Archive for April 2008
Courage through sharing.
This post was written as part of the Finding Courage Through Sharing project over at In The Life Of A Child.
Ivy – born at 30 weeks, blistered rash, cow’s milk protein intolerant, lactose intolerant, eczema, nasty reflux, nasty poo, failure to thrive.
Nothing to worry about, nothing to fear. She’s a prem, it’s the medication, it’s just Ivy.
Ivy – middle ear infection, bronchiolitis, otitis media (chronic) with perforations, pneumonia, gastro, asthma, gastro, asthma, gastro, more colds and flu, more ear problems, another chest infection, asthma, eczema, her ears, oh, her ears.
It’s okay, she is small, family history, you expected this. This is our Winter. It’s just Ivy…
Ivy – grommets, infected adenoids, asthma, continuous discharging ear, hospital admissions, Staph, Pseudomonus, gastro, asthma, more gastro. Will it ever end?
The doctor’s tell me it’s just Ivy but I think there is something else. Don’t be silly, she was prem, you have to expect this…
Ivy – Long term antibiotics, EES, Bactrim, Augmentin Duo, Amoxicillin, Flucloxicillin. Nothing works. Ciproxin, hydrogen peroxide, flixotide, prednisone. IV antibiotics.
This is not normal. Could she be immune deficient? Could she have Ectodermal Dysplasia? Like her older sister? The doctors say that her bloods are normal. She is not like Imogen. She is just Ivy.
Ivy – diarrhoea, blood and mucous, huge blisters (bullous). Staph, biopsies, bloods, colonoscopy, endoscopy. Pemphigus, auto immune, weight loss, vomiting, crying, oh the crying. Pain, pain, pain. Too many hospital admissions.
Stop! I can’t cope with the tears and the pain. Hers and mine. There is something, there is. Look harder.
Ivy – more bloods, more doctors, more tests. It is pemphigus, no it’s not, yes it is. Anaemia, bowel problems, more otitis media, more of the same and the pain, the gut wrenching pain.
Listen to me! I am her Mum. Don’t placate me with ‘I don’t know’s’ and ‘she’ll be right’s’. That doesn’t help. Another doctor and another, all the while getting sicker… Do something!
Ivy – gluten, wheat and lactose free diet, iron, prednisone. Things start looking up.
Some bloods have come back and you were right, immune deficient, ectodermal dysplasia, pemphigus, the doctors say. She’s a very interesting case, journal worthy. Yes but Winter is coming and I am scared…
Ivy – Hospital, very ill, septic. Ivy, hang in there, girl, we are getting closer to the proper treatment.
Will her life always be like this? I hope not.
Ivy – Dapsone, bad decision. Methaemoglobinaemia, hospital again, jaundiced, haemolytic anaemia. Sick again. More blisters. An ear that won’t heal.
It feels like we are back to square one. Where to now?
Car by association.
Noah loves cars.
Loves them.
He is, quite simply, a car head.
Like his father – who can identify the type of car at night by the shape of the headlights. (Scary but true).
Noah identifies each and every person by the kind of car they drive and addresses them accordingly…
He doesn’t know the type (yet) but he has named each vehicle and has matched them to their owner, with the tender loving care that only a car head can muster.
Gran’s coming? He’ll see her in “Lola” (the Corolla).
Dad’s going to work “In Roach” (Black Ford somethingsmallandbeetlelike) and he’ll see him later with keys in hand, which are really, Noah’s keys, don’t you know.
Grandma’s up for a visit and she’s here “in Silver” (a silver Toyota Avalon) Consequently, pop also has a “Silver”. (A silver Ford Falcon).
Tracey’s car – “redtruck”
Mary’s car – “busnotmummy’s”
My car’s “name’s Bus“.
His sister’s plastic means of transport? “Pink“, of course.
The name he has coined for his very own red and yellow magnificent piece of plastic vehicular pleasure is “Rocket“.
The other day he discovered that ‘Grampa’ has a motorbike (you have to say it really fast …”merterbike” - you know, like the bike itself) and it is all we have heard about ever since.
“Grampasgotameterbikegrampasgotameterbikegrampasgotameterbike”!!!!!!
When people arrive at the house, most of the kids announce their arrival by name.
Not Noah, he is excited by the arrival of their car.
When he is talking on the phone, he doesn’t farewell the receiver with just a “see you later”, or even a “see you on such and such a day”.
No.
It’s “I’ll see you later in (insert name of car here)”.
Like Pavlov’s dog.
The thought of your car has him salivating.
Yep.
My son is a carhead.
Monday moaning.
I was talking (read email) with a friend last night and she asked me when I was going to start a blog so that I could say all the things I would like to say but can’t on this one.
She said it because so much has gone wrong in the last few days with Ivy’s health and the medical profession sucks bananas out here in the boonies.
I could write a book about all the frustrations and ugh - type moments. I could just go mad and blurt out all kinds of obscenities on this, my family oriented blog…
Instead I am going to think about calm blue oceans and share with you a photo I took yesterday, that I was going to hold onto for the next Weekly Winners but can’t because I love it too much and I have to share.
After that, I am packing up my machete and I am going on a killing spree. **
Australia’s first case of Doctorcide – mother gone mad.
So, for your viewing pleasure and to give the paed a few more minutes head start (I hope he can run) I give you this:
** I am not really going on a spree, my friends. I am just blowing off steam…or am I??? (Insert crazy laughter of choice here)