Sunday, March 8, 2015

Sleep Optional...

I don't know how this kid does it - survive off limited and broken sleep.  We've gone through many stages of sleep with Lyla (like most parents) she was an amazing sleeper as a baby, thanks to co-sleeping, but as she got older her sleep became worse and bedtime was a nightmare, to say the least, and Lyla always ended up in our bed because it was just easier, and it meant everyone got a good nights sleep.  So just before Lyla's 2nd birthday we moved back to our house and transitioned her to her own bed in her own room (prior to this we were living in 1 bedroom at Dan's parent's house).  At least Dan could get some sleep, seeing as he was the one getting up for work at the crack of dawn.  For a while she was ok, then she was becoming worse and worse and I was back and forth all night with Lyla trying to settle her, reposition her, feed her, just work out what was wrong and why my child was waking 10++ times a night, that's if I could get her to fall asleep in the first place.  Turned out it was more than likely due to her very severe central sleep apnoea that was causing her to have very limited sleep, so when Lyla started using the BiPAP machine last May, it was like we had a new child.  It wasn't a fight to get her to fall asleep, once I put her to bed she would stay asleep, she would sleep all night (!!) and she woke up in the morning bright and chirpy.  This lasted a number of months before things slowly regressed back to the point where as of a few months ago it was (and still is) as bad as it was before we started the BiPAP.

6 times I was up last night just between 3:30-4:45am, plus the multiple times I was up before this.  Every single time Lyla went back to "sleep" I would sneak away get comfy in bed and close my eyes and before I knew it she would start grunting and groaning, which increases in volume, then quickly turning into hysterical crying if I'm not there in time, all while going up what feels like 10° in temperature as she starts sweating like she's in the middle of the desert.  A couple of times I didn't even get out of the room before the moaning began, she obviously sleeps with one ear open as she could clearly hear my breath get quieter as I tried to sneak away.  It's the same every night.  Sometimes she somewhat wakes up and will grind her teeth for hours at a time, of course while grunting and groaning just so she can be sure I can hear her and won't sleep.

I'm exhausted and frustrated.  Each trip I navigate the hallway, I don't even bother opening my eyes, mainly so I can get a few seconds of extra 'sleep', but I also don't have the energy to.  I know exactly how many steps I need to take to avoid walking into the turn in the hallway, Dan's soccer bag, the hall table, the door frames, I also manage to escape Dan's obstacle course he makes for me each night along my side of the bed with his shoes and work clothes.  I find myself falling asleep while sitting up in Lyla's cot, or kneeling on the floor, or even just curled up in her cot with her.  But yet, despite the very limited deep sleep Lyla would actually be getting, if any at all, she's still functioning like she's getting 12 hours of solid blissful sleep, not like she was without the BiPAP where she would struggle to stay awake.  She has NO naps during the day and generally doesn't fall asleep until around 10-11pm at night.  Yet here I am with my eyes bugging out of my head, needing to have a lay down at any chance I can get, even this morning after giving up on the millionth trip back to her room I brought Lyla into our bed and soon enough she was wide awake ready to start the day "mmm mmm mmm-ing" in my ear trying to wake me up, when that didn't work she decided an hour of coughing her lungs up would be a better chance.

I'm really excited to add a newborn to the mix.  Who needs sleep, right?

Saturday, December 6, 2014


There are millions of moments a person can experience that will change their life forever; I think the positive pregnancy test with Lyla was a big life changer for me.  No longer would I be caring for myself, but I would now be caring for another human being; which apparently started a few weeks before I even knew.  The next life changer was the moment Lyla was born, there was my responsibility, this person I created.  I grew this.  I made this.  This was a baby, my baby, and I changed from a 23 year old, carefree, responsibility-less woman, into a mother who like most would do ANYTHING to provide, protect, care and nourish my child.  No matter what.

