Wednesday, November 30, 2011

We are just waiting for the respiratory therapist to finish up with her other patients, so she can come give us our take_home equipment, and send us home.
We have only been here three days, but already time blurs, and I can't remember what happened Monday, yesterday, today. All the doctors, nurses and tests blend together. It is hard when you have so many people involved in looking after a child!
We have our endocrinology appointment on the 6th, that's just a week away! Then, we have a follow-up appointment with the trach and vent clinic, on the 13th to ensure this whole bi-pap situation is working out.
I am worried, a little, about something going wrong, like the mask obstructing her nostrils, if she swats at it, causing her to stop breathing. We have the pulse oximeter machine as a back up, to let us know if her sats fall, which they would if she had a problem, but it isn't considered a life-saving device. Our doctor, a self-professed Ferberizer, told us to stay in her room with her. If something happens, chances are I will notice before a machine does. So, now to decide if I move into her room, or if she moves into ours, crib and all. If I go into her room, Jay and I will miss out on our time. I think it's time to move the crib!

Tuesday, November 29, 2011

I am exhausted, but, for the first time in so very long, Ellie is well rested.
We checked into the ICU's transitional care/special needs unti yesterday afternoon. Before long, she was fitted with a bi-pap mask, and started on the machine. We did one trial nap off the monitor, and it was bad. Little miss desats sooo often. On the machine, she sats above 97. For the first night in maybe her whole existence, ellie spent the whole night getting real sleep and staying properly oxygenated. She doesn't fuss, it's as though she knows it is helping her.
Our doctors are thorough, and while I love that, it also scares me. Ellie doesn't present with failure to thrive, at all, she is just a perfectly formed, delicious (not my word) baby, who is micro-sized. Medical genetics is being hauled back into the picture to see if there is something else going on in addition to PWS. Heaven help me, I don't know if I could handle that.
Scratch that, I can. I have no choice.
Today, our ward neighbour was diagnosed with a malignant brain tumour. I thank the universe for gifting us with our healthy baby girl.
It's heavy here.
In addition to genetics, we are back with neurology, who previously "graduated" us. Apparently, Ellie's degree of apnea is highly unusual, especially given her general good tone, and lack of tonsil/adnenoid problems. I am staying away from guessing. I don't want to know.
Ellie is being fitted with a 24 hour holter monitor, because her heart rate isn't as variable as "normal". Today she had an EKG, tomorrow an echo cardiogram.
Poor little thing is covered in wires. The holter monitor, two sat probes, heart and breathing monitors.
Sigh. One day at a time. It is all good.

Sunday, November 27, 2011

Apologies for being absent! The journey back from England wiped me out, and I had the stomach flu on top of the time change, so I'm only just starting to feel like a human being again.

The kids were so very well behaved on the flight home. Jakob had a really upset stomach, but he was quiet and snuggly, and very motivated to see his Daddy. I was so happy to see Jason, and my heart burst when Ellie saw him and broke into a huge smile. Ah, she's Daddy's girl through and through.

We got home late on Monday, and got back with the program on Tuesday. The jet-lag helped us get Jakob to school with plenty of time to spare. We've been waking really early, and going to bed early, which is working out quite well, I must say.

On Wednesday, Ellie met with the ENT specialist at Children's Hospital. They looked up her nose and down her throat with a camera, and didn't find anything worth operating on that would fix her apnea. The doctor saw some swelling and irritation by her vocal chords, which he thought might be due to silent reflux. He gave us a prescription for an anti-reflux medication, which we've started her on already. They said it might take up to six weeks to notice an effect.

Because we can't operate to fix the apnea, I stopped by the pulmonologist's office to put my name on the appointment list for follow-up. I thought it would be a few weeks before we got an appointment, so imagine my surprise when a doctor called me the next morning telling me they wanted to get Ellie fitted with a breathing apparatus as soon as possible. We've been tentatively booked in for Monday and Tuesday nights of this coming week. Ellie has to spend the nights at the pediatric intensive care unit, the only place they have the proper monitoring equipment to start her on a c-pap or bi-pap machine. If she were older, she would just be able to start at home, but because she is so little, and her lungs are still small, they don't want to mess with her breathing. I am not, NOT, looking forward to spending more nights in the hospital, but it isn't about me. It's about Ellie.

I love that girl so much.

