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...

Merry Christmas!

Hoping everyone had a wonderful Christmas!

This year Ethan had a wonderful time opening all his presents.  It was really nice to watch him participating without much help from us.  I'll update more later, but wanted to send out good wishes before the season is over!  :)

A Time of Reflection

Another whole month has gone by and again I haven't posted much.  Shortly after posting the last time I found out that a 16 year old boy from Ethan's community had passed away.  I didn't know him particularly well but often saw him where Ethan goes to therapy, where he goes to respite and on one occasion at the hospital.  It was in hospital that I met his mom for the first and only time.  He was not doing well at the time (hence the hospital stay) but that was a few years ago and he headed home before Ethan did.  It was my understanding that he was doing better.  It was through another mom that I'd learned his health had been on more of a decline recently and that he had passed away.  I was am so moved by this loss.  He always had a beautiful smile when I saw him and he enjoyed seeing Lorelei whenever she was with me.  I still think of him often and hope that his family is well.  The day I found out about it, I could only think of how devastating it must be for his family and was so lost in thought that while trying to gas up I completely forgot my P.I.N.  I was standing staring at the machine saying, "Oh my, oh no, oh no!"  The man at the other pump asked me if everything was okay.  I raised my head with a bewildered look and said, "I've forgotten my P.I.N.!" He had thought I was trying to use diesel to gas up and was like, "oh can't help with that!".  I felt so foolish.  I continued to stand there until the card was spit out and had to comb through my memory to do an exercise that allowed me to remember my P.I.N.  That's never happened to me before!  The man no doubt thought I was crazy (and likely didn't help lend credence to women gassing up their vehicles)! 

In September, a friend lost their father in a tragic accident.  He was a really great guy.  One of those people who would take the shirt off his back to give it to you.  He worked hard all his life, having to rebuild things along the way at least twice and amassed many friends.  I had the pleasure of staying with them for a while as I got settled after one of my moves and would always stop in when I was in the area to see how they were doing. 

Then recently, a relative of Clayton's was lost in another tragic accident.  The circumstances of this situation seem very odd and I think that the loss of his life could have easily been prevented.  Although an investigation is underway it will never bring him back nor really heal the pain his family and friends feel.

May each of you rest in peace - (in alphabetical order) Michael, Tony and Ty!  You have left positive memories for us and you remain in our thoughts!

October 2013 Review

It is hard to believe that an entire month went by again and I haven't posted...anything really.  It's not that life hasn't been busy, it has been pretty crazy busy to be honest.  I kept waiting for pictures to be uploaded and then was busy with everything going on. 

Before I start the recap of October though, I would like to make a mention that Lorelei started at a new school this year.  I missed getting a bunch of 'First Day of School' pictures, but did snap off the one below on her first day.  School started three days after we'd moved and I wasn't as organized as I would have liked.

 

On October 2nd, Ethan had his staples removed during his visit to the orthopedic surgeon.  There were 40 this time and his incision is half as long as the first surgery because they only removed the top portions of the rods.  I didn't watch them remove the staples from his spine, but did watch Ethan's reactions.  For some of them he didn't even seem to notice they were doing anything...but others really made him flinch.

 

 

We've been back to the orthopedic surgeon again this month and Ethan got a good report!  We don't go back to see them until the start of December.  It is nice to know that he is doing so well this time.  He has started to guard again at times when he is moved, but the surgeon thought that could be because he remembers how much it used to hurt.  I hope he's right as I get nervous when he does it because that was the start to his rod letting go the last time.  

 

Ethan has been having some issues at night about 2 hours after his final feed of the day.  We think it is related to his digestion.  We saw his GI doctor last month and he suggested we change up Ethan's feed a bit.  We're trying that but haven't seen a whole lot of change yet.  We may end up switching it again if we're not able to resolve his gas, withholding, etc. issues.

 

The other specialist Ethan saw in October was the Endocrinologist.  I think his appointments thus far have got to be the best.  We had to do some blood work for the appointment and then they just measure and weigh him.  Turns out his Vitamin D levels are good as is his calcium levels.  We can't improve his bone health any until we get him weight bearing more...but hopefully that will come.  We get to wait a year before we see them again.

 

We had a miserable September and parts of if spilled over into October.  We used to have night nursing twice a week to help us get a bit of rest, but they pulled the nurses until we change something relating to Ethan's bed (which he has been using since January).  He has been pushing out his adult front teeth and has not been sleeping all that well (in addition to his gas issues and needs for repositioning).  Thus we were quite delighted to send him to therapy last week.  I think I would have cried if he got sick or for some other reason couldn't go.  I missed him terribly but must say it was nice to go to sleep and stay that way for more than a couple hours all night long! 

 

We also missed celebrating Halloween with him though.  I was glad to hear though that they carved a pumpkin and celebrated while he was in therapy.  They sent home a great picture of him pulling out the insides with a somewhat grossed out look on his face - priceless! :) 

 

At home, Clayton did a great job of carving the pumpkins again this year.  Lorelei helped out and enjoyed playing with the 'guts'.  You'll notice one of the pictures is her creation from the guts.  Although we didn't get everything done that I'd planned, I was able to create a Halloween wreath, bake cupcakes for Lorelei's class (from a box not ambitious enough to do from scratch), roasted pumpkins, created the leaves for my 'costume' and did mine and Lorelei's face painting (unfortunately, you can't see the makeup that great in the photo, it was more obvious in real life).