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!!!

Still down...

I've all but lost track on how long it has been since Aerynn became ill.  She still hasn't recovered, nor have we had a decent quarantine period to allow her back out in the public.  We were back at the GP last Friday with a middle ear infection in both ears.  2 days on antibiotics and all the hard work we have done to get her skin clear and as sore free as possible has already been undone.  Her gut appears to have been stripped and food is going straight through her again, she has developed blisters on her skin which are having the tops burned off and bleeding no matter how quickly we change her nappies.  I'm feeling jaded but have to keep pushing through... 

She has at least 2 weeks on the antibitotics in total and then we will start trying to build her up and starting the 2 weeks quarantine again.  At this stage her birthday party we are trying to plan is still another month away :/  It's so frustrating to see time race by while she tries to beat these bugs..  But at the same time the bugs aren't anything that any other child really struggles too much with.  I feel like a big phoney complaining that she has a minor cold or an ear infection, but at the same time her symptoms and recovery time are blown out of proportion compared to a regular child...  Such a hard place to be in. 

I also have had the other children coming down with their "regular" bugs that are communicated child to child at school.  Toby is cutting his bottom two teeth and clingy as a result, Dommy is currently sleeping on the couch with temps in the high 39*-40*C and completely miserable, Kahli had last friday off school with a gastro complaint, William has the same one today...  Just waiting now for Aleks to come down with something so they all can cross this week of hell off my list LOL

So if I'm quiet again it's not because we've dropped off the face of the planet, we're just busy busy nursing out children through the next few weeks of icky germs and bug infestations...

Cake Smash!!!

We did it!!! there was a period of sunshine in a relatively bleak wet old winters day so we took the opportunity to dress Aerynn up (well you know what I mean), whip some cream and do a cake smash!!!

  

We had some issues, the biggest being our little girl has become somewhat of a little princess.  She refused to get her hands into the cake!!!

 

So we needed to get her a spoon to start eating it!  The closest she came to voluntarily "smashing" her cake was to run her fingers through the cream.

 Aleks came along and smashed her hand into the cream - much to Miss A's disgust (and boy did the neighbourhood hear about that!!!  LOL)

She also has developed an acute knowledge on where all the bugs are in the world and screams at the thought of one coming near her - Princess complex I'm sure :/

Despite all this I got some shots.  I wanted it to look like she was in her own little pixie type world enjoying her very own cake...  Not sure if I achieved it but loving the piccies anyways :D

Happy Second Birthday!!

Happy Second Birthday Miss Aerynn.  I know it was officially a few days ago, but I've only just stolen the 5 minutes to pop on here and write a little something.  For your birthday you were still unwell from a virus that wiped you out for 5 weeks now.  You're slowly regaining your strength but there are still purple shadows under your eyes and your face is a ghostly shade of white underneath the occasional flushes of colour we are now seeing come back to you. 

Aerynn, this year you celebrated your birthday with you 5 other siblings.  However you slept through the morning pre-school rush so we celebrated with you after all your older brothers and sister finished with school and daddy got home from work.  It was around 4.30pm that we gave you your gifts.  You weren't sure what to do with the wrapping paper at first but worked it out in the end - it was for ripping into confetti of course - silly mummy who thought it looked better in one piece rather than all over the floor :/ 

 

Aerynn, you were thrilled to discover under the wrapping paper (or confetti as you preferred it to be) you were spoiled with a talking "Lambie" from one of your favourite TV shows (Doc McStuffin) who is always asking you if you need a hug from Kahli.  William gave you a selection of dress up clothes and some pretties (pretend jewelry) Domenik, Aleks and Toby worked together with their gifts for you.  Dommy gave you a new baby doll, which is slightly bigger than your other dolls - he's hoping you'll grow into this one.  Aleks gave you some clothing and doll accessories and Toby a nappy bag with some cloth nappies for dolly (well mummy still needs to make them - it's kinda hard to sew things when you've been hanging off her these past 5 weeks - it WILL get done!!) and a crochet blankie for your dolls (at least mummy got one thing completed) and Mummy and daddy gave you a hamper of Minnie Mouse bits and pieces including the cutest little outfit :) 

All in all you had a what appeared to be a wonderful day.  You had lots of naps and lots of smiles, "huggems", giggles and snuggles. 

