Busy Summer

Ethan's eye has healed from the scratch but he did end up with a scar. :( Even if it fades over time I think it will remain visible.

In July Ethan participated in a Getting Ready for School program where he attended mock-kindergarten during the mornings for a week. He seemed to enjoy himself pretty well. He was designated the bubble blower for his friends. They had a switch attached to a bubble blowing machine that Ethan could activate with his hand to blow lots of bubbles for the kids. I think he liked being in control of the machine, and all the kids would come up to him to ask him to blow bubbles. It was really neat. He also participated in their activities (although grudgingly at first - who knew I would have two kids not so fond of circle time?!?) becoming more tolerant during the songs and participated in the hands on portion of the learning as well.

He spent a long weekend away in respite care where he had a great time. But it seemed upon his return that he may be coming down with a cold. :( We were hoping he wouldn't be sick because he had his camp the following week and we really wanted him to be able to attend. Turns out it wasn't meant to be as he was pretty much sick off and on the whole week. At the end of the week, we found out he had a urinary tract infection and had to go on antibiotics. :(

In the past months we've spent a lot of time preparing for Ethan to start school. It is hard to believe that he will start his first day of school...TOMORROW!!! While getting ready for his first day of school we are also starting to think about his next rod revision. He seems to have grown again and we are reasonably sure that his back is starting to bug him again. We'll know more after he sees his orthopedic surgeon later this month.

Earlier in June, I brought Ethan to a Sunday barbecue outing for the first time. It was a fund raiser and with face painting, activities, barbecue food and balloon animals.

Instead of having his face painted, we opted to have his forearms done. She painted an Elmo and an alligator. It was fun to have for him. I'm not sure he noticed the art all that much but he wasn't complaining either when she did it. When the clown arrived, he came straight to Ethan and made him a really cute purple bear...but it flew off Ethan's tray and hit the grass which popped the balloon. :( I thought it was really nice of him to come to Ethan and that he chose a bear was pretty cool too!

Although we're not really soccer fans, we couldn't help but cheer for the German team during the World Cup. Clayton even showed his support with a new hat...

He did admit it will likely fit his bike seat better and wasn't really that comfortable to wear. Thanks for the hat/bike seat Omi!

In June Lorelei graduated from Brownies and had her fly-up ceremony. The two years she was a Brownie she wore my old Brownie uniform and we just added the patches she earned to the blue sash which is currently part of the Brownie uniform. She will start Guides later this month and is looking forward to doing more camping and outings this year.

She also finished off her activity classes, in Hip Hop and Karate, for the season. She started in the Hip Hop class near the end of their season but was dancing the routine with her classmates by the end of the season. She really enjoyed learning the release moves in Karate class.

I spent some time in the gym with her as she showed me some of her favourite moves, one of which you can see below.

For the summer she participated in a weekly 3 hour gymnastic class, which she really enjoyed. She has certainly improved on her cartwheel and hand stand...and learned how to do a bridge - which she is really proud of. Hopefully she can continue to move forward with these skills.

Lorelei spent much of her summer in camps. Below you can see her as part of a theatrical event (she's the one in black).

 

At another camp they had a carnival day where she had her face painted. They did a great job and it was a shame we had to remove it for bedtime!

 



The other big thing for Lorelei this summer was that she turned nine! We celebrated her birthday at home where she snuggled with her brother a bit before opening presents.

She had a party with her cousins and friends later. It is the first time we brought Ethan to celebrate with her at a group party. It got a bit loud in the party space, but he was perfectly happy to play iPad and watch everyone having fun (as can be seen in the below photo taken by auntie Pengo).

We also had him participate in part of the party. Thank you auntie Pengo for sharing your photos with me so I could share them here. :)

 

This year I decided to make her cake. I figured a cupcake cake would be easiest for the kids to each get their own piece so I found a photo Lorelei liked online and recreated it for her.

She had a great time playing games and having fun with her friends and family!

Have I Ever Mentioned...

I'm not sure if I've ever mentioned before, but we have a dog and a cat. In the past we've had freshwater fish, saltwater fish, 2 dogs and a cat. But over the years we have gotten rid of our fish tanks and when Ethan was about 18 months old, we lost our oldest dog Smudge. He had a heart condition, was about 12 years old, was terrified of thunderstorms and in the end started having mini strokes (which is what took him in the end).

So we have been left with our other dog, a beagle named Tas, and Wodin the cat. Since Ethan's birth times have been stressful and sometimes our pets really don't do much to calm things as the royal 'they' claim they should... We've come to using an 'ing' descriptor (of course not to be repeated around young ears) when referring to either pet.

