One SMALL Step 2013 Recap

Our walk this year was a way bigger success than I had anticipated, thanks to the army of friends and family that came out to support us, to volunteer, and put on a great event!

September 3, 2013 Total!

I was thrilled with the coverage we got through the media, and I have many ideas for next year!

Before I get ahead of myself, I'm going to take some time to adjust to having a kindergarterner (OMG!) and to going back to work. Busy, busy!

A few photos from our day:

We had two registration booths this year, pre-registered

...and new walkers. GREAT volunteers!

Face-painting and the Clown were popular!

Lots of puppies came out for the walk

The Lady of the Day :)

We had a huge silent auction, which raised over $1100

Not as big a turnout as last year, but still terrific!

Our PWS families

The warm out, Ellie was so into it

Warming up, thanks to our fitness volunteer Shauna!

And, she's off!

Couldn't have been a better day!

D-Day 2013

Today is the two year anniversary of Diagnosis Day. Two years since I sent an email to everyone I knew to tell them that I needed them to help me fix her future. I can't quite believe it's been two years since the phone call that changed my direction in life. SO much has changed for me, and it's undeniable that we've been through quite the journey thus far.

A week after her diagnosis

Ellie inspires me every single day.

Ellie at 27 months

For the past two weeks, Jakob has been on vacation with my MIL and cousins, up 7 hours away from here, with no cell service. Needless to say, I can't take Ellie somewhere with no easy hospital access, so the two of us (and DH when he's been off shift) have been really able to enjoy each other.

I've lost track of the number of new words she's acquired, they've all come on so suddenly! She blabbers and chats all day long, and now I understand what she wants most of the time. It's unreal! I can't wait for her next speech therapy appointment, her slp is going to be blown away with the progress.

This bodes well for my plans for the Fall. Jakob starts preschool in *gasp* just a few short weeks. That means I have alone time with little E every weekday! Time to sign her up for some toddler classes, and really get her back on track. We have gymnastics, swimming, and play groups lined up. Should be an adventure!

Today, we walked maybe 10 houses down from us, and back home, and she did it all on her own, she didn't even want help coming up the curbs. Seriously, progress!!

We got her, on the recommendation of her pt, a Strider bike. Love at first sight! Strider was the only brand that had a frame short enough to fit her, and she's still needing to be on tippy toes at the lowest setting. That's alright, for the time being we intend to only let her practice on the carpet and on the lawn. She doesn't need any more skinned knees or bonks to the head.

Best Present Ever!

Our walk is coming up quickly! Yesterday we had the privilege to do a catch-up interview with the reporter who has been covering our story since the beginning. He came to take new photos of Ellie, and marveled at her progress.  I'm excited to see how many people come out, even though we haven't spent as much time planning or promoting the event. If you haven't already, check out our Facebook Page: https://www.facebook.com/OneSmallStepLadner

Day 9 - Going for Clean

Big news in our household this week! Ellie has started taking independent steps!! STEPS!!! She took four in physio the other day, and also crawled across the living room, I'm sure just to show off that she could. She can stand, if she wants to, for maybe 20 seconds without holding on to anything. But the steps, that just gets me so excited. She is going to walk soon... soon!

Her PT is leaving the practice, to start his own practice. We're looking at a couple months of being therapy free, but I'm determined that's not going to stop us. I've been working with her every day to strengthen her little legs, and build up her endurance.

When DH is off work, I'm going to try to set up some sort of video to capture her progress. It's hard when it's just me!

Yesterday, I had the opportunity to go shopping with my mom (makes it a lot easier to have a second set of hands!) and I bought replacement cushions for our patio set. I'm so happy with them. They're cushy, and soft, and they're supposedly quick-dry, so we'll see how they hold up! It was a LOT less expensive than replacing the whole kit and kaboodle. I bought some solar lights as well, and if only the sun would shine I'd be able to see how they look!

Now, to fix the dog-destroyed lawn...