But in that same moment all those dreams I had changed, just like that.  Of course the providing and protecting, etc. etc. was all going to be the same, but in that moment, and the following days, weeks, months and even years, I changed.  To be honest, I hardly even remember the person I used to be.  I don't know if that's a bad thing, or a good thing, or maybe my brain is now just mush I honestly struggle to remember that far back.  But I believe I've changed in good ways since having Lyla and learning of her disability; like I feel I am more "knowledgeable" in most things medical, I'm more patient and I'm stronger as a person.  However, I feel as though I'm a lot more boring than before, because lets be honest, my interest in all things medical doesn't keep a conversation going amongst friends who don't relate.
But I am now used to the newer me, the me that I've been for the last 3 years.  So sorry if I now bore you, but these kind of things can happen when you experience those significant life changes.

Another life changing moment happened more recently, specifically on Wednesday October 22nd, 2014.  You know when life starts to go pretty smoothly, you've made some plans, you've got a few events coming up you look forward to.  Life's pretty good.  You and your family are happy; myself, my husband, our daughter and our dog, just the 4 of us.

Then, there's that curveball life decides to throw you...
Yep, that life changing moment. 

You know that curveball was coming; you saw and ignored the signs, hoping if you played dumb it would bypass you.  Apparently life doesn't work like that.  I built up the courage to tell the innocent bystander, though he was to blame, he went into shock.  My mind went in to overdrive.  We didn't want another baby, well definitely not right now.  How was I going to keep up with all of Lyla's appointments?  How was I going to get around with 2 kids, one who was in a specialised pram?  How am I going to care for 2 babies, and yes BABIES, even though one of them is 3 years old, technically she is still like a baby.  Then the biggest mind f*ck... 
What if this baby is just like Lyla? 

It's been a number of weeks since we found out, it's also been a number of weeks since I wrote the above, the worry is still there, but it has definitely been overshadowed by excitement.  All of Lyla's doctors and specialists knew before our family and friends, because that's what happens when medical professionals know more about your personal life than most.  I've recently had my first antenatal appointment at the Women's and Children's Hospital, because it was felt I needed a more specialised care, because of Lyla, involving extra scans and a possible MRI.  However, I'm hoping for a transfer to my local and preferred hospital soon though, because I don't particularly want specialised care, I want normal care with normal midwives.

So I have no idea what the future holds, I do know it will be crazy, but I do believe this unplanned, unexpected, and scary news is most definitely a good thing for us all.

What ever will be, will be.

Wednesday, July 2, 2014

Most Days Of A Special Needs Mum...

Most days are busy.  We always have an appointment, whether it be physiotherapy, occupational therapy, speech pathology, conductive education, or a hospital appointment.  We are always driving back and forth.  Sometimes I sit in a waiting room for hours waiting for a 10 minute appointment.  And sometimes I feel as though all those hours and hours of therapies are pointless if Lyla does nothing but cry.    

Most Every day involves calming down my child.  It happens numerous times a day and is caused by a variety of triggers - a phone is ringing, someone is touching her, her back is sore from pressure, it's too hot, something has scared her...  I am trying to get to her, hold her to tell her it's ok, but her cries are getting louder and louder, the breaths are getting slower and slower, her muscles are getting tighter and tighter, her skin in getting duskier and duskier, and then she stops, sometimes passing out for a second, but always managing to come back around.

Most days I get sympathetic smiles and looks from passers by.  They can tell Lyla is disabled and they look at me to say 'I'm sorry', or I get a comment like 'She is cute, does she have cerebral palsy?', very rarely people ask questions to get to know LYLA - her name, her age, her favourite toy...  Or I get that worrying, scared look if the above meltdown happens whilst out in public.

Most days I think about Lyla's death.  Is it going to be sudden, is she going to get sick, are we going to have to put in to effect our resuscitation plan?  Am I really understanding and prepared for the possibility? 

The answer is no.  Always, no.

Most days I think about my own death - what would happen to Lyla if she outlived us?  Who would I trust to care for her the way I want her to be cared for?