In our old house, we'd had a noise complaint about Tas' voice. If you've never heard a beagle howl...they can be loud! Sound carries...there really isn't much you can do about it! But if we let him outside he'd go out and howl if there was an animal in the yard, someone was passing by or someone was teasing him and this was one of the main reasons we started using the 'ing' descriptor for him. Since we've moved to the new house, he has developed severe separation anxiety, to the point we can't really do anything without planning for someone to watch him (Thanks Jon!), Clayton or I to stay home or to bring him along. Tas is now almost 13 years old, has thyroid issues (is medicated), has vet food because his blood is too thick and has had back pains off and on all his life. We've been discussing his quality of life a lot lately, there is always the guilt when we do this...

But believe it or not, this post really isn't about Tas nor pets of years gone by. This post is about our ....ing cat! It's not bad enough he has beautiful long hair that he returns to us (on the floor, the couch, the bedding, wherever he happens to be when the need strikes him), or that he has litter pan issues (can't stand to use a dirty toilet - guess I kind of understand that one) nor that he too is on vet food (for urinary crystals). He is at least 14 years old, often acts like a kitten and tolerates the kids well.

The other night he got into one of those crazy cat moods that all cats have. You know when they suddenly run around the house like they're being chased by an axe murderer or whatever evil they imagine. Well, last Thursday Wodin went through the room Ethan was in eating his dinner (by tube of course) and watching TV. Suddenly Ethan started to cry out, really upset. I thought it was the sound of the cat thundering by him (sometimes loud noises bother him)...then watched him cover his eye and saw a dark spot expanding on his face and realized he had good reason to cry...

Wodin is declawed in the front, so we know that these marks are from his back paws. It would seem that he launched himself off Ethan (failure to correctly judge jumping distance?). We know it was not an intentional act, and we're quite thankful that he missed Ethan's eye (just 1/2 and inch and Ethan may have lost his vision). We were assured by the clinic we brought him to that the injury was superficial and that he would heal without a scar. I'm hoping that is true. Three of the cuts are deep, bled a lot and we all know that Ethan' doesn't need any more scars. As for the cat, we try to keep him out of the room when Ethan is on his mats now.

Some Good Things

It's been over a year since Ethan had his first spinal surgery. Shortly after this surgery, we noticed that he wasn't tolerating his walker anymore and had to stop using it with him. Now, almost a year later, Ethan got back into his walker! :)

He doesn't look great in it yet, but HE WALKED!!! I'm so happy he was able to do that again! He was in therapy when they tried him on a different walker without success so we brought ours in. The first time in that was a bust as well. His third try was more of a success (photos above). We're hoping to get him back into his walker after he's been feeling better for a bit.

The black thing around his neck is to help keep his head/spine aligned and avoids the 'C' shape which could cause troubles with his rods.

Ethan had revision surgery for his rods in April, and they were able to 'grow' him more than anticipated. They had told us surgery needs to be every 4-6 months until he reaches skeletal maturity. During surgery they plan to grow his rods by 1 cm per surgery until we run out of rod space and then he will need to have the rods changed out to allow for more growth. This first expansion seems to have gone well, they got 2 cm growth and we were home within the week.

Besides laying on the floor, sitting in his wheelchair and spending some time in his standing frame, Ethan has been hanging out in an easy chair...

And on the futon...

Sorry the photo looks blurry, it is because I took it at night without sufficient lighting. He was enjoying whatever was playing on TV.

We have been taking Ethan out for walks lately, which he seems to really enjoy. We've also had a couple meetings with his school to prepare for him staring in September. He will be going to the same school as Lorelei. Earlier this month we joined in one of the school activities - a pizza picnic for families and new comers to the school and as per Lorelei's request I brought Ethan. He was pretty happy to sit in his wheelchair and watch all the children and their families. It was really nice to see as I wasn't sure how he would tolerate it. Lorelei was also quite proud and had to introduce Ethan to her teacher and some of her friends.

GI Infections Suck!

Have I ever mentioned that GI (Gastro Intestinal) infections really, really, really, really, really suck! Why so many really's? That's how many days Ethan has been sick with a stomach bug!

It started on Wednesday and seemed to improve somewhat but then got worse again at 2:30 on Saturday morning so we ended up packing him up for a visit to the ER. They gave him some Ondansetron to stop the vomiting and we restarted his fluids with Pedialyte. Ondansetron is an anti-vomit medication that is often use for chemotherapy patients (Ethan's has had it in the past). After a couple hours they sent us home with instructions to keep giving him Pedialyte and as he improves, we can start transitioning him to calories/feeds again. They warned us that there are some nasty bugs out there right now and it isn't uncommon for vomiting to last 4 days or more and diarrhea to last about 2 weeks. I'm hoping with the Ondansetron, it helps him get through and recover quicker. He received an extra dose last night.

Since he's been sick, he hasn't been sleeping well. Last night he fell asleep (against his will, as he was so over tired he was just beyond himself upset) around 6 pm and slept for over 12 hours. Unfortunately, this morning he threw up a bit. Thankfully though, he did not get sick again after that. We're hoping it was just a one off and that he doesn't get sick again tomorrow.

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...