Tuesday, November 26, 2013

Yo Ho Let's Go - Captain Lyla's 2nd Birthday!

Sunday November 24th we hit a new milestone, one, two year ago, we never expected to see...

Lyla's 2nd Birthday! 


Her first birthday we celebrate in Wonderland, with an Alice in Wonderland themed birthday; this year we celebrated in Neverland with a Jake and The Neverland Pirates themed party - one of her favourite cartoons.

I am a huge fan of arts and crafts (ha ha goober) so this is my one time to shine and go OTT.  I think that's very important, Lyla's life (and anyone's for that matter) is very precious and I want to celebrate every milestone, no matter how insignificant they may seem to some and every birthday, because we really don't know how many we'll have... We're hoping for a lot!  So why not splash out and have a huge party to celebrate Lyla? 

We had our closest friends and family and Lyla's friends over (though some had to pull out last minute due to sickness and this bloody stomach bug going around at the moment), but it was a great day, and Lyla was spoilt rotten!

Here are some pictures from the day...















Jess

Saturday, November 16, 2013

Scoliosis Check-Up, Part 2

Yesterday Lyla had her 1 month orthopaedic follow up, at the Women's & Children's Hospital, for more x-rays and I guess a bit more of an idea / plan with the MRI and surgery on her spine.  

We started off with having several x-rays done with the doctor as he wanted us to pull and stretch her out as much as possible so he could see the amount of flexibility she has in her spine; this turned out to be very unsuccessful, as he told me afterwards, but I knew that anyways as she was upset, therefore tensing and not relaxing.  After this traumatic experience we headed back down to clinic where I was expecting to be told the big plan with the surgery, something I had prepared myself for over the last month.  Well, things apparently changed...  Dr. Selby (orthopaedic surgeon) came in and said 'I'm going to put her in a cast'.  Huh?  What?  It seems Lyla is still too small for surgery and the nuts and bolts don't come in little baby Lyla size, and she may not have another year or two to leave things how they are until she is big enough.  

As I mentioned in the last post about this degree of curvature causing lung and heart problems.  Leaving her spine as it is until she is big enough could, and possibly will, kill her; her lungs will not grow and develop.  

So she will be having a cast called a Risser Cast put on to control, not correct, her spine until she is big enough for surgery; he suggested this last year, but due to all the other health issues she was having it was not a good idea.  At the same time, she may be having her hips cast as they have always been dislocated, but he will discuss this with her other orthopaedic doctor, Dr. Allcock.  The casting is done under a general anaesthetic, so I filled in admission papers yesterday and it is scheduled for January 29th, 2014.  He still wants the MRI, so that will be done under the same GA.  The cast only comes off for re-sizing and will remain on for 4-6 months!

I've tried to research Risser Casting, but I can't find a whole lot of information on it, as it is an older style of casting.  I've read it goes under the armpits down to the hips, but I've also read it goes over the shoulders to the neck and sometimes past the hips.  I think the thought of her being in pretty much a full body cast (hips casted too if they decide to fix the hip dysplasia) is harder for me to accept than the surgery.  I've had so many questions pop into my head since the appointment - the worst I keep thinking is what if something happens to her and she needs CPR?  




Jess

Thursday, October 17, 2013

I Didn't Choose The Scoliosis Life, The Scoliosis Life Chose Me...

To start, and I have probably mentioned in previous posts, Lyla has scoliosis - a right curve with associated kyphosis (curve protruding from her back) 
...

Back in September 2012, Lyla had an orthopaedic appointment for a spinal check-up and x-ray; at that stage Lyla's spine had curved to about 70º+ in the space of 10 months, so it was quite a severe and progressive curvature.  At that September appointment the specialist told me (as we discussed this at a previous appointment) a spinal brace would not help Lyla - 1. because it is very constrictive and will not help her already bad breathing issues, and 2. her spine will more than likely return to this position over time.  He breifly mentioned surgery, but said she was too young so all they can do for the time being was to monitor it and return in a year.

So fast forward to last Friday when we had the follow up orthopaedic appointment.  We had a 9am appointment at the Women's and Children's Hospital - 9am is not usually a time we are up and in the city by, but the good thing about the early appointment was a semi empty clinic, therefore we did not have to wait the normal 2 - 2.5 hours to see the specialist... Anyways, straight away Lyla went to have an x-ray, this is a somewhat traumatic experience for Lyla, she is not normally awake at 9am, but here she was naked, on a cold table being pinned down and stretched by a stranger.  I try to make all these things as happy or as enjoyable as possible by doing all her favourite things, like explaining everything we are doing; 'one arm out, two arms out, boof out' as I take her shirt off, and 'arms up, up, up' as the radiologist tries to force her arms up in an un-natural position for her; none of this actually helps, but I guess it makes me feel better knowing I am doing what I can to try and make her feel better.

