Half the Energy, Twice the Spunk

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