Wednesday, March 30, 2011

A time to celebrate......

"The world needs your kind of strength, your passion, your creativity, your heart, your mind, your brilliance................SHINE ON!"

Some things are so worthy of celebration. Keeley turning 8 years old was well and truly one of them. I am a little late in blogging about her birthday, because to be honest, I didn't know what to write. How do I sum up her 8 extraordinary years so far. Then I realised that I don't need to. She is a hero, and that is all I need to say.

Happy birthday Keeley, no one could ever love a daughter and believe in her more deeply than I love and believe in you. xx

Saturday, March 26, 2011

A leap of faith.............

Almost 7 years ago, my baby girl was wheeled into an operating theatre, and 17 gruelling hours later, she emerged, barely clinging onto life, with half a brain. Exhausted, emotionally frazzled, but with some tiny piece of hope held firmly in my heart, I sat beside her bed in the intensive care unit. Her surgeon had just told me that she did not expect Keeley to survive the night. I waited. I willed her to live. I held on to the hope of her not only surviving, but living, enjoying life. Having a seizure free existence. After all, that is why she had just endured a 17 hour procedure to remove half of her brain - seizure freedom. I will never forget the moment, after 3 days, when Keeley finally opened her eyes. I will never forget the heartache when, she began to seize.
Her surgeon had left behind a small remnant of left mesial frontal lobe tissue, as she believed it to be fused to the right hemisphere, and deemed it too dangerous to proceed to remove it. Although Keeley's hemispherectomy had helped to significantly reduce her seizures, she has battled with intractable epilepsy for the past 8 years. No amount of medication, no medication combination, no amount of me hating and cussing seizures, has ever stopped them. For the past 7 years, I have been trying to convince her surgeon, her old neurologist, her new neurologist, her epileptologist to evaluate Keeley to see if she would be a candidate to have this remnant tissue removed. It has been what seemed like the fight of my life! One that seemed to have no end. After Keeley went into status epilepticus just prior to Christmas, and started having a massive amount of seizures on a daily basis, the fight got ugly! We met with her neurosurgeon, after having an MRI, and when we spoke about the subject of surgery again, her response was.......'why bother'!
To cut a very very long story short, I had Keeley's GP refer her to see a surgeon that I found in Sydney. We met with him last week. I was nervous and excited all at the same time. After a long chat with him, he broke the news that almost knocked me to the ground...... He thinks Keeley is a great candidate for surgery. He believes that by removing the remnant tissue, she has an 80% chance of seizure and medication freedom!!!!!!!!!!!!!!!!!!!!!
The plan is.................. Keeley will be admitted to the Royal Children's Hospital in Brisbane on Monday 4 April for prolonged VEEG and SPECT scan. She will be discharged on Thursday or Friday that week. We will come home, wash clothes, take a deep breath, and fly down to Sydney on Sunday April 10 where she will be admitted to Westmead Children's Hospital that afternoon. Monday she will have an MRI and Tuesday April 12 she will undergo removal of the left mesial frontal lobe. She will then wake up, give me a high five, and be seizure free for the rest of her life!
In the words of my beautiful, always there supporting me Mum.........."Shine on Keeley"..............

Tuesday, February 1, 2011

Holding on to hope....

How could anyone possibly look at that perfect angel face and not be blinded by her beauty? How could you look into her eyes and not see a shining light, brighter than the moon in the night sky? How could anyone hear her laughter and not want to dance to the glorious sound of it? How could someone ever give up on her?
In a heartbreaking meeting last week, Keeley's Neurosurgeon, the woman that performed her hemispherectomy, gave up. Keeley's seizures are still clouding her world, and we consulted her Neurosurgeon, for results of a recent MRI scan, with HOPE that Keeley would have options, some kind of a chance at seizure reduction or better still, seizure freedom. Keeley has a small portion of remnant tissue in the left frontal area, that was spared during her hemi, as the surgeon found that there didn't appear to be a corpus callosum in this area, and deemed it too dangerous to proceed, given that Keeley's operation had been going for 17 horrific hours. Her EEG shows interictal patterns in this area when seizures aren't recorded, and her seizure types are characteristic of frontal lobe epilepsy. All of this gave us the smallest bit of hope that maybe this tissue could be removed, and give Keeley a chance at a better life. The Neurosurgeon's response to this suggestion "WHY BOTHER". She went on to say that she believes that Keeley's prognosis is very poor, that she is severely impaired, and that she will not develop or progress any further in her life. If Keeley's seizures aren't life threatening, then there is no point doing any further surgery.
To say I was angry would be the understatement of the year. I was enraged, and more so, absolutely heartbroken. I could not believe that someone would just give up on Keeley like that. That she wouldn't even give her a chance. I could not believe that I had to sit there and try to prove my daughter's worth.
I am not even going to start on all the reasons why we should 'bother' because I don't need to. She is a human being. Of course we should bother.
Along this journey I have found that losing hope is only too easy, holding on to hope, on the other hand, is a much harder thing to do. But we must not ever lose hope. We must never give up. So for now, I am holding HOPE in my heart, and am continuing to search for answers..........