We are all praying that this year which lies ahead for you is one which is a lot easier to journey through.  We're no longer asking for answers but just for the good days to outweigh the bad and for many many happy memories to be made. 

Loving you forever and always Miss A, keep on smiling and sharing your "huggems" and being the gorgeous little pocket rocket you are :)

Love Mummy

xxx

It's a silly thing to think but I think I'll do it...

After last years reaction I am probably a little mad to think about doing another cake smash with Aerynn but I think I'm going to give it another go.  She didn't really have much clue last year what it was all about as she wasn't allowed to eat anything at that stage really, this time though - she knows what food is and LOVES to eat!  I know we're probably heading down reaction valley again that's my only guilty thought about it. 

Why we have to double think things that should be everyday joys is really frustrating to me... I'll see how tomorrow pans out though, because if it's going to happen it will be happening tomorrow!! 

The Day after the Night before...

Our beautiful girl ready to visit the Dr today.
It's hard to believe
she is almost 2 years old!

It's such a breath of fresh air to have a GP who is taking us seriously for a change.  Even though she doesn't seem to be able to distinguish the difference between dwarfism and achondroplasia (the same as saying all parts of a dinner set are called bowls), but I can overlook that I guess, at least she believes Aerynn is unwell - unlike our previous GP :/  LOL

Today Toby had an appointment for his 4 month check (which he passed beautifully) and she dropped on by to check on Aerynn.  She has ordered more stool samples to be tested and offered to prescribe antibiotics to see if they would work.  I declined the antibiotics knowing what a low dose does to her.  If she has an inflamed bowel the last thing she needs is another irritant - thank goodness she agreed and didnt try to force the issue ;)  BUT she wants us to consider going back to her specialist teams back in Melbourne ASAP.  Even before her next lot of appointment in 3 weeks. 

I'm actually starting to feel a little bit of de-ja-vu as that was how Aerynns second hospitalisation in September last year started off...  I really REALLY don't feel up to another hospitalisation like last time.  If they admit her I hope it would be more than another fishing expedition that goes on and on and on and still results in no answers.  There's nothing more frustrating than to be offered the world but walk away with a clump of dirt.

Aerynn with our equally little,
but fully grown cat Portia
who is a whopping {sarcasm} 2.8kg!!!

Anyhoos, back to today.  Little miss had a couple of periods of energy and fun in her.  I took advantage of one of those periods to get a few photos of her in her new dress/top.  She is still as white as a sheet with deep purple circles around her eyes.  Aleks even noted how bad she is looking at the moment - big call for a teenage boy to pic up on something like that...  We had her weighed and measured today.  She's now 10.6kilo (post a 300ml neocate bottle) and 78cm tall.  Toby was also weighed and measured, and at 4 months of age he is the same length and weight Aerynn was on her first birthday!  I now see why we got all the stares and comments on her size!!!  It is still difficult for me to comprehend that her current health and growth is totally artificially supported...  I don't want to even think about where we would be without her precious formula allowing her to take on so many calories and nutrients... So thankful that we live in the times we do at the moment... 15-20 years earlier and I don't think we'd have our little girl home with us now...

We've had a reasonably ok day, mostly flat but she perked up when daddy offered her a donut - hey, sugar, oils, carbs.. maybe we can gain that lost weight back hahaha  Shame she only sucked off the sugar on top :P  This evening she was hard to settle.  Very restless and crying out in her sleep.  She's in a sound sleep as I type this and I'm praying that she wakes well for her midnight formula and re-settles ok **everything crossed** 

Deteriorated again...

It's been a super rough 12 hours. Aerynn is still spiking the occasional temperature and her gastrointestinal symptoms have become much worse. She has gone from having liquid and jelly like stools to being almost constipated with mucous and blood. She is doubling over and screaming in pain and fear for the 25-30 minutes it takes to evacuate her bowels - picture a woman in final stages if labour and you have our Aerynn. 

