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!!!