Long time no write...

It has been a very long time since I last wrote.  In fact, it was October 1, 2013.  Shame on me.  Obviously a lot has happened since then!  I found 2 draft posts that for some reason, I never ended up hitting 'publish'.  I don't know why.  Maybe because often I'll think of ideas to write, but when I actually sit down to write, they don't come out properly.  Or maybe I'm just lazy.... yep - that's probably it.  So what have we been up to since October 1st?

• October: Ryan had his hernia repair surgery.  It was in his groin, so they didn't want to leave it too long.  He rocked surgery though, and didn't have to stay over night. I have a picture of him the next morning with a huge smile on his face.  It should serve as inspiration to any male who has to go 'under the knife down there.'  Ha ha, I kid... or do I...
• We had Hallowe'en.  Both kids got to go out this year. Ryan as Yoda, Sadie as Madeline.  It rained buckets so Ryan only had a few houses to visit and Sadie and I braved the whole (rather large) block.

*** If I were super blogger I'd have  a picture to accompany each point.  I have pictures, but by the time they load I will lose my train of thought.  Maybe a picture post will follow another day.  Now where was I...

• November:  Sadie turned 4! We had a very nice tea party for her at my parent's house and it was extra nice because both sets of grandparents were in attendance.  November birthdays are very tricky because it's the height of cold and flu season, so having a 'friend' birthday party wasn't in the cards this year.  Hopefully it'll happen one day... one day....
• We took in the Newmarket Santa Clause parade near the end of November and Ryan was able to join (insert very cute pics of both kids enjoying the floats)
• December: I got very brave while Martine and I had the kids at the mall one morning (yes, we went to the mall in December - those who know me know that was a big step in terms of my germaphobia).  We walked by Santa and there was no line!  We ran up (we really actually ran and squeezed in front of a family approaching the entrance).  Sadie stood beside, and Ryan was ok to sit on his lap. (insert picture of Ryan staring at the elf who was ringing extremely loud bells and Sadie smiling nervously).
• The lead-up to Christmas was exciting and nerve racking at the same time.  The previous Christmas we were not in a very good place.  We tried hard to make it 'normal' for Sadie but when I look back at pictures, there are a lot of tired eyes, and forced smiles.  This years pictures were a lot more 'real'.  Everyone was healthy which was HUGE.  Ryan was in a good sleeping pattern.  Eating was (and still is) an issue, but compared to where we were previously, it was definitely a happier Christmas. (insert festive smiley pictures)
• January:  On New Years 2013, it was the first time Ryan lifted his head up while lying on his tummy.  By 2014, he was cruising along the furniture.
• Scott turned.... an age and we took Sadie out to the Keg for a fancy dinner.  Being January, Ryan had to stay home.
• February:  I turned... an age.  Again, family dinner out, sans Ryan because it was February.
• Ryan was discharged from our CCAC therapists and picked up by the Children's Treatment Network therapists (for physio and occupational therapy).  I was really nervous about the change until I met the therapists.  They're AMAZING and what's even more amazing is that they would even go to his preschool.... if he EVER goes to preschool.
• March:  Wait - I'm caught up!? I have obviously glossed over a lot of detail, but basically this winter is slowly driving everyone crazy.  We (Scott and I) have been trying really hard to work on ourselves - after 2 very challenging years a lot has changed so now we have to change. The kids always come first and always will come first, but now when we can, we're trying to fit in things for ourselves. One MAJOR change is that we're moving to a brand new house.  We feel good about it - a nice space to start fresh (although it will be a mud pile for a very long time since we are the first of 4 phases to move in!)
• We move at the end of May, so in the meantime it's time to purge/pack/and organize!
• Sadie will might start at the new school in May.  I went to pick up her registration package (a big step) and made the mistake of asking how many kids will be in the class. 30.  What!? Apparently I haven't kicked my anxiety issues - or my public crying issue because I nearly had a panic attack in front of this poor secretary.  She was very nice, but still.  I know public school classes are big, but 30!?  yes, there's an EA in each class but that many kids does not help someone with a case of germaphobia! Hopefully once the sun starts shining and we can all have a little more fresh air, I'll feel a little better about it.  Or not. 

