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MORE GREAT NEWS
NELL IS PREGNANT!!! NELL AND COL ARE HAVING A CHILD AND INDI AND KAHLILLA
ARE GOING TO HAVE A BABY BROTHER OR SISTER - ETA MAY 2008.
September 30 ... Hooray for internet caffs
A rotten night and rough morning with so many yukky
vomits and dry reaching. Kahlila was sad when she awoke in the late morning,
crying for her Mum. Mum was already zooming from home and a quick reassuring
phone call made Lill so happy.
Kahlilla then went on to have such a nice day with her Mum. They even sat up and
watched a DVD… Lill’s first movie in over a week.
There was a some trauma during the weekly change of Kahlilla’s port needle,
but she got through it so bravely.
The other big news was a that Lill did a tiny runny, watery pooh, which is a
comforting indication that her system is intact, connected and working OK.
Now we just need to stop the vomits and start eating.
September 29
The beautiful little kid is better than yesterday, still very weary
but not so sad.
Chronic coughing pain has diminished, not required to hold and squeeze and
hold Lill’s hands any longer.
Another great sign is that Lill is weeing in a potty today whereas over the past week she has been too sore
and weak to get to her feet even momentarily to sit on her potty.
This afternoon, Lill needed a tissue to dry her tears and when asked why so
sad, she replied.... "It's OK, These are happy tears"
Still full of phlegm and doing meaty coughs, with the occasional Golly Goober
still gagging and causing a watery vomit. (Some people refer to the lurgie that
is sometimes coughed up as a golly. Kahlilla has expanded on this theme and she
refers to hers as Golly Goobers)
The doctors are now concerned about the lack of jobbie movements,
so they stopped the morphine and ordered a tummy X Ray which showed
a normal small intestine and no blockages in the bowel. Kahlilla was so
good for the X Ray lady and she even managed a little smile with trembling
lips when the photo was taken.
A 1 hour shower soothed Lill totally as she blissed away under the warm water.
Such simple things bring so much comfort.
Missing Mum greatly, occasionally bursting into unconsolable tears for a little
while. “Why do you miss Mum?” “Because she is the most beautiful lady in the
world”
The big news of today was the emergence of a neutophil or two in Kahlilla’s blood.
Hopefully they will rise in number to several million over the next few days.
September 28
A tough night for Kahlilla with chronic pain in her throat when
coughs and with the occasional lurgie making her gag and vomit if big enough.
She is experiencing hot flushes with her ears, hands and feet getting hot. The preferred
remedy is a face washer soked in chilled water and wrapped around the extremity in question.
Kahlila’s moprhine was decreased again again today and she managed OK.
TPN commenced due to concerns about starvation. TPN is an intravaenous nutrition
that avoids the tummy, and is a bit of a last resort, but hey, we have to keep the kid
alive until her blood is working properly and all her systems are functioning properly once again.
September 27
The doctors are concerned about the persistent fevers, so Kahlilla had an
ultrasound on her heart to see if her heart had an infection. As it turned out, Lilly’s heart is just fine
(although we all already know that)
Kahlilla’s throat is still very sore and her voice is weak and croaky.
Kahlilla and I share a little joke in that when either of us utter the word “but”, for example “But Colin,
I want to do this instead”, I will laugh and giggle and say “ha ha ha … you said “butt” Then Lill
would invariable respond with “Ha ha … you said “butt’ too.”
During a rotten coughing spasm, Kahlilla wanted help to sit up and I said ”I will hold your hands,
but I need you to have strong arms for me” As she struggled to sit and in between the hurtful
coughs, Kahlilla whispered “You said butt”
I was teary and smiling as I laid her back down. It was so touching and hopeful to catch
a glimpse of her wicked little sense of humour. There are a few crappy days yet in store for
Kahlilla, but she is going to be just fine. “”Tee hee… I just said “butt”
September 26
Kahlilla is in survival mode, saving energy and sleeping at every opportunity. The doctors
have reduced her morphine because they are observing unfavourable side effects such as extreme drowsiness, eyes
rolling up and constipation.
We are whispering words in Kahlilla's ear of happy times in the near future. Sunny days with chooks and mice, seas and
sand, friends and family, cosy beds and warm fires. I think Lill gains comfort from this although she eventually asks
you to keep quiet in order for her to sleep.... I think she is on the up.... albeit only slightly.
September 25
The doctors are a little concerned about Kahlilla's continued suffering and
also her complaints of a sore tummy... left side. The dreaded and previously sliced open left side.
Kahlilla is wheeled away to radiography for a chest X Ray and an ultrasound. These tests revealed no pneumonia and no
tummy tumours respectively.
