 months actual

Beautiful girl has been here too long :( another night of tucking her in, kissing her cheek, and knowing someone else is going to feed her once more, get her into her night clothes and really put her to bed. Tonight I was very close to asking to bring her home. Just for one night. Sigh...

Today, before we journied in to see her, Jason and I moved the bookshelf from the kitchen to the den, the glider from Ellie's room to the living room, and generally started putting things away. We donated a ton of stuff to the thrift shop, clothes, picture frames, knick-knacks. I rearranged, and folded everything in her drawers. Tomorrow, we are going to finish the declutter process in both kids' rooms, prep the kitchen for painting, and vacuum. I would like to get the crib back into Ellie's room, too, in preparation for her homecoming. I want a new duvet for the twin bed in her room. The one in there now won't cut it, if I am spending my nights with her.
I am secretly looking forward to my nights with her, when Jay is home, and he can make sure Jakob is alright. I long to snuggle her, to watch her sleep, to sing to her when no one else is listening. I promise to savour every moment I have with her, I have missed too many.

Ellie's IGF-1 levels came back, finally. They were 25ng/ml, which is low. Low means that I now have power behind me when I ask endocrinology to retest her for growth hormone production. It was the first test she's ever shown any deficiency, and this was after a month of proper breathing, when she "should" have been growing. I am so happy about that, you have no idea.

We only saw her for a bit today, long enough to give her the growth hormone, and to snuggle for a mini-nap. Tomorrow, I am going for longer! She's a champion little sitter, every day she increases the time she can go for, today it was almost 5 minutes without toppling! Her rolling is getting very good too :) Rolling, sitting, I'm starting to sound a bit like a broken record.


I haven't been feeling well, so it's early to bed for me. :)

Am I ever glad I bought the monthly parking pass! This afternoon, when we came back in, we saw Dr. Dee. she said it is likely Ellie will be here another two weeks. I told her I was uncomfortable with the new mask, and she was very matter of fact, that Ellie isn't ready for it yet. Patience, patience. Two weeks gives them time to get hours and equipment set up.

Lasy night was rather unpleasant, as far as sleeping goes. The tickle in my throat turned into full congestion, and an inability to breathe through my nose. I hate mouth breathing at night!
So, I woke up early this morning, feeling gross, coughin up green, and then Jakob came in, and with one look, I knew he felt exactly the same. He NEVER wants to miss prescool, and this morning he wanted to call his teachers and say he was too sick for school.
I am giving myself the morning to feel better, this evening is our date night out! Last one with Ellie in the hospital.
In other news, we get the photo disc from our Helping Hearts shoot, today!

We had an early hospital visit this morning, because we met with Leora, our IDP consultant. She was blown away by the progress that Ellie has made. I was happy that our pt's came to visit while she was there, because they had the chance to emphasize how important regular pt is going to be when we come home.

Ellie does not like her new BiPAP mask one bit. I don't blame her, it blocks her eyes, it's loud, and requires a substantial amount of pressure to keep it on her face. I am going to ask again, if we can modify the pillow mask to fit her more properly, and hold off using this new mask. It just looks so uncomfortable, and it's so loud and whistly.

They are presenting Ellie's case for nursing support  today, so any positive thoughts sent that way would be appreciated. If we get approved for "adequate" hours, the agency will let us know today, and then they will start hiring nurses for home. I didn't get a clear cut answer as to how long that usually takes.

I asked about getting equipment for home. Leora is going to look into getting Ellie a corner chair, from their OT office. One of the charge nurses was going to look into ordering a new oximeter, BiPAP machine, and gh therapy supplies for us through the At Home program.

I also asked, since my monthly parking pass was up, what I should do in terms of parking. My options were to buy weekly passes at $55 a week, or a monthly pass for $90. It's $15 a day without a pass, so if I bought the weekly pass, and for whatever reason we weren't discharged by the end of the week, I would probably end up buying daily passes, and would already match the $90 in two and a half days. So, I bought the monthly pass. Maybe the Universe will see that I'm being cautious, and not overly confident in her coming home, so it won't try to spite me by making her stay longer than it has to be.