Most days I wonder what old friends are doing.  Not the ones I still have contact with, occasionally, I mean the ones I had known for years, the ones who just suddenly fell off the face of the earth when I had a child. A child, or a child with a disability?  I'm not sure.  Do they think of me, of us?  Do they secretly stalk us through social media?  Would they attend Lyla's funeral to make it look like they cared? 

Most days I think about my new friends, the friends I never thought I would ever need to meet, but the friends I really do need, the ones who go though what I go through everyday.  The ones I know in real life from this journey travelled, from the various therapies I go to, the ones I meet in the shopping centre, the ones I only talk to online.  My support group.  They are the ones I go to when I need help, to get everything off my chest and I know they would never judge because they 'get it'.

Most days are trial and error, trying to decipher those tiny signs Lyla shows, hoping I've got them right.  Trying to understand what she wants, what makes her happy and what doesn't, trying to be on the same page, trying to do my best to help her.

Most days I learn.  Try to learn sign language, trying to learn about Lyla, trying to learn about disability support, trying to learn what the therapists tell me, trying to learn what the doctors tell me, trying to learn medical terms, medical facts, medical research, medical conditions.

Most days I teach.  I teach the therapists those tiny signs Lyla tries to make, the ones they ask me what they should be looking out for, the ones I then look at them thinking 'I hope I got that right, because really, I am as clueless as you'. 

Most Our free days we spend at the shopping centre.  I need to get out of the house, to get away from the therapies, to get away from the housework, to get away from the quietness of the house.  I need to go somewhere I do not need to think about anything, I can just walk around with Lyla looking at things and have a coffee.

Most days I find an excuse to have a coffee date.

Most days I wonder what my life would be is Lyla was your 'typical' child.  Would I be working?  Would we be financially better off?  Would we have other children?  Would I still have my old friends?   

Most days I forget.  I forget to place orders for Lyla's medical and food supplies, I forget about appointments, I forget to message back friends, I forget to return calls, I forget what I did yesterday, I forget to pay months and months worth of overdue hospital invoices, I forget what I am meant to do next, I forget what skills Lyla and I are meant to work on that week, I forget to bring the washing in before it rains, I forget when she did something amazing that I need to tell someone about, I forget my pile of questions I have stored in my brain for our doctor appointments.

Most days my house looks like a bomb site.  I don't have time to wash the dishes before we rush out of the door in the morning to make that appointment.  I have a pile of washing waiting to be folded that just sits in a basket until we pull it out to wear.  The house is covered in a layer of dog hair because I can't keep up with the rate that the dog malts, plus turning on the vacuum is a trigger for Lyla.  I am sick of washing bottles.  

Most days I hold Lyla.  Hold her for hours trying to put her to sleep, whilst struggling to stay awake in the meantime, so I can eventually put her to bed instead of sleeping on the couch.  I can't put her down if she's not quite in that right stage of sleep because that tiny, minuscule movement, startles her, then I find myself trying to put her back to sleep for the next 45 minutes.  I hold her because she won't let me put her down to have a break.  I hold her because I want to.

Most days put Lyla on the couch and turn on the TV or the iPad just so I can distract Lyla while I wash the dishes, or have a coffee, or a lie down for 10 minutes.

Most days someone tells me I am amazing.  Amazing for going through what I am going through.  I am no more amazing than the next mother, in fact I am certain I am far less amazing than most.  I am just doing what I have to do, just doing what everyone out there would be doing.

Most days I think about what Lyla would be like if she didn't have a disability.  I cannot picture it though.  I cannot envision Lyla running around, or talking, or riding a bike.  I love Lyla the way she is.

Most days I want to take it all away from her.  I want to take away the scoliosis and the respiratory issues.  The things that hinder her, the things that impact her life.  Just one less thing to make her life just that little bit easier.  I can deal with disability, that's not the issue, I cannot deal with seeing my daughter suffer, slowly.

