roll call - Hannah

[Guest guest]

In a message dated 9/4/02 6:10:42 PM Central Daylight Time, GKRBH@...

writes:

> herself to get someone to organise a meeting of all (?) Hannah's

> specialists. That would be a dream come true.

>

>

Hug her neck, this is what needs to happen ! Dr.'s tend to write

parents off as being too over emotional & don't beleive a word that we say.

An outside source like her will make the difference! Hang in there lady, if

you hear a train whistle just run as hard as you can! ;-)

Best,

K.

[Guest guest]

In a message dated 9/4/02 6:10:42 PM Central Daylight Time, GKRBH@...

writes:

> herself to get someone to organise a meeting of all (?) Hannah's

> specialists. That would be a dream come true.

>

>

Hug her neck, this is what needs to happen ! Dr.'s tend to write

parents off as being too over emotional & don't beleive a word that we say.

An outside source like her will make the difference! Hang in there lady, if

you hear a train whistle just run as hard as you can! ;-)

Best,

K.

[Guest guest]

I'm , mother to (13), Ben (10), and Hannah (5yo with PMG). Hannah

has multiple disabilities including CP, uncontrolled seizures, cortical vision

impairment, as well as motor and intellectual delays. She is about 102cm long,

weighs about 15kg and is totally dependent for all things. She has a fantastic

smile and loves best of all to be cuddled by someone, anyone, she doesnt care

who.

One of Hannah's favourite things to do is lay back in our arms while sitting on

our lap, and then we sit her up real fast and she enjoys the fast motion, and

smiles even more as we let her fall back again. It is interesting that if we

start this game, she seems to anticipate the downward movement after the sitting

up and, if we dont let her fall back, she stiffens and pushes back to make sure

it happens. I am so excited at this apparent anticipation, as it is one of only

two things that I recognise that she does with purpose. Most of her behaviour

seems to be instinctive, like the primitive baby actions and reactions.

After a recent breakdown, I have recovered quite well emotionally, but

physically I am stuffed! I think that I was probably always this tired, but was

always living such a hectic life that I never recognised just how exhausted I

really was. Falling apart was, in some ways, a great place to reach, as the

people who need to know (ie- those who can help us through and beyond it) are

now in place and helping us get extra regular respite care. Hannah has been

cared for out of our home for almost 7 weeks, to enable me to get myself

together and to try and rest and recover. The whole family has enjoyed this

Hannah-free period, without the stresses and constraints that her care imposes

upon us. We look forward to having her back next week, but we will have more

regular out of home care, so that we can hopefully prevent the return of the

conditions that caused me to burn out.

I'll include my full signature for once as it says quite a bit about

Hannah.......

- from Melbourne, Australia; mum to Hannah, (5yo; polymicrogyria, variety

of seizure types, ketogenic diet 6/00 to 8/02 which helped seizures, spastic

quad.CP and orthopedic issues that go with it, non-mobile, cortical vision

impairment, possible conductive hearing loss, swallowing and respiratory issues,

non-verbal, global dev. delays, 100% gtube fed by Bard button, and a brilliant

smile)