Half the Energy, Twice the Spunk

It's been too long since I updated!

The boys are doing great... both are healthy, happy and enjoying spring break.

Things at our end are comfortably calm, and we're hopeful they will stay that way.

The big news of the week is MitoCanada!

Last fall, myself along with several other families across the country set out to establish a charity in Canada serving the Mitochondrial Disease Community.
After a tremendous amount of work on the part of the whole team, we are one step closer to realising this goal... last week our website went live:

www.mitocanada.org

and on April 17th we will be convening in Hamilton for our first planning conference. on Sunday April 18th we will be hosting a lecture by Dr Tarnopolsky, a leader in the field in Canada - all who are interested are invited and it will be followed by a family social.

Plans have been falling into place and the whole MitoCanada entity has grown by leaps and bounds over the past several weeks as it has all come together.

We are all very excited to see this thing grow!!

The boys are healthy (yea!).

The cat's are healthy.

Mom's falling apart, but thrilled that everyone else is finally in one peice.

Onward and upward.

Both boys are cool, happy, and playing today!
Brandon had a GREAT sleep last night - likely a combination of the antibiotics doing their thing, and the Cough Assist machine clearing out his chest before bed...
Tyler is completely back to himself, which is wonderful to see after 2.5 weeks of being sick!

Brandon is well on the way.

Unfortunately we have had to make the decision to pull Tyler out of daycare for the rest of the year. We kept him home from Sept-Feb hoping to avoid the worst of flu season. He does alright with the illnesses, but they are so so hard on Brandon that we just couldnt risk it.
Unfortunately he was only back at daycare for a week and a half and this last brutal bout of illness took hold. Its just too hard on Brandon.

Thankfully kindergarden will start in the fall and he will be in a less 'snotty' environment - its just impossible to avoid with daycare.

For now we will enjoy some newfound health, and happy kids.

Well Brandon had a better day though he is still getting feverish and his chest sounds awful.
The boys had me build a giant fort in the living room which kept them pretty content for the morning at least.

This afternoon we drove into the city to see the Respitory Therapist and pick up our new 'toy'.

Because of the weakness Brandon's disorder causes, he has alot of trouble coughing. its been an issue for a while, and basically when he's sick, you can hear his chest grumbling and rattling and you just want to cough FOR him... but when he coughs it just doesn't accomplish much at all, as he just cant get enough force built up. It's just part and parcel for neuromuscular diseases unfortunately.

We talked about a machine called a Cough Assist a while back and this illness has made it clear he needs the extra help, and thankfully the respitory department had one kicking around (their 5000$ a pop from what Im told - yeesh!), so it now lives beside Brandons bed.

Basically its a machine that hooks up to a mask that goes over Brandons face. the machine will blow air into his lungs, get them good and inflated, then very quickly suck the air out - essentially forcing him to cough.

It is odd. It feels odd, and we thought it would be a nightmare to get him used to it... he wasn't sure about it at the clinic but by the 3rd round at home, he was asking for more, so its clearly making him feel better!!

Like all new peices of equipment - its a tough pill to swallow, as it represents disease progression and increased needs... but at the same time it is something that will make his life easier, and make him feel better... which makes it worth it.

Hoping tommorrow is a cooler and happier day for him.


Tyler is almost 100% again... happy, healthy, and very much Tyler.
Today he explained to the respitory therapist what DNA was ("did you know thats what our cells are made of?!")... he's a hoot! :)

Thanks for checking...

Keely

Brandon was started on antibiotics yesterday (keflex) for the beginnings of pnemonia after several days of very high fevers, and a very cruddy sounding chest...
He's already seeming a little less rough today... though his cough is just awful.

Tyler is cool, and I beleve on the mend.

I think we can see a light at the end of the tunnel.

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.