Decisions and Learning...

It's been a long time since I've posted anything - again...  Our days are blending into each other like some funny shade of grey at the moment.  The only thing dividing them are some black hours that are apparently called "night".  Most of the world sleeps through these black hours... not my household.  Toby and Aerynn are both still tag teaming the evening shift with me falling deeper and deeper into exhaustion.  But we trudge on.

The lack of updates may make it appear that nothing is happening, things are getting better, in fact, it is more like too much is happening, we are still hitting our heads against brick walls and I struggle to find the time in the day to update our "same old same old" situation.

But there is one big difference this year. With the support and guidance of our psychologist and medical team I have made the decision to homeschool the younger three children, including Aerynn.  The reality is that assimilating to a mainstream school doesn't;t make much sense.  In Aerynn's case we need to make the most of every single minute and second she has with vision and importantly within her life.  Making memories is much more important that learning to sit at a desk and follow classroom rules and etiquette.  Instead our little girl is going to run and play and swing and laugh and sing and feel the breezes and sunshine on her face.  She is going to learn in natures classroom and learn life skills rather than institutionalised learning.  Don't get me wrong, there is a place for mainstream education, I'm doing my bachelor of education for that reason, but for these three individuals, life has another path for them.  Mainstream education may come at a later stage for the boys... but for Miss A, life is for living with as much gusto as she can.  




So, our method of education is called "unschooling" and in particular is it going to be child lead.  Children instinctively question their world and learn naturally.  That is what unschooling is all about. We will have set units of work, which the children have already helped me plan, and within those units they will learn to read, write, draw, question, investigate, create conclusions and interact with their world and communities.  I won't mention too much about it here in this blog, as this is dedicated to Aerynns Journey, but I have started a new blog for our new lifestyle and importantly as a record for the children's homeschooling adventures.  It is called Hope, Dreams and Butterflies and can be found here: Hope, Dreams and Butterflies  We also have a Facebook page here:  HDB Facebook Page Hopefully I can keep up blogging and recording all that is needed, there may even be some video entries from the children!!!  I have lots of plans and dreams for this little adventure...  Praying that life will allow these dreams to become reality :)

Diagnosis Confirmation: ASD

3 weeks ago we ventured up to Adelaide for more tests and assessments for Aerynn.  One of these was to see if she has an autism spectrum disorder.  Her behaviours and reactions have always been a little left of centre, she is most definitely "quirky" and has a distinct American accent, despite need living in the US and having no contact with anyone who is of that culture.  

I honestly had no idea what the results would be.  Girls are extraordinarily difficult to diagnose with ASD as they are usually more social than boys in general and are good at masking any symptoms in an effort to blend in.  Miss A can appear to be very social at times, she can maintain eye contact and has an amazingly rich vocabulary.  She is obviously intelligent and wise beyond her years, but is this because of the huge amount of one on one time she has had growing up, is it because she has been conversing and relating to intellectuals most of her life?  I really couldn't answer those questions.  But I know that at the very least she has a sensory processing disorder.  Her reactions to touch, clothing, brushing hair etc are off the richter scale.  She needs help to start working on controlling her reactions, so off to the paediatrician, psychologist and speech therapists we went for a formal ASD assessment.  

Miss A went off quite happily with the psychologist for some play based assessment in the adjoining room, whilst I discussed her development and reactions with the speech therapist.  I have been through this process 3 times before.  I knew what it was about, I came prepared.  Our family is an open book when it comes to their medical needs and ensuring the specialist teams who are involved with them whom we trust implicitly.  I was honest, transparent and up front with everything.  I couldn't say with any certainty that her behaviours and reactions were not learned from her siblings.  I was unable to explain where she picked up the unusual accent with which she speaks.  I was also unable to exclude her behaviours and reactions being nurtured by myself throughout her early childhood when she was so desperately ill and I allowed her rely on me for everything, more than most other children are allowed.  

It hit me quite hard.  This assessment came the day after we were told about the retinosis pigmentosis.  I was already shaken to the core and hurting for my baby girl.  Having her childhood investigated at length, every incident, reaction and behaviour teased out in order to ascertain the why's and what for's...  Seeing it all lay out in front of me, I felt guilty.  I felt scared, but I felt relieved that I had taken the step that our paediatrician had guided me to take and have this assessment completed.  

Yesterday I had our feedback session in regards to this assessment.  Aerynn has been diagnosed with Autism.   I don't know to what level yet, that will be confirmed in the written report I should receive in the coming weeks.  She has been recommended to have occupational therapy, speech therapy and psychology at the very least in order to support her development.  

I am still processing this diagnosis.  I was preparing myself to be told that they were unable to diagnose her and it is all related back to something I did during her early childhood - yes, mumma guilt runs deep in me.  I've shed a tear or two, but know that the reality of this diagnosis hasn't quite hit me yet.  This is my fourth time hearing an autism diagnosis, you are never ready for it.  Your reaction is different with each and every one...  This one is different for me.  It's rocked me in a way I didn't expect.  It's hurting me deeper than I expected. 

So, it's taken 4 years, but we are finally getting answers.  We are getting closer and closer to working out my little girl and getting her the help she needs to lead the most positive and fulfilling life possible.  They aren't answers we necessarily wanted, but since when does life ever deal us the hand that we want to see?  

My baby girl has been granted her yellow ladybug wings...  

Yellow Ladybugs

Mitochondrial Disease Awareness Week

We expected a diagnosis the week, but it's still being investigated.  So this entry (albeit small), thoughts and prayers go out to all those with Mito, those who care for and love those with mito.  It also goes out to the mito angels, gone but never forgotten xxx  

This one's the kicker...  so many conditions which could be related to mitochondria... but it's when you get clusters of conditions involving multiple organs that mitochondrial disease starts to be questioned... such as with Miss A. 