Today, Day 9's Going for Clean tip is to do one big chore a day. I HATE having to spend a whole family day cleaning. I really, really, really despise it. We only get so many days together as a family, and it seems like such a waste to spent the day chained to the house, cleaning.

So, I propose the addition of one big chore (read vacuuming, cleaning toilets, washing floors, washing windows, washing bathtubs/showers) a day. Yesterday, I vacuumed. Today it's going to be toilets. If you do one big thing a day, you shouldn't be left feeling overwhelmed, and you won't experience the let-down of having the tornado that is having kids and a dog destroy your "it took all day to clean" house in a matter of minutes. Cleaning, as I'm learning, is easier to do if you just do a little at a time, all the time!

March 19th

I was going through my Family Management Binder, and came across some sheets I printed off a long time ago from imperfecthomemaking.com for Blog Planning! I've written out what I want to write about this week, and it looks like I can get myself organized a lot more easily if I can just find the time to sit down and actually write!

Today was busy. Ellie had an endocrine appointment in the city, and I was on my own with the kids. We left a little early, so that we could stop at Michael's to buy the things we needed for some crafting.

Ellie's appointment went really well. She's 8.79kg and 75.4cm, or about 19lbs and 29.75". I need to update the Flash plug-in on my computer, but she's around 0.1%ile for length, and 3rd for weight. Baby girl is finally in the right bracket weight-for-length, but they're concerned that she SHOT up from 1st to 30th percentile w-f-l in three months. So, no more whole milk, and less bananas :(

We came home and made a Rainbow Sensory Box!

Star confetti (BIG mistake), felt, ribbon, feathers, construction and tissue paper!

While Jakob was playing with glass beads and homemade playdough, and Ellie was ignoring her sensory box in favour of a nap on the kitchen floor, I started making Yarn Dryer Balls. I'd heard of these before, and recently almost fell off my chair at the price they cost to buy! OMG. They're like $10 EACH, and you need about four of them! Not cool. So, I bought some wool yarn, wound it into balls, threw the balls into pantyhose, washed, dried, POOF, my own laundry balls at a fraction of their normal retail price.

Sleepy!

Yarn Ball in Progress

Pre-Wash

Dinner wasn't particularly exciting. I was tired at the end of the day, and we have no nurses this whole WEEK, so I found something unlabelled in the freezer. Turned out to be leftover yam casserole soup from Christmas, to which I added some Jasmine rice. The kids loved it.

Ellie's physiotherapist is leaving our early intervention practice. I have mixed emotions about this. For the past several months he's done nothing to push Ellie to do anything. No new exercises, no suggestions other than letting her figure out walking on her own. She still won't stand on her own. She can, but she flat out refuses. She will happily cruise all around, practically run with her walker, and can walk holding on to one hand. The millisecond you let go of her tiny hand, she sits down. She doesn't plop down, her descent is very controlled. But, argh! I know she can do this, and I'm desperate to see her achieve this humungous milestone. Everyone said that she would be "for sure" walking by March. Well, Hello there, it's March 15th, and we are no where close.

So, perhaps we'll get a new therapist, with a new outlook, who will get Ellie to push the boundaries of what she's comfortable with. I can only hope! The practice hasn't hired a new PT yet, so I think there is a bit of waiting still left...

Ellie turns two next month. Two. I can't believe that this time last year two years ago, I was well into the throes of bedrest, praying daily to make it a few more days, a few more days.

We are coasting now with her PWS. Every day I have a reminder that it's there, with her daily growth hormone injections. Jakob is a great little helper, fetching the supplies I need, while I work with Ellie on pulling the cap off her injection pen. One day, some day, she'll be able to do the injection process all herself. That boggles my mind. We sing, we clap, we distract, and then it's over for the day, back into the fridge for tomorrow.