Friday, November 18, 2011

Today, my mom, Jakob, Ellie and I went to Harrod's. What a wonder of a place! We walked around the perimetre of the whole store, looking at all the window displays. We decided we most definitely were not going to eat lunch inside, as it was bound to be extravagantly priced. We went in through one door, welcomed by a man in a green suit, who Jakob found to be quite impressive.
We took the lift to the fourth floor, home of Toy Land. We were on a mission to bugy Ellie a baby doll.
Right when we came out of the lift, there was a beautiful, unbelievably decorated tea room. It was too fancy for the two of us with the kids, so we walked past. Just around the corner, was the Tree House. Oh my word! As soon as we set eyes on the place, my mom and I both said "we're eating here!"
The Tree House is a kids focused restaurant, with games on the walls, hopscotch on the floor, picnic tables, everything a kid could want! Jakob loved it! The food was beautiful, and delicious. The coffee was the best I've had this whole year, seriously!
After lunch, we spent seriously, a couple hours wandering around the fourth floor. All name brands, you know, the luxury ones, like Gucci, and Burberry, and Ralph Lauren, etc... I was blown away! I saw the most gorgeous romper, which I would have loved to put Ellie in, if it hadn't cost 300 pounds!! SERIOUSLY! Who can pay that???
After the clothes, we moved on to the toys. I found the perfect doll for my Ellie, then set to finding something to bring home for my niece. While I was looking through the many, many items they have available for little girls, I fell in love with a mini apron, featuring Jemima Puddle-Duck from Peter Rabbit. I picked it up, and a flash of images popped into my head, of Ellie grown up a little, and baking with me. Then, reality hit me, and I burst into tears. Right there, in the middle of Harrods, I dissolved into a puddle of tears, clutching that damn apron like my life depended on in. If anyone noticed, I wasn't aware. I slowly put the apron down, and made my way aimlessly through the rest of the floor until I caught up with mom and Jakob.
Little man, am I ever blessed to have him. He turned my mood around quickly, as we explored the boys toys. He settled on a puzzle box for the plane ride home, and we found a couple gifts, paid and went back down to the main floor.
There, I went looking for a new tea cozy, and settled instead, on a new apron for myself, accompanied by some lovely oven mitts.

HARRODS Clarissa Apron

HARRODS Clarissa Apron (clipped to

HARRODS glove (see more cotton gloves)
They made me feel mildly better about my melt-down.
Finally, after paying for those, we made the longish journey home by bus, noting the route we will take tomorrow to go to Winter Wonderland at Hyde Park.
Three more sleeps and we will be home!

Thursday, November 17, 2011

I am thinking of writing a book for my baby girl, about her first year. I have pages, upon pages of ideas, of memories. All I need, is the time to write it, and the commitment to see it through until the end. My blog, serves a good purpose, as I wrote down everything in those first weeks of complications.

What do you think? Would you read a book about finding out your child has a disorder that will affect them for the rest of their lives?
It's amazing, how something as insignificant as a poorly worded, grammar-less email, full of false accusations, based on nothing but an assumption, can obliterate a good mood, and send my body through the process of shock.

Alas, I've just experienced that, and it feels horrible.

I am happy to be moving, we will be moving, so I can create distance between myself and the offending party and their family, who apparently also think I'm an abhorrent person.

*deep breath, deep breath*

The world is full of uneducated, assuming individuals, who have nothing better in their lives to do than to bring others down, to create drama, and to hurt others, instead of seeking out the truth, by asking the appropriate questions, of the appropriate individuals.

And with that, I'm letting it go...

Tuesday, November 15, 2011

At present, Ellie is staring at her elephant, hanging over her head. I finally rigged a system over here where her toys can hang up above. We just had an intense physio workout, and she's getting so much stronger. I'm really impressed with her progress. It'll be interesting to see what our physiotherapist thinks when we get back.

I bought the most awesome bath accessory for the kids.

It is called the Aqua Pod, a Mothercare exclusive. It's sort of like a hard bumbo for the bath. Ellie is too little to benefit from the back park, but she sort of hangs on the support pole, and she had the greatest bath with her brother! She spent the whole time actively lifting her head to watch him, and giggling at him. If you know my Ellie, that's a big deal.

Monday, November 14, 2011

I am wiped.