THIS!!!

Blindsided...

Oh the pun is so ironic, but I can't think of another word for it...  shocked perhaps??  

We rock up to Aerynn's neurology appointment knowing that something wasn't quite right.  I mean, when you usually see the box of tissues sitting behind the desk and this time they are front an centre it's a pretty good sign something is going down.  Not to mention the fact the neurologist (who happens to be one of the best in Australia, if not the world) has squeezed you in an appointment between meetings on a non-consulting day.  

So we get there, early (something new for us, I wonder if being early may not be a good omen for us) and wait...  and wait... and the kids all do their usual "### did this", "### won't share", "### hurt me" *cue screaming tantrum*, or was it a meltdown?  Anyway, it was not a pleasant experience.  We were all tired and anxious and trying to be quiet in a medical ward which was not populated so it echoed like the grand canyon! 

Dr rushes in, and remembers us, may not be a good thing as he comments how he tips his hat to me every time we are there because of the combined load of the kids and their disabilities and how well I cope, ahhh if only he knew what was happening inside of my head! ok, he rushes in, ushers us into the room... and that tissue box, darn that tissue box!!!  Small talk ensues as he finds Aerynn's paperwork on the computer and he rustles through papers on his very overworked desk - lots of papers!  Obviously a busy busy man!!  We discuss the ongoing issues of migraines and seizures.  He explains that some of Aerynn's reactions may be behavioural, where I confirm that I agree and that is why she is having an autism spectrum disorder assessment the following Monday (this all happened on last Friday, ASD assessment is an entirely different post!).  We go on to discuss that she is to have some more hospitalisations with EEG's under sedation, and later in hospital for a leisurely week long visit attached to the EEG all the time trying to catch these pesky seizures once and for all.  

Then the sentence opener I was waiting for... "Now, we have some results back on your little missy..."  I was expecting the confirmation of mitochondrial disease which he has alluded to in previous appointments and phone conversations.  I was waiting to be told that my daughters body is failing and depending on where the mitochondria fail next will decide on her symptoms and life prognosis... instead he asks if she has had any issues with her vision.  My silly brain went all fuzzy and I couldn't find words, so simply shook my head (which, now I can compute I know was incorrect).  The words we have been waiting to hear finally fell from Dr Smith's mouth. "The DNA and genetic testing have come back with a result, a gene deletion."  Our little Miss A has been undergoing genetic and DNA analysis for 4 years now, and nothing has shown!  We know that she has something funky happening with her genes as she has so many different markers, but none of them seem to relate to each other or can be bundled together to give us a conclusive diagnosis...  but now, we finally have something concrete, something that indicated that yes, Miss A has got something going on and it has a name!!!  

Hospital waiting rooms have great toys!
Pathology room,
Womens and Children's Hospital, Adelaide, SA. 

So, as he said... vision...  The gene that Aerynn has a deletion of is responsible for a condition called Retinosis Pigmentosa.  He explains that is usually hereditary and is a progressive condition that has no cure and no treatment.  It leads to blindness.  So the concern here being, my uncle went progressively blind.  He applied to join the air force, but had symptoms of his eye condition at a young age so was denied.  He eventually went on to lost most of his vision, but we believe went undiagnosed.  Darn my families tendency to tough it out and not want to bother the doctors :/  We do know that he lost night vision, then colour vision and then his every day vision become progressively worse.  Unfortunately he passed away many years ago so we have little record or information to fall back on to confirm exactly what condition he had, however, it does match the progression of Retinosis Pigmentosa (and a few other eye conditions).  

So this brings me to Miss A...  Last year we took her to the behavioural optometrist to check her eyes before she started school.  All the kids in this family have astigmatism and need glasses.  She passed the vision test with flying colours - woohoo!  roll on to June of this year and she had the obligatory 4 year old health check at school.  I could't work it out, she failed the vision test spectacularly.  There was no denying it, and she was doing her best, but couldn't do the exam, her left eye performed the worst.  Add to that, the room was a little dimly lit, but she should have been able to compensate and see as the other children in the class had.  Anyway, I dismissed this result.  I knew she had passed the optometrist test 7 months earlier after all, why should I worry.  I still have the referral in my drawer to get a repeat vision test at the optometrist again... When we combine this with the fact she is struggling with her night vision, to the point we need to leave lights on or she screams at the top of her lungs in her bunk that she can't see and someone needs to come help her get to the toilet...  it's possible she is simply a carrier of this RP, however, signs are pointing to her having it.  The scary thing is that we've been told to be prepared for a quick progression of the disease in children, up to 5 years worth of vision was mentioned.  

"not here again"
She knows what happens in pathology rooms now.

My head was swimming with these appointments and details.  I did not expect this at all.  And as much as it is an ironic pun, blindsided  is indeed how we felt. 

In the haze we continue to discuss different symptoms Aerynn is experiencing, including persistent fungal infections (internal and external), her very obvious hair loss and the pins and needles in her feet which lead to numbness and an inability to walk.  The decision was made to push on with further testing for the mito disease instead of waiting.   As a result Aerynn had a huge number of blood tests (20ml of blood!!!) the Monday following this appointment.  Some are for further investigation into the mito disease, others are more genetic tests and some general blood tests, including a HBA1C.  The results of these bloods will filter through over the coming weeks and months.  She will be admitted to hospital to have a sedated eye test completed in order to confirm RP or to see if she is simply a carrier.  It will also determine the damage already done to her retinas.  