I'm trying to be brave and calm for her but it is tearing me up inside. I shouldn't be having to take my daughters hands and help her stand but at the same time be doubled over in order to use her bowels; be looking into her tear filled eyes that are full of questions and pain, she doesn't understand and I can't answer her questions... We have no answers. Where in the world does anyone think that it is ok to go I like this? I wish we had better paediatrics health facilities here. we shouldn't have to weigh up is it worth traveling the 2-2.5 hours to get our daughter checked out by a facility we trust. For that matter there is no way I can get her into the car when she is having these symptoms so I couldn't even get her there if I tried :( 

She has just fallen into a restless sleep beside me. I have Toby on my chest. He was woken by her screams. He too is freshly asleep. I'll pop him into bed and come back and snuggle Aerynn and try to get some sleep as well. At the moment I am averaging 2-3 hours of sleep of a night. It's been this way since Aerynn took ill over 3 weeks ago. I'm absolutely physically exhausted and emotionally shattered but there is no choice but to put one foot after the other and trudge on... 

I'm wishing we had better paediatrics facilities, I wish my baby girl had answers, I pray every night and day that Aerynn will wake healthy and smiling but fir the immediate future we know that wont be happening... Instead I hope for happy dreams, and some decent sleep for us all - that at least may be possible ;)

Promised Update!!

There's not that much really to say to be honest.  We're coasting along, riding out the storms and trying to enjoy the smooth sailing when it comes.  Truth be told we've kind of slipped into our own routine.  We wake up, deal with her nappies, make sure she has her neocate and get on with the day.  Cleaning, soothing, changing, feeding, cleaning again, bathing, changing, balming, ointmenting, moisturising, soothing, rocking, feeding, more cleaning and constantly watching... I didn't realise how much time we put into her care every day until I was asked to apply for some assistance and having to notorise and pull our day apart and it hit me, I'm putting more care into Aerynn daily that we are for our newborn - I didn't really see how much we had adjusted in order to keep Aerynn safe, healthy and thriving!  It's worth every minute though :)  

This last 2 weeks, despite being ill Aerynn has grown up so much developmentally.  She is such a little chatterbox.  Now talking in full sentences, asking questions, making comments on things and oh my has she got an opinion on everything!! Such a bright little button. 

She has had a little bit of weight and height growth.  She is just tipping the 3%ile line on growth charts.  I didn't really pay attention to the numbers at the paeds room as I was juggling an overtired baby boy whilst trying to talk to the Dr - but promise I will get her book out tomorrow and check them in here ;) 

In out last trip to Melbourne to see her specialists (in April) the dermatology team confirmed the skin biopsies didn't show anything definitive.  They prescribed her a long course of low dose antibotics to see if that may help reduce the lesions on her bottom.  All it seemed to do was cause further gut irritation instead.  She ended up being take off the antibiotics after a week of diarhoea and constant nappy irritation.  We upped her skincare regime to include a strong antibacterial ointment as well as a steroid cream.  It has been working.  We have had now around a week where she has had relatively clear skin!  Unfortunately all the good work becomes undone with a reaction or illness usually, BUT we have seen improvement and know that these lesions aren't permanent and hopefully there will be an end in sight for them :)  Little Miss A now understands however that these lesions hurt.  Being clear of the discomfort is all good, but once the "norm" changed she now knows what it is like to have reasonably healthy skin so when they come back it's a big issue for us all now.  The gastrologist confirmed that Aerynn definitely has allergies.  He is happy with the way we are managing her diet and health.  She still has periods with blood in the bowel, constantly has mucous and irritation but he is putting that down to her general food intolerances and dairy allergy - hopefully something we can resolve in time.  He wants us to try alternative milk products, such as nut milks after she has continued to fail soy challenges. 

In regards to a full and proper diagnosis we've been advised that we can continue testing over and over but we may still not end up with any firm answers as to what and why Aerynn is the way she is.  It's hard to accept this.  We've been hanging on for answers for so long,  however when the answers weren't coming our way I think deep down we knew this was a possibility. For the time being we are to still continue as though she may have CHH and await the final results from the most recent genetic testing.

Our paed supports our application for assistance (I hate doing it) even if it is just for a heath care card to assist with payment for her prescribed medications and formula.  She said we have a long term situation and she has no idea how we keep going on...  Thing is, what else can we do than to continue?  There is no way we could ever give up caring for her, I don't understand what people mean when they say that. 

So in the run up to our baby girls second birthday we are trying to remain calm, allow her to be the girl she is going to be and try not to worry too much about the future.  Ce Sera Sera..