Today was awesome. Mom, Jake, Ellie and I got up early, had breakfast, then rushed out the door to take the tube to Westminster Station. We walked to Westminster Pier, and took a boat up the Thames to Greenwich, where we met up with a fellow '08 FF due date mama, and two of her three children. We went out to lunch, then went for an incredible walk through Greenwich park, then up to the top of the hill to the observatory, were we saw the Greenwich Meridian Line. Pretty cool. We had coffee up there, then wandered back to meet our boat. Loads of fun for Jakob, and it was so nice to meet someone I've "known" for close to 4 years!

We took the train home, then my mom took Jakob home, and I went to the grocery store to buy ingredients for dinner.

Home now, enjoying a glass of wine, having called the ENT clinic to change around the time for our appointment (they scheduled us for Thursday, we're not back until Sunday!) and organized to have the results of the sleep study sent to the clinic. Hard to coordinate everything over there from here.

I think I'm going to bed as soon as dinner's done. As they say here, I'm knackered.

Saturday, November 12, 2011

Today was lovely. We got up relatively early, and took the train up to St. Albans. What a beautiful little town! My brother is graduating on Tuesday at the cathedral there, and I wanted the chance to see it myself, since I won't be taking the children to the ceremony.

We walked, a lot, most of the time I had Jakob in the sling, which resulted in quite the workout for me. Too bad I keep offsetting my activity with calorie-dense foods. I have had cream tea twice in two days! My jeans are getting a bit snug, so I think I might go to the gym with my brother on Monday evening, after my visit with a friend and her littles in Greenwich.

I've been thinking a lot about this blog, and about what I want it to be. Every time I start changing things, time runs out, and I get too busy, and it ends up blah. I have a mind to go through all my old posts, to fix the spelling errors, the run on sentences, the posts where I just stopped mid-thought. That would take a lot of work. It's a shame I didn't bring my own laptop on holiday with me, I could have worked on the plane ride over and home again. Alas, I'll have to find a way some other time.

Ellie had a good day today. She is a pro at doing her physio exercises, and is getting stronger every day. She was very awake this evening, and we had a half hour long conversation, her cooing and me responding to her. She also giggled a fair bit. I can't imagine ever being away from her, she's so precious.

Right now, Jakob is soundly off in Neverland, my brother is in his room, the living room couches are occupied by my parents, who are both reading. Ellie is sleeping beside my mom, and I'm sitting at the dining table, taking it all in.

This flat is not big. It has three bedrooms, two and a half bathrooms, the most awkward hallway that always results in my banging either a shoulder, hip, or both as I try to make my way from bedroom to kitchen. The kitchen is small, with a tiny four-burner stove, little oven, minute dishwasher and cute fridge. Nothing here is over-sized, nothing here is extravagant, but everything is very nice. Being here, four adults, two children, living mostly peacefully, makes me think that we really don't need a big home. Sure, it would be nice. But, is it really necessary?

I'm looking forward to Jason and I going to Calgary in the new year, to check out what houses are available in our price range. Knowing we don't need too much space, more properties are probably available than I previously thought.

*Yawn* tomorrow is going to be a long day. My brother and I are going shopping, without the children, so I better get to bed before it gets to be too late. I haven't been sleeping well, I have so many worries about Ellie. I sure wish there was an off button to my brain.

Thursday, November 10, 2011

I'm lacking in the photo department. I'll try harder on the weekend, this week has been so busy!

Today, we went to Oxford and Regent Streets, and my word, if there wasn't a literal sea of people. I cannot believe how busy and buzzing this city is, it is enough to blow my mind. I am happy to come back to our flat in the evening, set everything down, have a glass of wine and unwind. London is definitely too busy a city for me to ever consider moving to. I am not entirely certain just how my parents manage day in and day out!

None the less, I'm happy to be here now, temporarily. Tomorrow I'm taking Ellie to a nearby doctors office, to have her weighed to make sure we're still on track with her weight gain. While I am enjoying time off from appointments, I don't want any surprises when I get home. I'd feel awful if she gained too much, or too little. I still have difficulty wrapping my brain around the fact that my INFANT is on a diet.