Should these tests be positive for having RP they won't give us a timeframe on how quickly Aerynn will lose her vision, so in the effort to be prepared and pro-active we will go with the worst case scenario and make sure that we create as many visual memories as possible in case it does happen sooner rather than later.  Should a miracle happen and she is simply a carrier it will mean that everything above is simply a coincidence.  And trust me, it will be a HUGE party time! Regardless on how this turns out the rest of the children, Nathan and I will need too be tested so the extended family are aware that they may be silent carriers of this condition, and the children will require genetic counselling when they settle with a partner in case their partner is a carrier as well and their children are affected.

Making Memories
Friday, Sept 16, 2016
West Beach, Adelaide SA.

It's a lot to take in.  We were not prepared for this.  The unknown is scary, but we have some idea on what is ahead.  We are praying, once again, for miracles. 

Procrastination... Living in the 1%

If it were an olympic sport I would win the gold medal, I'm sure.  I don't know how many times I have sat here, starting at the curser flashing at the top left hand side of the blank screen, only to close the page and walk away.  Too caught up in the now to put it all down in words.  Even now words are not coming easy.  What to say, there's so much to tell, but quite simply, what to say and where to start?

It has now been 4 years since Aerynn was in the Royal Children's Hospital in Melbourne, and we still have no definite diagnosis.  Well...  apparently we are very close, around a 99% certainty... but we've been there before only to have it reversed...  and this diagnosis is one I don't want her to have, so until it's 100% confirmed I'm going to dwell in the 1%. 

It has also been 2 years to the day since Aerynn experienced her first identifiable migraine.  Two years that she has been plagued by the "scratchy bug" which lives in her head.  

She is still a medical enigma.  No one can really tell us what is happening, or why...  The frustration of not knowing keeps eating me up from the inside.  We know she is unwell, we know her symptoms are increasing and slowly we see some progression of whatever this is that is stealing my little girls childhood.  But even if this new suggested diagnosis is correct, it's not something we can cure.  We can hope that there may be some way to delay the inevitable though...  

To type it here makes it seem so real.  I have been toying with saying it out loud at times...  having the words on my lips cause that all too familiar choking feeling come back to my throat.  I've even broached it on Facebook once or twice to see how it fits.  It didn't fit well though.  I mean, it fits Aerynns clusters of symptoms incredibly well, but putting the name with my daughters name feels wrong.  

Even if the neurologist confirms his suspected diagnosis when we see him again in 2 weeks, it won't be the final diagnosis.  There are many tentacles to the beast that is mitochondrial disease. We will know that she has been ensnared by the beast, however not sure which arm we are dealing with for some time yet...  

There! I said it.  I typed it.  It is there in black and white.  

Dr Google is not gentle with his information in Mito or the prognosis of children diagnosed with it.  The scary thing is, almost every week we see some small sign that she has some deterioration of her condition.  I don't want to see it, and them *bam* there it is, staring me in the face...  First it was tingles in her fingers, then they spread to her toes...  then she gets numbness and can't carry her weight...  And we used to blame her being "silly" for reacting to the tingles and numbness.  Heap on that great big serving of momma guilt there.. right on top of me, because I deserve it.  

So I guess this is the update that is long over due on Miss A, but not the update I wanted to write.  I don't really know how much longer I can live in the 1%age of ignorance...  ignorance isn't bliss in this case, because deep down I know that this finally fits.  After all, I was the one pushing for a diagnosis and answers.  We finally have one of the best neurologists in the country who thinks that he has the answers on my little girl, and our paediatrician says if he thinks that this is what we are dealing with, then we can be very certain it will be correct.  I have so many questions, however, I dare not think too hard about the possible answers...

Did I bring this upon us by wanting a diagnosis and answers so badly?

How does one come to terms with the fact their daughter is never going to be getting better?  

How does one deal with their child having what is a terminal illness?  I mean, yeah, life itself is a terminal condition... but... 

I can't do this right now.  Which is why I am living in the 1%... pretending that my world isn't about to collapse all around me.  Living in the bliss of ignorance, delaying the inevitable...  I don't think I can live here much longer, but I'm going to try to for as long as I can... I simply can't deal with the alternative at the moment. 

Happy 5th Birthday Little Princess

Our little Miss A, 

Your birthday has been and gone.  Today is August 10th, two days ago you turned 5 years of age.  There was a stage we weren't sure you would see this magical number.  You have proven so much strength and resilience.  Sure, there are challenges, but we get through them, and every morning is a clean slate and a new day to discover.  

Aerynn, you are a headstrong Miss who knows what she wants.  Your teachers believe you are gifted beyond your years and work on another level compared to other children your age.  Your brain has compensated everything your body has limited you with, but in saying that you are doing soon well physically - almost reaching the accepted growth charts!!!!!  Our little princess is growing!!!!  

So for your 5th birthday we had a big celebration - 3 weeks early. Nanny and poppy came to visit from Tasmania so we had a birthday celebration then so they could join in the fun.  Most other little girls would love princess parties or have a disney or frozen theme, but no, Miss Aerynn insisted on a high tea with her friends.  Complete with cucumber sandwiches, cupcakes and mini cups of tea.  We went racing around town trying to find a tea set for you to use, and discovered a set which belonged to a 90 year old woman.  She had it for quite a while.  It was white, and so fragile...  you could see through the china it was so delicate.  A light blue decoration was on the outside.  I loved it, it was a reflection of you... so pale, fragile and delicate with soft blue eyes burning with intelligence and a fire from within.  It was simply perfect for your high tea.

