Catching up

In October we also saw Ethan's orthopaedic surgeon and he is happy to keep Ethan in the back brace and revisit his spinal images in January to see if we need to move towards surgery.  Each time we wait, that allows Ethan to grow a bit older, bigger and stronger and reduces the minimum amounts of surgery he will require until fusion.  The surgeon said that in a year and a half, Ethan's back has only progressed a few degrees so although it is a severe scoliosis, it isn't changing rapidly right now.

In November we followed up with the general surgeon about Ethan's hydrocele.  It had reduced leading into November but started to act up again just before the appointment, which was nice as it allowed her to see what was going on.  She said that since Ethan is shunted, there will always be extra fluid and that his hydrocele likely will never self correct.  She planned for surgery on November 20th.  I then brought him to where he goes for therapy and he came home with a cold.  :(  It lasted about 3 weeks and meant he did not have surgery on the 20th. 

He also saw his neurologist last month who was quite pleased with his progress.  I had brought along the iPad in case Ethan got bored of back to back appointments and he was having a grand time with it, doing what he does and impressing everyone with his ability to work the iPad.

Lorelei too had an exciting day in November...she became a Brownie!

For anyone who remembers...she is wearing a vintage uniform (circa 1982).  She is not the only girl wearing a vintage uniform there is another girl also wearing one from her mom's youth.  The blue sash is so that she can collect her own badges as removing them from the dress would likely leave lots of holes and it might not hold up so well.  She seems to be enjoying it.  Just last week we toured a local fire station and they got to see a truck leave on a call (and come back to finish the tour).

This is Halloween, This is Halloween...

The night before Halloween, we sat down to carve our pumpkin.  Lorelei chose the stencil this year and helped de-gut the pumpkin and pick out seeds.  We took a bit of time for sensory play for Ethan and he didn't seem to mind it very much.

The photos are not great quality but Ethan was playing with the pumpkin guts with us and ended his session with...of course, dumping the bowl out (last 3 pictures).  I baked the pumpkin seeds again this year and they were pretty yummy!

Halloween worked out pretty well this year.  I got into the spirit again for the kids and painted my face before heading to work.  I had bought a blue wig on discount and figured I could use it for a specific costume, but saw an image online that I thought was pretty neat and I tried to copy it instead. 

I'm not sure if you can make it out, but it is a fish drawn on one side of my face (with our lips shared), kelp down my neck and bubbles on the other side.

Once we got home from school I got Lorelei's make-up done and she had to wait to go out because Clayton was working so she helped hand out treats.  Lorelei went as a vampire this year.

We were able to get Ethan into a costume just for photos without him protesting.  Which was surprising since he was too big for the costume and the last couple times he wasn't so into it.

Then to end the night, we went outside to grab pictures of the three of us dressed up. 

Surprisingly, Clayton hasn't been much into dressing up for Halloween...I thought it would totally be something up his alley.  I guess we needed someone to take pictures for us.  But while we were waiting for Trick-or-Treaters to come by, he was a good sport and let me try my wig on him.

Lorelei's pumpkin from school and Clayton's masterpiece.

Back to Searching

Oh so much has happened since my last post and I will try to catch up including pictures from Halloween.  But I'd like to start with the last week.  Things have been quite interesting around here...

I have learned a lot about myself...  Some people already know about what has been going on and I bet mom is thinking I'm obsessing again, but the events had a huge impact on me.

As most people know we've been searching for an accessible home for over a year now.  We thought we'd found the perfect one; a house that would have met the majority of our needs. 

Then came something suspicious.  A rumour.  And then the rumour was repeated by someone else.  There did not seem to be anything to substantiate this rumour and we thought perhaps it was just hearsay or a misunderstanding and something that we could live with. 

Then came more things that just did not add up.  Calls went out to all kinds of organizations and everything seemed positive but still the stress would not leave me.  Despite all the 'positive' things I was being told there was just this feeling that gnawed at me, driving me crazy, making me lose my appetite, sleep and focus on just about anything else.  It grew to the stage of giving me anxiety.  I started to wonder if I was losing my last marbles since there was just something I couldn't put my finger on.  We researched, I did a whole lot of research...let's just say there are a lot of things I've learned that I would rather not know much about.  Sheer panic was running through me, I couldn't even look at pictures of this house that I initially thought was so great. 

Suspicions were confirmed and I almost burst into tears (with relief at finding out when we did).  I just could not put my family through this. 

Over the week I learned that I have a strong intuition, that I need to trust this intuition and that my convictions are also very strong.  Once it became less likely to just be hearsay, I knew there was no way I could live there!  I still wonder why we thought we could live with it when we figured it was just a rumour...sometimes though rumours stem from truths.  So as you may have guessed, we won't be moving anytime soon, but we feel good about our decision. 

What the ???

Okay, I must admit this might be one of those posts that embarrasses Ethan when he is older and I won't be including any pictures with it either.

I'm going to start by saying that when Ethan was born, I was surprised at how many crevasses a boy can have in the diapering area.  I thought it would be easier than it was with Lorelei...but boy was I wrong!  Add to that he had an inguinal hernia repair when he was really little on the right hand side and I figured the worst of it was done with...(I'm going to totally overlook puberty because that scares me right now).  Well, we just got home about 1/2 an hour ago from a 6.5 hour visit to the ER.  Ethan had developed some strange symptoms which prompted our visit and he came home with a diagnosis of hydrocele.  To limit his embarrassment, I will just tell you that it is similar to a hernia.  What it does mean for him is that we're to consult with surgery in the next two weeks and this puts a whole new surgery in his future to repair the hydrocele.  On a plus side, it doesn't require emergency surgery and allowed us to come home again tonight. 