The doctors decided to start Lill on anti fungal medication.... the same one she received
in May this year. This drug can inhibit the body's ability to regulate potassium levels and can be very dangerous...
not the mention the awful tasting medicine that is required to boost potassium for the few weeks after the course of
medication is complete.
One sick child.
September 24
Another increase in morphine as Lill struggles through the day... sad, quiet, tired and
sleeping.
September 23
A horrible night for Kahlilla, who is full of phlegm and crying in pain with every cough. She very
politely asks for her hands to be held and squeezed each time she has a coughing fit. Bless her.
Kahlilla's morphine was doubled today because she is not coping with the pain at all.
September 22
A rough night for Kahlilla, whose throat is getting worse and she has stopped swallowing.
The doctors believe she has a an ulcer which can only be cured by white blood cells and platelets
(which are about 10 days away from returning) We can only love her and be patient and loving, helping
Kahlilla to be as comfortable as possible until this is all over.
When Nell arrived at the hospital in the late morning, Kahlilla collapsed into her arms.
Nell described it all in this SMS message...
"Lill dropped her bundle when I arrived in her room today... She sobbed and sobbed and went through 2
boxes of tissues. The ulcer down her throat is causing her such misery. I insisted on morphine and Kahlilla
is now in a peaceful morph slumber"
Merridy, the kind social worker, gave Kahlilla a loan of her special cuddly dog.
September 21
Kahlilla had a terrible morning, which started when she awoke to find that her mum was
not there. Mum had returned home for a few days rest and Lill was so sad. She cried and pleaded for Mum for
about 3 hours. She was utterly inconsolable.
Kahlilla's temperature is still very high. She should be feeling better after
the past few days of antibiotics..... hmmmmm .... maybe there is more to it this time!
We encouraged Kahlilla to have a shower, where she splashed Colin until he was wet through and
she started to giggle and smile.... the most beautiful and bravest smile ever!!
Poppy and Lill made a seahorse window painting which now resides on the window
September 20
Kahlilla has developed a sore throat and a nasty cough and her
throat hurts when she coughs. She is still managing a smile however.
Poppy bought doughnuts for the nurses, and Kahlilla managed to grab one
before they were all gone!
September 19
A quiet day for Kahlilla who is feeling very sick and very tired.
September 18
Lill's temperature started to rise this morning, so Mum and Poppy journeyed into town for the start of
another 2 weeks of hospital for Kahlilla. She was very fevered by the time they reached emergency.
The doctors tested Kahlilla's blood and found a nasty bacteria, which is a bad thing as it will make her feel poorly, but it is also a
good thing because they can now select an antibiotic that will target the bug.... rather than the broad spectrum blast that
she gets when the bug is unidentified.
September 17
Colin and Indi had a little car crash this morning on the way to school. We were not hurt....
unlike the car
Lill is not impressed about the damage to her precious "SnowFlake"
September 16
Indy and Lil enjoyed riding their bikes at Nan & Pops today.
September 15
Kahlilla is so thrilled to be home after a five day chemo stint as she counted down the sleeps.
We've found new ways of keeping her interested during those last few days in the big house .......
Interior decorating
Growing eyes in the back of her head
Directing the heli ambliance (he he)
Taking up percussion
Playing 'where's poppy?'
Commenting on the playground renovations
Removing the booby sticky BY MYSELF!
Stuck into the port is an odd bent needle and it
takes a fair tug to remove from the hard plastic port !
This is the bravest smile taken immediately after the yucky port needle extraction !
We're outta here!!
September 12
Kahlilla is back in hospital for her 4th round of chemotherapy.
The plan is to undergo 4 cycles of chemo then scan Kahlilla to assess the success. Here's hoping
that this will be her final dose of chemo .... EVER!!!!!.
Your loving thoughts and prayers please everyone.
September 9
A very happy weekend for our little kiddo...
especially at Poppy's surprise birthday party!!!
We found a fairy in Poppy's garden
Zooming in her new electric car
September 6
Guess who can write her own name?????
What a clever girl... the spaghetti sauce is a nice touch
September 5
Great times for Lill this week.... kinder, beach walks with Mum, trapping giant animals etc....
The Koala Hunter
September 2
It was a brilliant weekend for Lill who was so busy doing so many things....
We visited John, the man from across the road with the sunshine in his eyes.
You would all see the sunshine had his eyes been open.
We met up with Lewis and Gareth and Kahlilla was the queen of the monkey bars.
The kids played Hide and Seek and no one could find the koala kid.
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