Nanny made your birthday cake.  You were very indecisive with what you wanted...  apparently a 10 layer wedding cake was not in our budget - much to your disgust.  Instead you allowed us to talk you into a pretty castle cake, complete with turrets. Nanny stayed up ALL NIGHT decorating the cake, making it perfect for our perfect little princess.  It received so many compliments!  Mummy mad the cakes to go inside, one double chocolate mud cake and a butterscotch mud cake.  There wasn't much left by the end of the afternoon, so it must have been very tasty.

For your birthday you asked for a baby born doll.  We found a fairy one in purple - your favourite colour.  Baby born has had several different names since she has been received.  Stacey, Leesa and Toby likes to call her "poop poop".  She is a very loved dolly.  You push her around in the pram that nanny and poppy gave you and feed her from the magic bottles.  I hope that you continue to love Stacey/Leesa/Poop Poop for ever and a day and remember these times you spend playing "mummy" with your baby dolls.  magical times in any little girls life.  

So Miss Aerynn, on your 5th birthday we wish you the best.  We with you everything, peace, love, a happy time on earth, we wish you enough. We have no idea how long you will be with us.  We don't know what the future holds for any of us.  Go ahead and write your own story.  Continue to fight, continue to defy the odds and how them the person you are inside.  Our strong headed little princess who confuses and astounds everyone is growing up... Continue to do so... be our strong and beautiful little Aerynn <3 

Love Mummy xxx

New Year, Long Overdue Update

2015 has come and gone and we are now several days into 2016 so way overdue for an update.  

As I type Aerynn is throwing a massive tantrum so well on track of typical 3/4nager behaviour.  

Medically, Aerynn is still pretty much as she has always been.  We have changed her medical team and has new paediatrician, endocrinologist, immunologist, neurologist and therapists up in Adelaide through the Adelaide Paediatrics Clinic.  I can't recommend them highly enough!!!

She still has wonky blood sugars, however we are not checking them as stringently as we once were.  Her highs and lows really do effect her behaviour and mood, so I can usually tell where she is sitting with BSL, so if it continues for any length of time or she deteriorates I will check it so we can advise her doctors at her next appointment.  

Food wise we are treading carefully.  Not too much of the same foods as she still gets her tummy boating, diarrhoea, vomiting, mucous, ickiness in general and headaches.  she has started transitioning off neonate as her main source of nutrition which I hope will mean more sleep for me if we can maintain her BSL's through the night without her 2am feeds.  

We haven't had any obvious seizure activity increase - which is good!  She has a neurologist appointment in Adelaide next week so I am praying it will be a clear EEG and we can remove epilepsy from her query sheet.  She has vacant episodes still, but nothing really super scary or alarming for me.  Migraines are still an issue however, headaches are usually 2-3 per month with 1 of those developing into a migraine.  She has had an increase in medications to help keep them to this reduced amount.  I know it sounds higher than should be acceptable, but we need to balance medications carefully considering her age, size and development.  We don't want to create a zombie or get her reliant on strong meds at this stage.  Hopefully over time these headaches will decrease and we can wean her off the meds. Well, that's my long term hope!

Growth is slow and steady.  She has cracked the 1 meter mark!!  Woohoo!! Aerynn doesn't stand out as the little person in a group of kids the same age anymore.  She is still tiny (wears size 2-3) and the smallest in the group, but she holds her own.  Probably being loud and bossy helps ;)  Her hair has also started growing nicely throughout 2015 and it has passed shoulder length!!!  It's still thin, but we can get pony tails and clips in now to help it look less sparse :)

We had an intensive vision test towards the end of last year with

a behaviourist optometrist.  No issues were detected - yay!!!  Dentist is tomorrow and then another general health check at the paed next week.  All ready to start Kindergarten in February!!!!!

School in itself is a big and scary thing for us, knowing that we are posing her immune system to all the bugs and the likes that comes with kids being in a close environment, but I'm trying to be positive and hope that she won't be as susceptible as expected.  The school has been fully updated with her story and we hope that all the appropriate steps have been covered in the run up to starting school.  Time will tell if mainstream school (albeit super small) will be workable for Miss A or if I need to look at homeschooling her.  It's a waiting game and a big lesson in trust, faith and patience! 

So that's pretty much where we are at the moment.  A year of NO HOSPITALISATIONS!!!!  Lots of tests, investigations and more questions, no answers but we're pretty used to that now.  

Needing Answers

And soon... please! 

It's heartbreaking to see our little girl in pain and not understanding why she is hurting.  We can't tell her why her head hurts, and why she feels sick all the time.  We can't tell her it's going to get better, we simply don't know what tomorrow is going to bring.

We can, however, enjoy the times she is happy and bubbly and downright cheeky.  We can enjoy her laughter, her smile and her gorgeous pixie voice.  

We've had another rough 12 hours with Aerynn waking at 12.45am with disorientation, lots of scared tears, glazed over look on her face, non-responsive to questions, full body tremors which slowly eased to just hand and feet tremors by 1am, when she fell into a deep deep sleep and was not stirring even when being picked up and moved.  She slept 9 hours straight...  woke, bright as a button... only to be sleepy within the hour and needing 3 naps during the day.  No headaches and no remembering what happened during the night. 

We don't know what is happening.  

We are worried, but trying not to worry at the same time.  

We can increase her medication for migraines to the full strength if we feel it necessary... But I don't know if these episodes are migraines or not.  We suspect they are seizures.  

We have an urgent appointment with her paediatrician in 2 weeks time... it can't come soon enough for me!

Upping the Ante

Our little girl isn't doing so well at the moment.  She has had an increase in the intensity and frequency of her headaches in the past fortnight in particular and we suspect she may also be having some seizure activity :(  We have always been on the alert for signs of seizures as Hubby had epilepsy as a child and there it is on my side of the family as well which increases our risks of the children inheriting it quite substantially.  