I got the x-ray image straight away and headed back down to the clinic, I thought I would take a quick peek at the x-ray as I waited for the lift, my heart sank as I started to pull it out and I saw all her little ribs squished and the curve of her spine.  I knew her back had worsened, but I don't think I was expecting it to look quite as bad as it did.  We waited about 30 minutes to see her specialist, he came in and measured the curve on her x-ray and he said it has reached and slight passed the 100º mark - 100 degrees!? 100 degrees!?  I remember the last time I saw him he said, "Once a curve reaches 90º people start to have lung and heart issues", Lyla is now at 100º what does this mean?  I asked if he has seen this degree of scoliosis on someone before, he said he has, its very rare but he has seen it with older people, and that it is very, very rare for someone Lyla's age to have this severity.

He checked Lyla out and did all the usual things, he said she still has some flexibility in her spine which is good, he also said her spine is rotating and we're now stuck in between a rock and a hard place and she needs something done as soon as possible, and surgery is the only option... Surgery was something we didn't want to do, especially when Lyla was younger, because her future was so unknown we didn't want to put her through surgeries just for the sake of it, but if that's the only option we have, we have no choice... The specialist said the plan is to return in 1 month for some more x-rays and then he wants her to have an MRI (under anaesthetic).  Lyla is having an anaesthetic in January for botox in her arms, so I asked if he could contact her rehabilitation doctor to combine them, which he did, but he wants it done sooner, so he'll try push the botox forward.  And after all of that, surgery.  He said because Lyla is so small and still growing, surgery will need to be performed every 6 months to replace the rods.  Apparently there are some other, newer options, but he is unsure if they're available in Australia, or if they're available in her size.


this is her x-ray from last week


This is a comparison - image on left is most recent October 2013 - 100º
image on right is September 2012 - 70º





Jess

My Child - the most 'normal', medically abnormal child out there

Two weeks ago we had a metabolic appointment and finally got the results from Lyla's liver, skin and muscle biopsies she had done back in June; the results were just as I expected - 
all normal!  

I'm have copies of the reports, none of which I can interpret by myself, but from what I was told some of her results did come back higher than 'normal', but not so abnormal that it would suggest or direct them to a diagnosis.  Her liver, which has been a bit of a concern to doctors (large, extremely high LFT, discoloured, etc) came back as slightly fatty; but once again nothing to worry about.  This was a relief to me, especially after hearing the surgeon who performed Lyla's gastrostomy, say her liver looked very unhealthy.  This made my brain go into overdrive thinking she is going to need a liver transplant, etc, etc.  Thankfully that's not the case. 

So what's next?  Her metabolic doctor will have a meeting with her neurologist and geneticist to see if she can have whole-exome sequencing genetic testing done.  Exome sequencing is a new, very sophisticated and quite expensive genetic test, which requires bloods from child and parents to look thoroughly through the DNA finding any defects and genetic disorders; this is our best shot at the moment.  Fingers crossed we get the green light for this.



Jess

Saturday, August 3, 2013

Awareness Week...

I wrote this yesterday & published it, but it obviously didn't work, so try again today...


This week / day is very special for multiple reasons, 3 in fact, this first week of August is Cerebral Palsy Awareness Week (Monday July 30 - Sunday August 5), Jeans for Genes day (Friday August 3) and World Breastfeeding Week (Thursday August 1 - Wednesday August 7), all very important to me.


Every 18 hours an infant is born with, or will develop, cerebral palsy, which is roughly 600 - 700 children a year; the number 1 physical disability in children.  Cerebral palsy is not something you can catch, it is caused by damage to the brain during pregnancy, delivery, or soon after birth; the main causes being oxygen deprivation, or prematurity.  There are various forms of CP, but all affect the movement, tone, posture, coordination and reflexes of the body, and often people with CP also suffer from vision, hearing, learning and speech impairments, or epilepsy. 

Lyla's second cousin suffers from diplegia cerebral palsy (I hope that is correct), and we have been lucky enough to come in contact with other children whom also suffer from CP.  Several months ago Lyla was "diagnosed" with cerebral palsy, spastic quadriplegia actually, spastic meaning high muscle tone, movement difficulties and involuntary movements, and quadriplegia which mean it affects the entire body.  BUT, she doesn't actually have CP, confusing I know, but if you were to just look at Lyla's characteristics (movement, tone, etc, etc) cerebral palsy fits, this though, allows me to find out more in terms of therapies that may be able to help. 

