Half the Energy, Twice the Spunk

Well Tyler is doing MUCH better today. I beleive he is 'over' this virus (2 weeks later).
Knocking on wood.

Brandon is on day 2.
His temperature has steadily climbed again. Last night he was 104. At the moment he's 102.5.

Good news is he is tolerating continuous tube feeds, so we can hope we might sneak by without an admission, but time will tell.

He's been complaining about reflux this afternoon which is usually the start of his gut not wanting to tolerate anything, which is admission time. but we will see how it goes.

Tentatively optomistic.

Brandon is hot tonite.

We were hoping we could dodge this one for him, but his chest has gotten progressively more and more junky this week, and tonight he has spiked a fever.
He's at 102 and rising.

At this point he's tolerating continuous tube feeds but has left us very little wiggle room as anything higher than 80mls/hour starts to come back up - as long as we can keep him over 60ml/hr we are doing alright - but if he drops to or below that, we will be heading in for IV fluids.

We will see how the night goes, and see where he's at in the AM but if he's still getting very hot between motrin etc, we will be going in regardless of feeding.

He just has no tolerance of being sick like this, and the IV fluids tend to get him over the hump fairly well.

Every time he gets sick, we end up with flashbacks of last winter when he got a pretty mild virus (fever + sore throat - nothing horrible) and had a major neuro regression - stopped walking for almost a year. it was awful. we're pretty sure the regression was largely because we all weren't agressive with IV fluids, and they kept trying to wean him off before he was ready... The upside is that now we know better, and his records clearly state that the goal is no longer to 'treat' dehydration, but to prevent it from happening in the first place.

Now we just have to hope the fevers dont last forever like they did with Tyler.


I'm tired just thinking about the coming week.

wish us luck.

Well that about sums up Tyler...

We saw the pediatrician today - jury's still out - he's still spiking very high fevers (103-104), and still coughing aLOT... chest sounds clear to the doc so thats good - at this point were down to 2 possibilities. One: he has a sinus infection. Two: It is just a HORRID virus that is hanging around for a very very long time. (hes had fevers off and on for 2 weeks now).

Surprisingly, were hoping for sinus infection. If it is, then we can assume it was kicked off by a milder cold - which means odds are good that Brandon will only deal with a milder cold.
If however, this is a virus... and I mean the worst/longest virus weve seen Tyler ever get... then were in it for the long haul with Brandon - he cannot handle fevers this high for more than a day - this will very likely land him inpatient for a while.

So were all hoping for a sinus infection.

Doc ordered a CBC, and CRP (tests for inflammation) and figures if it is a sinus infection, and he's had it this long, it will show some changes in these 2 tests. So we wait.

We should get the results tommorrow.

As of right now he is cooking away at 103 in bed. And Brandon has started to cough.


~sigh~

Well the boys are keeping us on our toes.

Tyler is quite sick with a virus - high fevers, nasty cough, sore throat, etc.

It started 12 days ago, he seemed to get better this past Friday, and then got worse again Sunday and has been fighting fevers since. were back to the Ped tommorrow.

Brandons doing a bit better - coughing, but no fever as of yet and hoping it stays that way. He has also got a gtube site infection (skin infection) that were fighting as well...

its been a party...

Hoping things turn the corner soon.

Alright - for the second installation of the Disney photo blitz...

Today I'll talk a little about Give Kids the World... for any of you readers who have children with serious medical problems, please consider applying for a wish for your child... it is not just a disney trip... it is THE disney trip... the disney trip money simply cannot buy... it was absolutely amazing.

The Village is a community - literally - its about 5 square blocks worth of magic... there are over 200 'villas' - duplexes, 2 bedrooms, 2 bathrooms, large living room, kitchen, dining area, driveway, laundry, the works... VERY cool... we fit the 2 kids and 3 adults comfortably with room to spare. There is several resturaunt options (Boston Market, The Gingerbread House (sponsored by Perkins, and excellent buffet style food at every meal!), Pizza Delivery in the evening (possibly some of the best pizza ive had at that), and the ice cream shop which serves (you guessed it) ice cream all day long... They even have a nifty golf cart that brings you breakfast if you ask them to! Once through the village doors, you pay for NOTHING... simply amazing.

