Olivia's Dream

November 2010
Ok there is no excuse for how long this has taken, even the wonderful ladies
at Power Flower have asked for updates. I think I am trying so hard not to
think about reality that I procrastinate......
As you know Olivia is in kindergarden and she 100 percent loves it! She has
an Educational Assistant who treats Olivia as if she were her own. Today
Olivia could not go to school due to a staffing issue, so I brought her in
myself for the last hour, when we walked in all the kids were yelling and
running to her"Olivia is here" she walks down the hall and everyone knows
her name, of course after Wed night I should not be shocked, the school
organized a dinner benefit to help us with living expenses and travel costs,
we were amazed to find close to 500 people showed up to lend their support
and they raised a whopping 7500.00$ for us. I can't tell you how much came
off my shoulders when I heard that and that is not taking into account the
donations of food. I don't know if we are the only ones but HST is really
making it hard. I wanted to give a huge Thank You to BALLYMOTE AUTO fo their
on going support in not only keeping our cars running and safe, but
always thinking of us, I am not sure if I mentioned this before but I was
trying to put a square peg in a round hole "translation trying to fit
Olivia's wheel chair into my car" it did not go well and I ruptured three
discs in my back, go figure I lose 160lbs and now my back is bothersome, so
Dave and Chris at Ballymote had a customer that mentioned he was getting rid
of his van that still had lots of life in it, when he found out that the
customer was going to donate it he told them about us and Olivia and they
very kindly gave it to us, I have to tell you that I love the van why? Well
not only does Olivia's chair fit in it I can now seperate all the kids so
there is no fighting "LOVE IT!!!!" The support that we have received from
our community has left us speachless in so many situations and with each
surprise they spring on us they tell us there is more. I was worried about
Christmas but I think we will be ok. The generosity from the fundraiser
provided the opportunity to replace our fridge and stove that were ok but
getting very old, last year when the washer and dryer bi the dust it was
very hard and stressful figuring out where the $ would come from to replace
them, I kept worrying this would happen again and its not like you can wait
a week to buy a fridge when your dies so another stress from my shoulders
along with the mistake from hydro.
I wish I could update everyone on Olivia with happy great news but it isn't
reality. Olivia's condition has deteriated a lot over the past few months
with her now having what they think is drop seizures sometimes 3 or 4 times
a day, she has an increase in pain and does require higher doses of pain
meds and most disturbing is Olivia's emotions, because where tge new tumour
sits in an area of the brain called the thalamus it greatly effects her
emotions and unfortunately we see Oluvua have way more of bouts where she is
sad or mad at her self and this leads to her hitting herself or oters biting
etc, and the hardest is her asking us why she is so sad etc. I want everyone
to know and believe 100% that miracles happen. Remember her first round she
kicked cancers butt and from the doctors telling us she would need a
respirator for at least 2 weeks and would be in ICU for weeks well if you
recall she spent 1 count them 1 night in ICU abd was never on a
ventilator. One last thing I want everyone to know that her original tumour
that doctors had a goal of shrinking to a size that did not cause her
issues! Well that original tumour is 100 percent gone and all that remained
was the surgical field.
I have to go but please continue to pray for Olivia and all of us as that
means so much to me, to us.

Kim

For four years I have wondered who reads my ramblings. PowerFlower Web Design has a counter on the page and we have 13927 hits! I would love to hear from all those people, I would like ideas on what you want to see on her site. I often used the site to vent, in the middle of the night when I feel alone (nights are the worst) I will write. I wonder if it would be possible for me to write a blog on the site without having to bug the great ladies at Power Flower. There are some new pics coming of Olivia soon. Olivia had a rough week at school the physio therapist and OT felt she needed to be left in her wheelchair on her school bus in case of an accident or if she were to have a seizure. She has her chair for the few hours at school she is on her feeding tube and when she is tired or having a bad day of balance and falling down or if she has a seizure she gets tired, so just like any other 5 year old she wants out to play. Olivia can't run on hard surfaces (we have to protect her head from being injured in the area of her original tumor as she has a bit of bone missing there and now of course we have the new tumor? To watch, she gets down right very angry and sad if she can't run. She is a smart cookie when trying to get something she wants, like the other day at school the nurse asked her when she goes on her feed at home and she said she doesn't I guess she was hoping the nurse would say "well if you don't have it at home, then no need here lol. There are times where I think maybe we can get her off that feed, the problem though is not that she won't eat at all! She loves chocolate and bacon and eggs, the problem is that if she eats to much of enough nutrition. I know she won't need it forever, we are told that it is messages to or from the brain get jumbled up, of course beeing on feed gives her the upper hand if she re quires chemo again we won't have to worry about her not eating because of mouth sores and other things such as the nausea you often feel following chemo knocks you appetite away sow this would be a benefit in keeping her weight up. I feel guilty sometimes when I know she needs to be on her feed all night and wakes with a nightmare and wants to sleep with me, sometimes I will leave her off her feed but sometimes all the sleepless nights catch up to you. Some people have what is called a g tube and that is a feeding tube that simply goes into the stomach and a small balloon is inflated with water to keep it in place, to change it you let the water out deflating the balloon and remove to change etc. Olivia has a GJ tube her tube goes into her Jeudenum (her bowel) and unlike the stomach with can take a can of feed in only a few minutes, but the GJ goes into a small area of the Bowel, and although if you were to take a scalpel and cut your bowel it would not hurt but expand your bowel and it can be very painful, that's why when you have gas you get such bad pains your bowel or intestines are being inflated and it is causing great pain. So instead of 500 ml over 45 min it is instead 7o mls over an hour. We don't have a nurse at home any longer and although it can get very tiring it is easier on the family as a unit, I am hoping that CCAC will consider letting me have someone once a week for 3 hours to do laundry or clean the house. I think the state of the house bothers me because I used to enjoy cleaning and rearranging rooms redecoratedding etc, now there is always things everywhere and no energy to do anything about it.

This is an exciting bit. I contacted Medix school to see if they had grants or anything similar to help pay for courses, they don't however they were touched by Our story and offered me a course. I have been wanting to take Ohip billing and it won't be long and I will be taking the course on line at no charge. I am very excited. It is uncomfortable to be in my shoes and know that when she is all better I won't have a job to go back to because I don't have up to date skills. It will help keep my mind busy to.

Well to bed
Ask me how you can support Information In Hand a resource book for families with a medically fragile child.

September 17th 2010
I keep wishing that I could say it's all a mistake and that Olivia is fine,
and that my sweet baby daughter Olivia does not have a brain tumour.... but
it would be a lie..... The truth is we need your help, we need everyone's
help. We have to take Olivia to the hospital in Toronto she is my baby and
she can't die! She won't die! I need to do all I can to prevent that!
So I am asking for your help, begging for your help.
The Last time we worked so hard holding various fundraisers etc, while
Olivia was just a baby and now I can only say that I believe and know that
by continuing the fight, she is going to be here a long time..... but then I
am so scared to not spend every minute I can with Olivia.... We need people
to think of different fundraisers and hold them for us. There is no room for
pride, in return I promise to continue to work on the resource book for
other families who are forced to deal with such tragic sad scary events in
their lives such as a sick, or terminally ill child.
If you have ideas on how to help us or how to execute a plan to help us,
please email me and I will ask our good friends at Power Flower Web Design
to post it. and I know and pray others will step up to help.
Thank you from the bottom of our hearts.
And we promise that when Olivia pulls through, grows up, as all children
should be able to do and Olivia gets to experience the joy that all little
girls dream of...... walking down the aisle on the arm of her daddy, and
getting married - you are all invited to share in that special mile stone of
her life......