Aerynns main source of nutrition is still her vanilla neocate advance formula.  We are mixing up her foods and she is tolerating it better when we mix  it rather than concentrate on one food type at a time.  We have recently acquired a thermomix in order to help reduce any contaminants and additives from her foods that could be irritating her gut and her immune system.  Being able to make her food and mill her grains, make nut-milks etc is hopefully going to help build a repertoire of food we know for certain is clean and good for her to eat and tolerate :)

Aerynn has confirmed for us in the past weeks that her immune system is far from the best.  She has been knocked over by what our paed now suspects is an influenza strain.  We did originally suspect it was a common cold then another virus rolling in on it's coat tails and then another whilst her system was depressed.  Either way, it's a simple disease she should have kicked in a few days, not still be in it's grasp and 3 weeks later.  She spent 13 days with temperatures soaring over 40*C and rarely dropping below 39*C.  Listless and pale she has lost over 1kilo of precious weight through refusing food, vomiting and diarhoea.  We can now feel her ribs and spine through her clothing.  Even now we're still dealing with spiking temperatures and a miserable baby girl 3 weeks into this illness.  It's going to take her a long time to get over this.  Maybe even months.  For the short term we have at least 2 weeks of keeping her as secluded from the public as possible once she is over the illness and temps to give her some time to recuperate before her immune system is introduced to any more bugs... quarantine to protect her.  It has meant cancelling her birthday festivities for the moment, but once she is better we'll be celebrating big time - she missed a proper first birthday party, I'm determined she will have a decent birthday and a party this year!!!

Last week, trying to smile despite being very ill
and running a high temp 2 weeks straight... such a brave little poppet <3

Topping it off last Monday she woke at 1am power vomiting and covered in welts.  Despite administering an antihistamine the welts continued to spread and she had some facial swelling and further gastro symptoms.  The ambulance took her to hospital fearing she was in the grip of an anaphylactic reaction.  By the time they reached the hosptial the antihistamine has started to work and the ER doctor released her after only doing basic obs.  We're totally disgusted with the lack of monitoring or due care in her treatment by the local hospital.  It really highlights to us that we are doing the right thing by moving her care to the Victorian health system.  Our GP has ruled it an anaphylactic reaction and has requested further testing which will possibly result in another hospitalisation in the RCH (Melb) however our paed is suggesting we hope it's a case of viral urticaria and continue as we have been until another such reaction occurs.  I'm torn between the two.  I can't pinpoint what she has been exposed to to create an ana reaction if that is what it is, however to say it's urticaria and continue is a little risky knowing we live 30 minutes away from the hospital - in fact it took the ambulance 35 minutes to get here last Monday due to the kangaroos on the road and heavy fog.  Just another piece of the puzzle we need to weigh up in the mystery that is our Aerynn.. for the moment I just want her healthy and then we will work out where and what we are doing.  She has more appointments in Melbourne at the end of this month so we'll see what we can get organised with her medical team there then. 

So that's pretty much it for the moment I think.  I will try to keep more up to date now things are settling in regards to the new baby and household adjusting ;)  Of course I'll need to share her birthday adventures this week :)  2 years, so much has happened in such a little amount of time...  She has turned our world upside down, and despite it all she is such a little ray of sunshine xxx

Delayed...

The promised update has been delayed.  Aerynn has been extremely ill these past 12 days with a suspected virus and this morning it seems her immune system had enough of everything and she has just been taken to hospital by ambulance with a suspected anaphylactic reaction.  I'm hoping to get in to be with her soon (Nathan went with her as they were unable to transport Toby) and find out what is happening. 

Update Coming!

It's been one hectic first half of 2013!  Not only with Aerynn but in our family... we've welcomed Aerynns little brother in late March so I have been juggling late pregnancy, newborn as well as Miss Aerynns health...  Please forgive me for the lack in updates, BUT I promise to set aside some time tomorrow to update and get back on track with this blog in particular...

For now...

Our family welcomes Tobias Oscar <3

As Suspected....

We did Aerynns weight and measures today and I have to say I'm not surprised.  She has registered slight increases in height, weight is increasing quite well still as is her head circumference.  I'm awaiting a phone consultation with her Paediatrican now to see where we go from here. 