We all had the flu. It was rough, and Ellie lost a considerable amount of weight. I'm trying, TRYING to get her to gain it back, because I don't want a lecture at our next endocrine appointment that I'm not feeding her enough. I'm not sure, but it seems that she's becoming more and more picky about the things she wants to eat. She's almost, hmmm... selectively hungry? It's frustrating being in the stage where she can communicate some, but not enough to get her message across. We have family rules around food, specifically with regards to what is offered. If it's on the table you can have it, if it isn't, don't even ask. I don't believe in fostering pickiness around food. All Ellie seems to want are bananas, which she would gladly eat by the bunch, if allowed, and cookies. Cookie? No. Cookie? No. Cookie? No. Cookie? No. Cookie? No! Cookie? Nooo! Coooooookiiiiiiieeeeeeee?!?! No! Banana? Sigh. No, you cannot have another banana. Here, have some chicken. *Spits it out*. Have some veggies *throws them on the floor*. Rice? Pasta? Cheese? *throws plate over the edge of her highchair, which I catch before it hits the floor.
Frustrated, because the rest of us have finished eating, I clear the table. I start cleaning up, and Ellie starts again. Banana? No. Cookie? No. Banana? No. *Points at her bowl on the table*. I put it back in front of her. She eats it all up. It is so hard at times not to give in, but I will not give in. I have to stay strong!

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

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!

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.

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

Just diagnosed with Prader-Willi Syndrome?

You are NOT alone!!!

Team Ellie 2012

Ellie's Campaign Page

I am so excited for this year's One Small Step walk! Last year, I really didn't know anything, but a bit about Prader-Willi. This year, I've lived a year with it, I know so, so much more than I ever imagined I would.

This year, I am so motivated. I want to raise $10,000.00

I want to make a difference in my daughter's life. I want them to find a cure for the hunger of PWS. I want her to be able to grow up to live an independent life.

This year we have witnessed the truth behind the saying "it takes a village to raise a child". I would love for our friends to fundraise with us, walk with us, and rally behind our sweet little girl, for her future.

Another day here. Can you believe my sweet little girl is already 9 months old??? Three quarters of a year old. I can't.
She weighs 4.9kg, and is 54.9cm. That's up a lot from 1.374kg, and 39cm at birth!
Dr. Dee came by today, and here is the latest. They are going to start Ellie on growth hormone, next Monday! 7 days from now. One short week.
She reiterated that starting gh therapy is not without risk. Ellie's airway might fail, and she might need intubation. She said they are always able to save kids when their airways collapse. But, she doesn't think that will happen. The head of the ICU, who was the one to say "no gh therapy without a trach", has even changed his tune, and believes Ellie will be okay.
The difference in her strength is undeniable.
No word on how long we will have to stay after they start.

This day feels like it went on forever, and it's only 7:46pm.

Jakob went to bed early last night, at 7:30pm, as part of a new bedtime routine. I know that when Ellie comes home she is going to be trained, and she already loves her schedule, so ideally, I will manage to get a good routine in place for Jakob, now. He woke up early, which is fine for me, and early for us means 7:45am :)

Ellie's day consists of waking at 7am, feeding at 7:30am, having a bath, playing/cuddling until 9am, sleeping until 10:30am, feeding, playing/cuddling until 12pm, sleeping until 1:30pm, feeding, then playing, doing physio/ot until 430pm, feeding, then napping until 6pm. Then she's awake until 7:30pm for her last feed of the day, and then she goes to sleep at 8pm. She sleeps through the night, provided her BiPAP mask stays on.

This morning we got up, had breakfast, then got dressed for the snow, and headed outside to play. I got cold quickly, but the boys were out there for over an hour, making snow angels, throwing snowballs, generally chasing each other around. We are the only unit in our row that has young children, so the backyard snow was pristine. Not entirely sure where the dog next door has been going, we didn't see any yellow snow! I folded laundry, and tidied up the kitchen.

