2012 Wrap Up...

It's been a while since I've posted here.  To be honest it's mostly due to disillusionment with how things have been going for Aerynn and loss of some of our support network.  But we're slowly rebuilding and working out where we stand and where we are heading for future :)

In wrapping up 2012 we unfortunately still have no diagnosis.  We feel we are moving in the right direction, BUT in saying that we (being us, the Mt G dietician and the Warnambool Paed) still don't have any firm support from the individual specialists who are part of Aerynns medical team in Melbourne.  It's pretty much a case of trying to match her symptoms and working out if we can either support or disprove a possible diagnosis.  

At the moment we are still working with the genetics team in suspecting Russell-Silver Syndrome (the genetics team are also looking at 2 older siblings at another condition which could be unrelated to Aerynns current situation).  We were happy to have it confirmed that Nathan, myself and Aerynn are all chromosomally NORMAL ;)  There are no missing or defective chromosones which is a HUGE relief.  We are now waiting for Aerynn's DNA to be tested (It's been sent off to somewhere in England apparently) to confirm RSS or a couple of other syndromes responsible for short stature.  We saw the genetecist on Dec 19th and they will be following up with more tests, full body xrays and what they called a "second line of investigations" when we see the immunologist and gastro in Melbourne early in the new year.

As for her food issues, we have firm support now in suspecting that Aerynn is unable to absorb fructose.  This is a malabsorption NOT and intollerance.  Basically it appears she may be missing enzymes in her upper gastric system which aid in the digestion of certain foods.  There may be other things we discover down the track that she can't absorb or process, but so far fructose is a firm no-no for Miss A.  Now, if you have been following things you'd remember how she was fed primarily pear...  guess what fruit has a high amount of fructose in it :/  Yup pear!!!  No wonder her poor body was having issues!!!  Since removing all fruit from her diet over the past month or two we have noticed a huge change in her bowel habits and not seeing the undigested foods coming through her system as much anymore :)  Mind you, that has only left her with a diet of Neocate Advance (Vanilla) and chicken so there's not much that she can pass through undigested LOL  Actually, speaking of formulas, our paed does NOT want Aerynn back on the nan HA formula at all!!!  Her symptoms are blaringly obvious a reaction to the dairy and she agrees that while Aerynn was on the Nan HA she went backwards with weight gain, where as we are having positive results with the neocate.  There is no logical reason to even consider forcing her back onto the dairy while we finally have forward progress!!

Our paed is fully behind us demanding when we see the gastro in January that she have the scopes that were cancelled during her hospitalisation.  Not just the colonoscopy but also to push for the gastroscopy.  The hype that it is a dangerous procedure she feels has been played up just to fob us off (we had kinda worked that one out ourselves LOL)  We need the colonoscopy as the genetecist also suspects we may be dealing with a case of Paediatric Crohns Disease along with the paed.  At the very least we need the scope to rule this out.  Crohns would explain so much of Aerynns symptoms - including the sores that are STILL not healing on her bottom and upper thighs.  We are still having intermittent periods of blood in her stools, but it's now got to the stage where we don't even note it down.  It's simply an "Aerynn thing"  The paed is happy with how we are handing her and dealing with her food restrictions, introductions and any relevent reactions so is very happy that we simply deal with these episodes as they come up.  Of course if there is any profuse bleeding etc we will take her to get checked out further ;)  We're not silly enough to think that we have all the answers with her care, but there's no panic in regards to blood and mucous anymore as it's almost I guess "normal" now...

ummm what else...  not really sure if there is anything else medically speaking.  We are simply taking one day at a time and rolling with what her little system throws at us.  Our next block of appointments is on Jan 22nd in Melbourne where we will see a new immunologist (hopefully fresh eyes will give fresh ideas!!) then seeing the genetic team and following through with whatever testing they want done and finally the gastrologist and hoping we get some logic as to why her scopes were cancelled back in October and getting them re-booked.  We'll also be looking for continued support to keep her on the neocate formula rather than re-trialling the dairy based formula. 

