Half the Energy, Twice the Spunk

A much more in depth update to follow in the next few days - but suffice to say were home - the week was phenomenal, and its going to take alot of deprogramming to convince my children that we cannot continue to have ice cream for breakfast, go to amazing theme parks every day, and no, people wont randomly arrive at our home with exotic animals for us to hold, touch, and play with every evening.

Some particularily memorable moments:

Tyler announced that his Goofy is his 'Favorite Disney Predator'

Brandon got to feed and pet the dolphins which was amazing

Mom got to hold an armadillo (their warm - i always imagined them as cold)

Dad got a hug from the Grinch

as we were waiting in the secure area of the Orlando Airport, Tyler amused himself by randomly screaming 'Its a good day to die!!" (quoting the hamster off the movie Bolt - complete with the grunting voice and screwed up face)... against the backdrop of the Homeland Security Threat Level announcements it made for an amusing few hours.... thankfully the men in black did not consider us a terrorist threat and didn't ambush us in the waiting area. Though after 6 hours of burning time waiting for our plane we may well have happily handed Tyler over.

To wrap up a magical, exhausting, fun filled trip, as we were driving home from the airport, on the highway, at 12:45am, immidately in front of us, while we were all looking out the front window, a 'fireball' meteorite flew across the sky, leaving a huge, glowing green trail in its path that hung around for a little bit... It was a fitting end to Brandon's "wish trip".

Now were home, unpacked, and trying to regroup.


Oh and just for kicks, while we wandered Universal Studios 3 days ago it was 38C (100F) out and sunny.... Today, at home, it is dropping to a forcast -48C (-54F) with the windchill.

Welcome home indeed. :)


Pictures soon I promise

Well were off on our pilgrimage tommorrow...

We will be flying to Orlando and checking into Give Kids the World Village tommorrow evening... its a village near the Disney empire that is exclusively for children travelling on 'Wishes'.

Make a Wish Canada has been amazing - they arranged everything we could possibly dream of and we are certain this will be a trip of a lifetime for all of us...

The excitement here is over the top :)

Not much else going on so heres a few random pics to tie you over until we get back next week!

Tyler and dad were doctoring up Brandons wheelchair today in preparation for all the miles were sure to put on it this week:




And this one is completely random: Lucy our cat is creepy... the vast majority of her daytime hours are spent staring into this very closet - there is nothing in this closet beyond what the picture shows... clothes, boots, and the like...
Yet she stares... for hours... its rather unsettling.....




Until next time!!

(I will likely update from Florida but if i dont, expect a looong recap next week!!)

As promised: Pictures of Brandons new Kimba!





It is fantastic to see him at the table in this thing - he sits and eats completely relaxed - its awsome... usually he is in constant motion - constantly resettling, catching his balance, shifting his weight, and occasionally falling right off his chair - in this seat he is completely and totally still - focusing only on eating. Its wonderful!



Not to be left out - Tyler demanded a place in the spotlight! :)



Tonite Brandon is off at the Christmas block party with dad, and I am settling in to watch Home Alone 2 with Tyler...

Good day all around :)

This summer the boys got to meet the local fire chief and got the chance to check out the fire truck... in our front yard... it was a blast and they were just thrilled!

Here are the pictures I (finally) uploaded and cropped....

My favorite:



The rest:








It was a great day and made for some awsome pictures :D

Well today we got a new 'toy' for Brandon!

Muscular Dystrophy Canada and Safeway Canada awarded Brandon a grant this summer to purchase this equipment - its a system we have wanted for some time but just couldnt scare up the money for (and money it costs!).

He now has a brand new Kimba Seating System with an indoor Spider (hi-lo) base, and an outdoor Cross (jogger/bike trailer) base...

This is what the Spider Base looks like: (our upholstery is orange though - pictures to follow this week)



And this is the Cross:




The cross work as a big wheel jogging stroller AND converts into a Bicycle trailer...

the Kimba seat itself lifts off and will secure to either base...

Its FANTASTIC... Brandon used it for dinner tonite and it was so great to see him comfortably sitting at our dinner table - usually he spends most of the meal squirming and fussing to get comfortable - it was awsome to just see him settle right in comfortably! :)


New equipment is always tough - its great that Brandon gets what he needs and has ways to stay comfortable - but by the same token its always hard to admit that he NEEDS that extra support.


For today though were happy to have the means to give him what he needs.

Thank you Safeway and MDC!