Today we happened to have a GP appointment just as Miss A was in the middle of a migraine.  It wasn't pleasant travelling the 38kms to town to have her seen but I'm glad we pushed through.  

On arrival Aerynn promptly vomited several times at the reception desk, so I guess they knew we were being serious when I was saying she was unwell with a migraine.  Poor little mite ended up moaning and unable to contain her pain :(  It's so hard to see her like this and not able to help her...  

Our lovely GP saw her and agreed that it was more than a headache, our little girl is having migraines.  She also agrees that we are very possibly seeing seizure activity.  We have an urgent referral for her to see the paediatric neurologist who visits here every 3 months.  I believe they are here in December so hopefully if they haven't requested she be seen in Adelaide by then she will see him then.  Aerynns medications have been increased and we will get her up to the maximum dosage of it in order to try and reduce her migraines and their severity.  She has been prescribed painstop to help deal with the pain, unfortunately there are no anti-nausea meds she can take in conjunction to her meds so we are hoping she levels out soon.  

Our Gp was also not impressed that her next appt with the paed is next May and has called the peads rooms requesting an urgent appointment within the next month and to be for Aerynn to be under the care of another paed

whilst our regular paed is on maternity leave.  

We are trying not to worry too much.  We don't know what is happening inside her little head at the moment but at least the neurologist can rule out anything sinister and run the necessary tests to help our little girl.  

Headaches..

Aerynn, October 2014

Our Aerynn still isn't in peak condition.  She is slowly growing and appears on the surface to be a wonderfully happy and well adjusted 3 year old but she is still small for her age, still has dietary limitations and on neonate formula and supplements.  Her blood sugars are stable most of the time but have a tendency to drop super low or swing high and she is still getting severe stomach pains and migraines.  

She has beens started on some medication to try and combat the migraines.  Her paediatrician believes some of her sever stomach pains are related to her migraines as well.  She has had a week of the new meds and already had another migraine last night with swinging sugars, so we are back starting BSL, food and activity monitoring to try and work out any triggers to these attacks.  

Picking Bunny Tails (what Aerynn calls "clams") October 2014

In the meantime she is still our gorgeous Aerynn.  She is blossoming into a wonderful character full of love, a wonderful big and little sister and knows how to put us in stitches at the oddest times :)  

October: Dwarfism Awareness Month

I'm back...

Did ya miss me?  probably not considering I feel I'm talking to myself - But this blog has been a great record to draw information and past issues from for her medical teams so I have to make sure I keep it updated!! 

Sunset behind our house

Good news!  Miss A had her surgery and come through with flying colours :)  Well the surgical side that is... she also came through with high blood sugars and spent an extra couple of days in hospital up in Adelaide.  She was discharged the morning we had to leave.. was a HUGE stress and added pressure BUT WE SURVIVED!!!! 

All prepped and ready for surgery... Feb 3, 2014
Even baby gowns have that well known gape ;)

The surgeon was very pleased with her hernia repairs.  And we are incredibly blessed that we went with my gut instinct and did the bi-lateral repairs as she not only had the huge hernia (the size of a fist) in her left groin, but also a smaller hernia on the right side that we were missing due to the sheer size of her leftie!  So it was optional surgery which ended up being very necessary :) 

Day 2 in hospital, Feb 4, 2014. 
Hoping to go home, but was discharged from surgery
then immediately readmitted to endocrine...
Still cannulated, in case her system
decided to do something out of the ordinary.

Now, her fluctuating blood sugars are raising a bit of a concern now.  She went up to 15.5 the morning after her surgery.  She was then discharged from the surgical team and immediately re-admitted to hospital under endocrine.  We have no real answers as yet.  She is not presenting like a typical type 1 diabetic.  It really has the doctors stumped.  There is talk of other rare forms of diabetes (Did you know that there are more than 2 types of diabetes even?!?!?!)

Day 3 in hospital... Feb 7, 2014
She looked so tiny in their full sized single beds

We are heading back to Adelaide April 7th to see the endocrinologist again and discuss her results.  I'm assuming she will have another blood test called a HBa1C which gives you an average of her blood sugar levels over the previous 3 months.  It's a great test in theory, but when you have one with fluctuating levels like Miss A, the highs and lows can cross each other out and the results appear normal, when the fact is she has out of control levels... 

Out of hospital and on our way home!
All smiles at the Keith playground. Feb 8, 2014

So for now, lots of patience, taking each day as it comes and following through on all the appointments and hoping that someone has a magic wand somewhere and can conjour up an explanation or even a diagnosis for our little miss!!!

Taking Time to Breathe...

This year is going to be HUGE.  It has the potential to be life changing.  Not necessarily a good or bad thing... life changing in so much that we're expected to be walking out with a diagnosis that will effect Aerynn for the rest of her life. 

She wont be the first, she wont be the last... but she is our little girl who is being battered by this disease so it has long reaching and big effects on our lives, our emotions and we need to adjust.

I was just "reminded" by a relative that we are not the only people in the world who have issues.  I know that.  I get that.. I have never ever EVER said, pretended put forward etc etc that we are the only people who have issues.  I am taken aback that anyone feels they need to remind me of this.  For someone close to say it then apparently it must be what we portray to the outside word.  I don't know.  I don't know if this comment was made out of spite, anger or love.  I'd like to think the latter seeing as it was made by a close relative, but stranger things have happened.

