Happy 6th Birthday Ethan!!!

It is hard to believe it has been six years since you joined our family.  One of the things that really bothers me about your birth is that I do not recall all the details...what time were you born, what was your weight and length at birth?  I typically have to look these answers up to know them.  It bothered me all day not knowing the time you were born.  With the wonders of modern technology, I have the date and time stamp on the photos taken at your birth...so even if I do not remember the time, I can look it up.  It is no indication of my love for you that I cannot recall these details, they just were lost in the moment of your birth and the surprise that not everything was as we expected.

Over the past six years you have grown and changed so much.  You have changed us as well.  Before you were born, I had no idea that children truly are born with medical issues (I'd heard it, but it really doesn't hit you until you've lived it or watched people go through it), it was nothing we'd experienced before. 

I remember your first birthday, I struggled with how to celebrate it if you could not orally eat.  Honestly, I struggled with that for a while but have come to learn that you do not need to orally eat to thrive.  It is a social and interactive time but as long as you get your nutrition it really does not matter if it goes in through your mouth of your stoma.  That being said, I do still hope that one day you will be able to enjoy the tastes, flavours and textures of food. 

On your second birthday we just enjoyed watching you progress and grow and learn.  Little did we know that year would see us spending much of the second half of the year in the hospital with mostly respiratory illnesses.  Nor did we know that you'd soon start to lose your baby teeth due to rapid resorption.  Who knew one could miss teeth so much?!

Your third birthday continued much like your second and we spent most of the first half of the year in hospital for different respiratory illnesses, emergency brain surgery to reopen your Dandy-Walker Cyst and this is the year that scoliosis really started to present itself with a vengeance (as you can see from your right sided lean above).

Your fourth year of life you spent much of it impersonating a line-backer on a football team with the castings that we hoped would slow the progression of scoliosis and allow us to hold off going down the surgical route.  The extra weight was sometimes difficult to manage or to fit you into things like your wheelchair, car seat, clothing...  We took to dressing you in adult sized t-shirts and tried to manage any messes that might go into the cast.  This was a task that unfortunately proved to be more than we could accomplish.  But none of it ever seemed to hold you back.  Every time you've faced a challenge head on and conquered it.

Last year saw some challenges too, with a bad respiratory illness in April that showed us just how dangerous a cold can be for you; halo traction that surprisingly seemed to do so well for you and Shilla growth rod surgery for scoliosis that required a repair just 3 months after the rods were put it.  We struggled with the decision to start the surgical route and really questioned our decision the first few months.  Since your revision, I think things have started to improve for you.  With all the setbacks of the past couple years you have not been able to move forward much on your gross motor skills.  Hopefully this year will see continued improvements for you and another year with few hospital stays and a big dose of good health!  You're amazing and we love you more each day!

Happy birthday little man!

New Home, New Projects

Since moving into our new house, we've done a few minor changes to either make the house more leak proof or more our style. Shortly after moving into the house, we discovered there was a foundation leak...and nothing we could do about it except pay to get it fixed.

See the discoloured line on the wall by the bucket? I'm not sure how we missed it during our tours/inspection of the house! The bucket ended up filling to at least 1/3 full during some of the September rain storms we had. After we got it fixed (from the outside), we haven't had an issue since. YEAH! But the discolouration remains.  BOO!

We have installed a new entrance light and kitchen faucet - I wasn't thinking so do not have the before pictures.  You'll just have to trust our judgement that the new items are better than the originals (a light with 3 different sized bulb that had burn marks on it, and a leaky, mouldy looking tap).

Another change that I forgot to target the 'before' photos of, is our first paint job.  An agreement we had made with Lorelei when we started the process of looking for a new house was to let her pick her bedroom colour (within reason).  The painting process took a bit longer because we did a fancy wall.  To be honest, I do not have a complete 'after' photo either...but that is because her room hasn't been very tidy since and we've had so much other stuff going on that we have not had time to work on it yet.

I'll try to get a nice after shot of her room to show the full affect...some day.  But as you can well guess, it is a light blue room with a blue gradient type wall.

One of the things I occupied my time with during Ethan's April, May, June and September hospital stays is to surf DIY (Do-It-Yourself) websites.  One of the neat things I learned was to take a picture of your tools.  However, I only employed this technique with Lorelei's room.  I honestly didn't think of it for any of the other work we did and I discovered something that worked wonders and wanted to share with anyone else tackling a paint job!

As you can see we used your regular tools: stepladder, mallet, paint, drop cloth, sharp knife, rollers, paint brushes, extension for lighting and level for the gradient lines.  The bottom left photo is regular run of the mill painting tape.  The holy grail of paint tape can be found on the right hand side!  On one of my favourite DIY sites she touted the benefits of this tape...and after using it, I am a believer!  It went on well and came off super smooth.  We used the delicate tape (yellow) and it made the lines look great!  You just have to remember to smooth it out really well with a credit/bank/library type card.  Totally worth the extra money!  The regular painters tape came off in small bits and pieces requiring me, on multiple occasions, to tweeze off what it left behind! 

We did make some rookie mistakes though...

And put down the paint can or tray where the drop cloth was not...  Thankfully we're not so attached to the carpet!  Eventually, our goal is to replace the carpeting...it had stains on it when we moved in, and honestly I'm not a huge fan of carpets when you have pets or allergies!

The next room we tackled was Ethan's room.  His room was initially pink, and that just wouldn't do!  We had picked up a bunch of paint chips and I tore off a bunch I liked and taped them to Ethan's walls to see which we liked best.  I really liked the colour we had in Lorelei's room at the old house and wanted to duplicate it so there were mostly orange paint chips all around his room with two different ones that were shades of green.

The first picture shows what the room looked like before we started to get it ready to paint.  If you look really closely, you can see an orange paint chip on the right side of the wall.  For the paint jobs we have done in this house, we have focused a lot on the prep work so that we can get a better finished product. 

Another thing which was inspired by the DIY sites I visited was a temporary bed for Ethan to use when we have night nursing.  Clayton built this little sweetie in our basement using the measurements of a mattress we had.  He did a wonderful job, and it worked well as a spare bed for mom's recent visit too!

The almost finished product of the two projects looked like this:

I guess you can tell that we abandoned the orange room for a different colour.  We still haven't fully set everything up yet but that is because we're working on a bigger project that I will fill you in on shortly...