I am sick, Jakob is sick, Jason is sick. My mother-in-law was sick last week. It's not a fun one either, starts with a sore throat, then leaves you will plegm at the back of your throat/nasal cavity. If she gets it, which seems rather likely, it will require monitoring again. Ugh... We'll see. It's still early, I was prepared to have her in hospital until the end of March, we're the beginning of February.

Holy crap. Tomorrow marks the one year anniversary of my first night in hospital. One year.

Stats

I was looking over the statistics for my blog, and it seems an awful lot of you Google to find us regularly.
If you look over here,
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you will find a Join this Site button.

Might save you some time, I'm just sayin'....

Today was a huge day! Ellie trialed out her new BiPAP mask, and it fit!! That means we are one step closer to going home. The mask is still a little big, and it obstructs her vision, but it is "safe" for home.

Poor nugget is 100% going to have to sleep in her own room when she comes home, the mask is LOUD. The pillow mask she's had since the beginning has a leak rate of 16 something per minute. The new mask has a leak of 40+, which makes a considerable difference in sound. There's no way anyone will be able to sleep in the same room as her, and not be disturbed by the noise. I'm not sure what we can do about that either, it's a problem with the vent holes being too small, I think. I haven't really looked too closely.

We played on the floor mat for quite a while, and I could put her on her belly, with her hands under her, and she would roll onto her back! She can go both directions, which is amazing. All that's left is getting enough momentum to end up fully on her belly, when she rolls from her back. She's going to be moving in no time.

Sitting is going fantastically well. I was looking at photos from Christmas, and her head control was still so poor, despite having decent core control. She's a pro now! I am so excited about all her progress.

She's also gotten loud. She's found her voice, and everything from babbles, to squeals, coos and cries are loud enough to draw attention from down the hall. She's making her presence known, and it's awesome.

Leora, our case worker for IDP, is coming to visit tomorrow morning. I am so looking forward to getting her impression of the changes. I see Ellie every day, she hasn't seen her since before Christmas, before BiPAP started! I bet she won't even recognize Ellie. I can't wait!

I need to read more, I find that my vocabulary is slipping, and I am having a hard time finding the words that once used to flow so easily.

Today I was happy. Woke up happy, was happy throughout the whole hospital visit (except maybe when Ellie was getting her Synagis vaccine, and was so sad), then for the rest of the day, up until now! I'm sure the sun has something to do with it, today was such a beautiful, bright shining day.

When we got to the hospital, Ellie was napping, with a beam of sunlight making its way through the ward, landing on her perfect little face. She woke up at the sound of my voice, and greeted me with the most gorgeous, heart melting smile. She knows her Mama, that is for certain.


Today, a nurse came to discuss some of the information in Ellie's chart, as part of the process to writing up a care plan for when we go home. Can you believe they are finally preparing for us to go home?
The nurse that administered Ellie's Synagis also booked us in for her next vaccine in three weeks, in their clinic, not in the hospital. We are making progress.

Ellie had two physiotherapy sessions today. I think I'm going to miss her pt's more than anyone else! They've developed her muscle tone, and developmental skills so much more than we could have done at home. Today we were working on rolling, and sitting. Ellie can very easily (almost too easily) roll from right to left, and back again. If her arm happens to be in the proper position, she can roll all the way over. Same goes for if she is on her stomach, if her arm happens to not be in the way, she can roll to her back. She likes tummy time, which is a tremendous improvement. Depending on her mood, and on how much she feels like participating, she will or will not lift her head. That remains her biggest hurdle. In all seriousness, her noggin is rather large compared to her bitty body. I'm not surprised it's difficult to lift!

I have a bunch of photos from today, but they won't load for some reason! Will update them later.

Ellie and I had a mostly good day. She greeted me with smiles, gave me a bunch of incredible belly laughs, and snuggled and played the afternoon away. I put her on her monitors for her afternoon nap, and she started ringing off. Her breathing rate is high.