So I'm taking a bit of a break from online world.  There is so much nastiness floating around ant to be honest I really need a break, some time for me.  My "word" for the year is *breathe* in so much as I need to remind myself to stop, relax and breathe and then re-collect and move on.  So I'm taking this time as my time to stop, take time out from the online world and to breathe... 


Getting some inner strength back before next weeks trip and appointments and to recollect ourselves before meeting Aerynns endocrinologist and surgical team in person up in Adelaide.  

 

Yes, I said surgical team.  We (well Nathan) misread the letter we received from the hospital.  Aerynns appointment next week is not with the endocrinologist, instead with the surgical team who will be repairing her hernia! 

To be honest, I'm not disappointed in the error.  Aerynn has started toilet training and as a result she is not wearing her nappies full time anymore which means she has lost some support around the are of her hernia.  It is now protruding most of the time and has almost tripled in size since we first noticed it a couple of months ago :(  She has also started complaining about having tummy pains.  I'm not certain if the pains are related, but they seem to get worse when she has had obvious large mass protrusions from her hernia in the hours before hand.  It could be a co-inky-dink but I'd like to get it checked ASAP and repair organised. 

 

So Adelaide is a doubly, tripley... no, actually, even more of a nervous time for us.  We knew the minute we were told the lump was a hernia that she would need surgery... that time is getting closer!!!  I know it's nothing major, it's very common and usually only day surgery, but it's still surgery!!!  It's (as I said before) our little girl, she has other associated health complications that need to be monitored with the surgery and heck...  She's our daughter and it's only natural for a parent to be concerned, right??  Add to that meeting the Dr who will be the one making the decisions about her health with the onset of her suspected Type 1 Diabetes.  This is the Dr who has already been in consultations with the paediatrician here in The Mount.  She is apparently a research clinician and interested in the hormonal side of the endocrine system, could be interesting to have a chat with her over Aerynns short stature as well to see if she has any suggestions in regards to that ;)    Oh and not to mention OUR FIRST (real) TIME IN ADELAIDE!!!!!  Eeeeekkk!!!!  Driving to a new city, no idea where we are going and all that... nerve wracking for me LOL  I'm more of a creature of habit than I thought so it seems ;)  So we really need to relax, regroup, get our heads in the right place and work out what we are doing before next Tuesday rolls around and we find ourselves heading off for yet a new "adventure" ;)

oh and did I mention, Miss A has also decided now is a good time to start spiking temps, get tummy pains and have gastro like symptoms with moderately high BGL's??  No???  well.. that's our Aerynn, picking the right time to get sick ;)  LOL

Merry Christmas....

Happy New Year

and
Off to Adelaide we go!!!

It's been a busy Christmas and new year season.  With Miss Aerynns health being so topsy turvy and us not knowing what is happening it's really killed a lot of the jovial feelings we were hoping to foster.

We were hoping to have a HUGE Christmas and New Year season and celebrate with a heap of deliciously unhealthy foods and lashings of naughtiness on top of naughty, but in the end our hearts were not in it. 

Christmas 2013
Our Bricknell Brats

I know some may see it as being negative.  The truth is it just is what it is, this is our reality.  we tried to force things but it felt wrong.  So instead we floated around and did what time, inclination and the kidlets would allow.  The Christmas tree went up 3 days before Christmas and is currently in the process of being pulled back down again.  The children are playing happily with their respective Christmas gifts and having a lovely time....  meanwhile hubby and I are in the background trying to soak it all in, enjoy seeing the kids play and not worry, whilst we do the worry for them.

It's been extra tough not having family with us this year.  But skype and facetime have helped ease what distance has taken away. Toby and Aerynn both fight over who will talk to Nanny on Facetime - both love the attention and the camera ;) 

So it is the new year in just a few more sleeps.  The new year is kinda scary at the moment...  Will it being with it the answers we have been so desperate for? Will it being a diagnosis of Type 1 diabetes as expected or will the endocrinologists come up with some other explanation for Aerynns brittle blood sugar levels?  And the fear I have shadowing me all the time... when will Aerynn get sick enough for treatment for these high blood sugar levels, or even will she (yes I still live in hope that she will "normalise"

We had a call from the Adelaide endocrinologist the week before Christmas wanting us to be there within 2 days for an appointment.  It was impossible.  At the time both our cars were playing up so there was no way we were going to be able to physically make it even if it wasn't a case of horrible timing. Instead now we head up January 15th for an appointment on the morning of the 16th.  It's a little daunting in that it is a new set of doctors, a new hospital to attend...  Fresh eyes means fresh ideas and hopefully answers...  this HAS to be good!!!  Just has to be a new opportunity to work out what is happening :)  I'm trying to be positive... trying trying trying :)  We are being thankful that for the moment our little Miss is having more good days than bad..  her sugars are still up and down like a yo-yo, but we're accepting of that now, that's just Aerynn ;) 

So heading into the new year we are being positive!  Miss A has put on a great amount of weight this year in comparison to the previous 12 months, her growth in height is still slower than average, but she has still recorded a good gain compared to last year :)  She has shown she is incredibly bright and doesn't miss a thing!  her speech and comprehension is beyond her age and she has become a regular little social butterfly.  She has such character that most who meet her fall instantly in love with her twinkling eyes and contagious smile... she really is a little go getter... She is still in pre-walker shoes (gone from a size 1 pre-walker to a size 4-5 though!!!) and still hasn't got a proper full head of hair, it's still wispy fine and you can see her scalp through it, however what she has got has finally grown in length so she looks like a little girl :) and she is now able to wear all the gorgeous size 1 clothes we have had in storage waiting for her all this time :)  She is able to now eat most foods, growing at her own rate, she is thriving for all intents and purposes.  Aerynn is taking all her tests, appointments and her hospital stays in her stride and we are in awe on how well she is coping in comparison to us adults!  LOL  I know she has no concept on what it all means yet, and we are hoping that no matter what her ultimate diagnosis that it wont be too big a deal for her as she has been dealing with this from day one...  Just hoping that we are edging ever so much closer to having answers for her, answers for her siblings who are struggling from time to time with things, and also for us so we know the best way to move forward not just for Aerynn or our family but for everyone who loves and cares for our little girl... So with that we say  Bring on 2014...  :)  it just HAS to be better than 2013... seriously, it has to be!!!