Everywhere we go, on the bus, the tube, the grocery store, the street, people comment on how very small Ellie is. When I tell the that she will be 5 months next week (I've quit using her actual age, that causes even more of a commotion), I'm immediately met with the most bizarre looks. Almost as if the people think I'm starving her, or think that I'm lying. Today, for example, we were in Hamley's Toy Shop - lovely, amazing place to visit- and a clerk there stopped to gush at Ellie, all snug in her sling. The first thing she said was, "Oh, she's soooo teeeeny". I told her, why, yes, Ellie is a bit petite. She asked Ellie's age, I told her 5 months, she asked if Ellie was premature, and I said yes, 8 weeks. She then said, well, then she isn't really 5 months, she's only 3, and shouldn't I know to use her adjusted age. Sigh...

I find other people simply exhausting. I spent the first few days wondering why no one makes eye contact here, why they don't smile in passing. Now, I'm grateful for it. Too many people, with too many opinions.

Tomorrow, we're going to visit my dad at work, go for lunch, then my brother and I are going to see Wicked. Should be a lovely day.

Wednesday, November 9, 2011

Today I'm up late reading about scary PWS stuff, and I know I shouldn't be. It just stresses me out :(

I am worried about Ellie's sleep study results. I wonder what is going to happen with regards to her starting growth hormone. Will it make her apnea worse? Are we putting her at risk? What are the benefits to starting in December, versus waiting until she's older? What are they going to do about the apnea? Surgery? Monitors? Oh god, are they going to put monitors in our house?! Is she going to go back on oxygen, or bi-pap, or cpap? Or nothing? So many questions, my head is spinning.

I am hyper-aware of her apnea episodes. They are terrifying. And, she's oblivious.

Tuesday, November 8, 2011

Yesterday, Jakob, my brother Sander and I went shopping at Westfield Mall in London. The mall is amazing. It's beautiful, it's modern, it has a bunch of incredible shops, and a great food court. Clearly it's popular, since Justin Bieber decided to launch his new Christmas album there, at the same time that I was trying to buy new clothes. Argh...

I never really understood the Bieber Fever. I still don't. But, having experienced the auditory assault that is a crowd of Bieber-crazed, crying, screeching teenagers, I am going to go ahead and say "I am not a fan".

Other than the hassle of the crowds of fans we encountered EVERYWHERE, I did manage to find myself a few new outfits, didn't lose Jakob, and had a lot of fun with my brother.

We took the overground home, dropped Jakob off, and then went out to dinner at a hole-in-the-wall Italian restaurant up the street. I ate more last night than I probably should eat over the course of three days, but it was heavenly!

Today is my daddy's birthday! He is at work until 6pm, so we're hanging around the apartment today. I am going to make him Red Wine Beef Stew for dinner. We are going to go up to the leisure centre, so Jakob can play a bit, then to the library, then home for dinner. Tomorrow I think we're going to go to the Natural History Museum!

Sunday, November 6, 2011

We have arrived

We didn't bring a camera on board the plane, so I have no photos to upload, yet!

I'm going to start off by thanking the Universe for blessing me with the most incredible children. I seriously could not be any luckier to have them. Traveling with them was a complete delight!

Jason dropped us off at the airport. I put Ellie in the sling, Jakob and the luggage on the cart, and went in to meet my Mom. We got our boarding cards, cleared security with no hassle at all about bringing breastmilk with me, then spent the next hour and a half hanging out in the children's area close to our gate. I ran Jakob up and down the wing of the airport, until he was exhausted. We got a snack, and then we boarded the flight.

We had four seats, paired up in rows 23 and 24. That way, Mom had Ellie, and I had Jakob. Ellie had a bottle at the beginning, and one before landing, and slept the rest of the time. She was perfect. Jakob watched Cars 2, some tv shows, ate dinner, and then slept until an hour before landing. He even asked to use the washroom twice!! He was incredible, and very polite to the lady seated beside her. We landed just after 12pm, waited for everyone else to unload before we did, as not to be too rushed.

Because we were traveling with a baby, they let us cut the line at passport control, so we didn't have to wait at all. Our bags were there when we got to the carousel, and our driver was waiting for us when we arrived in the welcome hall. He had two awesome car seats, and plenty of room for all our baggage. There was traffic leaving the car-park, but that wasn't even that bad, since we'd brought along snacks and new toys for Jakob. Waiting in traffic was our only hold-up the whole time!