Most days I wonder how she will go in school, or is it really, how will I go when she is in school?  Who is going to respond to her needs?  Is this person really going to understand what it is she really needs?  What if she is so upset she can't breathe - is this new carer going to manage this, because many medical professionals cannot?

Most days Every time Lyla does that one thing no one expected, I feel as though all those hundreds of hours of therapies, or what ever it may be, were worth all those tears.

Most days I feel guilty.  I feel guilty for not being able to return a call or message from a friend, not being able to drop everything to help someone, for not giving my husband as much attention as he deserves, for leaving Lyla on the couch while I did something, for spending the day at home but still not managing to do anything around the house, for not being able to just go out with friends.

Most Every day I sing to Lyla.  I sing songs I do not know the words to, I sing songs I make up, I sing theme tunes, or commercial jingles because I know that makes her happy.

Most days I am exhausted.  Exhausted from doing nothing, exhausted from not sleeping well that night, exhausted from driving around all day, exhausted from... who knows what else, I am so exhausted I cannot remember.

Most days Every night I check Lyla.  I check her throughout the night to make sure she is still breathing.  If I have had an uninterrupted sleep I wake up in the morning in a fright, worried because she didn't wake me up overnight.  Is she alive?  I rush to check on her...

She is still breathing.

Most days I fight.  I fight to keep Lyla alive, I fight to get her the best care she deserves, I fight to get the medical treatment she needs, I fight for an answer, I fight for those with special needs, those without a voice.

Most days I think about how nice it would be if I didn't need to do all these extra things, if my biggest issue was my child talked to much, or what arts and craft activity we were going to do that day, or what park we should go play at.

Most days it would be nice not to worry if I have packed enough specialised formula for an outing, is her feeding pump is charged, have I got her medication with me.

Even after all of that...
Everyday is a good day, and everyday is completely worth it.