That's life with Ryan... a feeling of constant worry and always thinking of the 'what ifs'.  I know that it's important to live in the now and focus on the present and when I do that, I see that he's doing great.  But because I've been so intensely protective of both of them for 2 full years, it's really hard to rein it in and let them 'be'.  Or to let myself 'be'.  My family and friends have been amazingly supportive, understanding, and empathetic. Some have even pushed me a little (which I need!).  Ryan's 2nd birthday is approaching and I'm throwing around the idea of a meet & greet because he hasn't officially 'met' everyone yet.   We'll see. 

Anyway, sorry this is so long winded, that's what happens when you procrastinate something for 5 months!  I have lots of Ry related posts on facebook - that's another reason I've neglected the ol' blog.  Thank you for still reading, and for the continued support.

I can't remember when it happened or if I wrote about it already, but Ryan was discharged from the Sick Kids complex respiratory care team.  That was big news because I thought we'd be with them for at least 5 years!

ps. thank you to a certain friend for the gentle reminders to update my blog!

October 1

Wow. It's October.  I forgot to look back at when my last post was, but I know it was a long time ago and I believe we had just booked our trip 'down' east to see my parent's new place.  Well - that trip came and went and it was awesome.  Seriously amazing.  Here's some details about the trip.

It all started with confirming our tickets.  I looked for days online to find the best deals, best time of flights to coincide with feeds and naps, the 'cheapest' times to travel, etc.  Our nanny was heading back to Holland for about a month to get married, so we thought a change of scene would be good for everyone - we were right. 

Here's a list of what I was anxious about.  Most things have to do with Ryan:

• germs
• traveling with oxygen
• feeding him 'on the go'.  Since he's used to a certain routine with feeding
• naps
• germs
• forgetting something important (like his custom compounded reflux meds) - we didn't forget them!
• sleep - for everybody
• Ryan not having his therapies - OT, PT, feeding, AVT, etc
• germs
• list after list of what to pack

I lost a lot of sleep in the days leading up to the vacation.  I had lists galore and we were well prepared.  Until the day we left.  Everything was packed, organized and ready.  The plan was everyone except Ry had a suitcase, carry on, and personal item.  Scott and I each had a big bag, Sadie was 'checking' the small suit case that had Ry's clothes and her carry on had her clothes, and she had her backpack with activities for the plane.  Scott had a laptop bag and Ry's 'feed bag' or 'danger bag' as we called it because it was full of water, white powders (formula powder, calorie powder, and laxative powder).  (The details of our luggage are important so pay attention).  We got our neighbour who works from home to drive us to the airport in our car so that we could save on parking.  Genius.  We loaded up 2 of those really hard to push luggage carts for Scott to push and pull, I had Ry in the stroller, Sadie standing on the stroller, and I was rolling the o2 concentrator behind me. We waited for what felt like forever to get our boarding passes and finally made our way through the gate.  Apparently having a baby with oxygen doesn't get you front of the line access... I swear I heard every cough and sneeze in the entire airport and probably gave the stink eye to every offender.  Our flight left at 3:05 so I wanted to feed Ry before that so that his tummy had time to settle.  We gave him a bottle and he actually took it like a champ.  At 2:45 I glimpsed at the little compartment where they let you measure your carry on bags and I did a little checklist in my head. We had our personal items (laptop bag, my purse, Sadie's backpack) and we had the 'danger bag' and Ry's diaper bag... WHERE'S SADIE'S BAG???!!! On the floor of our room waiting to be brought downstairs. After whisper swears and public crying, I called my mom with my embarrassing story and in a flash between her, my dad, our neighbour, and Scott a plan was devised for neighbour to go back to our place, get the bag, take it to the office, have it shipped overnight to NS.  Genius runs in my family luckily... it must skip a generation though.. So - lesson learned. Do a final sweep of your house before you leave... it was so chaotic and we were so preoccupied with everything else - neither of us noticed the hot pink with lime green polka dot bag that was missing.  Duuuh.  Luckily that was the most major setback of the trip.  It also took up a lot of space to tell you about it, so the rest of the trip might be best described in pictures. 
In summary:

