Showing posts with label love. Show all posts
Showing posts with label love. Show all posts

Wednesday, October 8, 2008

Dr's appointments, specialists, waiting, stressing, here we go again..


So.

Millie has had two seizures in the last couple of months. The last one, last week, she fell off her chair face first onto the ground.
That was pretty scary, she bit a chunk out of her tongue poor mite.
Both were while she was sick but that brings the total up to around 11 seizures in about 3 years. Too many for them to just say febrile convulsions with a swish of their hands.

Sigh...

We have been referred back to Dr Antony (Top pediatric neurologist) who she saw for her ptosis, have to have another EEG done with another Dr in Lindfield, a metabolic urine screen to rule out any other weirdo nasty sydndromes and then hopefully, hopefully we will be done with Drs.

I am praying in a way that they say she has Epilepsy because if so, we have a diagnosis and its done.
Im still super worried and cant help imagining all sorts of scary scenarios. Her pupil sizes have been quite differant of late and Im sure some Dr at some stage said thats to do with her ptosis but I am still so paranoid its giving me stomach ulcers.

We are all almost over this dreaded bott that seems to have taken us all out for the count. Millie and I still have a pack a day cough each which is driving everyone crazy. Thanks very much pilgrims, please keep your religious fervour and consumption away from my family and I please?

Thankyou.

Sunday, September 28, 2008

When life kicks you in the nuts....

This is what gets me through..





We had our photos from Luisa back today. Just in time to remind me about all that is good in the world.

I feel for those that do not have a good relationship with their families, it is the most important thing in my life and I am very blessed to have great kids and husband, awesome parents and extended family.

Hug your kids tight and kiss them until they squeak, they wont be little for long.

Sunday, March 9, 2008

Putting things in perspective...

I read a blog today that ripped my heart open

The thought of something happening to your child, your flesh and blood, the baby that grew in your womb and gave birth to, is so frightening it can make you physically ill.

As I read the story of this man and his fight to save his daughter, my chest felt as if it was in a vice, my hands started to shake and sobs came from deep inside. So deep I thought I had forgotten them.

It has been quite a while since we had the all clear on Millie.

I remember the Dr coming out to see me still in his gown after they had given her an MRI to check for tumours. I was sitting on a spare chair in the reception of the surgical ward while I waited to see her in recovery (she had had an general anaesthetic) and he casually told me they would have to wait for a complete study but it looked to be all clear. I think my gutteral moan scared him. It was a release of tension that had gripped me for so long. I felt as though I had taken my first breath in over a year.

Lumbur punctures, EEG's, ultrasounds, MRI's, catheters, canulas, beeping drips full of saline and antibiotics...These are the sights and sounds of a parent that lays awake in a fold out bed next to their softly snoring child, praying desperatly to a god they dont believe in for something, someone to make it all right.
The despair and helplessness is overwhelming. As a parent, it is your duty to protect your child. When they are ill, you should be able to administer a pill, a potion, an incantation and make it right. The anger when you cannot almost consumes you.

I am still angry. Angry that I lost time with my daughter, that she had to got though so much, her little body poked and prodded. Angry that I bore the stress and knowledge while my husbands way of coping was to bury his head in the sand. Angry that I was angry at HER for being ill.

We are so so so lucky, the suspected neuroblastoma turned out to be nothing more than a congenital ptosis and some (many) febrile convulsions.

I have a friend whose child has a life threatening condition and I dont know how she copes day in day out. She is a marvel and I look up to her and admire her more than anyone I know.

It has been almost a year since Millies last seizure, every month that goes past I am thankful and when we hit that milestone I will, for some reason, feel like we can finally put this nightmare behind us.

I dont pray, I dont believe, but I want to lay down on the warm earth with my arms spread and thank the universe for Millies continuing good health and send healing energy To Michael Laws and Lucy.

Please (insert preferred diety here) cure this wee sprite, this tiny scrap of all that is good in this world. Let her parents have the good news and do the gutteral moan and freak out her doctor.

Please?