 Waiting patiently for her Paed appt in Nov 2012



So, where we are sitting at the moment??  Aerynn is 17 months old, 75cm tall with a head circ of 47.5cm.  She has finally hit the 8 kilo mark (woohoo!!!) weighs 8.54kg and we are finally moving her up into 00 sized clothing :)  She is still very small for her age, but we finally have some forward movement rather than the plateauing that was very concerning. 

So in wrapping up 2012, we have no definite answers but we have leads that need following up.  Aerynn is appearing healthy at first glance, it's only when you sit down and take into account she is only eating a small amount of chicken and can't tolerate anything else therefore really only relying on a specialised formula for all her nutritional requirements at 17 months old that you realise there is something seriously wrong with her.  She has been on almost double the amount of calories that most other children require for over 4 months now and is still not gaining excessive amounts of weight or growth so something is going quite awry in her system.  Then when comparing her to other children her age and where her siblings were at the same age you also realise just how tiny she is.  She's our own little petite princess, but we really want to get to the bottom of what is happening so she can have as normal a life as possible!!  

We are praying that 2013 will bring us the answers we need so we can start taking steps to help her gain the life she deserves :)

Going Nowhere FAST!!!

To say the last few months have been tough is pretty much an understatement.  Aerynn's 1 week re-admission to the RCH ended up with another 3 week admission, more intensive tests but again, no real answers for what IS going on.  We were able to rule out a few nasties such as Meckels Diverticulitis and physical bowel obstructions or bowel deformities, but no explanations as for what is happening inside her tiny little body.  So in the last 8 weeks, 2 were spent with an extremely ill little girl and running around the countryside for appointments and tests, and the other 6 weeks as an inpatient at the RCH, almost 500kms from our home and family undergoing all kinds of tests and procedures trying to get answers, but coming away with none :(  We are trying our best to see the positives and make the best of this situation, but really as much as things are being done we feel we are (as my title suggests) going nowhere fast...

 

Out and about with "Larry" (the drip machine)  

The mundane laundry and the aquarium (which Aerynn LOVED!!!)

 She is STILL spilling fats into her stools on every test, but they immunologist doesn't seem ready to investigate malabsorption just yet, however the consultant said he is not ruling it out at.  Her liver enzymes are rising and on tests are highlighted as being too high - this really concerns me.  As much as the liver is an amazing organ which can repair and regenerate itself, to have it in distress as it seems to be with no answers as to why is a little disconcerting as a parent who can do nothing but watch those levels rise - a good thing though is her biliruben levels have dropped back to 0... 

  Watching the Grand Final - 

Yay the Swans won!!! 

Aerynn is still passing undigested foods into her nappies within hours of consuming them.  Sometimes with no stools around the food - kinda gross, and totally not normal!!  She had another bout of blood in her nappies in the hospital, however her colonoscopy and gastroscopy that the gastro team wanted to perfom and we approved were cancelled and have not been done.  This was VERY frustrating.. to have her on a drip and fasting for the whole day and get nothing out of it :/  But what can one do when they are at the mercy of the hospital system and hospital politics **sigh**

We had a dairy trial in hospital as well.. trying to wean her onto a cow milk based formula... Not very successfully though...  Lots of pain, bloating, tears and poopy naps!!  I tells ya!!  When her system is upset it is UPSET!!!  12 poopy nappies one day, 11 the next.. then we called it quits to the trial as we were returning home to move and I wasn't able to cope with the whole intense reaction thing as well as searching for a house, moving and caring for 5 children at the same time as getting no sleep as Aerynn was in pain all of the time... 

 





Celebrating Domeniks 4th Birthday at the RCH.  He was devestated mummy wasn't at home when he woke up on his birthday morning so they drove down to Melbourne to visit!!