• The house is amazing
• Both kids loved the beach, the rocks, the kites, the rain, the sun, the tide, the fog, the moon, the toys, the tv, the indoor 'campfire'
• I loved having no appointments
• Ry got his first tooth after about a month of ridiculous 'teething' behavour
• he started crawling
• he started sleeping through the night
• both kids and scott got bad colds but Ryan handled it like a champ and it didn't progress to a hospital stay
• I overcame my fear of the airport
• Flying with WestJet was terrible for someone with oxygen
• We can't wait to go back
• Settling back in to 'reality' is hard work!
• Here are some pics! It's really hard to summarize the trip in so few picture - I made a slideshow for my parents and it was almost 20 mins long... This is a very short version:

Aug 14. Dark Clouds and Rainbows

I know things have been busy and hectic when this is my 3rd attempt at writing this post.  The longer I delay, the more there is to write about.  As I'm sitting here I can see Ryan stirring in his bed so I'll type fast. 

Yesterday was Ryan's corrected Birthday.  That means, he's officially 1-year old.  This 'birthday' is the one that therapists and doctors use to assess his development.  Obviously given the number of setbacks Ryan has had to overcome, he's got many delays.  However, we had his one year follow up appointment at Mt Sinai yesterday and he blew them away.  Last time we were there was May and he was just approaching 8 months.  At that time he was sitting unassisted for about a minute.  Both kids have colds so I wasn't sure if I was even going to go to the appointment but Ryan's cold seems to be on the way out and I didn't want to delay the appointment if I didn't really have to.  We had the doctor who was on duty the day Ryan was born.  She's the first doctor we spoke to in the 'quiet' room where they tell you everything that is going on with your baby.  She introduced us to all the scary medical terms, particularly Intraventricular Brain Hemorrhage.  Ryan's IVH was a grade 4.  That's the most severe.  Ryan's IVH was on the front left part of his brain.  We were told that it could effect his right side muscle functioning.  This is true.  His right side is stiffer than his left and his right hand is less coordinated than his left.  However, one major outcome of a severe IVH is Cerebral Palsy.  We were told that sometimes it can be diagnosed at 1 year corrected, so this appointment was a biggie because I've spent the last year preparing myself and doing research about CP. 
The morning started out with a black cloud - literally and figuratively.  It was dreary and rainy, and I was feeling a little lack lustre about the whole 'birthday'.  I'd originally wanted to have a big celebration because back in April when we celebrated his actual birthday things were still tense with feeding, oxygen, and infection control.  I had high hopes for bouncy castles, friends, and fun.  But - Ryan got a cold, reality about how expensive bouncy castles really are set in, and we've taken the leap to take a vacation to Nova Scotia in September (more on that later) so we're on a tight budget for the next little while.  Anyway - we dragged ourselves downtown for the dreaded appointment and then things started to brighten.  Ryan blew them away.  He was sitting like a champ, making great eye contact, using both hands nicely, and after he became more comfortable in the room, he showed them how he's almost crawling.  The doctor and OT were very impressed.  When I asked about CP the doctor said that at this point, she doesn't want to give him the label.  He's showing  a couple of signs of mild CP, but the things he's showing (increased muscle tone on the right) can start to decrease over time and since we're doing so much therapy, there's a good chance he won't get worse.  This was a very pleasant surprise.  We were ready to hear the diagnosis because a) we don't want to find out too late and b) there is funding for kids with CP and c) there are looooong wait lists for services and we want to get on them ASAP.  The doctor understood that, but she said she doesn't see the need to diagnose yet.  There is an in-depth assessment coming up in February for his 18 month follow up, so things could be different then - but I plan on looking at what is required by then and we're going to start working on those skills now.  I cannot imagine if I had to be working right now.  Everything Ryan has accomplished is because of the hard work we've all been doing.  This is really long.  I have to wrap up. 

