Monday – terribly sick.
Tuesday – hospital.
Positive for Vancomycin Resistant Enterococcus.
A very nasty bug.
Will need a long course of IV antibiotics to get rid of it.
Wednesday – more of the same (pain,antibiotics, fluids, sleep, sleep, sleep, hydrocortisone and lots of tears)
Thursday – a whole lot better.
Stable, so gate leave for the weekend (yay).
Friday – cannula tissues.
Back to hospital for new cannula.
New cannula inserted.
IV antibiotics recommenced at home
and lots of other stuff (both good and bad) in between.
Let next week be better, please.
Last Thursday afternoon
a film crew came out to our house to interview our family for Starlight.
Earlier in the day, they had recorded two of our favourite Captains and the paed too.
We met three lovely guys
and three wonderful women
and talked about Ivy’s story and her wish.
Actually, Noah talked.
and we spent a large portion of the filming chuckling at his flamboyance.
In the end the guys had to ask us to not let Nowie monopolise the conversation.
The crew were very patient -
even when Mal gave everyone a ten minute monologue on stretch mini coopers and how that was his wish.
I’d like to say that the whole family was well behaved but that would be a lie.
The red sausage dog wore his worst diva behaviour and made all kinds of demands on the poor unsuspecting film crew.
Never trust a red sausage dog.
He didn’t cope well with the new people in the house at all
and when he was put in dog jail for nipping at the director, he protested.
Eventually, AJ (who was non plussed about being on film) took him for a walk so that everyone could get down to business.
They filmed the kids playing
and interviewed all of us together
then the pair
and then Dave and I.
and one that Dave and I have been invited to attend ( insert not so quiet squee here)
and on social media too.
At the end of it all our gorgeous friend Steph told the pair that she needed their autographs because they were now famous
and the cheeky things provided her one
which she graciously accepted.
Ivy and Noah were very chuffed indeed.
It was a great afternoon and a wonderful opportunity
but in the end the most important thing is that it will hopefully help Starlight to raise money
so that other kids like Ivy can experience the magic of a wish.
This morning she is nervous
and her behaviour reflects this.
I am too.
She knows tomorrow is infusion day -
our first without a general anaesthetic.
Our progress has been slow and so we have ended by doing an additional four to our original plan
and it has been good.
The girl has been the happiest I have ever seen her,
without the stress of infusion days
but now we are moving towards our goal of being able to do them at home again
and I am looking forward to that.
What I hope will happen, what I’m wishing for with all of my heart
is that over the last eight weeks, with all of the therapy
and the medical play
and the rest from the anxiety and worry
that we have been able to break that all consuming fight or flight response
and that Ivy will be able to once more use her amazing coping skills (and I mine)
to make that leap into firstly the needles with sedation
and finally without.
We have spent time just holding the butterfly needle and “seeing it for what it is” -
a thin sliver of metal straw and some plastic that will sting for a minute but helps her body to fight
and we have been talking about adrenaline and endorphins;
Her: ” Why, when I breathe, do I feel more relaxed?”
Me: “Because you have endorphins that are released to help you and that stops the adrenaline from making you feel scared”.
Her: “Oh, so the adrenaline is like a mean dog and the endorphins are like a kind person, who pats and strokes him until he feels happy and doesn’t want to bite anymore?”
She is insanely in touch with her own body.
She is also very hard on herself;
“I want it to work. I want to do the needles at home but if in three weeks (four weeks, nine weeks, seven weeks - the numbers change with each conversation)
I can’t relax I want to talk to [the paed] about going back to IVIG”.
As her mother I can’t think of anything worse than having to find IV access every three weeks
or all of the side effects and complications that go along with it
but all I can do is listen and try to advise.
It’s her body, after all and ultimately she will need to learn advocacy for herself
but at 7 1/2, I think I should still be able to guide her.
I tell her everyone understands how this might be scary
and that our awesome play therapist and lovely pain doctor will go as slow as she needs.
