What have we been doing since late September! Anything and everything, working hard in therapy, loving school, extra-curriculars, juggling two kids in two different schools at two totally different times, advocating for special education students in our district and also enjoying fun times!
Cameron and Connor both are still loving school, Cameron had a great first report card. We are so proud of him and he's really come so far with writing his name since the start of the year. It's really rewarding to see him make such nice progress.
I've observed him a few days at school and he's keeping up as best he can in all areas. He tries all the exercises and activities in Gym which I love to see. He's not down on himself and doesn't seem to notice or care that he's not running, jumping, hopping or skipping like the other kids. He does know when something is a challenge and tires out easily is what I am hearing from aide. But he is TRYING and that is awesome!
He also seems to think he's the "mayor" of his school. A recent note home read "Cameron nearly fell down the stairs leaving gym today because he was distracted saying hi to all his 5th grade friends".
The kids in his class are great and we are hoping after a little show-n-tell with Cameron's braces they will start to understand he's not pushing them when standing in line, he's just trying to keep his balance. This is something the teachers have been working on, it's hard to make a group of 5-6 year olds understand the concept of balance when they can all so easily stand without moving in a line.
Health wise Cameron had a really good Fall, yahoo! Just after Thanksgiving things got a bit rough (I am coming to dread this holiday after last year's debacle
There's been a trip to the ER after some repeated bouts of vomiting. Yes, it's flu season and trust me we all went with "it's the flu" the first and maybe even second time around, but by the third round and the pattern of only happening at night, well you know this story.
As usual the ER visit led to imaging which showed, wait for it.... NO CHANGE... And so it appears as though we are heading down a similar path to last May-June and my favorite summer of 2010. But we're not jumping to conclusions, we'll wait for Cameron to tell us when it's a real problem.
We did have an appointment with the Neurosurgeon and she believes "something is brewing in that head of his" but it's up to him if it takes, 3 days, 3 weeks or 3 months to become a real problem requiring surgical intervention. She even had already spoken with the manufacturer of his shunt (Medtronic) and has a new idea on how we could treat this issue if we do go back into surgery sometime. He's writing his own history is what she continues to tell me, as he is unlike any other patient she has.
The good news is he's been pretty much back to baseline,with the exception of some increased muscle tone, for the last two weeks. We are monitoring the muscle tone and gait changes, holding out hope that this will all pass and be nothing. The weather change yesterday seems to have affected him as well, he woke up in pain last night and shuttled back and forth from toilet to toilet but never let loose.
If I know Cameron whatever "this" is, will slowly progress over time, giving us a false sense of security at times. So yeah, we're on edge. But I was pretty sure Matt and I were back to sleeping through the night vs. the week of staring and watching him at night, that is until last night!
Connor and Cameron are great buddies and I really feel so lucky that little surprise joined us, his demeanor is SO different from Cameron's and yet he has this super sweet side that I just love.
We are looking forward to Christmas at home, Connor tells me everyday that Christmas is taking FOREVER, in this very dramatic tone. Cameron wants a purple computer and a "play all day garage" that he saw in a catalog 2 years ago...ummm, Santa could use a little help on that one! Cameron is very much in the holiday spirit singing carols nearly every day, with a little Adele thrown in for a good measure.
We just enjoyed a trip to Michigan to celebrate my Grandfather's (Baba)95th Birthday!
And speaking of Birthdays...Happy 37th Birthday to DAD!
I will try to not let as much time pass between posts...a possible New Year's Resolution? But of course with the New Year comes all of our specialist visits, I've already booked Orthopaedics, Urology, a Flow EMG test, an MRI, Orthotics & Nuerosurgery, this should take us to March.
Oh what fun it is to ride...
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