In conclusion, the day that started with a black cloud ended with this:

It was worth pulling Sadie out of bed to see it.

Happy 1-year old

Happy Doctor.  Right after this picture Ryan started smiling and laughing with her.

July 17

I wrote last on the day before my mom's birthday.  Today is the day before my dad's birthday.  In less than a month it will be Ryan's 'supposed to be Birthday'. That makes him 11 months corrected and 14.5 months actual.  Since the last post (the one where Ryan was done with oxygen), things have been going  well.  He's much easier to take places (so far he's been to Target, a shoe store, and of course my parent's house).  We are still trying to protect him but at the same time, we're trying to let him experience life.

2 weeks ago, we got his hearing aids.  He's been adjusting well to having them - although he pulls his right one out a bazillion times a day... someone beat me to the invention of a mesh bonnet that ties around the chin to help keep them in. 

We bought him his first pair of 'real' shoes today since he's been pretty interested in standing up.

He's been in the pool a handful of times and seems to enjoy it. 

Sadie is still his favourite person, and she is getting better and better with him.  She has a wide spectrum of feelings toward him.  First thing in the morning and at bedtime, she's at her best with him  - lots of laughs, helping, and hugs.  Midday - I'm not sure what it is, but she seems to lose it a bit.  This afternoon, they were sitting together on the floor and I asked her what she wanted to do later on.  She said, "I want to knock him over."  I understand the temptation, and I'm glad she voiced it rather than doing it... she's a funny one.

We are now at war with the neighborhood racoons. They have decided that Ryan's little slide/swing combo is theirs.... today in broad daylight there was a family of 5 playing on it.  One little bugger was apparently up on his back legs pushing the swing.  I'm disgusted/distraught/annoyed about the whole thing.  We have a brand new deck, a giant umbrella for shade, and this cute little climber thing and now it's contaminated with dirty racoon prints.  I called the MNR today and since they are now 'damaging' our property (they're even scratching up some of the wood on the deck), we're allowed to either humanely trap or kill them.  WHAT!? We have to do it ourselves.  They don't live in our yard - they live next door but the lady claims that since they aren't bothering her she doesn't want to do anything about it.  I will show her the pic I have and hopefully she'll cooperate and pay a portion of the removal cost.  Rant over.

Saying goodbye to his big tank - I'm happy our tree is so big, but it blocks the Medigas sign on the truck! (also - first pic with hearing aids in!)

At Sick Kids for a  GI study... those gowns are made to make kids look sick - he was FINE that day!

First retail trip.  He's in there somewhere - was camera shy I guess. 

 

 

A note about our trip to Sick Kids... We've been wondering what's going on with his tummy because he ALWAYS seems to be full/refluxy.  His meds are at the maximum dose, and we use all the 'tricks' to help keep the milk down.  To rule out any structural abnormalities we had to do an upper GI study.  Basically he had to drink barium while lying on a xray table so they could watch how it travelled down.  After that, he had to drink more and then they took more pictures as it travelled through his system.  The good news is that the results were normal and there no structural abnormalities - but we're still left with no answers.  His eating is miles better than it was a couple months ago and it seems to be on an upward slope, but I just want him to be more comfortable.  The reflux is also a major reason we don't really take him anywhere because he's guaranteed to puke whenever/wherever.  A road trip longer than a couple hours is out of the question because it would involve having to feed him mid way.  We are itching to get away, but a few more pieces of the puzzle have to fall into place before that can happen.  My money's on late spring/next summer.

Happy Birthday tomorrow, dad.

blow!

June 28, 2013

Tomorrow is my mom's Birthday.  Last year was a milestone birthday for her, but the celebration had a dark cloud over it because there was still a lot of uncertainty about Ryan.  Today I received the best email ever from a medical professional. It said: Plan - discontinue oxygen.  That's right.  NO MORE OXYGEN!! He did it.  I used to call his travel tanks his rocket packs... then I found this sleeper from Hatley:


R is for Rocket Man

Last night we had our first 'deck party' and by deck party I mean, Sadie at ice cream at our new table, and I took pictures.  We were anticipating it being Ry's last night with his prongs, and I think he knew it.