...

Jeans for Genes day, which is today, was a cause I never really thought much about until just recently. I, like many, used to give my gold coin donation at school just so I could wear jeans for the day and not really know why, or what I was giving money to, probably because it didn't affect me... Well turns out all these years later it has.  Every year millions of Australians give a gold coin donation in order to wear jeans for the day; these donations go straight to the Children's Medical Research Institute.  It is here scientists are able to find cures, treatments and diagnosis' for the 1 in 20 children who are born with congenital birth defects, diseases or genetic disorders.  Lyla is one of these children, as are her special playgroup friends, and my cousin Chelsea, who lost her battle to brain cancer, July 5th, 2011 at the age of 5. 

...

And finally, World Breastfeeding Week!  Those who know me, know I am a huge advocate for breastfeeding, and those who know me would know that it was something we were physically unable to do and I was devastated, but that didn't stop me!  Due to Lyla's condition she was unable to suck, which is obviously crucial for breastfeeding, thus she had a feeding tube inserted.  For over 7 months I attached myself to a pump and 99.9% of her diet was breast milk.  But my days slowly turned from caring for Lyla, to trying to express enough so she would never need formula.  Determined to go for as long as possible I knew it was a battle I would not win; a child whom is solely tube fed cannot go on forever with breast milk, nor could I, so the time came and I stopped. 


Jess


Tuesday, July 23, 2013

Lyla's Surgery

I have been a bit slack on the updating, yet again... I think one of my last posts was just before Lyla's gastrostomy, which was about 7 weeks ago now, so that's what I'm going to write about :)

After all the stuffing around with Lyla's surgery date, it was finally scheduled for Wednesday, June 5th.  Lyla had to fast from 6am and was admitted at 11am that morning.  She was SO happy, usually going to the hospital is a bad experience for her, but for some reason she was in a great mood.  Her surgeon came in around 1pm to discuss the operation; she would be having a laparoscopic gastrostomy, a liver, muscle and tissue biopsy, and bloods taken for genetic testing.  I asked while they were actually doing the operations through her belly button if her hernia could be fixed - it only seemed right as she has an umbilical hernia and they were going through the site, they may as well just sew the hole back up on the way - he said that was fine!  We took her through to the pre-op room and at about 2:30pm she went in.  The anesthetist said the surgery would take anywhere from 1 - 1.5 hours, plus about 30 minutes in recovery, she would then be transferred to PICU where we would meet her... 5pm came by and I was stressing out, and no one knew anything, soon after the surgeon found us to say the operation went well, they just went really slowly and her liver biopsy took longer than expected, it took 6 attempts, he said her liver looked really unhealthy and discoloured, but he did not know why.  Lyla has always had a really weird liver, obviously no one has physically seen it before, but doctors have mentioned it is quite large and her liver tests have always come back abnormal, this was the reason for the biopsy.

About 6:30pm I was finally able to see her... She was very sad and crying / screaming like I had never heard her do before.  She was hooked up to the machines and had high and low flow oxygen on, but the NG was gone!  It took a while for the PICU staff to work out her medication that night, it was every hour on the hour she would start screaming in pain, but she would react to the stronger opioid, as they would pretty much slow her breathing down to nothing, so it was a long night.  The following day she was having blue episode after blue episode, up until that afternoon when they slowly started giving her some hydrolite, then her formula, it was like a light switch and she was back to her normal self, and surprisingly did not require any pain relief for the rest of the stay!  That night I found it extremely hard to sleep (I was in her room) as her apnoea monitor was constantly going off, early morning I went into the parents room for a few hours of sleep and one of the nurses said, I cannot wrap my head around Lyla and her breathing.... If this was any other person having these HUGE dips in oxygen levels, and the constant apnoea episodes, they would have died, but her body just adapts!  I always knew she was special!

