Half the Energy, Twice the Spunk

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