After they came in, we had hot chocolate, and I warmed up last night's leftover turkey chili. Mmmm, so good. We ate lunch around 11:30am, then Jason got ready and went to work. Jakob was tired from all the fresh air, and went down for an hour long nap. Around 1pm, we were ready to face the day again, and went to spend the afternoon with our Ellie-belle. My word, they are adorable together. Jakob just loves Ellie, and Ellie thinks Jakob is the most fascinating person in her world. She is crazy about him.

The three of us snuggled in the big la-z boy chair, until Jakob decided he wanted his own chair, and then they watched a couple movies. There's been a lot of turnover in the ICU this week. People who had been our neighbours for a few weeks went home, and now there are three little babies around us. They're all under a month old, and all almost as big, if not bigger than our big little girl.

Dr. Dee came by for a brief chat, and to tell me how impressed they all are with the progress that Ellie has made in physical strength, level of alertness, and interaction. She said that it's possible Ellie's growth and improved tone might also be reflected in her airway, so now they are considering trialing Ellie on growth hormone as early as the end of next week (trying to get in as much strength before then), and seeing how she does. She did mention that Ellie would have to stay in the ICU for quite a while, and likely until she proves the gh doesn't negatively impact her breathing. She said they will be on alert for emergent situations that might lead to Ellie needing to be intubated, but they're willing to take the chance that she can do well on the gh. I'm so nervous putting it out there, because I don't want to be disappointed, but maybe Ellie will manage not to have to be intubated. Oh, I can only hope, and pray, and believe she has it in her.

We left around 4:45pm, just after her feed, and went to my mom's for a little visit. I hadn't planned on going, but traffic was bad, so it was much easier to stop in there until the rush had passed.

We got home just before 7pm, Jakob went straight into the bath, and I worked out. I feel proud of myself for actually making myself sweat. I didn't do a long workout by any means, just two reps of the circuit we did at the kickoff to Choose to Lose.I did a quick warm up, the 45 seconds each of inch worm, alternating lunges, side lunges, prisoner squats, push ups and step ups, twice. To end my workout, I did three minutes of plank, and a minute on each side of side plank. By the time I was done, Jakob was asking to get out of the bath.

I dried him off, got him ready for bed, read him a few books, sang a couple songs, and turned off the lights. It's now 8pm, and completely silent from his room. I can only hope the routine establishes itself quickly. I can't even begin to explain how nice it is to have a few hours of me time!

I am trying, ever so hard, to be patient with this whole process. Honestly, it is a gut-wrenching experience, but it could be exponentially worse, and I am conscious of that.

Today, I met with Dr. Dee and she would like to wait another few weeks to see if Ellie grows any more, longitudinally, before giving up hope that she can do it. Next week, they are going to repeat the miserable growth hormone stimulation test, to see if the results differ from those in the fall. If they do, if she "fails" the test, then they will be more inclined to start gh therapy sooner, rather than later. If she "passes" again, they will try to hold off until she grows into the new BiPAP mask, on her own, before starting. Then, when she fits the new mask, they will initiate gh therapy, and monitor her (still in hospital...) until they're sure she reacts well, and doesn't suffer from any respiratory complications. Realistically, we are looking at a couple, if not three more months in hospital.

They do not want to trach her. But, if she reacts poorly to the gh therapy, or if she doesn't grow enough before that count down is done, they will.

I'm not sure what I want. All I want is for my family to be whole again. I'm exhausted, and it has only been three weeks. Three short weeks, where Ellie has been missing from our daily household routine. I don't look for her any more, it seems I have adapted to her absence.

On Sunday, we are very grateful to have a photographer from Helping Hearts, coming to photograph Ellie. I am so excited!

You wouldn't believe the progress she is making. She is awake all day, she actively seeks out attention, raises her arms to be picked up, babbles, laughs, smiles, winks. She interacts so much. Physically, her sitting has improved exponentially, she can now easily roll from back to belly (but then she gets stuck), and she can finally bear weight on her legs. She is by no means the same baby that was admitted in December, prior to commencing bipap. She is amazing.