I was expecting to leave on the Friday, but we weren't allowed until Lyla had built back up to her normal food intake, so we were transferred to a ward for another 2 nights.  As soon as Lyla was hooked up to the oximetry monitors they started going off, as her oxygen levels are naturally low, and eventually, after some reassurance (me reassuring the nurses) they felt comfortable, but decided to leave her low flow oxygen on as it kept her above the 92% oxygen level, occasionally.  Saturday came by and Lyla had 2 new nurses, who remembered her from her last hospital stay at 7 weeks old... 'The baby who went blue and constantly required the medical emergency team!'.  Anyways, Lyla continued to scare these 2 nurses with her episodes, lack of breathing, low breathing and "seizures"!  NEVER have I thought Lyla had seizures, and her previous EEG's, though along time ago, never showed seizure activity, but these 2 were so sure she was having seizures they started recording them.  Before leaving for the night, the day nurse begged me to ask the doctors to do an overnight oximetry and an EEG on her, no way was I bringing this up to anyone now, we were leaving in the morning!  Lyla had another blue episode overnight and her night nurse said she wanted to bring in the doctor to give her a look over and know her base line in case something happened to Lyla overnight.  The doctor came in shortly after and she told the nurse to pretty much relax, as I was not concerned about her, and there is nothing she (doctor) can do for Lyla, this is just how she is and she cannot be "fixed".  I was so happy the doctor understood!

Sunday came and the surgeon gave Lyla the all clear to go home!  

...

Since the operation Lyla has changed so much, she is no longer coughing and gagging from the nasogastric tube, she has been making some small noises and loud cries, she is semi-interested in tasting food and will let us put a dummy in her mouth!  She is healing really well, and in about 2-3 weeks her PEG will be changed over to a Mic-Key. 












Jess

Friday, May 31, 2013

'Welcome to Holland'

I first came across this poem, by Emily Perl Kingsley, early last year and just like the our world from above post, it is an amazing comparison of our life with a disabled child.  More recently I have had numerous people mention and forward on the poem, so I thought it was about time I post it...



WELCOME TO HOLLAND


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

The Colour Run

As I mentioned on a previous post, Daniel, myself and our team the 'Rainbow Stars' (made up of staff, playgroup friends and family involved in Novita) were participating in the Adelaide Colour Run, well we did it 2 weeks ago and it was AWESOME!!  Our team has raised close to $3,400, well over our first goal of $1,000, for Novita, as well as the money from tickets sales, which will go towards Make-A-Wish. 

Here are a couple of pictures from the day...












Thank you to everyone who has donated, all this money will help Novita in every way from helping to provide equipment, to supplying our coffee for playgroup, which is an important part of Lyla & my lives. 



Jess

An Update

Sorry I have been MIA for quite a while, I have just finished my 2nd and 3rd uni courses, so the last month, or so, was pretty hectic with final assignments and an exam... plus all the normal everyday stuff which was squeezed in.

So what has been happening over the last month...


Lyla has started a new medication called baclofen.  The plan is for it to help relax her so she will not be as 'stiff'.  I have noticed a small difference, not exactly the difference I was expecting, like more mobility in arms & legs, she just seems to be a little more floppy in the trunk.  I was very hesitant putting her on this medication, and after close to a year of discussion with numerous doctors, I decided to just give it a go... When Lyla was born she was put on diazepan (without our knowledge, or consent) which sedated her for weeks until we had fully weaned her off of it; this is why I was hesitant.  Even though it is a different medication I didn't want it to knock her out, or change her.  

She also started a new formula, up until a month ago she was having your normal supermarket bought stuff, which is not best for a child whose only source of nutrition is a formula designed for 1 year old children who eat solids too.  I was sick of spending $40+ a week on formula.  So after a nutritionist appointment (which I was also not 100% keen on, that is another story) Lyla is now on Nutrison, a pre-made formula, which looks and smells like chocolate milk (you can now imagine the looks I get when I pull out a bottle of 'chocolate' milk) and it is normally for children over the age of 10, but nutritionally, this is best for her.  The bonus of this is, it's FREE!  The downside is the end result, no one is prepared for that!

We have now started weekly occupational therapy sessions, and the occasional speech (if she is around), in the hope to 'de-sensitise' Lyla, as she is very sensitive to unfamiliar textures etc, which, for example, makes things really hard when she has her little 'blue episodes' just because someone other than immediate family touches or holds her.  We are starting at her feet and working our way up. 

We had a follow up eye check 3 weeks ago, her eyes are FINE!!  However, we will be returning in 6 months for an actual test. 

The last couple of weeks Lyla was also very unwell, never has she been so sick before and it was horrible.  She ended up with a chest infection, which as you may know, or may not, for a child like Lyla can be VERY serious, especially with a high risk of aspirating; and sadly this is how many children like her pass away.  She was on 2 forms of antibiotics + a probiotic (which was powdered and got stuck in her NG tube, and ended with a tube change) she also had to have a chest x-ray to rule out pneumonia and avoid a hospital hospital stay, but luckily she's a strong little thing and after MANY sleepless nights, she's good as new!  Following this, we had a midnight visit to ER with a meningococcal scare, luckily that was also clear.