Struggling with the "D" word

It's petty... it's just a word but we are struggling to get our heads around it.

I've conversed with people about this word, fought had against stereotypes concerning it and cried tears for those lost due to it or fighting hard to fend it off...

It's not new to me.

but for some reason I never ever thought it would be something we are dealing with, and will be dealing with...

Something we will be dealing with 

 

Each. 

And. 

Every. 

Day. 

Of. 

Our. 

Daughters. 

Life

I know it's callous, but I thought it was something that other people dealt with...

we were somehow immune...  

we'd never have to even think about it...

Think again

It's here

It's making my little girl sick

She needs to get sick before she can get better

Diabetes SUCKS!!!!

If I Could Turn Back time....

If only I could find a way....

Honestly, I know it's cliche but I don't want to go too far back, just a few days, mere hours in the scheme of things...  But I can't.

They say knowledge is power... at the moment I'm saying ignorance is bliss... Well was....

We finally got some blood sugar test strips for Aerynns BSL meter.  We tested... and tested again... and again... and again... 

I don't know what it means in the long run but Aerynns blood sugars are swinging.  They're not showing the dramatic lows we expected.  Rather lows here, lows there and what surpised us all is highs! She is recording levels that hang around 6.6-7.9's most of the time, they have dropped right down to 3.2 and 3.5 on a number of occasions and then soared up to 10.6! It probably doesn't mean much to most people.  I thought our first reading of 6.1 was good (I even posted on facebook at how happy I was at that reading for a midnight read 5 hours after eating) but apparently blood sugar levels should be under 5.  I was celebrating a slightly high reading *doh*

I spent most of Thursday and Friday on the phone (or more to the point waiting on call backs!!!) to Aerynns GP and Paed trying to work out where we are going from here.  Her GP is quite concerned and wants her to be seen ASAP, her Paed appears concerned as well and would like her seen by an endocrinologist whilst we are at Melbourne in a couple of days.  I don't know if that is going to happen though as time is running out in getting an appointment. 

So for now we continue to test, log, notorise EVERYTHING - as in sniffles, sleeps, food, drinking, headaches, listlessness, over-excitements, injuries, upset, tantrums etc etc etc.. basically anything that can have a result on blood sugars needs to be recorded as well as her tests.

It breaks my heart to hear her say to me "no sorry" after I kept apologising every time she cried after pricking her finger or toes...  It's tearing me apart that she knows what pain is, even though it's little pains, it's discomfort a child shouldn't have to know.  She has started to hide her hands against her body when she sees the test kit come out.  Life shouldn't be like this but for so many kidlets it is.  And I am hoping that Aerynn wont have to worry about it too much longer, but for now we trudge on and try to work past the emotional side of that something like this brings with it.  I'm trying not to worry but take each day, hour, minute etc at a time.  Hoping that this is just a little hiccup and something that can be sorted out nice and easily...

Wishing I could turn back time to when Aerynn had no idea what a lancet was, or what a drop of blood is or that her mummy is ever so sorry she is having to hurt her... wishing I could turn back time to when we simply thought there was something "odd" not thinking that anything would really come of it... back to a time where I had no idea that 6.1 was a slightly elevated BSL result...

Turning back time is not possible.   We have results now so ostrich syndrome (AKA sticking head in the sand AKA ignoring the problem and hoping it will go away) is no longer possible... 

Wishing I could turn back time, knowing I can't and feeling relieved that these symptoms aren't in my head, I'm not exaggerating them and knowing that we may have some answers soon, but at the same time incredibly scared that these answers may have long term implications and other health complications.

If only I could turn back time...

Ignorance is bliss, knowledge is power... but with knowledge comes responsibility...

**scared**

Something's not quite right...

I'm sitting here with my heart in my throat deeply worried for our little girl.

October 6, 2013.  Aerynn in the paddock behind our house in Nangwarry, South Australia

Something is seriously not right with her and to be quite frank I'm almost too scared to let my exhausted brain out for a wander to try and work out what it is.  I'm falling back at the mercy of the doctors now.  Aerynn has developed migraines, disorientation and generally not being "with it"  She swings from being happy and "normal" one minute to pale, clammy and unwell the next.  She can become aggressive when in the disorientated phases and start vomiting during them and become incredibly distressed.  She has no control over these changes.  I have no control over my fear of them. 

Right now it is 10.43am on a sunny Friday morning.  Aerynn woke at 6am, disorientated, pale, screaming.  She crawled into our bed and had 450ml of her neocate and then started becoming super aggressive towards me and Toby.  10 minutes later she calmed down and fell asleep.  She slept there for 35 minutes, woke, finished off her sippy cup (approximately 250ml more neocate) and went straight back to sleep.  Since then she has awoken 2 more times, grizzled, cried and fallen back to sleep. she is now onto "nap" number 5 for the morning.  She has no temperature, her cheeks are now pinking out but otherwise I can see no reason for her needing to sleep when she usually only has an afternoon nap.  I'm worried. 

Luckily we have a doctor appointment this afternoon...