A nurse today, told me that Ellie lights up the room whenever she enters. She really is our shining star.

It seems so wrong to have our life going on as it ever did, while Ellie spends all her time in the ICU, missing out on so much. Snow, for example. She has never seen snow, experienced the cold, marvelled wide-eyed at the sight of white flakes falling from the sky.

I remember Jakob's first snow experience like it was yesterday, yet it was over three years ago. He stared up at me, blinking, wondering who was placing icy kisses on his face.

I am trying, so very hard, to be optimistic about her next assessment. Every ounce of hope I have is being thrown into believing she has grown. She has to have grown enough. I desperately want her to be able to experience spring, summer. Beaches, swimming, sand, all those things you have to avoid with a trach. No camping, no trips away, no crowds. She has to have grown enough.

We spent the evening with Ellie, Jakob watched a movie, then played for a while with a pink bus, and then colored on one of those magnetic doodle boards. Ellie was content to be passed between Jason and myself, happy to roll around on the play mat, to watch her big brother playing. She dazzled us with smiles, and made us laugh with her funny faces.

I fed her, changed her, danced with her, and sang to her. Tonight was the first "bed time" I was present for, in too long. Most of the time, I simply can't keep Jakob up so late, but tonight we made an exception. Ellie is very attuned to her schedule, and she knew it was her last feed of the day. She knew that it was almost bed time, and tonight, when she knew the day was done, and all that was left was to sleep the night through, she didn't resist my cuddles, she didn't cry as I set up her BiPAP, she was beautifully calm, and ready for rest.

If only she were home.

The intent of this post is to clarify Ellie's current situation in hospital. I've been posting here and there about what's been going on, but it is a bit confusing, so hopefully this helps!

Ellie is currently in the ICU/TCU at Children's Hospital. She is there indefinitely. Her main problem, at present, is that her face is too small for the bi-pap mask. As she is dependent on the mask to maintain her airway throughout the night, she isn't able to come home until she fits a proper mask. The mask they are currently using is one that has been discontinued due to safety issues, and is only appropriate in a hospital setting, with constant monitoring.

As part of the treatment for PWS, it is imperative that Ellie start growth hormone therapy prior to her first birthday. Although wildly debated, and not well researched, GH therapy has the potential to cause obstructive sleep apnea in non-apneic children. As Ellie already has severe obstructive sleep apnea, introducing a medication with respiratory side-effects could be life threatening. Her doctors do not understand the mechanics behind her apnea, and feel uncomfortable taking any chances with her breathing.

If Ellie can grow, in the next month, big enough to fit a safe bi-pap mask, she will be started on GH therapy, and after a week of monitoring, will be allowed to come home on her bi-pap machine. We met with nursing support this week, as part of our application for night nursing hours. She will still require night monitoring, but probably not as intensely as she presently requires.

If Ellie doesn't grow sufficiently by the time endocrinology requires her to start gh therapy, her doctors have decided that they will need to secure her airway. The will give her a temporary (6month - 1year) tracheostomy, to bypass her obstructions. It is likely she will not require any ventilation, although she will need humidification at naps and night time. The recovery from trach surgery varies, but it is likely she will need to be in hospital 6-8 weeks afterwards. The training course to be able to care for her at home with a tracheostomy is 6 weeks.

So, that's her situation. Best case scenario, she is home at the beginning of February, happy, healthy and growing. More likely, she will be home in time for her birthday, with a trach, and a new lifestyle. The positive to both outcomes is that she will be home.

I knew this morning, that Jason would be home early from work, and so I planned to spend the morning with Jakob, anticipating that the three of us would go see Ellie in the afternoon.

Jake and I had a lazy morning. He woke up just past eight, and came into my room. I tell him every morning, and I mean it with all my heart, my favourite time of day is when we snuggle in bed. We played "tent", where I prop up the comforter, and he pretends he's camping. He brought all his stuffed friends over, we told stories, and made up games. He doesn't really like to snuggle any more, but he does like to lie around, and so we played until almost ten. When our stomachs started to rumble, we headed downstairs for breakfast.