I know there's more I could add as to what happened during the admission, but to be honest I'm exhausted.  I needed to get this post in otherwise I know it'll be a few more weeks before I get the time to sit down and really think about the admission - which to be truthful I don't want to think about all that much.  This last admission to the RCH was marred by issues not relating to Aerynn but I found that some support I was clinging to really wasn't there and disappeared into the distance when I tried to steady myself and find the strength to go on.  I didn't expect to be attacked and left isolated the way I was, especially while in hospital so far away from my support network but I learned that maybe it is better at times to be certain in your own strength than in hoping that others around you may be able to help hold you up.  We've learned, we've hurt but we've grown and know we have the strength to face this all, if need be face it alone...  

 Aerynn LOVED taking self portraits on my iPhone :)  

She's really starting to look like a little girl, losing those baby features **sob**

In the meantime we are HOME!!!  Well, what back with the family ;)  Home will be re-locating in the next couple of weeks back over the border to SA ;)  But we're out of hospital.. back to the "normal"  Aerynn is still on neocate advance (vanilla flavoured), pear and chicken.  We are going to try and introduce wheat into her diet when I am game enough...  It may be soon as she is starting to reject the pear and chicken (It is rather a boring diet LOL)  No dairy for 3-4 months according to her immunlology consultant who says she is having an allergic gut reaction (previously known as intolerance), not an IgE reaction to it.  

 Lots of smiles...                                                            and tears...

So the immediate future also throws up more appointments for us... Warnambool Paed sometime in the next week, Back to Melbourne for another immunology consult on Nov 2, Geneticist in Warnambool Nov 24th then back to the paed before Christmas.  In January Aerynn will see the gastro consultant and we will start looking into why she is having these blood episodes in her nappies and investigate the possibility of malabsorption.  It's more than likely going to result in more admissions to the RCH apparently but if we can finally get answers I'm ok with that...  Answers or at the least explanations are all we are needing to know where to go, so we have somewhere to aim in her treatment and prognosis for improvement.

Falling asleep waiting for nanny 

to answer her facetime call...

Back to the Chateaux...

Aerynn is going to be re-admitted to the RCH this weekend for more tests and hopefully getting some answers heading in another direction.  She is to (hopefully) have a barium meal tomorrow and then follow up with the paed in Warnambool on Friday and off to the RCH for at least another week on Sunday.

I'm kinda concerned with the speed in which all this has been organised.  In the space of 2 hours apparently the paed and immunologists had organised all this.   I'm kinda expecting them to say there was more blood in Aerynns stool sample from Warnambool as her samples have becoming increasingly darker to almost black and smell metallic.  In a way I hope it's that as it's a definite indicator something is going on and it's not all me saying it is, but another way I hope not because as muh as she is having these episodes I don't want her to be really sick.  Probably makes absolutley no sense hey ;)  Anyways kinda scared, kinda relieved but mostly feeling rather rushed... 

Our Stay at Chateaux RCH

One week became 3 once we were admitted to the Sugar Glider ward at the Royal Childrens Hospital in Melbourne. 

We had test after test but ultimately walked out none the wiser with what is really happening inside our little girls body.  To say we're disappointed is an understatement.  Again I think I set myself up to expect too much :/ 

Aerynn was subjected to skin prick tests, food challenges, several blood tests, stool samples, failed SPD's (needle into bladder for urine tests), failed catheterisations (again for urine tests), a sweat test, full body photography, nurses who refused to take note of her symptoms, nurses who didn't check on her during the night when I was up all night caring for a screaming baby, Nurses who were bloody brilliant and would always ask how Aerynn was when we passed in the hallways....  We had it all!!!  And the food... well...  no comment!!!  LOL

We saw genetecists, gen med paeds, gastro paeds, immunologists and allergists, nurses, nurses, nurses...  pathologists, photographers, social workers and student doctors who wanted to use our complicated little Aerynn as their "research subject" 

Out of it all we know she is NOT allergic to any of the foods we suspected.  Why she has developed hives, urticaria etc to them we do not know.  She did not return a single positive SPT which floored us.  She did however fail two foods she was trialled on (beef and pumpkin) and showed intolerance signs to some others but we're to plug on with those and help her reaction improves (egg, yoghurt, bread and banana) She is showing signs of malabsorption with fat globules and crystals showing in her stool tests - the Drs are hoping it's a side effect of being given the "new" foods, and that it will rectify itself before this Fridays paed visit.  I'm not so hopeful on that as these foods were not new to her.. but time will tell ;)