Monday, June 2, 2014

Week 5-7 Of Life: Our Journey To Palliative Care

This past week was National Palliative Care Week.  Palliative care sounds like a scary thing, and it is, but the services, support and care, palliative care providers provide for their families is unexplainable.  So, I thought it would be a fitting time to share our story of how we become apart of palliative care.
(due to my horrible memory, there may be a few blanks)
January 3rd, 2012, at 5 weeks and 5 days of age, Lyla was booked in to have an overnight oximetry and a barium swallow at the WCH.  Anyone who is unfamiliar with an oximetry, it is non invasive test that measures the oxygen saturation levels in the body, and a barium test watches a swallow (while drinking) under x-ray.  As soon as we arrived to the ward, we were told we were in for 2 nights, which was news to us, and just as quick as we arrived and started to get settled, Lyla had her first 'code blue', followed by another 2 that night; we became quite familiar with the Medical Emergency Team.  And needless to say, everyone in the ward was freaked out; the nurses moved Lyla and myself to the room directly in front of their desk, put her on oxygen and gave her a 1:1 nurse, who literally sat next to Lyla all night.  I was even told not to touch or pick up Lyla incase that set her off in to a blue episode again!  The following day, slowly started our week from hell, with the help from a very smug, inconsiderate, inappropriate, condescending and just all round asshole of a doctor ("Dr M."), he cut Lyla's feed amounts in half and put her on continuous feeds, incase all of this was reflux related (ha!).  Eventually we were moved to PICU, as Lyla's needs became too much for ward nurses to handle.
We came in for an oximetry, but we ended up in intensive care.  This was all new to us, yes we had spent a couple of weeks in hospital when Lyla was a newborn, but we had been at home for 4 weeks, 4 amazing (and slightly scary) weeks where we tried not to think about her unknown future and go about our new life as normal as possible.  It was overwhelming, but we had an amazing nurse in PICU, called Kate, and she was exactly the kind of person I needed around me, happy, helpful, caring; if I wasn't around Lyla she was there holding her and I knew she was safe.  I still think about her, she was the one person I could say inspired me to want to become a nurse.  I wanted to do for others what she was doing for us. 
Our time in PICU was not how I envisioned and it kept going from one extreme to another.  It went back to day 1 of life; to try and find a diagnosis for Lyla, to try understand why she was like she was.  They were no longer focused on the issue we came in for - respiratory.  To Dr M. she was science experiment, he thought it was exciting, coming in to see us with a bounce in his step, an inappropriate joke about the situation and then a laugh.  We met with a number of doctors and specialists over the first couple of days; general medicine, respiratory, pulmonary, neurology, genetics, ENT.  It was decided to take Lyla to have a laryngotracheobronchoscopy (camera down airway) to check for any obstructions in her airways that could be causing her to have these blue spells, after the scope she would have a MRI scan; all done under general anaesthetic.  It was scary, this was her first anaesthetic, despite everything she underwent when she was born. Thankfully she came back with no issues from the anaesthetic and no growths or obstructions in her airways; instead she had a continuous airway spasm.  The MRI showed possible 'bilateral open opercular syndrome', only Lyla's neurologist knew what it was at the time; a malformation of her brain that would affect face and throat muscles.
After raised concerns about possible seizure activity Lyla had an EEG done whilst in PICU, normally they attach sticky monitors to the head, but for a more accurate reading the monitors had tiny needles that went into the scalp.  Thankfully there were no recorded seizure like activities.  But things were not looking good for Lyla, it was blue episode, after blue episode, after blue episode; everyone knows what continuous lack of oxygen can do to the brain, and the biggest fear of ours and the doctors was she would have one of these episodes and not recover. 
We (myself, Daniel, my parents and his parents) had a big multidisciplinary meeting one morning with all the specialists we met with over the stay, to discuss what had been found and what we would do next.  Luckily by this stage Dr M. was on leave, so we had a lovely new doctor to lead everything.  It seemed the ONLY option we had to help Lyla was to take her to surgery straight away to have a tracheostomy inserted to protect her airway.  We didn't want this.  After a very long meeting, lots of discussion and lots of tears, we begged (almost) to let Lyla come home.  We didn't know what to expect, but I was prepared for Lyla to come home and die, as was everyone else.  The doctors were happy for discharge, but we couldn't leave without oxygen and because of our decision we were put in contact with palliative care.
 This was scary, palliative care was for people who were just about to die, so I thought.  Her name was Julie, she was very sympathetic to our situation explaining what she does and what P.C. do for families; it was a lot more than what I thought.  Julie sat down with myself and Daniel along with our parents and we discussed what our goals were for Lyla and many other heartbreaking things no parent should need to think or talk about.  Julie said we should make a resuscitation plan before being discharged, incase something was to happen with Lyla and we would have, in writing, how far we were willing to intervene.  We told Julie we didn't want Lyla on 24 hour continuous oxygen and feeds (like what was wanted by doctors), as this would be impacting on our quality of life with Lyla.  After these meetings Lyla was taken off all supports and monitoring and we were left in charge of her care, doing what we would normally do at home. 
Later that day we had a nice distraction as my grandpa had organised to have Brenton Sanderson come in to visit us.  I wasn't too familiar with Brenton, but he was the new AFL coach for the Adelaide Crows; everyone in our family is a Crows supporter except for Dan and myself, we're Geelong supporters, but Brenton was an ex Geelong player and assistant coach, so Dan was happy. He came in for an hour or so, we told him all about Lyla, had some photos and everyone had a nice chat with him about football.

