Sunday, August 4, 2013

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

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