We were able to rule out cystic fibrosis for once and for all **yaaay** and life threatening food allergies.  She has tolerated the new vanilla flavoured neocate advance formula quite well and has been reasonably ok with pear and chicken as introduced foods.  Both still pass through her undigested but it is some form of solid food that has not got many too dastardly side effects to her consuming.  So they are pluses, however to walk out with more questions than answers is really disheartening when we were hoping to finally know what we were dealing with.

I'm now at home, nursing a baby who has severe stomach cramps, bloating, bottom ulcers from acidic bowel motions and in so much pain she is screaming hours on end.  She has had blood filled nappies in the week since being home and 2 more ER visits.  This roller coaster is making me feel so sick and giddy, I want off... but I can't do that to Aerynn, we need to get to the bottom of what is going on with her - hopefully the follow up appointments we have can help with that and we will get some answers in the very near future...

Quick Update....

So much has happened since my last post!  I've not been able to update while at the hospital as the internet wasn't the most reliable :/ and as much as we have been home for almost a week I've been recovering from our hospital stay - it was so draining not just physically draining but mentally!!!

Anyways I am happy to report that Aerynn tested NEGATIVE to Cystic Fibrosis!!!!  Yaaayyy!!!  I almost cried when they told me her result was within normal levels!  However there is another test we are still awaiting results for for another syndrome which can account for the fat in her stools and a few other things :/ 

I'm hoping to update about our hospital stay properly tomorrow, for now just wanted to touch base and wipe the CF demon out of our minds for once and for all :)

The New Villain

We’re now almost finished week 2 of Aerynns hospitalisation. The “one week” has blown out to “at least 3 weeks” now. We’ve had some success with her now starting to tolerate neocate advanced (vanilla) quite well… we had some rocky days to start but now almost back to our cheerful little girl J Yay!! Pear so far has been tolerated for one day, as has (surprise surprise!!!) chicken! Pumpkin however didn’t fair so well and we are re-challenging it next week over subsequent days to see if her reaction is a true intolerance or just Aerynn having an “off” day. We FINALLY got a clean catch urine from her to test for UTI’s. It’s only taken several hours on end on a daily baisis sitting with our little Miss nappyless waiting for an elusive wee… it seems Aerynn wont willingly empty her bladder without a nappy on her butt LOL As funny as that is we ended up having a failed catherterisation and SPA (needle through the belly direct into the bladder) in an attempt to get a sample. We avoided a re-attempt at the catheter and needle by 15 minutes!!! Was a HUGE relief that’s for sure.. and for all that time and effort she has tested negative J

Anyways the biggest news I guess is that we have a new suspect for what is happening inside our little girls body. And it’s not the best suspect out – in fact rather more of a Villain.

When her initial blood and stool samples were tested in Warnambool, so many months ago, we were assured that she was negative to several things, including caeliac disease and cystic fibrosis (http://www.cysticfibrosis.org.au/aboutcf/). This week however Aerynns stool sample has showed that she is not processing fats. In fact her little body is spilling fats into her stools (poohs for those who were wondering). This is most certainly not normal. In fact it’s raised a few very serious concerns when coupled with her other symptoms of failure to thrive, excessive sweating (which is salty so I discover tonight after kissing her while she was sleeping) excessive mucous production and malabsorption issues. Combined she is re-raising super bright, flashing neon signs inviting the words “cystic fibrosis” back to the table.



Even though she had a heel prick test (Guthrie test) at 3 days old and has previously tested negative to CF apparently there are a small percentage of kidlets who are kind of like “sleeper bodies” when it comes to CF. They don’t start to show signs until a little later in their babyhood. It is suspected that Aerynn may be one of these little “sleepers”. TO be spilling fat into the stools is a huge sign for CF. In fact CF is the most common cause for this to happen so I’ve been advised – mind you I was in shock when the gastro specialist came and told me all about this after previously wiping CF from our minds…I remember asking what if it isn’t CF, what are the other options. Apparently there are other rare syndromes that may account for it, but from what I can gather their not that much better than the CF diagnosis. There is a very small chance that she may be spilling fats due to a change in her diet, however as she has not had any increase in fat intake and coupled with her other symptoms we’ve been told to prepare for this diagnosis.



