Posts Tagged ‘growth supression due to illness’
We were released from the hospital today.
Ivy was well enough but we left without a plan.
I was feeling kind of miserable about it all,
knowing that we would be back in a few weeks unwell again, with nothing changed.
I’d packed up and was about to take the girl home
until we were given a last minute message to wait.
The endocrinologist wanted to see Ivy.
I sat and wondered why,
I tried not to let my mind race too fast.
I could waffle on for a few more paragraphs but I’m so excited
I want to shout it from the roof tops.
Ivy was approved for the growth hormone!
(she will have the chance to grow, it will help her bone density – which is poor,
it will hopefully take the strain from her bones and her heart and with any luck at all it will help her immune system too.)
She’ll start in about two weeks time, we’re told.
It’s been such a long wait (almost two and a half years) and to tell you the truth, I had all but given up hope
now I am just so thankful.
I don’t know many of the details yet,
but I am so, so amazed
and full of hope again.
Proof that sometimes something good comes out of all the bad.
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 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 -
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 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
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.