Our final day in PICU was 'exciting', we were looking forward to getting out of this place.  We were given rundowns on how to use our new feeding pump and home oxygen, then came the time to fill out the resuscitation plan.  Thankfully Kate talked us through all levels of intervention and physically showed us what machines were used, so we knew what to expect if we were ever in the position.  Dan and I met with the leading doctor and Julie, we made our decision for resuscitation, much to their surprise, they didn't think we were making the right choice, but it was OUR choice.  There was then some discussion between the two, that the coroner should be advised 'to avert the need for involvement in unlikely event of death less than 24 hours post discharge'.  That was rough. 
Then it was time to leave.  It took a couple of days to finally relax back into our life, but I still had in the  back of my head with every episode she had at home that this would be the last one.  
The weeks and months after our discharge our family told us of some of the things Dr M. said to them while we were not around.  It started with Dr M. running into a support nurse we had with us during our PICU stay, and he was wanting to know why Lyla had been discharged, this was weeks later, he believed she should still be in.  Then more recently our parents told us Dr M. told them the best thing to do for Lyla was to let her starve to death.  The thought of a medical professional saying something like that to a family makes me physically sick, but thankfully this doctor no longer works at the WCH. 
(thats Kate in the background)
We are still under palliative care, we do not require as frequent support from them like we once did, but they are always there if we need them, for literally anything; in fact Julie is coming to visit us tomorrow, so we can fill her in to what has been happening over the last few months and weeks, and Julie hasn't seen Lyla in a year! 

Saturday, April 26, 2014

Why shouldn't it happen to us?

I was a relatively healthy 22 year old when I fell pregnant with Lyla, I remember being ecstatic (and maybe a tad nervous) when I saw those 2 lines on that test.  I was in a hostel bathroom in Dublin and Dan was downstairs in the pub, and after waiting all afternoon to feel the need to pee, I texted Dan (romantic I know) that the test was positive and he replied with "Yay, I knew it".  

I avoided all the risky food and drinks while pregnant, I read all the books and attended all my midwife appointments.  I loved being pregnant, I was excited about the thought of giving birth, and I was looking forward to raising a beautiful and healthy child in a very natural and gentle way.  But I never expected to have a child with a severe disability, I had not prepared myself for this, I did not read about this, because this wasn't something that happened to people like me.  It was hard just as much as it was heartbreaking.  I has this picture in my head of my daughter running around with her cousins, who were just a few months old than her, going to school, telling me stories, playing at the park, making friends - all those things children do.  How could she do this when everyone was telling us she would live in a vegetative state and preparing us for her death?  Not only that, but no one actually knew what was wrong with Lyla, so how do they know her future when they don't even know anything about her condition? 

For the first few months of Lyla's life, whenever we had an appointment with her neurologist, geneticist or metabolic specialist I had prepared myself; that day we would finally get a diagnosis for Lyla.  I mean, how hard can it really be?  How naive.  Every appointment we were told the same thing we had from the beginning,'we don't know', and every time I left feeling deflated and frustrated...  There were a few possibles from early on though, Polymicrogyria, Schwartz-Jampel, Syalidosis, but Lyla never had all of right signs, or she had the wrong patterns.  It was never enough for a diagnosis.  After a while I no longer went to an appointment with that hope for a diagnosis.

Lyla is 2 and a half now and she still has no diagnosis.  My best friend is google, I google every condition and every medical word I see in Lyla's notes and reports.  I google every condition I read about, every syndrome I read of other children having and I try to connect the dots - Lyla has this symptom and this one too; I'm sure she has every condition out there thanks to Dr Google.  I need to know, I need to do all I can and I need to help her, I am her mother, but there is nothing I can do, I can't fix her, I don't even know what her future holds.  But I know it does not involve walking, being an independent woman, or getting married or having children... I have a severely disabled baby who will forever live in a child like state, who will be dependent on me for the remainder of her life, a life that will more than likely not be a long one.  That doesn't make me a horrible mother, I am being realistic, which may be hard for most to understand, but not for me and not for the people in similar situations.  I do not want to live with false hope and then grief, nor do I want to spend Lyla's life wishing for something better or thinking 'why me?', because I have something very special.  I have a daughter who has brought me so much happiness.  A daughter who, despite everything she has and will continue to go through, is gorgeous, happy, smart, cheeky, feisty and totes hilar.  A daughter who has taught me how to be a caring, sympathetic and more patient person.  A daughter who has inspired me to help other people, to share her story, to advocate for and educate others about special needs.  A daughter who has given me goals and ambitions.  A daughter who has shown me this place very few ever get the privilege of experiencing.  A daughter who has made me appreciate all those tiny little things most don't notice, and to live for every minute and never take anything for granted because it can be taken away in a second.  And I have a daughter who has shown me what true love is, she has reconfirmed why I wanted to be a mother.  It is about what you learn on the journey. 

