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.
There are also people surrounding us,
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
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.
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