So these last 36 hours have been extremely emotional for me in particular. I really feel we’ve been kicked in the gut. We were looking at a probably diagnosis of RSS which although life changing has no long term health implications to CF which, as most would be aware, has lots of health complications and can be life shortening.

Tomorrow at 9am is our sweat test. This is the diagnostic tool for confirming or ruling out CF. A little metal cup like device will be put on Aerynns arm and for approximately 6 minutes a small current will be passed through it to stimulate her sweat glands. Then we are to have her rugged up nice and warm and try to make her sweat as much as possible for the next 30 minutes. Knowing Aerynn that wont take too much effort LOL We’ve done a sweat test 11 years ago with William, he was obviously negative – but then he also doesn’t have the issues Aerynn has with sweating, malabsorption size etc etc…

To say we’re scared is an understatement. I know we’ve been told to be prepared for a diagnosis before, but this one for some reason has really rocked us. It really didn’t help that the morning of the Gastro specialists visit I woke with the song “Sixty Five Roses” (CF awareness/fundraiser song www.youtube.com/watch?v=Mksi0KI6AiA) in my head and visions of the episode of A Country Practice that featured CF dancing in my dreams… Was my subconscious trying to tell me something Guess time will tell.. but for now it is 2.27am the morning of Aerynns sweat test and sleep is eluding me… my brain is going a gazillion to one and the scenarios playing out aren’t things that should be going through a persons head before they go to sleep… Guess I have to though… have a feeling I’m going to be needing all my strength to get our little one through the day….

Altered Realities

Today is day 4 at the hospital (admitted around 5pm Monday night) And right now I am feeling as though I must come from another planet or am living in some external plane outside of the real world that allows me to interact with those in the real world still.

So far today I’ve been told that Aerynn has been given antibiotics previously and has a skin rash and been prescribed these drugs again to clear it up. She needs to take antibiotics orally 3 times a day for 2 weeks :/ This girl (well in my world at least) has never had an antibiotic in her entire life!!!! Let alone a rash that has been bad enough to be needing a Dr to be checking it :/

Also in my world last night I was up settling, feeding and soothing her 6 times between the hours of midnight and 7am. This morning I am told that ht nurse who introduced herself at 10pm and whom we didn’t see again reported Aerynn had a great night, was really settled and slept well…

And now despite me watching her react in front of my eyes, having others see her react an come out in hives, vomit, diarrhoea etc etc etc in the real world she tests as not allergic to anything :/ How the heck can she be reacting, hiving, vomiting, mucousing, etc etc etc in my world but in the real world nothing – nada… zip… Even with photos….

So I’m obviously living in some altered reality. Things I’m seeing and reporting are apparently not real or happening according to everyone else.

I want to check out of this place right now.. I’m so confused and upset and really have no idea where to turn now. The person parents should be comfortable in turning to has been extremely judgmental of us already (our choice to demand breastfeed and use cloth nappies) so not feeling the support there.

Add to that being told yesterday that unless Aerynn gets hives, swellings or copious vomiting from foods it’s not really considered a “reaction” I’m kinda flustered with this. I know she is mucousing and spiking temps with food but they are not considered reactions to the food! We’re to continue giving her food despite this happening. Despite the fact she’s not sleeping after being fed these foods for whatever reason :/ I can understand that they are not life threatening reactions and that we can push past them but feel they have been dismissed and waved away as “nothing”

Anyways… beam me up Scotty. I do not like where we are at the moment. I feel questioned, judged and found wanting on so many levels and am starting to question my own sanity. It’s not a good place to be :/

The journey has begun!!