This mornings activities are becoming more and more frequent.  She is still waking around 3 times overnight for sippy or just a snuggle and resettle. 

Since recovering from her measles (which took almost 2 weeks to clear all the spots and symptoms!!) Aerynn's health has not really picked up.  I can't pin-point exactly what is wrong which is why wen we saw the paed last week I was certain she was going to say it was just me, I was depressed or seeing things or just a mental case.  Honestly, I was prepared to be told it was all in my head.  Instead she looked at me and said that it is real.  Something is going on with our little girl. 

At the moment we are suspecting she may be getting the headaches due to possible hypoglycaemia.  Basically low blood sugars.  It shouldn't happen in a child but sometimes it does.  She said there may be no reason for it, it could just be another "it's just Aerynn" situation.  We have purchased a blood glucose monitor so we can start testing her during the day to keep an eye on her and see if there is any patterns emerging.  When he gets disorientated and headachey we have to test her and I will also be testing night and morning.  The other possibility on the table is epilepsy.  We have epilepsy on both sides of our family.  Nathan (Aerynns daddy) had epilepsy as a child so it is a link.  I don't really want to think of what other options there are that could explain her current situation, these two are enough to be sending my head in a spin!

Now blood glucose monitors, testing strips etc etc are a little bit of a headache.  Because we are not looking at a diagnosis of diabetes only possible hypoglycaemia we do not get any subsadies or private health reimbursments.  Even though we have private health and it covers meters and the peripherals that go with them unless we have a formal diagnosis of diabetes we will get no assistance.  It really suck!  I know $50 for a meter isn't that bad, but the ongoing costs are huge!  It's $65 for one box of 100 test strips.  Considering we will be testing her 3 times a day most days, and at least twice a day - not to mention if she has an "episode" or we make an error etc etc, one pack of 100 strips is going to last an average of a month.  We are also monitoring her ketones as this could be an explanation as to why she has been dropping weight so dramatically when she has been sick.  We got a specific monitor which also tests ketones, and the strips for these are $9 for 10.  I can see if this is an ongoing thing for her that it's going to be a very expensive excercise.  the ironic thing is if she was diabetic the strips would cost us $2.10 for 100 - the ketone strips are not subsidised but I'll not complain at a $9 hit if we were only paying $2.10 for strips - it's a big difference to the $64!!! add to that all her meters, lancets and the ketone strips would be reimbursable or at the very least partly funded via our health insurance.  We are so blessed in the fact we have friends who are able to help us out with getting us strips for her meters though :)  Also dip sticks so we can see if she is dropping ketones in her urine before using the blood ketone strips.  I honestly don't want to think where we would be trying to fund this if we didn't have these friends and family to help - so if you're reading this THANK YOU!!!!

Besides the "I can't put my finger on it" illness, Aerynn has also been diagnosed with having an inguinal hernia.  I also suspect Dommy to have one as well just to join in the fun I'm sure :/  So to add to the pile of everything we are now awaiting on seeing a general surgeon to organise surgery to correct this.  It will either be done in Melbourne or if they can't fit her in in Warnambool on their 3 monthly visiting roster.  She is already having issues with the hernia bulging quite dramatically at times.  So far it has reduced ok, but the issue is where we live if it doesn't reduce and becomes a medical emergency then we have to fly her to Adelaide for surgery.  There are no facilities here in Mount Gambier (which happens to be the second biggest city here in South Australia) for children under the age of 4 to be anaethetised.  We have no paediatric services other than basic band aid repairs...  It's a little daunting to be honest.  But something the locals have been accustomed to so complaining and fighting for better services seems fruitless.  Just a grin and bear it kind of thing. 

October 6, 2013  Aerynn catching bubbles.  30 minutes later she was flat, listless and low :(

Soooooo from here, GP this afternoon to see if we can rule out anything causing Aerynns current sleepy nature.  Waiting on Mr Postie to deliver some blood glucose test strips and off to Melbourne in 10 days to see the gastroenterologist and hopefully general surgeon.  Possibly an admission to have a hernia repair - we wont know until we get there!

Measles!!!

Seriously, how unlucky can we get?  Aerynn has been diagnosed with measles :( 

                                             
 

The whole family has been down and out with the flu and then late last week I noticed a rash creeping over Aerynns neck, behind her ears, across her face and down her back.  Within an hour she had noticeable spots on her tummy.  She has been fighting illness after illness for weeks on end.  I just couldn't believe what I was seeing!  This all coming on he tail of a health department warning about a measles outbreak in Melbourne.  Surely it couldn't be happening here in front of out eyes...

Well, it was :(  Aerynn developed a classic rash, cough, conjunctivitis and fevers.  She was completely miserable :(  Even her tiny little toes and fingers had spots and rashes on them!  The rash was something I've never seen on my kidlets.  It was a raised red angry cluster of itchy dots from head to tow and there appeared to be a subcutaneous rash that was like a stain of the bumpy itchy rash...As I type this her red bumpy rash is starting to fade leaving only the staining on her skin.  Just a bit of a reminder that these last few days have been real and that we now need to be on the alert for Toby developing measles!

We have been super lucky.  The only real "complication" Aerynn had was some breathing difficulties with her cough and migraines.  We are still on the alert.  She isn't completely over it yet.  She still complains of the occasional headache which has be on edge as if another migraine appears we need to get her to hospital as there could be associated life threatening health implications still. 

Anyways, this is probably all a jumbled mess.  I'm still in the grips of the flu myself whilst trying to nurse the kids through their various illnesses so extremely sleep deprived and physically exhausted.  Here's for the next week of everyone recovering well and NO MORE BUGS PLEASE!!!