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