Normally, at nap time, she slows her breathing to 20 breaths per minute (bpm). Today, she was ringing off at 65bpm and up. At one point it was up in the 80s. I'm not sure what to make of it, and I am worried. I am soooo worried it's a side effect of the growth hormone, and against my better judgement I've been scaring myself with Google research. Bad mommy, bad! Her heart rate has also been elevated, so I don't know what's going on.

:( It was so hard to leave today.

Just diagnosed with Prader-Willi Syndrome?

You are NOT alone!!!

I really should be putting Jakob to bed, or maybe putting out the garbage, or picking things off the floor in our den. But, I'm not in the mood, so here I am instead. Jakob is happily playing in the bath, which has long since gone cold. I don't know what it is about kids and bath time. Jakob could spend hours upon hours in the tub if we let him.

I am making slow progress in tidying up the house this week. My goal was to move all the books out of Jakob's room, onto our bookshelf in the den. I succeeded in doing that, and now our bookshelf is full of books, instead of stuff, and he has a proper desk to sit at and craft, doodle, play stickers, or whatever it is he wants to do when he's in his room. I've been wanting to do that FOREVER.

Next, decluttering the den. It's been our dumping ground, ever since we exiled the toys from downstairs up to the den. There are piles of papers waiting to be filed, and about a thousand greeting cards. Tomorrow, I am recycling those, filing, and generally putting things in their proper place. I have the morning to myself, Josie is coming to help with the cleaning near lunch time, and Jakob will be with my mother-in-law. Yay! I might actually accomplish something!

I would love to move the shelf out of the kitchen, and up here into the den, then move the crib back into Ellie's room, get rid of the pull-out couch in the living room, move the glider from E's room into the living room, and the rocker in Jakob's room back into our room. It's a lot of shuffling, but eventually it will all get done, and we will have a bit more space. I've been ruthless with getting rid of old toys, picture frames, anything that causes clutter. If we're going to sell our place, we can't have clutter, and more importantly, I do NOT want to move useless junk. Bring on an early spring cleaning session.

Have I told you that Ellie is sitting? 100% unassisted, sitting on her own, playing with her toys until she loses interest in being upright? She's amazing.My camera sucks, and I'm working on trying to get Nikon to replace it for me. The majority of my photos come out blurry.

Rocking Tummy Time

Camera straps tastes yummy

Sitting!! NO HELP!

Look at her go :)

Sleepy munchkin <3

Trying hard not to get ahead of things, or to get too excited.
Today, we met with Dr. Dee. She was very positive about all the progress Ellie has made, and with the smooth transition to growth hormone therapy. She said that Ellie's case is being presented to the night nursing funding program next week, and hopefully, ideally, we will qualify for enough hours to make Ellie coming home feasible. She said Ellie still has to fit the mask, but there are things they can do to help fit, since her nose has grown. She will still need her bipap for night and naps, but they want to do frequent sleep studies, in the hopes of getting Ellie weaned off bipap by the summer. Wow! She will need the frequent sleep studies, because the gh can cause problems that show up slowly, showing themselves through loss of milestones. We are all for forward progress.
We talked about the downside of bipap, Ellie's mid-face is being compressed quite noticeably. We aren't out of the trach woods. She could very well experience issues requiring traching. Fingers crossed she continues to do well.
When her apnea resolves,she will need to discontinue gh when she is sick, and need bipap during those times, but for the most part we will be living a more normal life.
I would be so, so happy to have her home soon. Scared to hope for it...

We are gearing up for a couple birthdays in our household. Jay is turning 30, and Ellie is turning ONE, in eleven weeks! That really isn't very long, considering time seems to pass at the speed of light.

I bought Ellie's outfit today, in separate pieces, and I cannot wait for them all to arrive:

White Pettiskirt from Ellasbows

Onesie and Leg Warmers from ShortandSweetPeas

Custom Rainbow Yo-Yo Hair Bow from cocorosecouture 

 

 

 

I think it is all going to come together perfectly! I am soooo excited. Now I just need to work on the decor, and probably buy the paper printing set that I`ve been oogling:

From Sweet Scarlet!