After a night of tummy cramps, screaming and very little sleep we are on our way - hopefully on our way not only to Melbourne but also to finally getting some answers to what is going on with little miss A!

422kms and approximately 5 hours travel time lies between home and our destination... Lots of coffee and refresher stops along the way are on order ;)

Piccies to come :)

So Much For That...

...you know, that "no food" rule...  Somewhere the littlest miss has ingested something and has spent the last 2 days reacting to whatever it was **sigh**  I'm not certain what it was but it could be apple if she had a suck on the apple core Dommy left on the coffee table before we removed it... 

image source: www.free-photo-gallery.org/photos/red-apple-core/

So we've had the works..  well kinda, all except vomiting this time, which is what makes me think it's more of a "suck" than a "chew and swallow".  We were aiming on getting her back to base level of no reactions and clear skin before her hospital admission in 2 days (eeeekkk  so close now!!!) but instead we have eczema, burned bottom, diarrhea and mucous and a miserable, non-sleeping, screaming and clingy bubs.  I'm hoping against hope that all these symptoms dry up overnight so we have a good starting level before her food trials start and (quite selfishly) I can get a decent amount of sleep before our 5 hour drive tomorrow.

 

In some unexpected good news Aerynn won a feeding bib from a Facebook store yesterday!! Belly Button Kids  had a 1000 likers giveaway and our number came up!!  Perfect timing isn't it!!  Hopefully we come home from hospital with a little girl who can finally eat and wear her beautiful new bib!!!  

At the moment I'm madly crossing things off lists, making sure that things should run reasonably smoothly back here at home for hubby and the remaining 4 kidlets and getting ready for a rental inspection due on Tuesday... oh and Kahli and William have a school concert I need to get their stuff ready for on Tuesday evening as well :/  Never a dull moment eh   ;)   I'm hoping to be on the road by 10am tomorrow so we hit Melbourne before it gets too dark!  Driving in the city for this country mouse is daunting, driving without support in the city is even more so! LOL  Times like these you realise how much you rely on your partner...  big girl panties and cups of cement have already been ordered   ;)

Right now the older kidlets blue baby books are eluding me, these are required to compare Aerynns growth with for the Russell-Silver Syndrome investigations...  Pretty important I find them too!  So it's madness!!  Nothing new really...  madness mixes with a little panic and apprehension... I've never left my kidlets for this long before, and never left Dommy before so feel a bit like a deserter but know it's for the best.  Bring on discharge with diagnosis and some "safe" foods, oh and returning home to my little (well not so little) family <3

Becoming Real

It's starting to feel real.  The hospital admission has been confirmed and plans starting to gel into place. The possibility that we may be walking away with a RSS diagnosis.  The hope that we will have something for Aerynn to eat very very soon. And the fact that mum and bub will be away from the family for an unspecified length of time.

It's all taking a toll on our stress levels and playing on our minds. 

We will cope, the day will come, the time will pass.  But in the meantime I'm kinda scared about what next week will bring. 

We've been told different things from different people who have had similar food trials in hospital.  I'm trying to not stress but knowing how Aerynn has reacted to all food previously I have to admit I am a little concerned.  On a plus with that I will only have her to concentrate on.  I wont have my attention divided between her and the house and a husband and 4 other children and other social appointments etc etc...  But I am a bit nervous about not having Nathan with me.  As much as I grumble and (jokingly) complain about him and the likes he is a great assistant with the kids and if I've been trying to settle Aerynn all night and day I at least know he will make me a coffee and hold her so I can shower or go to the toilet.. I wont have that in the hospital... I don't even know what facilities there are for parents so am feeling a little ill-prepared for what to expect there. 

We still have a few practicalities to work out...  What to pack to start with.  Aerynn can't wear disposable nappies so I need to take her cloth in.  There are washing facilities at the hospital but I don't know how often I will be able to get away from Aerynn to use them :/  So how many cloth nappies and wipes should I take?!?!  Her whole stash???  oh Lordy.. too hard LOL  If she reacts she can go through up to 14 nappies a day!!!  Then clothing.. how much to take, and what kind?  Will we be allowed to wander around and socialise or will it be a strict - in room under observation kind of thing?  Do I only pack her jammies???  And do we go down to Melbourne on Sunday and relax for the night and Monday morning waiting for the call to go in, or drive down Monday morning and grab a coffee at the hospital cafe if we get there early enough and wait there to be called in???