We now know a diagnosis will not fix Lyla, but a diagnosis will help us.  Those dots will finally be connected, we will have a better understanding of what to expect for Lyla's future, and we will know what our chances are of having other children affected by the same condition.  Not everyone understands that risk as quite often I am asked when we are having more children... Caring for one severely disabled child is very different to possibly caring for two severely disabled children, and then caring for two severely disabled grown adults is very different from caring for one severely disabled child.  That's not a chance I am willing to take at the moment. 

I am the mother, who even though did everything properly, had a daughter with a severe disability.  But why shouldn't it be me?  Maybe I was prepared to have a disabled child?  I always had this weird feeling that it would be me.  I have the support, I have the love and I have the strength that was needed to raise a child with extra needs.  And even though I see my nieces and nephew doing the things Lyla should also be doing, I am no longer heartbroken, I am in total awe of the child we created and she is amazing just the way she is. 

Friday, April 25, 2014

Undiagnosed Children's Awareness Day 2014

Today marks another Undiagnosed Children's Awareness Day that we have celebrated for Lyla, and I am sure a day will come when we will no longer need to celebrate the day because Lyla is undiagnosed, but because she once was...

Friday, April 4, 2014

A year!

It's April, which means I've been a 'blogger' for a year, how exciting!

What has happened over the last year? 

- Lyla had her PEG surgery
- I finished my uni courses 
- We moved back into our own house
- We celebrated a 2nd birthday
- We went to Melbourne, twice
- Lyla's disability care moved to the new NDIS
- We have worked on new skills, like standing
- Countless hospital appointments
- Met new people 
- Lots and lots of fun times & memories!

What hasn't happened over the last year?

- We still haven't found a diagnosis

It's a little bit disheartening, but it is not something that I let affect me.  Of course I would love to have an answer for Lyla's condition and of course I would like to know what the chances are of the same thing happening again is, but I am sure an answer will come.  
One day.

In the meantime, as it is April it's almost time to celebrate...
Undiagnosed Children's Awareness Day! 
Friday April 25 is the day it falls on this year, well worldwide it is, in Australia it is Saturday April 26, but as it is not as widely known or celebrated in Australia, I am celebrating on the Friday with the rest of the world.

Here in Australia there doesn't seem to be much knowledge / support / research / information / funding / organisations / etc. focusing on undiagnosed conditions.  How sad is that? 

 Lyla and I decided to do as many positive things as we can in April to celebrate and bring some awareness to UCAD, here in Australia.  We started with trying to find someone or something that focuses on the undiagnosed - we wanted to raise some money that would go towards helping people find a diagnosis for children, but we couldn't find anything like that here!  The next best option was to fundraise for the Women's and Children's Hospital Foundation so that is what we are doing.  It is a place we spend A LOT of time and a place, that unfortunately, is very important to us.

Secondly, we made a video clip.  It was a last minute idea I decided we had to do Tuesday night and I knew I needed my playgroup mums & kids to participate.  So Wednesday morning at playgroup we filmed it and that night I edited it together.  If you haven't already seen it I urge you to watch it, it's great and I am not just saying that because I made it, it truly is special!

Thirdly, I am spreading the word.  I am using the video, the fundraising and Lyla's story to get the message out there.  Undiagnosed Children's Awareness Day is just as important as any other celebrated awareness day, it just doesn't receive the recognition it deserves.

Lyla and I are going to change that!

** Lyla has her own Facebook group now, which is easier for me to update everyday life through, so for more Lyla news, head over to...