Characters make visits to the village, so you dont need to stand in the lineups at the parks... every evening there are activities, and people visiting with all sorts of surprises (I held an armadillo... possibly MY highlight of the trip...)... its just amazing.

Theres a playground there that might put all other playgrounds to shame... its full accessible, and just all around awesome.

theres a train that drives you all over the village...

just wow.

So with no further ado:

Our villa!



Dad and Tyler at the playground...



Tyler in the playground



And lastly: Brandon, showing off the playground, AND his newly aquired walking skills!!!


It truly was a magical place... in part because of the common ground - every other family who was there 'got it'.. there was no need to explain why Brandon wouldnt talk to them, or why he was in a chair... there was no questions, or leery stares... no children who were too scared to talk to him... every single person there, just - got it.

That alone was priceless. Families like ours very quickly get used to being 'that' family... when were out, people stare. kids stare. parents get that 'aww - poor thing' look in their eyes. Whether its intentional or not, we end up feeling segregated. its inevitable.
But to spend a week where we were literally, just another family in the fray... where the questions people asked were 'how old is he?' or 'what grade is he in?' and not 'whats wrong with him?'.... that alone was priceless.


Up next... Disney!!

Well I've concluded that the reason we have been home from disney for nearly 2 months and I have yet to put any pictures up is because the idea of summing up our week in one blog post is altogether overwhelming... So I propose a comprimise:

For the next few weeks, I will pop on regularily and post 1 or 2 pictures, and an accompanying story to go with them. I figure by the end of February I will have successfully shared most of the trip AND made most of the (8 maybe 9?) readers of this blog sufficiently sick to death of Disney.

First a quick backstory: Brandon was told at 3 years old that he qualified for a "wish" from Make a Wish Canada. We have spent 4 years talking to him, tossing ideas around, and figuring out what his 'wish' would be.
At 3 years old he wished to see a rocket.
we thought about a rocket play structure, toy rockets, the space centre in Houston, and finally last year settled on the Kennedy Space Centre, as we could make it an all encompassing Disney vacation/Rocket wish.

And so it was.


So for the pictures:

A rocket of course... we spent a full day at the Kennedy Space Centre (after getting up at the crack of dawn, packing up 2 VERY excited children, 3 VERY tired grown ups, and drove for 2 hours on 'toll highways' (wow) to get there), and it was easily the highlight of the trip for Brandon... a perfect 'first outing' for the week and absolutely wish fulfilling.



Tyler - standing beneath the shuttle... these suckers are big.



The obligatory "family portrait in front of a rocket" picture.... cause everyone has one right?

And I'll wrap up with one from around the Village (we stayed at "Give Kids The World Village" - a place exclusively for Wish families - its phenomenal - we had a 2 bedroom, fully equipped HOUSE to stay in, a minivan provided, the village has everything you could dream of (including a resturaunt that serves only ice cream all day long)... there will be 'village pictures' every day...



Tylers "Bedtime Snack".... yea... parents have no say at this place. :)


Magical only begins to describe the week.

More to come!

Keely

Well Tyler is busy making mom proud.

He announced today that there's one place in the whole world he wants to go. It's not Disney. It's not the Bahamas (that was last months wish - atta boy).

It's the Large Hadron Collider.

I have never been more proud of him.

Not only that but he launced into an explanation of the program - how they will smash protons into eachother so hard that they will explode (complete with visual effects, and facial expressions that are unmatched) and then collapse and make itty bitty little black holes where theres no light, and how he wishes he could put something shiny in the black holes so he could see what was inside it but that the black hole would suck the shiny thing in faster than its light could get out.

Again... proudest moment of my life...

We have discovered the BBC documentaries and they are surprisingly captivating for the boy... yesterday he watched a full hour of Chemistry: a Volatile History, and today he watched a documentary on black holes (obviously), and a show on dolphins.

BBC is our new best friend.


So yes. my 4 year old can give you a roughly accurate description of black holes.

And his dream is to visit the Large Hadron Collider in Swizerland.

My universe is complete.