During the imaging they did to confirm the diagnosis, they captured part of his spine in an x-ray...boy does it look bad without the brace on!  We meet the orthopedic surgeon next Friday to see how he feels things are progressing...

August Outing

This is quite late in coming...and I must admit mom has been very patient waiting for this update.  She knew that Ethan got a sun burn and it had something to do with something we'd done with him on a weekend.  But that was the extent of what she knew...she did ask a couple times about the update but I think has resigned herself that these things sometimes take time.  ;)

Honestly, I've been excited to blog this post but things have been quite busy here and I never seem to get enough time to sit down and write.  As it is this took several tries to complete.

The end of August we took the kids to a safari park a couple hours away.  You read that right, we actually took Ethan somewhere that didn't involve medical care, therapy or something else local!!  I must admit I was a bit nervous to bring him...but my main concern was more how he would tolerate being in his wheelchair and car seat for so long.  A lot was hinging on his success...if it failed, Clayton would get to say "I told you so!" and we would likely not try to take him elsewhere.  If we succeeded...that would open up more doors for him!  I won't keep you in suspense, he did GREAT!!!  I think he had a wonderful time and only got frustrated at the end of the day, but I think that was mainly because the sun was shining right in his eyes and he couldn't see the elephant attraction we were watching.  After that we packed up and went home.  He even tolerated having his brace on for a good while.  He did sweat in it, but didn't complain!  You may notice the canopy on his wheelchair is a bit low, we have since fixed it to be a better fit...but we did not want to leave him uncovered.

We started the day with a bit of a negative...that in my mind ended okay.  While walking by a little girl (likely around Lorelei's age) I heard her say to her father, "Look at that funny looking boy."  (Or something to that effect, my memory has not fully retained this slight against my boy.)  But Lorelei turned around and said, "He has special needs, and he's my brother!"  She said it as proud as could be and almost moved me to tears.  I told her how proud I was of her to have said that and stood up for her brother!  :)  We did get many more stares but that was the only time something was said loud enough for us to hear.  It got me thinking...really, are wheelchairs that uncommon?  It wasn't just the kids who stared but adults too.

When we arrived, Lorelei headed straight for the water park to cool off a bit and as she said it would allow her time to dry up before we left.



We then watched the elephants make one of their daily trips to the watering hole to cool off.  Unfortunately, I'm not sure Ethan got to see much of them since we were so far back and there were a lot of people blocking the way.

Next we boarded the bus for a tour of the grounds.  It was neat to see his wheelchair tied down on the bus, we'd never done that before.  He enjoyed watching people move around on the bus to try to get pictures, but I'm not sure how many animals he actually saw.  Every time we would try to point one out, he would look at us instead.

If you notice, there was an ostrich that came right to his window and hung out there...I think he saw it make its way to his window but when Clayton tried to point it out he turned away and did not look back before the bus had moved on.  :(

We took in all the different shows they had to offer.

And I grabbed some candid shots...

 

It was pretty neat at the one attraction, there were a couple birds that ran into a pen that Ethan saw and he kept watching the pen for them to come out again (as seen above).  I was so happy he noticed them.

 

 

Lorelei went into the petting enclosure and pet goats, llamas and deer.

Not to be Left Out

Lorelei too has been losing some teeth lately.  Bet you can't guess which ones...

It is crazy how quick those two came out.  She wiggled one out at bedtime and then the following day she touched the other one and it came out.  The tooth fairy was very kind to her.  (On a side note, I should remind her she has forgotten some of Ethan's teeth...)  Lorelei can be very optimistic at times.  The bright side for her is that now she can make a cute bunny face.

A Great Week

In mid-August Ethan attended a summer camp for the first time ever!  It was a gym and swim camp which started with crafts and he had a great time, which pleasantly surprised us.  I wasn't sure how much he would enjoy the crafts and gym portion...but then had a hard time picturing how they would adapt the gym portion.  It is really neat what is out there...  I went with him to the camp to do his feed/meds and so got to observe much of the camp.  The downside to his feeds running as long as they do is that he wasn't able to get into his walker much for the gym portion. 

Ethan doesn't often have a lot of room to roam around in and I think he was enjoying the freedom of movement at camp.  The door knobs were of particular interest for him on the first day.

Ethan (and most of his friends at camp) enjoyed the pool session the most.  It was Ethan's first time back in a pool in about 2 years.  At first he was just getting used to the different sensation but started to feel more comfortable on day two and just kept going all week; splashing and kicking his feet.  He had a wonderful volunteer helper working with him.  The final day of camp they had a treasure hunt with a pirate theme.  Ethan's tattoo stayed on for a long time, until I finally removed it - which surprised me in comparison to Lorelei's tattoos...I guess that is the difference when you use your hands and wash them a whole lot.

 

It was a really great experience for Ethan and I hope he can do it again next year!

 

That week was a rough one for us.  Besides illnesses that arise and any serious medical issues, which I think we typically handle in stride, the hardest time for us is when we are sleep deprived.  For about a two week period Ethan wasn't sleeping well through the night, waking for hours on end and not always going back to sleep.  He pulled at least two of the latter nights the week of camp and that pushed us over the edge.  It was later in that week that we found out what could have been contributing to it...

 

 

 

If you look really closely you might notice that his lower gums have whitish spots on them...  Ethan is growing his adult teeth!  I suspected this the day before his dentist confirmed it at a routine follow up appointment.  It has been almost two years since Ethan first lost a tooth.  But what the dentist went on to tell us, surprised even me!  Ethan has pushed through his bottom two 6-year molars.  As the name implies they are typically grown later than 4 1/2 years old!

 

Thankfully, Ethan rounded out the week with a couple good nights of sleep which we thoroughly appreciated!