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.