Friday, December 31, 2010

Bringing 2010 to an end......

So, I officially get the title for the world's worst updater of blogs. So much has been happening, and it would really be so much easier to keep track of if I were to keep updating as we went. Anyway, I will attempt to keep you up to speed, trying not to put you to sleep with blabbing on.

First, we'll get the yukkies out of the way. Keeley saw her Endocrinologist a few months back, and she suspects that she is going into early puberty. Say what? She is only 7 years old, and that is just a touch distressing for me to hear this. Breast tissue has already started to grow, along with unwanted hair. The plan for the moment is to monitor Keels for the next 4 months and see what pace it all progresses at. We'll think about the 'what now' if and when it gets to that stage, but basically she may need monthly injections to keep things at bay until she is an appropriate age for puberty.
The return of the dreaded (I almost can't type the word).....seizures..... GAH!!! So a few weeks ago, Keeley, just about out of nowhere, started to have seizures again, after almost 6 months without any. She went from zero to about 200 in just one night. This continued on for a number of days, despite doubling her current dose of medication and ended up with an admission to hospital. She has been started on Frisium, which is a benzodiazepine. Not a drug I ever wanted to see her on again, and one that hopefully she wont stay on. It seems to have helped calm the activity down a little, but she continues to have daily seizures, but now only a handful. Sometimes on this journey it is the little things that become distressing and heartbreaking. Like having to carry around rescue meds with me everywhere I go now. Ditching that little vial of Midazolam from my handbag was so liberating all of those years ago, and to have it back in there just plain sucks. These seizures have rocked her.....she is struggling with sitting up, her posture is very slouchy and she needs much more support. Her head is really lagging to the side, she is drooling alot, and she is finding it difficult to focus her eyes on things. Some days she is much better than others, with a spark in her eyes, others, she is obviously struggling. The medication is also contributing to that. An MRI has been scheduled for mid January, so we just have to wait and see what comes of it all.
On a brighter note, Keeley has been doing some awesome things over the past few months. She has started saying some new words, which is so cool. One of my favourite things she says now is "rock" , especially when she says "I rock" or "rock on"! Such a diva!! Some of her other new words are "up" and "down", "iPod", as well as family names, just about the entire alphabet, and her numbers from 1 to 10. Some of the things she says are hard to make out, for example instead of saying 5 she blows air out and makes a 'f' sound. But all in all, it is so wonderful how much progress she has made with this.
More good news is that a recent bone scan showed a huge improvement in her bone strength. Something that really excited me as it was getting to a stage where she may have needed intervention in the form of bisphosphonates. YUK!
We had a wonderful Christmas, and Keeley was particularly excited as she got all the things she asked iPad, books and a CD! We spent the day with family, eating to much and just being our crazy selves. Today we hit the beach as it was one of the first times we have seen the sun in what feels like forever. The town in which we used to live has flooded this week and we send our love and thoughts out to all of the families that have been affected by this. The town where Daniel stays and works has been evacuated today, so hopefully he will have a job to return to in the new year. We'll just have to wait and see.
So 2010 comes to an end tonight, and we start a new year in the morning, I will be sending some wishes and dreams up to the stars at midnight, in hope for wonderful things for my family and the ones I love in 2011.
"Here's to a bright New Year, and a fond farewell to the old; here's to the things that are yet to come, and the memories that we hold...." CHEERS!

Thursday, November 4, 2010

Inner Peace

I am writing this mostly as a therapeutic exercise for forgive me.

I have arrived at a place of acceptance. I will try and help you understand how I got to this place of acceptance and what I mean when I say that.

Now by saying I am in a place of acceptance, I don't mean that I have accepted that Keeley is a child with special needs. I was at peace with that a long time ago.

