Posts Tagged ‘prednisone’
The seedling.
I’ve been looking through some photos.
Some of when the pair were two
and then three.
I think it’s about then that I start to see the differences in height.
For a while there, Ivy is just a tiny bit taller than Noah
and then suddenly she is not.
It’s okay in preschool because Ivy just doesn’t feel that she is any different
but now it’s obvious.
It’s this photo that makes my heart break:
Ivy has been sad these last weeks gone -
the incoming kindy kids for 2012 are all taller than her,
Noah graduating from his booster into a normal seat, as he pushes through the RTA restrictions
while she still fits snugly in her booster
and even still, into her baby seat.
It’s not fair.
She doesn’t like this.
She doesn’t want to be tiny
or little
or cute any more.
That was okay before all of her peers started to tower over her
but it’s not now.
It’s just not.
I’ve wiped her eyes and stroked her hair
and pulled out all of my best deflecting skills.
Used all the ‘good things come in small packages’ lines that I can.
I’ve talked openly to her about her height
and why she is now 27cms smaller than her brother -
the illness,
the medicine
but still, she is feeling it.
Last night she mentions to me that she has worn her favourite rabbit PJs since she was three
and I know she’s right – Christmas, 2008 to be precise.
I’m not sure how to help her anymore.
I can tell her she is as tall as the tallest building in spirit.
I can encourage her growth with exercise and sunlight.
I can position her in photos, so she seems taller somehow
and give her tools (both emotional and physical) to deal with her height
but in the end I can’t give her what she really wants.
I can’t make her grow.
I can’t give her height
and the two things that may make a difference -
she can’t have those either.
There will be no cessation of prednisone
and there will be no growth hormone – at least not under our current doctor.
It’s not everything, I hear you say.
I should concentrate on the positive -
she’s graduated kindy,
she has a nice group of friends
and she is headstrong
and beautiful
and determined to make the most of this life.
She has so many other issues, why worry about her growth?
There are oodles of physical reasons that I could give you -
how there is additional strain on her already osteopenic bones
and on her heart
and how it will contribute to her dental issues.
How growth hormone not only helps with the obvious but will help with her immune system
and her bone density too
but really
it’s big for me because it’s big for her.
When she’s hurting I want to fix it
and now I need to find a way.
If the paediatric endocrinologist up here won’t help then surely there must be another somewhere,
who will do the paper work.
There must be a doctor who is willing to push the boundaries and apply for the growth hormone, even if it is denied first time around;
at least take that chance
and so that’s my New Year’s goal -
to find someone who will do just that,
to find someone to help my seedling to grow.
She deserves to be as big as her spirit.
Things I know.
Some days I think I know a lot.
Others, not so much.
I know, after almost five years of blogging, I still don’t know a whole lot
and that I feel lost most days, navigating the internet.
I’m not sure if I will ever understand it.
I know I become frustrated with social media some days
and with blogging.
I know some days I feel like packing it in – I never do
and that this week I have been wandering the blogosphere looking for people who are like me.
I’m not sure what I’m looking for exactly
but I do know that I like playing along with Shae’s Things I know meme.
So, here they are – the things I know this week:
I know that small boys and prednisone can make for a very… interesting week.
Prednisone causes my colourful, enthusiastic boy to be a hundred times more colourful and a thousand times more enthusiastic.
I know that if I take him into a meeting with people we have never met before,
I should expect that he will be loud
and bring with him his best attention seeking behaviour.
I know even electronic i-things will not be enough to stem his prednisone induced over zealousness
and that even whispering, when he is on that hateful steroid, is loud, very loud.
I know that I don’t like asthma but prednisone is very effective in treating it.
It also keeps blisters away from the small girl
and I know that I am thankful for the Pred too.
I can loathe something and love it at the same time.
I know that even two days without prednisone, after she has been been on it for over three years
can have dire consequences
and that I will be very grateful when the paed (who has had a bad week himself)
faxes a new script through.
I know I am grateful for new friends and old.
I love that I have found two very special friends, who also have daughters with immune deficiency.
I know I met one of them at the above meeting
and I am making it my business to travel up North soon so I can meet the other.
If you see a big white bus, heading that way,
with a stick family spanning the whole of the right side
you’ll know where we are going.
I love that I can plan “doctorcide” and that friends will offer to send extra weapons
help with the grave digging
and offer to provide an alibi.
I know that they will make me laugh and forget my frustrations for a while.
I hope you all know I’m only joking
and that I’m blowing off steam
and that I really am thankful for Ivy’s medical team.
I know that I went to my first “ballet for adults” class on Wednesday
and that my calf muscles, stomach muscles (who knew I still had them?) and my thighs did not thank me the following day
but that I loved every minute of it and I will be going back next week.
I know I think my Mum is amazing for coming with me.
I also know that Ivy is a better dancer at five than I ever was, despite years of training.
I know that that was the first thing achieved on my 40 before 40 list !
My second thing was picking up the phone and dialling out – twice!
I know I still have a long way to go to get over the phone phobia that has plagued me for over seven years
but I’m working on it.
I know one of my friends is doing it tough right now
and that my heart is aching for her.
I know that I want to link you to her blog.
I know she has helped me through some of my most terrible days
and that I want to help her too.
I want to be there for her, I’m just not sure how.
I know that Ivy is going to her first birthday party this weekend and I am both happy and scared for her.
I wonder if I will ever just be able to celebrate her gains without worrying about the what ifs.
I know that, after consulting with the twitterati (and talking to the party mum)
I am
a) going to the party too
and
b) providing a parcel of food that Ivy can eat.
I know I feel old because I’ve not done the whole birthday party scene for kindy kids in forever
and I have no idea what the done thing is, these days.