Baby Champion

I still catch my breath when I think of what it means to be done with oxygen.  It has been a part of our life for SO long. It wasn't hard get used to him without the feeding tube, and I don't think this will be a hard transition either.  The thing I struggle with is reminding myself that he is no longer the sick little boy with an uncertain future.  He's now a fragile little boy with a bright future.  By fragile, I'm only referring to the need to keep those lungs protected from illness because we do not want any move visits from the medigas man ;-).
That's all I have time for tonight.  This post just can't wait til tomorrow.  Thanks (again) to everyone for all the support, words of encouragement, generosity, and understanding. His road is still a long one, but hopefully from here on it will be a smoother terrain.

Letters to Baby Boy

I don't know if I'm ever going to publish this post, however, in the spirit of letting go and moving forward I want to share these notes that I wrote to Ryan over the course of a few months.  Yes - they are very personal, but part of me feels like if I publish them, it's almost like freeing my mind of them. If I keep them secret, they're always here, but if I publish them it's like I'm scattering the ashes out in to the universe and everyone can take a little and I'll have less on my shoulders. It sounds crazy but I guess in the age of technology, I can't tear them up, or hide them in a box, or burn them... I guess I could print them, then delete them but they'd still be only mine to see.  If I put them 'out there', maybe they'll serve as inspiration to another mom going through something terrible.  The first note I wrote on my phone in the hotel room where we stayed during the worst weekend of our lives.  I believe I wrote it around 3 am through many tears.

This first one was written in June - somewhere around this time last year.
To my baby boy Ryan,
I have known and loved you for 51 days now. You came into the world too early and now you are threatening to leave it too soon. Every time I close my eyes I think of you lying in your little house and I wish I could be beside you, rocking you, and keeping you safe. I wish there was something I could do to make you better. I still have hope that all of a sudden, you're going to be fine, but you are so sick, the doctors are telling us that you might not get better and that really hurts mommy and daddy's hearts. You have a lot of people who love you without ever having met you. You are the cutest baby at Sinai with your blonde hair and bright eyes. You love your soother, and were so smart to learn how to suck on it. I'm so proud of you for that.
You have a big sister who loves you and wants you to come home. She calls you Mr. Ryan and really wants to play with your toys. We've talked about Baxter before, and how much you would love him, although you will probably be allergic to him because of your sick lungs. Your daddy and I have spent a lot of time beside your bed, whether you know it or not and our favourite part of our visits is when we get to touch you without making you upset. Your nurses love you and are doing their best to help you feel better. Mommy's heart breaks every time I think about you being all by yourself. If you end up in heaven (I never really believed in heaven until now) you have lots of people who will take care of you, especially your grandma who mommy hasn't even met yet, so you're kinda lucky. I still hope that you get all better and come home with us. You're getting so big and you're so strong. Mommy loves you, baby boy and I never want you to feel lonely or sad, so if you are in pain I want you to let us know so we can make you all better. Mommy's so sorry she couldn't help you.

This next note I wrote a few days later:
June 21, 2012
Baby boy - you are doing well. You just need to keep breathing. The doctors have given you a lot of medicine that makes you really tired, then you forget to breathe. Everyone wants you to breathe. We are waiting and waiting for you to be strong enough to do it on your own but we are running out of time. I know you can do it and will be so proud of you when you do. We love you baby boy. You can do it. Even if it's just for a little while. We'll hear you cry for the first time. Nurse Nancy said you might sound like a bit like a cat, but it will be beautiful. She's right. 

This one was about a month later.  July 27, 2012

Baby boy: you are almost 90 days old.
We are so proud of you. You are breathing on a machine that is doing a lot less work. You only need a bit of medicine to help your lungs work better and you are learning how to eat mommy's milk. We never thought that day would come. Good job! We are excited that you will come home soon. It has been nice to see you looking around and liking your music. Everybody loves you and everyone is so proud of you. Keep going baby boy. 