I know, totally trivial, the big thing is that it IS happening!!!  This time next week we will be in hospital hopefully getting answers or closer than we are now at the very least :)

For now, the family is really struggling with the split meal thing and not eating in front of Aerynn.  We have to remind the older children constantly and Miss A sees them eat and we end up with huge tantrums with her demanding the food and then watching her heart break with the realisation that it wont be forthcoming.  Add to that Aerynn is still really clingy.  She has been screaming on and off the last couple of days.  I don't know what is happening inside her to make her continue to be miserable.  It could be a wonder week, it could be a reaction.  I really don't know...  I only hope we get the answers we are so desperate for next week so we can start to fit the puzzle pieces together.

Getting Tough!

Time has come to start getting really tough and crack down on the "no food" rule.  Aerynn has had a really rough night followed by a similar day.  I can only blame myself for giving in and being selfish with the cake smash.  As much as she LOVED having free reign I knew it was a risk and chose to get photos over the health implications which really isn't good enough.  As her mum I'm meant to be her protector and put her first, I didn't and now she is suffering for it :( 

Last night both Aerynn and I had absolutely no proper sleep.  She would drift off only to wake screaming, arching her back and the only way to calm her was to feed her and snuggle.  She has had 9 very pale and loose dirty nappies in a 24 hour period which have been very acidic and she now has big open wounds where she has been burned and the resulting blisters have burst on her bottom.  They are now bleeding, no matter how thickly I slap the barrier balm on it still bleeds through.  Add to that she had a huge nappy full of mucous and fresh blood this afternoon.  I can only put it down to a delayed reaction to the cream she ingested with the cake smash.  She's not ingested enough of anything else to create such a dramatic change and gastrointestinal reaction.  She didn't eat any cake, only cream.  Cream dyed with red food colouring with added gelatine (beef) so it could be any of those or the combination.  Honestly, I think it's the cream.  She's always had an issue with dairy - as much as she's not allergic to it she has had big issues since around 12 weeks of age.  

So her reaction has been tough, but our response must be tougher.  No more food.  We have a week to get her back to baseline so any reaction we get in hospital can be narrowed down to a new reaction and treated accordingly.  It's not going to be easy.  She knows what food is, she loves tastes and textures and is awake during traditional mealtimes.  The only way I can think of making this work is to have 2 meal times for the family.  Maybe the kids first with Nathan and then I'll eat later.  That way whomever may not be eating can take Aerynn into another room and entertain her so she doesn't have food in front of her teasing her as such.  Meal time for us has always been a family situation so it; is going to be different, but hopefully, it will only be for a week.  Hopefully we come home from hospital with a food that can be tolerated and Aerynn can finally join us at the dinner table :)

  

Happy Birthday Little Poppet!!!

Yesterday we took a risk and did a cake smash with our little one.

 The logic behind it being that she was already feeling poorly, it couldn't make her feel much worse, and better to get it over with while she is feeling like that already rather than letting her feel better, then get sick again and start a roller-coaster of food reactions.  It sounded good at the time, we had a rough night and iffy morning but it was totally my fault so no use complaining...  I think the photos and seeing her enjoy the cake smash was worth it.  

Who knows when she will have free reign to enjoy food again???  It was one last hurrah :)  

   

 *****

Today we could ignore it no longer...  At 1.35am Aerynn woke for a feed...  around 1.45 she slowly started to doze off...  Probably doesn't mean much to anyone really but 1.45am marked Aerynn being earthside for 12 full months.  It was so right that she was milk drunk, snuggling and starting to doze at that particular moment. 

