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!!!!