I know that Noah was sad he wasn’t invited but
as with our first set of twins
he will get to have a fun outing with Daddy
and Ivy has promised her party bag to him.
I know that not being invited to the same party as your sibling
is one of the hardest things about being a twin
and about having them.
I know that the twin bond is strong and amazing.
I know Ivy has celebrated the normal this week,
which is nice because her health has been floundering.
She lost her first tooth,
which is kind of a big deal
because we were unsure if she would lose any or if she had any big girl teeth at all.
I know that I love this photo of my three big girls
and despite their face pulling and wiggling I was lucky to have caught an essence of their love for each other.
I know I need to take some photos of the big boys now
but that I probably won’t have enough money to bribe the almost fifteen year old teenager into the picture
and finally
I know it’s Father’s Day this weekend
and that I will be forced into Nerf gun wars in secluded areas of the National Park
but that I am okay with that because Dave loves it and I love celebrating him.
He’s a great Dad.
What things do you know this week?
Moon face.
I’ve had a few comments lately.
Especially after the last photos of Ivy were placed on the blog.
Concerns for Ivy’s weight and for her appearance
remarks about her double chin and her little body straining against her clothes
and they sting.
They hurt.
There are also people surrounding us,
who jeer.
People who can only see a ‘fat little pudding’.
People who don’t know,
or don’t care to.
I’ve had suggestions of diet change
and that I am feeding her too much.
That she is just simply fat.
Sage advice on making her exercise more often
and now I find that there are kids at school teasing my girl too.
I want to set the record straight.
I want them all to stop.
I want them to really look,
look properly at my chronically ill but devastatingly beautiful little girl.
I want them to see how painful this is for her
to hear the whisperings
to see others point and stare.
On top of everything else.
She knows she looks different.
She asks why.
It’s not right.
Ivy weighs 20 kilos.
She is 5 years old
but she is only 95 cm tall.
She is on 15 mg of prednisone a day.
That’s quite alot for a little girl and she has maintained that dose for almost three years.
When she is sick, her dose is doubled, often tripled
and she is often put on intravenous hydrocortisone too.
Prednisone has many side effects.
One of which is fluid retention and what looks to be rapid weight gain.
Another is growth suppression.
Another is a condition known as Moon Face.
This is where the face becomes noticeably round and loses its definition because of fluid retention in the facial tissue.
These are all side effects that Ivy has,
along with muscle weakness, decreased bone density, bleeding from her stomach and mood swings.
It’s hard for a little one to understand why her parents would consent to a medication that disfigures her once whispy little body.
It’s hard for me to wrap my head around it.
Without the prednisone though, Ivy blisters
and that is way more horrible than anything else.
It’s a case of the medication side effects being the lesser of two evils.
We have not set out to ‘make her fat’.
We would never want this for our child.
She dances once a week, when she is not in the hospital
and runs with the other kids when she can
but because of illness she is often tired and has little stamina.
She is on a gluten and lactose free diet and we try to keep her diet low in salt and sugar too.
We were told to encourage a diet higher in protein than a normal child’s diet
because this helps with food cravings and also prevents muscle wasting.
Ivy prefers fruit and vegetables to breads and meats
and doesn’t eat alot of junk.
When all is said and done
she is just a little girl
beautiful
emotional
and human
trying to make the most of what she has been given.
She shouldn’t need to worry about appearance too
because people are ignorant
and don’t take the time to stop and think.
Comments are closed on this one, guys.
Sorry.
Updates and things.
Eggbert survived.
Thanks to Badness Jones, who gave us the lowdown on previous egg vehicular success, Maddy’s ovular friend lived to see another day.
In fact, several days
until Sunday, when our fridge died
and so did the eggman.
He stunk out the whole kitchen
or perhaps the stench was actuallycoming from under and behind the frigidaire
as it protested to almost four years of dust and other disgusting paraphenalia that had collected there.
I know
gross.
I have my excuses and I’m sticking to them.
Doesn’t matter,
the whole area and the fridge have now been scrubbed down in anticipation of the fridge fix it guy,
he turned up
eventually.
He told us how to stop our dogs barking and how to thwart their negative behaviour
oh
and also that our fridge is stuffed.
We had been living out of eskies for three days already and today had to turf hundreds of dollars worth of spoiled food
but
who cares about that?
We can have an emergency replacement fridge, while ours makes the trek up to Brisbane.
No promises were made
but the fridge fix it guy (who was really very nice)
said it would probably be another 48 hours
at least.
+++
In other news;
I handed over two gift certificates for photography sessions (by me) as a donation for prizes in the Preschool Christmas raffle
and made myself sick with fear in the process.
Oh yes, I did.
There is no turning back now.
While all this was going on, David and I made an executive decision to spend our dwindling funds on a small bar fridge to get us through until replacement fridge day.
He made a dash across town and when he returned, we discovered that the baby fridge
was more like a concertina fridge.
Seems, it had been dropped from the palette and quietly sold to us, great hulking dents and all.
Of course, we can return it but by the time Dave arrived home, the white goods store was closed.
So, much like many of the appliances in the house, in the boonies (and like some of the human content)
it is broken.
+++
Speaking of which,
the girl is sick.
No surprises there.
She has been up and down all week and missed preschool today.
It’s her ear, yes
and we have gotten ourselves into a bad cycle of blisters.
We pushed her Prednisone up to full dose, to no avail,
the blisters just kept coming and they were becoming deep
so we had to double it.
At the moment we are reducing again because we all know that Prednisone is not good for the little girl.
We have been lounge lizards for much of the week so far.
IVIG is on Monday, so we are hanging in there
just.
+++
I’m hoping she will be well enough to go into the high school tomorrow
because
Maddy is getting a Principal’s award!
I’m not quite sure what that is but it sounds impressive.