Ivy can be determined though and her eyes glaze over whenever I mention it -
I feel like I’m being placated by a tiny pacifist.
Time will tell, I suppose.
For now, we are just going to concentrate on ‘stroking the dog’
and getting through tomorrow.
My mum phoned me a few days ago and asked me if I had quit blogging.
I told her I didn’t know.
For the last three and a bit weeks I’ve been weighing up the pros and cons
but between the two lists,
neither came out in front
and I wanted to be able to write when I felt like I could deal with any negative comments that might be thrown my way.
I wanted some time to grow some thicker skin.
Whether I have or not, I’m not sure.
It’s something that a lot of bloggers go through, it seems – the waxing and waning.
In those three weeks some amazing things have happened -
Mal’s birthday for one,
the girl’s feet have grown for another. In fact, the girl has just grown altogether
and then there’s
catching up with some of our oldest friends,
an interview with ABC Newcastle about the importance of blood donation (but more so, meeting a group of over 80 people committed to donating blood in Ivy’s name),
having an article published on Mamamia for Starlight
and one published in Practical Parenting magazine for the Australian Red Cross Blood Service,
seeing one of my photos (and Ivy’s sweet face) published in some major national magazines for Starlight too
and finally there was this:
which is tomorrow.
You can help by purchasing some merchandise from Myer or Big W (if you’re in Australia) or from any of the volunteers who will be around on the day
or you can make a donation through their website.
Money raised supports them in being able to help sick children Australia wide.
Channel nine have always been very good to Ivy and this was no different.
They seem to pride themselves on rallying for a cause and for us, that includes blood donation and Starlight)
I’m very thankful that they make time for these important organisations.
(Ivy loved being in hair and make-up)
Everyone was so very lovely and helped the small girl (and I) to feel at ease and made her feel as though she was very special indeed.
She especially loved talking to ‘the fashion police’ and the hair stylists
and loved Paula (who blogs here).
Paula was so beautiful with Ivy. It was lovely to see her coming out of her shell because of it.
We were also able to spend some time with the gorgeous Yvette, who has been such a big part of our journey
and who I have had the honour to know for a few years now through blogging and social media.
Mal and she got on very well.
Noah, who was insistent that he needed to be on TV too suddenly became very nervous when he and the other kids were invited onto the set
but he managed to wave to the viewers anyway.
All in all it was a great morning and a wonderful opportunity ( Ivy and Rarfie are both feeling quite famous, right about now)
and there have been many other lovely days in between.
Of course along with all of the good there have been some not so amazing things too -
a sick little girl,
an emergency hospital admission,
a fairly lack lustre recovery.
Worry for one of my girls and a starting of anti anxiety medication for her
and the sadness of losing another much loved relative.
One of Ivy’s special friends fighting for her life in the ICU
and watching her Mum (and my friend) go through hell as she waited and hoped for the very best outcome.
I thought about writing
but the words wouldn’t come
and so I left it
and enjoyed my kids being on school holidays
but the other day,
my mother said the one thing that made sense to me about all of this blogging stuff.
This is a record.
It is documentation of how life has been over the last six and a bit years -
the good, the bad, the psychotic,
the happy, the lonely, the angry,
the grief, the thankfulness, the wonder -
it’s all here
and so I decided to sit behind my screen and write.
Like me or not -
You might think I have the most depressing blog on the internet
or that I am attention seeking (or whatever other unkind thing you can think of )
and that’s okay
because this is what I need to do for me.
This is how I’m getting through life with a large family, including fostering my sister’s two boys,
living with a seriously ill little girl, all of the feelings and emotions that go along with it
and making the most of everything that I am blessed with too
and I want to keep a history of that.
Life is never smooth sailing. It’s full of ups and downs -
as are people’s emotions.
There are not many in this world who haven’t had a bad day
or a few in a row
or maybe had life get the better of them at some stage.
We all have our own stories to tell
and this is mine.