What I have always had a problem with is feeling like I haven't done enough for her. I have cheated her out of a proper chance. I haven't given her all of the opportunities she needed. I have failed her. I have been walking around for seven and a half years with what feels like the absolute weight of the world on my shoulders consumed with guilt. Consumed with 'if onlys'. Maybe I should have done more therapy with her. Maybe I should have taken her to a different doctor. Maybe, maybe, maybe, what if, what if, what if.

Because children with HME and children who have had a hemispherectomy, well, they CAN walk, and they CAN talk, and they CAN eat, and they CAN be toilet trained, and they CAN be educated and they CAN live relatively normal lives.

But Keeley doesn't walk. Keeley doesn't move around at all on her own. Keeley doesn't talk. Keeely doesn't eat orally. Keeley has an ileostomy. Keeley is in nappies. Keeley is considerably behind in her school work.

When I look back over the years, Keeley has done countless therapies, speech therapy, feeding therapy, music therapy, physiotherapy, hydrotherapy, occupational therapy, conductive education, neurodevelopmental therapy, rehabilitation therapy, all of which I followed strict programs at home. She has done early intervention in education since 8 months of age. I have made sure that we have purchased her every piece of equipment that I thought might help her, putting ourselves into major financial crisis in the meantime. She has been everywhere and done everything that we have done and then some. I have spent seven and a half years researching, digging, overturning, searching for anything that might help her. I have spent seven and a half years in desperation. Trying to stop feeling that I had failed her.

I have spent seven and a half years loving her more than humanly possible.

When I say I have reached a point of acceptance, it is more like inner peace. I have been trying to rid myself of that sinking feeling, that overwhelming cloud of guilt that has been consuming me for so long now. I am sure it is going to rear it's head from time to time. But for now, I am going to take on this new way of thinking. That I have done everything I could for her to reach her full potential so far.

That doesn't mean that I have given up on Keeley. She is still attending her therapies. She is still getting all of the medical attention that she needs. But I think I have come to the realisation that she is probably not going to achieve the same kind of things that her fellow hemi siblings have achieved. If she does, well then I will jump over the moon, but the reality is, that she probably never will.

I took Keeley to see her new GP a few weeks ago and we were talking about therapies and Keeley and where she is at and I told him that I felt like she didn't get enough therapy and that I felt like 'she missed the boat'. He turned to me and said "Amanda, what if the boat never left? Some conditions are so catastrophic and traumatic that children simply cannot recover from them".

So, Keeley doesn't walk, she doesn't talk, she doesn't eat. What she does do is light up our entire world with the glow that she radiates. She has a personality that most people only dream they could have. She is funny and witty. She is strong, and brave and courageous. She will fight even when she is expected to give up. She is an extraordinary little girl and I would never change her, ever. I'll take her exactly the way she is over walking and talking any day. She overfills my heart with love and I am thankful for every second that I spend with her!

Tuesday, October 12, 2010

We have started a Blog!

We decided to create this blog to keep family and friends up to date with Keeley.  Being the little superstar that she is, we thought we would try and keep her peeps up to speed about what she is up to......!

I don't really know where to start.  This has been a massive year for Keeley and for our family.  A few major things that have happened have been our move to The Sunshine Coast.  It was one of the best things we have ever done, we are only about an hours drive from Keeley's treating hospital now and the services that this region have to offer seem a lot better.  We are back living together as a family - Daniel, Mandy, Keeley and Hazley, which is wonderful for all of us.  Keeley had to have her tonsils and adenoids removed and bilateral grommets inserted.  She recovered well from this and is sleeping and breathing much better. After 6 long years suffering terribly from bowel problems, Keeley had an ileostomy formed a few months ago.  As daunting as it all was at the time, it has made life a lot more comfortable and easy for her.  We are all pretty used to it now, and haven't had too many dramas.

I guess they are the main occurrences for us. Keeley is doing great at the moment, clever, funny, sassy and feisty as always. Hazley is great also, he is such a character and is wise well beyond his years.  He keeps us all entertained and in fits of laughter.  School holidays were a bit of a bore, with some horrible weather.  It rained the entire two weeks and is still raining now.  We visited my sister Loren and her partner Nick up at Boyne Island.  That was a major highlight for us.  We all miss them so much, and it was great to get to spend some time with them.  Hazley and Keeley absolutely adore them, and were really quite sad to leave!!  We are hoping to get to see more of them, when they move down here............HINT HINT!

Okay, so I am rushed for time today, and just wanted to get this whole thing up and running, so check in from time to time and I will try and keep it updated as best as possible!  xx