This one was written in November, a couple months after Ryan got home.
To my big baby boy
Its time for another letter because you have been home for 8 weeks now and we're so proud of you. We got some sad news that your ears might not be working as well as they should be. I don't believe them because I think that you can hear, and that you just need time to adjust to your new world outside the hospital. There are so many new sounds, it might take your brain a while to get used to all of them. One of the best sounds you'll ever hear is your sister's singing and reading stories. Also, Grandma and mommy talk to you all day. One sound that mommy doesn't like but daddy loves is the sound of football on tv. You'll probably grow to love that sound. Baxter has a loud bark that I'm sure you'll hear when he comes home to live. There are too many sounds in the world to write about, but I hope that you get to hear them all.  We often have music playing in your room, and I'm pretty sure you like it because you often fall alseep when it is playing.
We also have to work on your eating. I think that you get tired and want your food put in your belly but big boys eat their food through their mouths, so soon it's going to be time for you to do that. Everyone hopes that you will, and that you won't need an operation. Especially mommy.
Ok big man, time for bed. We love you. We are proud of you. And you are going to be just fine. Don't be scared of all the new things. Mommy, sadie and daddy will always be there for you.
Love love love mommy.

I wrote this one right before his first birthday:
Apr 24
Baby Boy.
You are almost one year old. You are the youngest one year old and the oldest 8.5 month old I've ever met. You are doing very well. You are drinking all your milk from a cup, so you don't have your tube in your nose anymore. Mommy worries about you all day everyday but lots of times you look at me and let me know that you're going to be ok. You are on a lot less oxygen than when you came home. Probably soon they'll let us turn it off for a while. Maybe on your birthday for a little while. It will be so nice to be able to go out without all the extra tubes. You're a handsome guy, even with your tubes. Everybody is proud of you. You need to keep showing mommy how strong you are. I read the letter I wrote you in June when you were so sick. It's amazing how far you've come. You have a long way to go, but everybody will keep helping you along the way. The only thing you need to do is sleep and eat - we'll help you with the rest. Night night big boy.

As I read these letters I get a pit in my stomach because they are so real.  I don't even really remember thinking as I was writing.  It's weird having a blog because sometimes during the day I start thinking about my post and kind of composing it in my head.  These letters were not premeditated - they were either written in a time of desperation or happiness.  If I ever post this I hope that the letters don't make people sad, I hope that they can inspire hope to anyone facing tough situations.   I'm trying to move ahead and put the bad times behind us.  I don't want to forget, but I want to start to find the good in what we went through.  I think that the video was one way to do that, and these letters may be the last piece I've been hanging on to.  Onwards and upwards. June of last year was the worst month of our lives.  This June will hopefully be one of the best once the giant oxygen tank is picked up and taken far far away.  I'm about to press 'publish' and am already feeling better. Also, today Sadie and I have a date to go to the zoo with a friend I met in the NICU. Her baby was born at 26 weeks, 2 weeks after Ryan.  Today the babies are staying home, this is a day for the toddlers - but they'll join us soon.  A much better way to spend a day than where we were a year ago.  Amazing what a year can do. 

Mission: Accomplished

Today was the day... Race day.  I woke up at 4 am from a bad dream, and couldn't get back to sleep.  Even though it wasn't a competitive race, I guess I had a minor case of the jitters.  So many people generously supported the cause, I really wanted to have a good run.  Here are a few of my favourite parts of today.

1. Sadie was excited to ride her bike to raise money for 'tiny babies'
2. We were on time
3. I got to spend time with a great friend who has been a huge support since day 1
4. Sadie had a great time completing her 'ride'
5. As a combined total, we raised over $600 for the Linden Fund
6. My friend Kristi captured some great moments from the run
7. I finished it. Without dying.

Weather-wise it could've been better, but I can't complain about a day out in the sun with some of my favourite people.

Done.