And finally, probably the most exciting news actually, 
WE HAVE A SURGERY DATE FOR A PERMANENT FEEDING TUBE!!!  
 We have been waiting for this surgery for a long bloody time!  There was alot of stuffing around with the date while Lyla was sick and last week her surgery was cancelled and rescheduled 3 times!  Now it is a definite for Wednesday June 5th, 5 sleeps!
The surgery involves placing a permanent feeding tube, either a PEG or Mic-Key Button, directly into her stomach, from the outside.  This means no more nasogastric tube and we will finally be able to see her face with no tube or tape!  Along with this, 3 biopsies will be done - tissue, muscle and liver.  The date cannot come quick enough, but as much as she needs this done and we want it done, I am VERY scared; I don't want her to go under anaesthetic, I don't want her to stay in hospital (staying in PICU), I don't want her to be cut open, and I do not want another repeat of our last hospital stay (I might write about this another day), but positive thinking!


Well, I think that is all that has happened over the last month in the life of Lyla, I will post a few pics too.


That is all for now



Jess 

Friday, April 19, 2013

Colour Run

This year is the first time the Colour Run is being held in Australia... What is the Colour Run?  Well, the Colour Run is known as the "Happiest 5k on the planet"; it is a 5km walk/run event, but not just your average run, at every checkpoint (5 in total) you are covered in brightly coloured paint.  Sounds fun right?

My husband and myself, along with our very special friends are participating in the event as the 'Rainbow Stars' to raise money for the amazing organisation Novita (I will talk about Novita another day), who provide all the therapies for Lyla and her friends.  


Where : Adelaide - Victoria Park Racecourse

When : Sunday May 19th, 9am

Why : To have fun and raise money for your favourite charity or organisation 

How : Colour Run, join a team or participate as individual 




Please feel free to donate a few dollars to Novita and show your support 



I will try and find a group photo of us to add 



Jess

Thursday, April 18, 2013

A day in the life

On a daily basis we are judged or judge people on their physical appearance, everyone does it.  Quite often my mum & I will go to our local shopping centre and 'people watch' whilst having a coffee, but never would I stop someone and question them about their fashion choices for the day; you wouldn't would you?

I know people can't help but look or treat someone differently based on any physical abnormalities they may have, but is it okay to go up to that person and ask them for an explanation as to why they are different?  This is what I want to know, because on a daily basis, numerous times a day if Lyla and myself are out, we are stopped so someone can ask a question, or we see someone performing some kind of Exorcist neck twisting manoeuvre because they just caught a glimpse of Lyla from the corner of their eye.

Monday for example, I was sitting in the new Rundle Mall Plaza, feeding Lyla with a couple of friends, a guy walks pasts, stops, walks back, looks at Lyla points to his nose and asks "What's that for?" to which I replied "For feeding", he walks a few steps and then said "Oh I know what happens otherwise" and stands there (in a packed food court, mind you) puts his hands around his throat and pretends to choke.  Are you serious?  This is the kind of stuff I get whenever we our out in public, okay, well maybe not this dramatic, but still, I don't think its fair to be making fun of my daughter.

These are some of the questions I get or comments I overhear...
"Was she premature?"
"Is she okay?"
"What's that thing in her nose?"
"Is that for oxygen?"
"Look at that poor, sick little girl"
or my personal favourite "What's wrong with her?"

I have no problem talking about Lyla if someone ask a question, but it all depends on how someone asks me the question; when I get "What's wrong with her?" which I get quite frequently, I reply with "Nothing, she is fine" (I want to say 'what's wrong with you', but I don't have the guts).  And "Poor sick little girl", well actually she's not poor, she has a great life and she is not 'sick', in fact she has never been sick! *touch wood* At the end of the day, or by the time they walk away, they've forgotten about Lyla and they don't really care 'what's wrong with her', so why should I be expected to tell them anything?  

So the next time you see someone who looks different or acts different - like that child throwing a tantrum in the supermarket, maybe take a second to think about how your looks are perceived to that child or carer, or those questions you ask; are you asking them because you really care and want to know, or because you are nosey and want to know why they look different, or that child throwing a tantrum, did you think maybe this child has a disability like autism? 

Just a thought.


Jess

Saturday, April 13, 2013

Syndromes without a name....

As everyone is now aware, today is national 'Undiagnosed Children's Awareness Day', so I thought I share some information about Lyla's unknown condition.

