Sunday, August 25, 2013

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...

Wednesday, August 14, 2013

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

Friday, August 9, 2013

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!! 

Tuesday, August 6, 2013

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** 

Monday, August 5, 2013

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 ;)

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