Her stats as of today at 19 months:

Length 77cm

Weight 9.4kg

Head Circ 48cm

Her lower limbs are starting to look noticeably bowed and her head shape is starting to look a little unusual and has drawn some comments regarding the bossing of her forehead and being asked if she has "something wrong"...  I'm ok now with the questioning, but would love to finally have a diagnosis for certain so we can move forward knowing where we stand... 

Muddling Along

There's not much to really report at the moment.. Everything is still the same...  Trying foods and having mixed results - no clear passes that we can speak of, some clear failures (such as carrots today - All over body rash and vomiting - ahh fun!!!) and still a bright button of a little girl in and around it all.

Totally innocent, she doesn't deserve this hand that life has dealt her

 Aerynn in herself has become a very independent little miss over the past weeks.  She is adjusting really well to Dommy going to kindy and having time at home playing by herself or soaking up mums individual attention.  She has also started showing signs of the "Bricknell Temper"  and that the terrible twos are just around the corner - yes, 19 months old almost - where on earth has the time gone to!?!?!  She has started climbing, jumping, saying "no" (lol) and independent role playing (she loves dress ups!!!!)  <3

Bubble play, Feb 2013

Some days I look at her and think that she has grown somewhat, or that her hair has gained some thickness or length or even that she has chubbed up even more, but I can't be certain of any of that as the next day I think she's still the same.  We will have a weight and measure done next week and a telephone consult with her paediatrician to track everything and make some tentative plans for the next month or two. 

Fast asleep, oh so peaceful <3

 One little victory we have had is a few nights she has slept from midnight to 6am!!!  She used to sleep so well as a baby but once she started becoming ill that was one of the first things to suffer.  She has been waking every 4 hours to have her "ippy" (sippy cup) of formula and then a little play before falling back to sleep...  The ability to sleep through we hope will increase and is a good sign for her :) 

So that's it for now...  a little victory here and there but mostly same old same old...  We'll see what next weeks stats show with her physical growth and see what more mischief the little Miss can get up to in the meantime ;)

"She's a Medical Enigma"

"A Medical Enigma" That's the statement we were met with when seeing our paed and trying to put all the pieces together from our last run of appointments and tests in Melbourne in these preceding weeks.  Apparently our little Aerynn has all the specialists scratching their heads and admitting they've no idea what is going on.

Sampling the sand at the sand pit "yummy"!

Basically we walked out of the RCH feeling incredibly deflated, confused and concerned with threats of re-admitting our baby girl back for long term trials and treatments after being accused of "not pushing her hard enough" in regards to food challenges and dealing with her reactions.  To say this really stung would be an understatement.  We were also told at one stage her reactions were "normal" and "expected" in a child of her age :/  Advised that we were to introduce mixed foods together to see if that will make her tolerate them better but at the same time only introduce at a slow rate and individual foods... Yes, confusing, contradictory and lots of blame put back on our shoulders, hence not updating here until we knew more and had clarity through the eyes of our paediatrician who could hopefully read through the reports and try to make clear for us what we were really being told.  And basically, what we were being told is that they have no idea, we're all clutching at straws and hoping for the best.  Still doesn't explain the contradictory information of how we were left up in the air, but I can imagine the frustration when these doctors are expected to have all the answers yet a whole team of them can't seem to work together and come up with anything for Aerynn.  Mind you, they've still not communicated with the genetics team from what we can work out either, so maybe if they got together there they may come up with something??  Not sure, just an idea perhaps :P

So, from todays appointment, Miss A is still putting on weight but not grown a millimeter in the last 8 weeks.  She is now 9.2kilo and 76cm.  This increase in weight but not growth apparently supports the prognosis of a dwarfism diagnosis. She is developmentally doing incredibly well and the paed is very happy with how far she has come in the past 6 or so months since we finally were able to secure a referral to a paediatrican.  I still struggle to understand how the local doctors here were satisfied with her growth and general health and would hate to know where we would be if we hadn't fought to get here!!!  6 months ago she was very fragile and weak, today if you saw her on the street (and not know her current situation) you'd not think there was anything wrong with her, she's active, chatty, robust and has colour in her cheeks :) 

 

Back to the Melbourne visit...  