Not much happening - Im on the mend finally, but thus starts the electrolyte battle - I'd rather battle wacky electrolytes than low blood pressure any day though.
Tyler is feverish and snotty today - fun fun.
Brandon is Brandon - happy, healthy, and coming down off a fun day yesterday!

So some reflections from the past - old favorites:



Brandon in Mexico in January - less than a year ago this boy could barely sit up on his own - how far he's come... and still the grin...



Tyler - same trip - easily one of my favorite pictures of all time.



Tyler uncanny ability to sleep anywhere at anytime...



Again... uncanny...




Tylers first 'photo shoot'... babyzilla....



Brandon - Mexico - Ice Cream...



The boys in transit.. That is indeed Mr Bear Brandon has there... a much whiter version but the same bear!




A more successful baby photo shoot with Tyler....




Brandon - Mr Cool....




One of my favorites of them as wee ones... :)



This sums up Tys first 18 months....



Brandon was about 3.5 when he started wanting his hair 'done'...



So tasty....



Tyler as an Eeyore a few years ago...



one of Ty's 'cuter' inpatient moments... we spent alot of time in hospital with the stinker that year - thankfully thats behind us!




Ty and our gigantic beanbag



One of my favorites of Brandon - we called him Fudd.



Brandons first wheelchair - the joys of mobility!



Tyler as eeyore the 3rd year in a row... as i said - he's a slow grower...



Our Stinkers...




The boys have Fisher Price digital cameras and this is one of my favorite pictures they have taken... not sure why but baby and kid toes are so cute!



Blackberry photo of Christmas morning last year - in spite of feeling totally rotten he had a very good morning :) Still smiling.

On that note - I'm off for the weekend... enjoyed my trip down memory lane - hope you all did as well...

:)

K

Well were halfway through what can easily be described as the busyiest week of the year for our family. I dont know why Novembers are like this for us but they are nuts.

This week alone was full of appointments, bloodwork, meetings, parent teacher interviews, birthday parties, dinner parties, etc... all in 7 days.

Were over a bulk of it - 1 dinner part, 1 lab visit, 1 doctors visit, 4 hours devoted to tracking down aforementioned lab results, one meeting, and 2 hours at the pharmacy down, one dinner party, one hospital appointment, one birthday party, and one parent teacher interview to go.

Tylers latest kick this week is the "Safety Violation"... he has yet to tire of informing us (and really anyone that will listen) that he is indeed a safety violation. we dont think he knows what that is but hey... its pretty accurate in our opinion.

Brandon is doing very well (knock on wood!!!), busy with school and fully enjoying a few days off this week.

Both boys are counting down the days to disney... Tyler realised today that he is going to get to see Lightning McQueen at Disney and the entire thing reached a whole new level of 'awesomeness' in his words...

I have been battling the blood pressure beast the past several weeks. Everythign has sort of culminated this week and i am now dealing with crushingly low blood pressures (75/50 sitting down and what can only be written as '0' when i stand up as neither machine or doctor was able to get any kind of reading when i was upright (and rapidly blacking out - im ok upright as long as im moving constantly but as soon as I stand still for any stretch things go south fast). The meds I am on for said blood pressure have been increased which are actually helping (yesterday I was 85/50 sitting down!! still '0' standing but the 85 was an improvement at least), but unfortunately they have a tendancy to drop ones potassium levels which is pretty dangerous, and as of this week Im already 'moderately low'... too much lower and I'll be in 'critical' territory which they dont like to see.
Its a horridly fine balancing act, and we are all tired of it.

I see cardiology on Friday to discuss the next steps - they will be starting me on a new medication that has been shown to help, as well as preparing to trial IVIG as they (and several other doctors) feel strongly that I have an autoimmune neuropathy at the root of all this. Were all hopeful this might be our answer as the IVIG has the potential to 'fix' me... but were trying not to get too excited at the prospect.

Onward and Upwards.


At this moment, today, we're all doing alright, and we'll take it.

Well its been a long few weeks so I am behind on my updates!

So I'll let the pictures do most of the talking today...

Halloween was a blast - the boys had an absolute ball...

