Baby Montanna at 8.5 months old during her stay in the Melbourne Royal Childrens Hospital (April 2005)
Picture: Shazz Brownlaw
Montanna - Almost 9 Month Update!
28th April 2005
Wow what a journey this has been.
It has almost been 6 months since we received the diagnosis that Montanna has SMA and yet it feels like years have passed.
So much has happened in such a short time.
When we were first told the news, we were told what so many others have been told before us , and that is "Sorry there is nothing you can do. Just go home and enjoy the time you have left". This had the effect that it has had and will continue to have on parents, "Bugger this, there must be something that can be done!".
We went off on a cyber bash (Internet Search) and found out as much as we could about the disease as possible. What we discovered was that there were treatment options being used in other countries.
So we went running back to our doctors with what we had found and they quickly dismissed it and said it would be of no benefit to our baby girl.
To cut a long story short for now, how things have changed. There are things we can do for our kids and what the hell, we have nothing to loose. We have been very proactive in Montanna's care and here she is, still with us, and most importantly still smiling. Julie and myself have learnt so much form our angel, things that are very difficult to put into words.
Like things centered around love and what the true meaning of life is really all about! These kids, are so alert and so full of life despite their condition!
Montanna’s care is full on and is basically 24 hours a day.
One of us sleeps in her room so we can hear if she needs suctioning through the night. She has lost most of her capacity to swallow and is fed via a nasal gastric tube.
We are her parents, her nurse, her doctor at times and now we have become her physiotherapist so we can do physio to clear secretions from her lungs.
We are the researchers, supporters and advocates for SMA here in Australia.
We can’t socialize for the chance of catching a cold that would harm Montanna. Montanna sees only a few people and we scrutinize everyone that comes through the door (only be it a few) whether they have a cold and to wash their hands before they touch her so no infections are not passed on to her.
Ross has had to give up work to help maintain a consistent level of care for her. But all of this is worth it when you see smiles beaming from her face. We do it because we love her and eventually she will make the choice whether certain treatment options are for her or not.
Her smile just makes you melt, and you can’t help it but to want to help her. We run a small farm and sometimes it is hard to even get the farm work done.
Though good things continue to happen and we are very excited at the moment both for Montanna and the kids that will follow her as finaly we are working alongside the doctors and exploring possible treatment and care options.Today we got the news that at times we thought we would never hear and that is "YES! we will try the cough assist and we will learn together". This is not just a major break through in Montanna's care options but is great news for SMA as a whole in our country.
The fight against SMA is a global one and without the support and information received from around the world, change here would have been impossible. We are so grateful to the many people that have made this all possible. You know who you are and a very heartfelt thankyou goes out to each and everyone of you.
The other great thing that has come from this is the forming of an online community for SMA in Australia and it has been fantastic to be able to share our stories and information together. It means so much to us knowing we are not facing these things alone here in Australia!
Julie has kept a journal of our journey. One day, as time allows, we hope to have it posted up here on the site.
Ross and Julie Brownlaw - 28th April 2005
www.smaaustralia.com