Lyla's symptom or abnormality list is a long one, some are quite obvious, some are only obvious to the doctors who are looking for them and some are internal, which are only know about through blood tests, scans, etc.  We have heard a number of possible diagnosis's for Lyla, some extremely rare, which many specialist were even unaware of, to some of the more common, like cerebral palsy.  Not one of these conditions Lyla shows enough or the right symptoms for, or tests have been performed and like many, for some reason, all come back as 'normal'.  We have said from the beginning  it is just 'Lyla Poppy Syndrome', which could well be the case.  

People have said to us an overall diagnosis doesn't change anything, that is true, in some ways, but a diagnosis can provide us with information that can assist us and Lyla in terms of care, treatment, medication, development, or outcomes.  A diagnosis may also provide us with the information we need to know before we decide to expand our family - is it genetic and what are the chances of this occurring again. 

Lyla's symptoms are congenital, meaning they were all present at birth, since then some have worsen while some are not quite as severe as they once were.  Here are Lyla's most obvious or visual symptoms list...



  • Brain formation - first thought to be Polymicrogyria is now Open Bilateral Opercular Syndrome, from my understanding it means the space that divides the left and right hemispheres is larger than normal.  This affects muscle functioning in the face and throat, like listed below.  There is some other brain abnormalities, which I cannot remember.
  • Eyes - ptosis (droopy upper eyelids) due to this, people often assume she is sleepy.  Ophthalmology is also convinced she cannot see - which is absolute bullish*t!  Next appointment is in May, so I will keep you updated.
  • Breathing 
    • Stridor - a loud, high pitched noise which is normally heard while inhaling.  Caused by a 'floppy larynx, it is not as obvious as it once was, which was with every breath, it is really only heard now when she is upset.
    • Airway spasm - discovered during a endoscope procedure
    • 'Blue episodes' - This for a LONG time, and still to this day, is one of the major issues we have; often triggered when Lyla is upset and is associated with the above to breathing problems and possibly her brain.  Lyla's airways start to close causing her to not get enough oxygen and turns blue.  Once, I have had to perform CPR on her because she didn't get a breath in, in time.   We now carry O2 with us in case. 
    • Apnoea - long space between breaths, usually happens while sleeping, and may be due to her brain not always reminding her to breathe. 
  • Feeding - Lyla has always been fed through a naso-gastric feeding tube, as she has no suck / swallow reflex.  One of the main questions I am asked by people is 'when will she eat normally'. This is really the million dollar question, but also the least of my worries.  It's not that she is not interested in eating, she just can't... She does not understand it, therefore can't.  There is also a chance of aspirating (inhaling in to her lungs), which has never actually be tested or confirmed, but for that reason we've been told to give her nothing orally.
  • Spasticity - in arms and legs, which causes increased muscle tone (stiffness - hypertonicity); involuntary movement (leg spams - clonus); limited & delayed movement; contractures. 
  • Scoliosis - Lyla's spine is curved and has worsened over time; she also has 2 forms of scoliosis - kyphosis (curve protruding out of her back) and right thoracic scoliosis (spine curving to the right).  Her right curve, when last scanned, was almost at an 80 degree curve, so quite severe. 
    • Hypotonicity in trunk (weak muscle tone)
  • Bilateral hip dysplasia - both hips are dislocated
  • Global developmental delay


Here are some 'Syndromes Without a Name' [SWAN] links 



Friday, April 12, 2013

Undiagnosed Children's Awareness Day

Tomorrow, Saturday, April 13 is 
'Undiagnosed Children's Awareness Day' 
 Between 30-40% of children with special needs do not have a diagnosis.
Show your support to Lyla and all the other undiagnosed children out there, by wearing blue tomorrow. 














Jess



Thursday, April 11, 2013

'Our world from above'


I just stumbled upon this amazing post by Life with Tyler, this sums up our life EXACTLY!  Every little aspect of this defines us.

 THIS is why I want to share our story, I want people to understand we are different and Lyla is disabled and that is ok.  We have an amazing life and amazing friends and family, and just because we are up in our hot air balloon doesn't mean we, or Lyla, deserve to be treated any differently, or looked at weirdly, or be asked those questions or hear those comments, because I hear them on an everyday basis, and I don't need any ones sympathy.  
I just want everyone to accept us, and be happy and grateful for what they have, instead of worrying about what they think we don't have. 

OUR WORLD FROM ABOVE…

Being a parent of a disabled child makes you feel like you are on a completely different boat to everyone else. A boat way up in the sky…..
Actually its more like a hot air balloon ride.