I made pancake cupcakes (pancake batter in the cupcake maker), with blueberry syrup. Jakob ate his breakfast, while I puttered around the kitchen rearranging appliances, clearing out bottles, and tidying up. I got rid of all my Snappies bottles, and felt sad that my breastfeeding/pumping days are behind me. I noticed the two cases of formula in the laundry room, and made a note to remember to drop them at the food bank. They will expire before Ellie comes home, and the hospital provides her formula.

Not wanting to feel sorry for myself, I decided today was as good a day as any to get some crafting done. Jakob and I made an extra Santa hand ornament for Great-Grandpa. Then, we moved on to playing with the goopy, fascinating mixture of corn starch and water (1c cornstarch, 1/2 c water). We played with that for a good hour, before it started drying out, and Jakob was ready to move on. We cleaned up, I made myself a cup of tea, and then we decided that we would put together Ellie's quilt.

I remember piecing together the different fabrics that I loved from past projects, but I never found the time to actually sew them. Knowing that Jakob wouldn't have the patience to sit around and wait for me to do it properly (ironing and pinning), I just threw it all together. I love the way it turned out, and if I could keep track of my camera - which I think is at my parents' place - I would take pictures. I serged lime green minky to the back, and took it with me to the hospital. It looks so great on Ellie's crib, and I think she likes the different patterns.

When Jason got home from work, I made lunch. Nothing fancy, just pasta with homemade pesto sauce, bacon and tomatoes. I had never made pesto before, it's soooo easy! Two cloves of garlic, pulsed in a food processor. Then you add half a cup of parmesan, 1/4 cup sunflower seeds (you can use pine nuts instead), 2 cups of basil leaves, and two tablespoons of olive oil. Blend until it's the right consistency for you, and either use it right away or store it in the fridge with a thin layer of olive oil on top so it doesn't discolor! Easy peasy!

After lunch, we went to the hospital. Little lady was wide awake when we got there, and her eyes lit up when she saw me. She'd had a great morning with my mom, and had a long nap, so she was ready to play. We snuggled her, and she was full of smiles and giggles. She's definitely gaining weight, and I am so eager for her growth check next week.

We went for a walk up to the third floor, Canucks playroom. Jakob loves it there, and Ellie was so happy to be off the ward. She started fussing after about half an hour, so I left the boys to play, and the two of us went back downstairs. It's funny how some moments solidify themselves as memories you can recall with the utmost clarity. Walking down the hallway with her was one of those moments. We walked slowly down the hallway, admiring the stars on the walls, the mirror in the corner, the spots on the floor. She clung to my shirt with both hands, snuggled in as closely as she could to my bosom, rubbing her nose against my shirt. She giggled, the most beautiful sounds you could imagine. For a brief moment, it was just the two of us, in our own world, just a mother and her daughter, and nothing but love and light. It was a beautiful, tiny little moment that meant the world to me.

We got back to the ward, and I put Ellie down for a little nap. I started coloring a puzzle for Jakob, but mimicking the patterns in Ellie's quilt. I was almost done when the boys came back, and it was time for Ellie's feed. She was sleepy for her feed, but still had no problem finishing within twenty minutes. She has progressed so well with her feeding, I am certain she won't need a g-tube, and I will make sure the doctors listen to our wishes for her to prove she can feed without one if she needs a tracheostomy.

Jakob watched a movie, and Grandpa, and big-Papa came by for a little visit. After they left, it was time for us to leave as well, and Ellie effectively broke my heart. I had her all tucked in, with her baby doll nestled in under her arm. Her little seahorse was playing its lovely tunes, and she was calm. I gave her a snuggle, and told her I loved her, gave her a kiss, and went to leave. I looked back, and she was crying. She wasn't making noise, but she was crying, tiny little cries. I went back to her, and she lit up. She smiled the biggest smile I've ever seen. I snuggled her a little more, and told her I didn't want to go, but I had to. I kissed her a thousand times, and backed away slowly. She cried, again, pleading with those massive blue eyes, for me not to leave her. It was devastating.

