Where has the Summer Gone?

With Ethan only having had a short period of good health (July) it seems there was no real summer.  We certainly didn't get much of that promised 'kids are healthier in summer'.  The warm weather is becoming a memory and the cooler weather is here and seems to want to stay.  Don't get me wrong, I prefer this kind of weather (high teens to mid-20s)...just not the germs that the full change of season can bring.

Especially since our appointment for the second opinion.  The surgeon we were referred to suggested we try casting again (which was what I was hoping for).  It would mean that Ethan goes into a cast for two months straight, has the cast removed and a second one put on right away (in the OR again since they have to manipulate his spine each time) for another two months, then that cast would be removed and number three goes on for another two months.  Once he is cut free of that cast he would be in a hard brace for about a year before they consider recasting.  That would be a total of 6 months in casts.  Honestly not as long as I was expecting, BUT (and there's always a but isn't there?) during the time Ethan is casted we would have to keep him isolated from anyone who might be sick (cold, cough, and of course anything more severe).  The success or failure of his casting will be determined by the respiratory illnesses he might catch requiring him to be sprung from the cast before the two months are up.  And this going into cold and flu season.  Now how in the world are we going to be more cautious than before?  We have a rule at the house, you enter the house you wash your hands before you touch anything.  You sanitize your hands if you blow your nose, stay away from Ethan if unwell, etc.  Now to figure out how to protect him even more...  We pretty much had him in isolation from March-July and we all know how well that went.  He hardly gets to go anywhere as it is besides therapy, hospital for appointments or procedures, the odd outing (and by odd I really mean rare).  It was suggested if he is near others who might be sick then either they should wear a mask or he should.  What does it all mean?  Likely no daycare, at least for the 6 months of casting.  Will he be allowed/able to go to therapy?  What about respite?  Do we mask him anytime he leaves the house?

Those questions aside...the surgeon also said it is our final option before surgery.  He then explained there are two types of surgery that they could do.  The first is the growing rods which we knew about.  He said there is a risk (outside of all the other risks like those that come with any surgery) that his spine could spontaneously fuse with the growing rods.  He then told us of his preferred method.  To attach titanium rods to the rib cage and pelvis in a procedure called VEPTR.  The good thing about this surgery would be that there is a much lower risk of his spine spontaneously fusing.  A side effect though is that it could break his ribs, could come loose (likely similar to a broken bone that has not punctured the skin) and it too requires multiple surgeries.  They both share that concern (the VEPTR can be every 4-6 months, growing rods are every 6) and the risks of infection.  He led us to believe that any option (including the casting) would just be a stepping stone to full fusion (I'm hoping Ethan proves him wrong!).  We now need to wait for our local surgeon to get the recommendation and decide how to proceed.  We're hoping casting and that it will be successful.  I'll definitely be looking for good vibes around that time!

His odd behaviour I mentioned last time is still a concern.  He still tenses up his limbs, grunts and pushes (or seems to) but often nothing comes.  No gas, no stool...nothing.  He is still aware enough to look around and if you touch his legs now he will bend them but we're not sure why he continues to do this.  He has been receiving increased fibre a week tomorrow, but perhaps he needs more?!  The thing is though, he is still going a couple times a day.  So we're now a bit concerned that it could be a neurological thing versus a GI thing (he doesn't scream with the tensing anymore).  I have contacted his doctors and hope we'll hear from someone soon.  We don't think it is seizure activity but do not know what it could be.

Meanwhile, it seems he's not the only one in my circle of friends whose child is doing things we'd rather not see.  Hopefully they will all start to behave and not worry their mommies so much.

Oh and Lorelei was playing with a caterpillar recently (not at home) that caused a rash on her arm.  It turns out the thing is poisonous (like poison ivy).  Of course I found out about that about 3-4 days later.  She now has just raised spots where the venom touched her but you can't see them.  Google Hickory Tussock Moth Caterpillar to see one.  I can totally see why she would have picked it up, and am trying to encourage her curiosity but suggested she not pick this one up again as her reaction could be worse next time.

Only One More Sleep

Until we go to Ethan's second opinion.  We're heading there tomorrow morning.  I'm excited to finally have him looked at but am nervous about the trip (Ethan's never been in the car that long in one day) and what the surgeon might have to say about his back.

He saw his pediatrician today and she is quite happy with how he is doing.  He sounds so much better and although his ear is still a bit pink it does not require more antibiotics.  He did develop an odd new behaviour, he was shrieking in pain this week as he tensed up and strained..but nothing came.  Then it started to come, and the odour...and an update to his GI doc, dietitian and pediatrician.  We all thought constipation and have been treating that with more fibre...and to be on the safe side we have sent stool samples today to be sure there is no recurrence of the C difficile.