Time out in the playground between appointments

No reports have come through from her tests as yet.  Our paed   following up on these urgently.After our last visit with the geneticist in Warnambool back in November he advised our paed that he is incredibly keen to follow her through to a diagnosis - even if it means in 5 or so years time there is a syndrome named after her (words from the paed!!)  Aerynn  has a LOT of genetic markers which is apparently exciting for them.  So far the closest thing that fits her is Cartlidge-Hair Hypoplasia, but they are still not discounting Russell-Silver Syndrome.  Unfortunately genetic testing takes a long time to complete but hopefully we'll find out more soon.  We do have to keep an eye on her though in relation to her skeletal growth and formation as she appears to have visibly bowing starting with her lower limbs.  The x-rays taken last week (or was it the week before??) should be able to confirm if this is only visual or actually the start of a deformity in her limbs.

Being cheeky in the playground at the RCH

We also were finally introduced to the dermatology team to try and work out what is going on with the sores, blisters and ulcers on her bottom.  When an experienced dermatologist says they have never seen anything like it you know that something odd is happening.  Their first guess was it could be an allergic reaction, however Aerynn isn't testing positive to anything in relation to allergies.  As there was a fresh blister that came up in the hours preceding the examination they decided to do a couple of full thickness skin biopsies at the site of the blister, which happened to be on her cushie right butt cheek :(  It wasn't a pleasant experience at all.  Nathan had to leave the room as he hated seeing Aerynn screaming from the combination of being held down and pain...  We were strongly advised that there is a distinct possibility that we wont get any diagnosis from the biopsies, but after so long with this happening we needed to take the risks and see if we can get answers.  I had a phone call a couple of days ago to advise me they have some results from the samples, but no diagnosis.  They couldn't provide the results over the phone so we have an appointment in April to go back for a follow-up and to get the results.  There was nothing we can do to help whatever is going on, so it appears it is going to be a chronic condition with no ready cure or successful medical treatment.  We are to continue treating her as we are with the Aromababy Barrier Balm which is still the only product that goes anywhere near clearing the burns, sores and ulcers.

As a direct result form the barrage of tests performed in Melbourne Miss A now rebels against being sat, layed or even going near a dr's examination table :(  She remembers what happened, I suspect the skin biopsies are the ones she recalls the most, and associates the bed with tests and pain now :( It sure is going to make future examinations and appointments "interesting" to say the least :(

Playing with reflections and corners in the windows

Now back to our appointment today...  We are to continue trying to introduce foods as we have been. If we ever want her to be admitted to get some support we only need call the paed and she will organise an admission at Warnambool rather than going through the RCH again. This means she can see first hand and we will have support from someone who knows the full story - something we never really felt we received from the Melbourne hospital. The biggest concern currently while we await these results is that Aerynn has started to wean herself or at the very least reduce her intake of the neocate formula. She has dropped back to what is still an acceptable amt, but if she drops any further we could be in trouble if she hasn't have adequate safe foods introduced and tolerated by her body to maintain her current weight let alone continue to gain...  Our Paed believes this may be what the allergist in Melbourne was trying to say when she threatened us with another admission if we didn't push her little body any harder to get foods in, but our paed also agrees with me that we need to be careful to not push her to the point that she becomes very ill again, starts losing weight or refuses food altogether.  Just how hard is too hard is something we simply don't know and something that we as parents shouldn't be expected to work out and deal with - hence her offer to hospitalise in Warnambool if we start feeling too desperate. 

To make things easier for us in the coming months with things happening at home etc, we will be getting Aerynn weighed at our local child health nurse rooms and calling up for a phone appointment and going from there.  The next time she is seen by the paed will most likely be in late April when we head back down to the Melbourne RCH for more follow-up appointments and tests. 

So our immediate plan is to continue waiting for test results and starting to re-challenge potato, sweet potato, zucchini, maybe some rice and then lamb again.  We are NOT to trial soy or oats as the allergist in Melbourne wanted.  We are to go slow and steady, not mix things up...  a teaspoon a day and building on that and hoping that we can get some food tolerated before Aerynn decides she is too grown up for formula ;)  Oh and of course to continue to love and embrace all that Aerynn is - a little package of "Concentrated Awesomeness"

Upgraded, and New Suspicions....