The three of us went to have dinner with my mom, my brother and his girlfriend. After dinner, we went to the community arena, for a public skate. It was our first skate of the season, and so much fun. It felt amazing to race around the ice, and to see the joy on Jakob's face, at finally being able to "play" hockey. He didn't realize how difficult skating would be, but we promised him lessons, so I will look into that this week.

It's been a long, emotionally charged day, but a great Saturday. I am grateful for the moments. What is life, but for a collection of moments?

Today was a preschool day, and I felt like I owed it to Jakob to get him there. I'm so glad I did. We made it just in time, before class started, and I had a chance to fill his teachers in on Ellie's situation. They were so empathetic, and nice about it all that I started crying. Sigh, I've reached that finnicky point of having dealt with too much to keep it in any longer.

Jakob wanted to bring the two musical donkeys we have as show and tell. One is his, one is Ellie's. He insisted on bringing Ellie's. "I want to tell my friends that Ellie is at Children's Hospital".

I managed to get out of the classroom before he saw me crying, and walked right into the open arms of a very good friend. She talked me through things, and soon I pulled myself back together. I'm so, so lucky to have the friends I have.

I went for coffee with another friend, and soon it was time to pick Jakob up again. He talked, and talked, and talked about things he did at school. He was in such a great mood. We went home, had lunch, and visited with Jason for a bit. I made Jakob a batch of the best play dough* then the two of us went to see our Ellie.

At the hospital, Jakob and I made a little side trip to the Foundation's office to drop of the rest of our donations towards Ellie's NICU baby tile. We raised $1200!! Our friends and family are so very generous, and we are really excited to have been able to give back to the hospital.

Ellie woke up as soon as she heard my voice. She was so happy to see me, and it hurt to know she missed me so much. Throwing salt into that wound, an insensitive (although I'm pretty sure it wasn't meant to be malacious) nurse, told me "She's been waiting all day for you". Another big sigh.

I fed her, changed her, talked to her. Jakob played with his play dough, blew bubbles for Ellie, watched tv. We were there for most of the afternoon, until close to 5, when I was supposed to meet my parents. With a heavy heart, I told Ellie I would come back to see her before I went home.

We had dinner with my parents, went to an appointment together, and by that point it was already 7:30pm. I wasn't sure what to do, my Mommy Guilt was killing me, and so I listened to my mother, who told me to go see her for just half an hour. Jakob was happy to go see her again, you wouldn't believe what an angel he is when we're there with Ellie. He loves her so, so much, he will do anything (including being very quiet for several hours) if it means being able to stay with her. He always cries when we leave her.

I am so glad we went, she was wide awake, and incredibly talkative. She is currently working on "b's" and attempting raspberries. I need to video her sounds, because chances are good they're going to disappear with the trach. That sucks.

I've been reading about g-tubes, and I am not convinced that is the right way to go with Ellie. I don't argue with the trach placement, I think that's a good thing. The g-tube, though, we worked SO hard with Ellie to get her properly oral feeding, I don't want to lose all that progress. Although it would mean going upnder twice, and two separate surgeries, I am going to ask that they at least give her the chance to try bottle feeding with the trach. She has the energy to oral feed, her suck is good. I can't see a reason to take that away from her, and to increase the likelihood of feeding difficulties later on. I hope they will be open and reasonable when it comes to that. If she can't do it, she can always get the g-tube later.

Tomorrow I'm meeting a friend for coffee at Children's, then on to my mom's birthday lunch. I think I might move Ellie's crib back into her room over the weekend. It's hard having a constant reminder that she isn't here at home with us. And, when she does eventually come home, we will have a night nurse, who probably doesn't want to watch Jason and I sleep...