You start off standing in the basket all alone, wondering why you have been put there.
Then you set off onto your life long journey not knowing what to expect.You get scared and you can’t get out. You cant talk to all your normal friends they dont understand, they are not coming with you. You slowly fly away from them. You can still see them on the ground but they cannot help you, you have to go up into the sky on your own with your child. The ascent upwards is very scary, all your emotions are tested to the limit. The wind pushes you from side to side and you can’t get comfortable. Fear sets in. Eventually the weather settles and the journey becomes easier. You become used to this new atmosphere over time, and you start to realise the view is quite amazing up here. It gets lonely at times, but you bump into more people in air balloons along the way, and you see that their balloons are just as brightly coloured as yours. You tie yourselves together and face the journey head on with your new friends.

You can see everything and everyone a lot more clearly up here…
People sometimes say “oh I’m so sorry to hear your child is disabled.. Or I wouldn’t wish that on anyone… Or how do you do it your amazing!… Ohhh that’s so sad…that’s awful”
Well the truth is it isn’t sad. You shouldn’t pity me or my son. And being depressed about it is not going to make anything better. We have a lovely life. It’s not a bad thing, having a disabled child. Its not a curse of any kind, a punishment or karma, it’s a gift. A valuable journey that makes you a better person. But the majority of people just don’t see that.
You won’t realise this unless you are a parent of disabled child. They don’t bring you any misery at all. They change your life for the better. They give you a new kind of confidence. You don’t get it straight away, it builds over time, but it makes you gradually stronger and stronger. It makes you grow as a person, makes you more resilient. You get what a lot of others don’t have.
Your unique journey shows you what truely matters and what is most important. My son has shown me life in and out of hospitals, and we have seen some really ill children. Some that have a very short life. We watch tv programmes about disabilities and children’s hospitals as it is all familiar to us. In return this has taught us to appreciate our health. We would never do anything to jeopardise it. No amount of money can buy you a new body. We appreciate every little thing we have in life. I take a lot of things with a pinch of salt now because it really doesn’t matter anymore, little things dont usually get me down. What matters is your health, the love of your family and happiness.
Things in a way become more clear. Each day has a purpose, you think ahead and of what you want your future to hold. You have been given a higher knowledge, a perspective on life. You truly appreciate everything when you have seen and felt the worst. You look at people that complain about trivial things and think “you should know how lucky you really are!”
If people stare at your child it annoys you, but on the other hand you don’t care, you have the confidence to say something if you have to. Ive heard someone say “shes too much with him she carries him absolutely everywhere!” But this showed me that some people (not everyone) don’t even have the common sense to think of the bigger picture, they dont sit and think “what if that child is disabled?” They are naive. They think all that disabled children have to look different to be disabled, this isn’t the case. We shouldn’t stare at people who are different we should smile and admire them. They are the ones who struggle and fight the most.
You are in a different world to “normal” people, but your worlds will always collide. You feel the need to educate them about your world but some of them just plainly don’t listen. You can tell they are not interested. You know then that you ARE a better person BECAUSE of the journey you have been on with your special child. You always listen to other peoples stories, and they think their whole world is upside down when really it isnt. They havent got a clue.
When you hear stupid comments from people, it makes you stop and realise you think better than them. You know not to say certain things, or to think twice before doing so. You have moved on from the normal persons state of mind. You don’t think like they do anymore, your mind and way of thinking has become more educated. You have a special gift not many other people have, you see life very differently to others around you.
You are not judgemental anymore. You think of peoples feelings. You don’t ever pick on anyone or take the mickey out of someone for being different. Because your shoe is now on the other foot, you can see everything from all angles. You have a birds eye view from above. You know when comments are wrong and you don’t laugh at jokes. Being different is something that should be valued, if everyone were the same it would be boring.
The most annoying of all is when someone just doesn’t believe just how disabled your child actually is. Oh but can’t he even do this?? Can’t he do that? Why doesn’t he wave or clap hands? Why isnt he talking to me? surely a bit of common sense would say “hmm maybe there is something wrong with him or hes a bit behind?” But it doesn’t.
Truth is we forget about milestones, they are out the window. It would be wrong of me to compare my son to a normally developed child. I don’t dwell on what he can’t do and what he “should” be doing. And it’s annoying when other people bring it up. He is DISABLED. He is unique and he will learn whatever he wants to when he is good and ready. He is happy being the way he is and people need to learn that he is who he is and he is amazing just the way he is. He will never be “normal” so please don’t compare him. He’s not in the same box as them.