Tyler was Eeyore:


(this is him putting on his 'sad' eeyore face)

Tyler was eeyore the year he was an infant - because we had an eeyore costume his size... then he was eeyore the next year just for kicks because he still fit it - his first word popped up around that time and was (you guessed it) eeyore (or in Tylerese 'eeeyoooo')... the next year he STILL fit the eeyore costume from when he was a baby (what can I say - he's a slow grower) and again - he was eeyore...
Last year I found another eeyore costume and couldnt help myself, as he was still young enough to let me choose for him...
This year I took him to walmart to pick out a costume, gave him full choice of their massive selection - and he picked - again - eeyore.... he was SO happy to find an eeyore costume in his size...

he does make a cute eeyore.



Tyler also picked out Brandons costume as Brandon was at school and it was the day before halloween (bad mom... we didnt even have a pumpkin because i waited too long to get one...) Brandon was THRILLED to be a 'fire ninja turtle' this year...




Were not exactly sure what a 'fire ninja turtle' is but he was happy with it.







Dad even dressed up this year and took them out while mom was on 'candy duty' at the house...





I think they made a good crew!! They certainly hauled in the candy!


The past few weeks have been decent - Ive been under the weather (thus the lack of updates) but things are on the mend for everyone and we are looking forward to Brandons upcoming DisneyWorld Make a Wish trip!!

Things are normal and fun at the moment and were very much enjoying it!


Till next time.

Well on Wedensday we got word that Dave had to go up north to work for a few days, so we all packed up and came to the city on Thursday, planning to stay until Sunday evening and then coming home as Dave was to be home that evening.

As it always go down with the north, plans changed, Dave wound up at a fly in lodge working for Sunday morning then the weather changed, and he couldnt fly out, so there he sits, waiting for the clouds to lift.

Thankfully were used to this scenario and hadnt 'planned' on him actually making it home the day he was supposed to (in 5 years of doing this i dont think he ever has come home on his intended flight).

So the boys and I are sticking around the city for a few more days. their enjoying themselves regardless, and my parents are loving the extra 'baby time' they get on account of it... at least I hope their enjoying it... if not then 'my parents are ready to pull their hair out' would be a better description.

Regardless...

Yesterday we were able to attend a CFL football game curtosy of tickets donated to a local childrens charity - they called me last week and offered me wheelchair accessible tickets to the game. I got 4 as Brandon LOVES the football games, and I figured I'd take Brandon, my nanny/cousin, and my nefew who also loves football and have a fun afternoon at the stadium.

Well we went to pick up the tickets at the stadium, and found out they were actually ROW 1... im not exaggerating when i say we were 3.5 feet away from the turf... it was absolutely amazing... we all sat down and just looked around in complete shock... Our team lost, but from Row 1 a loss is still an amazing game... it was just amazing. The cheerleaders (Brandons favorite) came by and fawned over Brandon... the mascot came by and played with him, even a few players came over and gave him a high five... it was fantastic. he's still glowing.

It was a great day - one of the rare times when were able to forget all the medical crap and feel 'normalish' for a little while.

Pictures to follow once im back at my own computer!

Keely

As promised - more pictures.

Tonite the boys decided to be firemen before bed... They both have more firefighter helmets, firegear, firetrucks, and general fireman paraphanalia than any children I know. Brandon even has a full set of honest to goodness, used, Turnout Gear hanging on his wall with his real Deputy Fire Chief helmet... they are serious fans of the firefighters.

And of course their helmets coordinate with the blue jailbird jammies....





They do this quite regularily together - and their games get quite involved... tonite they were rescuing the cat from a burning building apparently. The cat wanted nothing to do with it.




At bedtime Brandon requested that I take some pictures of Mr Bear...

Mr. Bear has been with us for some time. He was MY bear as a child (the date of manufacture is indeed 1982!) and was well loved by the time it got to Brandon... since Brandon claimed him, Mr Bear has been repaired many times, is bare in many places, and has seen the inside of more operating rooms than most grown men... he has been around. But, in Brandons eyes, he's still Mr. Bear and we all love him for the comfort he brings our boy.



This one needs no explanation - this is a tough smile to catch on film as Brandon rarely sits still long enough to get it... Just had to share!

Well whatever virus Brandon had this weekend has run its course and he managed to avoid the hospital thanks to his feeding tube!

He's back at school and 100% back to himself, so were pretty happy with that. :)

Not much to update at the moment, and no photos to add just yet - but soon!

No pictures today.

Brandon woke up miserable, had a few tantrums and promptly threw up the 2 bites he managed to eat of his breakfast.

He's been on continuous slow tube feeds of a juice/milk/water/fruit blend all day just to keep some calories and fluids going in the hopes that this is mild and short lived and we can avoid an admission.

