Monday, July 2, 2012

Grateful for big things and little things

I am so grateful for this fancy schmancy nebuliser that takes 10 minutes to pump through the medication. It's predecessor took 30 minutes. And it was noisy. Really noisy. The TV volume was bumped up to compete with the noise. It was all a bit crazy. This neb is silent. It has changed our lives. Worth every cent.

I am grateful that our government-finally-included Tobi on the PBS. Now we have access to this medication that other countries have been using forever. When Boo was a baby she participated in a research trial for this medication through our cystic fibrosis clinic. Now, at 10 years old it is finally available for her use. It's specifically designed for inhalation. Prior to this being available, she breathed in a medication that was designed for IV use, not inhalation. This medication is much less irritating on her throat. And I do not have to draw it out of the vial with a syringe and mix it with saline.  It comes premixed in a nice plastic vial where I snap off the top and pour it in. It also saves me a trip to dispose of the needles. Easy peasy lemon squeezy. A happier, more compliant little girl. Big win in my books!
You can see it's expensive which is mostly why it took so long to be placed on the PBS. Ever so grateful for a health care system that reduces the cost of Boo's treatments considerably. 

It's been a challenging week at our place with 4 out 5 of us being sick. Sleep deprivation makes all it seem worse than it really is, I think. For all of us! Tired, cranky, sick kids and a tired, cranky, sick mama equals no fun for anyone. On the weekend I was able to have some early nights. The Mr cleaned up the dishes from the previous night. He bought my morning coffee to me in bed and manned the fort while I had a litte lay in.

I am SO GRATEFUL to have my man by my side.
And to all those parenting alone, for whatever reason, I admire you. It's a tough gig some days.

To my partner in life and love,
While it isn't always a bed of roses, I am ever so grateful to be sharing the journey with you.
Thank you for all that you are and all that you do. I am lucky indeed!

Joining in with this little community of gratefuls.

PS I am grateful for Sunday evening TV.
New Girl you never fail to induce some laughing out loud and for that I AM GRATEFUL!


Zara said...

Oh all those wonderful things to be grateful for. It can be hard recognising them sometimes I know.
A lovely post.

Cat said...

That is such great news that life is made easier for your little girl having to take her medicine and for having hubbies that are just there for you no matter what. x

tartankiwi said...

Such wonderful news! I can't begin to imagine what a difference to your lives the new medication makes. Here's to a happy and healthy little girl.

karlyn Jackson said...

Yep, you've got a keeper there, I love Grantly's coffees. Hope you are all on the mend and having a better week. love you lots xxx

Lisa H said...

Wow! The price tag on those meds blows my mind. I'm so glad you are able to have access to it for your little girl. I was fortunate to have two healthy kids, and am in awe of parents of kids with health issues.

On the other hand I've been a single mum for more than 10 years, so living life's challenges from a different perspective.
Visiting from 52 weeks of grateful. x

Yvette Adams said...

Wow I remember that trial. That sure was a long time ago. HOORAY for that win! And wow, what a difference to the original cost!!!

Maxabella said...

That is very good news indeed!! It is so nice to read of a win for a family for a change, Lea. Thanks for sharing your news.

A lovely love note to your husband too.


PS - huge New Girl fan here too! It's so absurd and the characters are brilliant.

Max said...

that's great news indeed, so happy for you x

jody said...

Very good news, wonderful to hear!

Fiona said...

So glad that you have benefited so much from the new medication and that you don't have to pay that amount - eek!
Taking medication is hard enough without noise, worrying about cost .. Etc.
And that you have a good husband by your side.
It's good isn't it, to stop and be grateful?

Bungalowgirl said...

Wonderful news for your big girl. It is such a priority to give little kids the chance to grow up as healthy as possible despite a chronic illness. Power to you for mustering up all that gratitude amongst a very sick house! I am feeling gratitude towards the end horizon of the school holidays! melx

Tania said...

That is great news for your girl, Lea. It must be a huge relief to be on the PBS.
Hope that sickness eases soon. It's been through our house the past two weeks too, with all but one of us catching the flu.

Anonymous said...

I don't know why your posts haven't been showing up on my reader, but I'm realising now that I've been missing your posts for ages.

What wonderful news about the needs and neb. What an absolute relief and the cost. I am so happy for you.