It's not every day you get a letter that takes your breath away.  We received one last week.  It's neither positive or negative, but really knocked the wind from our sails.

You see, in the previous days we'd been starting to think that Miss Aerynn may have picked up a little on the growth and weight front.  We thought she had started to think maybe, just maybe things were improving and we could forget all the concerns and Aerynn was coming right...  

Sadly not so.  Instead this letter states that they have upgraded her "status" from Failure to Thrive (FTT) to Severe Failure To Thrive!!!  And it's not a typo, it was in the Drs own handwriting...  We knew she was a FTT bubba... it's been that way for a while, but the addition of that extra word has shaken us...  "Severe"...  not a nice word when used in a negative medical connotation... 

Not only that but the conclusion is that we are going to end up with a diagnosis of a form of dwarfism.  Aerynn has been on increased calories for 6 months now with no huge increase in weight or height.  The dr noted that as much as she has had a small amount of rebound growth her weight and height is still not able to be classed as acceptable or normal.  Our little girl is a LP.  She has a form of dwarfism and there is no way we can change this.  All we can do is hope for a full diagnosis soon so we can deal with the outcomes and anything else we may need to consider to ensure she has as happy and healthy a life as possible. 

We are still awaiting results from her 11p15 methylation study for Russell-Silver Syndrome and are now about to commence xrays and bloods for investigating the newest suspect, Cartlidge-Hair Hypoplasia. 

CHH actually fits our situation more than what we want to admit.  Right down to Aerynns white blonde hair that isn't growing and very fine and sparse, her non-growing nails and assorted gastro issues.  The scary thing for us is that this is a genetic condition,  this means that our other kidlets could have it (you can have CHH without the dwarfism) or they may be carriers.  It is a recessive genetic condition which could be why no one has heard of it before in the families.  You need 2 carriers to come together to have a child with the condition, prior to the 2 carriers coming together you can simply be passing the gene through the generations without realising... 

So a confirmation has occurred, and a swift slap to make us realise that no, things are no where near normal for our Aerynn.  We still have no diagnosis but we can now start the process of accepting that we can't change Aerynns growth with food as the drs were first trying to do.  We also have a new suspect to deal with and have a road trip to prepare for.  Aerynn has appointments with the genetics team, gastro and immunologist on Tuesday in Melbourne, and now a whole stack of xray studies and bloods to be take at the same time as well.  We leave on the 1000km round trip tomorrow..  We're quite anxious truth be told, we feel we are getting closer to a diagnosis which is what we need, but it's scary at the same time.  The closer we get the more real the situation becomes and we can't hide or pretend that it's not happening... 

New Year, Same old Same old...

Aerynn playing in the sandpit earlier this week

It may be a new year but nothing changes much here.  At the moment we are struggling with lack of sleep with the littlest Miss.  We've had a few nights of waking screaming and writhing around.  i was kinda hoping it was something reasonably common in "night terrors" but the last 2 days indicate it's more in the line of health issues :(

Aerynn was bright, bubbly and happy on Monday... Tuesday however she had a new crop of blisters break out on her upper thighs and bottom.  Not the usual pinprick blisters, there were around 0.5 - 1.5cm in diameter and fluid filled.  Her bottom was bright red with acidic burns.  Those blisters burst last night (Wed night) and this morning we woke to open sores again (albeit reasonably dry thanks to our "magic cream" Aromababy Barrier Balm) but she still has some red patches with huge (well huge in comparison to the teeny size of her butt) flakes of skin peeling off :(  It looks like a terrible sunburn TBH :(  Must be sooooo sore and uncomfortable for her :( 

Nappy changes have become a fight again as she doesn't want anything on them, but they need to be covered to keep them clean and well, to state the obvious so she can poop and wee and we're not discovering stinky little "surprises" LOL  I can only hope they heal up without becoming the ulcerated sores that we're still struggling with from back in August 2012 :(  The only upside is I have some photos to show the Drs that we are STILL having issues and that we'll be seeing them reasonably soon - in 12 days time...  Anyways, usual symptoms... bloated tummy, gassy, alternating diarhoea and then sticky icky poops, traces of blood on her nappies, unsettled and very very clingy.

I have no clue what has caused this latest reaction, I thought we were plodding along reasonably ok...  Anyways so much for that false sense of security!