So far he's kept it all down but he has a habit of doing so until just after he falls asleep then throwing up shocking amounts... he's settling into bed now, so we will see how the night goes.

Hope Hope Hoping we dont end up inpatient.

It's been a LONG day... when he's unwell he gets very very demanding so we generally dont go more than 2-3 minutes at a time without him asking for something, crying for something, whining, or yelling at us... its completely mentally exhausting.

And to top it off the neverending threat of having to make a late night run to the ER means we dont get to have a glass of wine after they go to bed to unwind... since we may need to drive. (and those of you who know me, know that 1 glass of wine and I am well beyond 'driving' form...)

so they are both settling in for the night, my house is clean, and I am washing clothes and packing a hospital bag just in case.

About to settle in with some juice, natchos, and some friday night television.


wish us luck.

Well due to popular demand I have a video of Brandon on the move...



Again - were all pretty thrilled over here!!

Not to be outdone, Tyler decided he wanted a video up too.... Here he is singing his speckled frog song...



Now take that minute long clip... multiply it by ALL DAY LONG... and people wonder why im so tired by the time this boy goes to bed! :)

Seriously though - he is quite the entertainer!

Well we have some amazing news at our end - but wanted to start with some general Tylerisms....




Tyler discovered video games recently notably his game boy... unfortunately at 4 he lacks the skill to play them in any meaningful way, and tends to try (loudly at that), and eventually get frustrated.



As much as I feel bad for him, Im sure theres a life lesson in there somewhere... and Im sure it wont be long until he can kick my butt at tetris so I try not to giggle too loudly at how adorable he is when he loses.


Below is Lucy, she is Bobby Joes Sidekick. This is the cat that our poor dragon is hopelessly in love with. Im pretty sure she knows it too as she goes to great lengths to wag her tail (literally!) in front of his cage.



Lucy spends a great deal of time parking herself right here on the boys Car mat... Much to Brandons displeasure. Brandon will spend half his play time chasing Lucy off the town firehall, or school, or mall, and Lucy will just cirle around and take up residence on the construction site or train station. Eventually Brandon gives up and tells me that she is now a hill, or a monster. To spend a day in his head.





Brandon LOVES his car mat. He will spend hours happily playing with his cars, enacting very complex emergencies that require the fire department, police, ambulance, and sometimes even the coast guard helicopters involvement. He doesnt seem to mind that the coast guard helicopter they have is literally twice the size of the firehall on his car mat - apparently scale is meaningless in his little car mat world. That or he honestly thinks helicoptors are the size of sky scrapers.

On to our good news.....



Brandon started on a medication called Sinimet (L-Dopa) this past March. Sinimet is a treatment for parkinsons disease and a few other movement disorders. Brandons disease primarily affects the basal ganglia - the part of his brain responsible for movement. And as a result he has alot of the features of parkinsons disease. Indeed one of his 'diagnosis's' is 'parkinsonism'. Last November, after a viral throat infection (basically a cold with a sore throat. really not a big deal for most kids) Brandon wound up dehydrated (his worst enemy) and had a major neurological regression. He stopped walking, lost alot of control of his hands and legs and trunk, and just overall backslid ALOT.
We met a new neurologist shortly after that (ours moved) and she agreed to try to find a movement medication for Brandon in the hopes that we could get some of that control back.
We didnt have alot of hope that it would work but figured it was worth a try.

the first med was a bust. the side effects were quick and severe. we stopped it within a few weeks of starting.

The second was the sinimet.

It has been nothing short of a miracle drug.

About 5 weeks ago, the pharmacy messed up and overconcentrated the bottle of sinimet and Brandon was overdosed by nearly double on the medication.

We were pretty freaked and watched him like a hawk, but after about 2 hours he stood up and started walking. It was phenomenal.

Unfortunately we assumed it would be temporary since it was right after the overdose.

Amazingly it wasnt.

Brandon has now been walking independantly for 5 weeks. After nearly a year of being unable to do so. He is very unsteady and still falls frequently, but he's upright and loving it!!

After nearly 7 years of steady decline, we have for the first time seen some very solid, obvious improvements, and we are just beyond thrilled.

As is he.






We do recognize that it is not likely a permenant improvement - the nature of his disease is progressive and we realise that this med is only 'masking' the problem for the time being.

But right now, this week, were all overjoyed that he has the chance to have a little more normalcy in his life, for however long it sticks around!