One of the developmental things Ethan is doing is to share.  Mainly his soother with one of us but he will also share with a toy if asked.  He is starting to motor forward more on his walker (getting a good video has been hard).  And he also loves to play with the fridge magnets.  The horse is his favourite one and he loves to hear what they have to say...

He always skips to his favourite part, "Did you know horses wear shoes, horse shoes!" and busts a gut giggling.  He thinks it is so funny that horses would wear shoes.  We think it is pretty neat that he gets the concept of a horse wearing shoes.  :)

The Fair

This weekend we took Lorelei to the local fair while Ethan got to spend a few hours with his uncle Jon.  We started with the agricultural portion of it, it was pretty neat to see all the different animals.  Horses that are taller than Clayton (and that was just the body, not including the neck and head), many different types of chickens, goats, cows, horses, bunnies, the list goes on...

All the babies were pretty cool to see and be able to touch.  The momma goat started to bleat at Lorelei so we had her pull her hand out quickly.  The piglet's were softer than I expected and the chickens were fluffy soft.

We then headed into a building and watched a reptile show and checked out the reptiles after.  We learned that most people have no clue about local endangered species.  So I looked it up.  As of November 2010, there are now 631 endangered species at risk listed in our country.  They also taught us that birds are now classed as reptiles.

See that?  Lorelei had no fear and went up to touch the Reticulated Python and Alligator.  And drum roll please....I actually touched them too!  It took me three tries to touch the snake, but I did it and then touched it again.  It felt much different than I expected.  The alligator was so rough it wasn't like you were touching an animal at all.  Lorelei also touched a lizard later but I did not capture that one on film. 

The former is the only way I hope to ever see Lorelei in a police car!  Lorelei's favourite part came next...

She really enjoyed the rides.  Due to limited tickets, we sent her on the first ride alone.  I think I was more nervous than her.  I tracked her the whole time.  She is the little one two above the tent/ride that goes across the fair.  Eeny, meeny, miney, moe won Clayton the chance to go on the Ferris wheel.  We ended our visit with a colossal onion, funnel cake and fries (can anyone say too much grease?)...and Lorelei wanting to ride more.

Ethan still has his ear infection and his antibiotics have been extended.  His neurology appointment went really well, the neurologist is quite pleased with his progress.  He has a new switch to help give him a 'voice'...and he still has no daycare spot.  I guess it can't all be good news all the time.  I'll settle for most of the time.  ;)

Belated Update

Well, we had a really great July!
Unfortunately, in early August Ethan got sick with a cold.  :(  It started with a whole lot of vomiting, some even projectile forcing me to go to the clinic with him.  I wanted to be sure it wasn't brain related.  Ethan typically does not projectile vomit unless it is more than just a cold.  The doctor there seemed pretty sure his brain was okay and thought it was just Ethan fighting the cold.  The good news is that we have managed to stay out of hospital.  :)  I'm not sure if it is his increased calories or if he was just better equipped to fight the cold...  It took him two weeks to clear, and now he is sick again with an ear/throat infection.  Again with the vomiting.  :(

We have heard back from Ethan's orthopedic surgeon's office.  Ethan will not be casted at this time, and the doctor does not want to do anything until Ethan is seen by a doctor he referred us to in a larger hospital.  We are now desperately awaiting an appointment time to see this new orthopedic surgeon.  It is mainly for a second opinion and likely a bit of 'is this the best way to proceed?' kind of appointment.  The doctor seems to have a lot of experience and from what I understand specializes in non-fusion ways to correct the back.  Their referral appointments are booked on a case by case situation and the assistant of our current orthopedic surgeon has asked them to expedite it and is trying to stay on top of it for us.  Long story short, for some reason Ethan's referral did not go in and it had to be resubmitted, we now have an appointment for later this month.  The waiting is the hardest part, especially knowing the current state of his back.

Last month Ethan got his new set of wheels and I finally took some pictures and got them loaded onto the PC. 

We had to have it adjusted because he kept scootching forward, these photos were taken on the way to the appointment.  We're still trying to get used to the new 'stroller' (it is a bit harder to load/unload), but Ethan seems to like it.

It's September, fall is near

It's Lorelei's favourite time of year

Boys and girls make new friends

Teachers lend a helping hand

Lots to learn and so much fun

It's back to school for everyone!

(Revised from JK/SK readings)

Lorelei started Grade One this year!  She is very excited and has had a great start thus far.  Upon request, we took some photos to document her first day of school (as mentioned I'm a bit late updating...).

I don't think Lorelei was too thrilled about having her picture taken while she had breakfast.

Getting ready for school.  Dressed in her new outfit and new backpack Lorelei was ready for her first day of Grade One.  She even got to wear her 'fancy' shoes.  She is such a girly girl!

It took some persuading but she put on her coat.  September has been mostly chilly, but there have still been some nice warm days.

It is amazing how fast they grow!