We got to my parents' flat before 2pm, and Jakob was SO happy to see my dad and brother. He's been my brother's shadow ever since. Forget about me, Alexandre's where the fun is at!

We had a nice little visit, showers, a nap, then were up again for dinner. I can't even begin to explain how wonderful it was to have that first meal with my family all together again. I miss them immensly. We went to bed around 9pm.

Jakob was awake from 2am-4am, and when he finally fell back asleep, Ellie woke up, completely confused with the time change, and hungry. I fed her (and was really excited about the new pump my parents bought, it's fantastic!) and we all went back to sleep until after 10am. It's hard coming this way with the time change!

Today is my brother's 23rd birthday. I've missed a lot of birthdays, a lot. It was like old times being here to bug him in the morning :)

We walked up to the grocery store, they do every day, as their fridge is TINY. Then we had lunch, a bit of down time, and then went for an awesome uphill climb to the Hampstead high street, to pick up an incredible Dobosh Torte Cake. We came back (me sweating, my parents laughing at me) and ate some cake, and now here we are.

Jakob is sleeping, Ellie is sleeping, my brother is writing music, my mother is cleaning up the kitchen, my daddy is reading, and I'm getting caught up.

Tonight we're going out to dinner, in Covent Gardens, and will be back, hopefully in time for an early bed time.

Who knows what the rest of the week will bring, needless to say, I'm so happy to be here.

Friday, November 4, 2011

London Calling

i am taking the kids across the pond today, to visit my family! My parents and brother live in London, and while my mother comes back often to visit (she just can't stay away from her grandbabies), I only get the opportunity to see the Men a couple times a year, and never for long enough.
So, the big day has arrived. Our bags are mostly packed, I've gotten treats ready, changes of clothes for the kids, a different shirt for me, blankets, bottles, just about everything I can think to bring, without over packing.
What a beautifyl day it is, too. I am so looking forward to flying over the city and seeing it sparkle. Vancouver has that going for it, it's a spectacular sight from above.
We're going for a little over two weeks, sans Jason. The kids and I are going to miss him like crazy, but he's going to be best man for his best friend Jeff's wedding, and I wouldn't have him miss that occasion for anything. I wish I could be there to see them get married! Part of me is a little envious that Jason gets to spend a week in the tropics, while I spend my time in the fog, cold and rain of London. But, there is so much in London I want to see! I have never spent more than a handful of days there at a time. London has always been a pass-through point for me, never a destination. I have a list of things I want to see, museums I want to explore. I can't wait for the evenings, when my parents take the kids, and my brother and I can go have fun, see plays, drink beer. I haven't spent enough time with my brother in the last five years, and I'm so looking forward to it, knowing -of course- that we will most likely try to kill eachother on Day 3, and then resume being friends. Ah, sibling relationships.
The time away from here, from all our appointments, from all the doctors, will be so good for Ellie and I. I can't wait to just spend my days with her, and not have stresses about what test is next, where we have to get to for what time, we can just enjoy each other.
And Jakob, well, I think I'm most excited about going with him. He is brilliant. I am not just being an egotistical, biased mother, either. He remembers everything. He remembers the apartment in London, from when he was 18 months old. He knows what the flight is like, he asks questions about everything. For a not-yet three-year-old, he knows so much. He will LOVE the Museum of Natural History, the Children's Museum, the parks, the libraries, the children with funny accents. He is going to love all of it, I am absolutely certain.
Tomorrow we will land in London, the car will come get us, we'll go to the flat and relax. Then, I'll go to the shops and buy ingredients to make my father a birthday cake, make a card for both Men's birthdays, and will plan out our vacation.
Best be off, there's a little man around here who ought to have a nap before we head to the airport.
Will post pictures and blog about our adventures while I'm over there, I promise!

Tuesday, November 1, 2011

On Sunday, we carved our pumpkins, and I got the chance to put my tiny pumpkin in a pumpkin :)
Yesterday was Halloween. Jakob loved every things about the day, especially the Trick-or-Treating. Ellie was Little Boo:
And Jakob was the Queen's Guard in the morning, and a dragon at night :)
I am not really looking forward to Halloweens to come. They will be so different when Ellie's hyperphagia starts. I can't even imagine what it will be like. I can't walk past Halloween candy without sneaking one, or thinking about eating one. Ellie will feel like that about all food, all the time... I wish I could freeze us in time.