Some times people say “I don’t know how you cope” we’ll I don’t know how you cope with your child! My son is the best behaved child I could ask for. He doesn’t complain, he doesn’t shout, he doesn’t ignore me, he doesn’t run around doing things that he shouldn’t. I never have to tell him off. Where he is always with me he will always be safe.
I can go out with him and know he won’t have a tantrum in front of everyone. He will happily sit in his pram and play with things around him. He is content and happy. He may not walk or talk, but the smile on his face speaks a thousand words. It lights up my world. Just knowing he is happy at that point in time. I appreciate all the little things he does do.

People who are disabled aren’t disadvantaged. Them and the people around them have an advantage, they learn much more than an average person and are given a new perspective and appreciation of life. They are enlightened. Being different IS a good thing, you learn more being that way. All the challenges you face will only make you a better person at the end of it all. The more challenges you overcome the better.
I sometimes wish I could touch people and let them walk in our shoes for a bit. See what we have seen. Then maybe then they would realise that when we see a disabled child they make us smile. We feel normal then. We dont pitty them, they make us happy.
They are part of our world from above.

The first two weeks...

Almost 2 years ago, to the day, Daniel & I found out we were expecting our first baby.  We were close to half way through our big UK / European holiday (in Dublin actually) when we found out I was 7 weeks pregnant.  I had a completely 'normal' pregnancy, nothing out of the ordinary, not that I had anything to compare it to, but as far as we were aware we were having a healthy baby, a girl in-fact, due December 8th, 2011.

November 23rd, 2011 came by, I woke up at 5am as my waters were breaking (in bed) and contractions started soon after.  My birth plan was to have a natural labour and delivery, and a healthy baby and mum at the end of it.  19 hours of natural labour went by when I ended up having an emergency c-section, emergency in the sense that it was not planned, not that anything was wrong; I was stuck at 9 cm for close to 5 hours with no further progress.  1:07am, Thursday, November 24th, 2011 Lyla Poppy entered the world... But not as healthy as we were expecting.  This period of time was a blur for me, actually the first couple of weeks of Lyla's life is a blur to me.  Lyla was born, and as far as I knew she was 100% ok and required special care because that was what c-section babies usually required.  I was in recovery when I began to be bombarded with random questions from nurses like 'was your pregnancy normal?' or, 'did you take any drugs or medication during your pregnancy?'.  It was pretty apparent to the nurses and doctors that something was not quite right with Lyla.

Several hours later Lyla was brought to my room for a feed, which was unsuccessful.  A few hours later I was visited by a doctor who broke my heart when he said Lyla was not well, exact words I no longer remember but he was with me for some time, slowly killing me.  A few minutes later my husband and mum arrived and I somehow had to tell them what I was just told.  I was finally able to get out of bed, have a shower and go around to the special care nursery and see my daughter, she had a naso-gastric tube inserted, but she was perfect and beautiful and no matter what anyone said to us, or the amount of bad news we received it did not change how we felt for her, 'healthy' or not.

That night Lyla and myself were transferred from Lyell McEwin hospital to Women's and Children's Hospital, where she spent the next week in ICU and SCBU.  Lyla underwent a number of MRI's, EEG's, lumbar punctures, blood tests, x-rays, eye tests, muscle tests and anything else that they could possibly do to her during that first week; and we were met with a range of doctors and specialists, who all had some kind of bad news to share with us.  We were told Lyla's brain had not fully developed which will leave her severely disabled and her life expectancy would be anywhere between a few months to 1 year.  We fought to get her home as soon as possible, but firstly she required another stay at Lyell McEwin Hospital.  Another week on we were able to bring Lyla home and we quickly settled into everyday life.

...


Lyla is now 16 months old, beautiful, cheeky, feisty, for the most part healthy, but most importantly, alive!  She has not hit any of the major milestones, but that means nothing to us, it just makes you appreciate the smaller things she can do... Like the first time she opened her hand (slightly), or tracked us as we walked past her, which was only 7 or so months ago.  These are the things people take for granted, but for us, these are the biggest achievements. 

No one can ever prepare themselves to be blessed with a disabled child, yes blessed!  And even though we had no prior warning, Lyla was welcomed into our family just like any child. 

I hope by starting this I can shed some light on disability and let people know it is not a disgusting thing, and these special children are no different from any other child, though they may look a little different, or walk a little differently, or eat a little differently.   I also hope by spreading some of the little knowledge I have, will help families who may be in similar situations and let them know they're not alone and there is amazing support out there.


Jess