 I think it was also the moment I started to come to terms with the fact that as much as there is nothing I wouldn't do to "fix" Aerynn but no matter what we do we simply have to ride the waves of whatever comes out way.  I'm probably a slow learner, I really don't know... but we've tried just about everything we can to induce growth and weight gain.  Even these last few weeks allowing her to eat a bit more and increase calories simply hasn't resulted in anything.  Todays weight  and length check confirmed that. 

At 12 months of age Aerynn is 65cm long, weighs 6.57kilo and has a head circumference of 46cm.  That means in the space of 1 months she has gained 10grams and grown half a centimeter.  But for the sake of not a wetting her nappy and a little scrunch as she's beign measured we would have recorded our first loss!!!  It's the smallest growth she has recorded in 4 weeks AND she has had increased calories this month.  It has calmed my mind a little in allowing me to accept that her lack in growth is extremely unlikely to be nutritionally effected, that we are dealing with something other than a dietry issue.  Sure her diet IS an issue, but it's not what is effecting her growth.

In 12 months Aerynn's weight is up 3.68kg (from 2.89kg), She has grown 17cm in length (from 48cm) and her head circ is up 12.5cm (from 33.5cm. She has definitely grown... just not as expected...  She is going things in Aerynn's way, and is perfect the way she is and we will love and accept her no matter what the future brings her :)

Pushing the Limits

There's only 2 days until our little girl turns 1!!!  Time sure has flown!!!  She is changing from our little baby into a little girl before our eyes! 

We are doing our best to get her through the next few weeks prior to her hospital admission and food challenges etc the best we can, and I have to admit we've been a little naughty.  Aerynn kept trying to eat anything she could put in her mouth.  barks, sticks, dirt, animal food - literally anything she could get her hands on she was trying to eat.  I couldn't handle it so have relented and have been allowing her little bits of REAL food.  Foods that we know takes a few ingestions and days for her to react so we can try to manage any reaction that may build up.

It's worked in the sense that she is no longer trying to eat anything and everything but after 2 days of this we're seeing a little bit of fallout.  She has had a couple of really unsettled nights, has mild eczema breaking out on her face and the most horrible nappies out.  She's been swinging between constipation and diarhoea - no mucous or blood though as yet which is good.  No "proper" vomits as yet, however when she gets a good cry up or upset she will dry retch and have little vomits.  She also has the sorest bottom.  Sadly she has blistered and has big open wounds which are bleeding at nappy changes.  I am struggling to know whether to carry on with this to keep her "happy" or to stop and deal with a child who tries to eat anything and everything. I know if I rang the hospital they'll tell me not to give her anything until we're in there but they also don't live with the guilt of eating in front of a child who is desperate to taste, eat and experience food day in and out... 

 I know we are pushing the limits with her little body.  I love seeing her happy with food (even the small amounts she is getting) but not sure if we are doing the right thing - hey, I know we're probably not doing the right thing...  but then we also were told that if she eats not to stress as she will react anyways - hence the justification for doing a cake smash for her when the weather clears up...  Where does one draw the line on what is ok to tolerate and what isn't?

UPDATE:  within 10 minutes of submitting this entry we found our answer to the above dilemma... we had reached the limit.  Aerynn started power chucking thick mucousy vomit and the same in her nappy :(  It looks like we are going to have no choice but to keep food away from her until she is approved for it in hospital.  I've tried so many different ways to get food into her with the least possibility of reactions but it always fails.  I am out of ideas now, and seeing her distress tonight as she was trying to clear the thick gunk and breath/cry at the same time was heartbreaking...  She is still shaking and unsettled, but better after a feed.  Lots of snuggles on the agenda for tonight and taking my cup of cement to try and permanently drown the mummy-guilt and frustration....

Black and White

Sometimes you can be told things over and over but it takes seeing it writing for it to really sink in.  I think as much as we've been told that it is a possibility Aerynn has RSS and the food stuff is a side matter I've always thought that it was not taken seriously, and that it was just something to be ruled out then moving on to concentrate on the food thing. 

Today we received a carbon copy of the letter the allergist sent to our paed following Aerynn's visit to the RCH 2 weeks ago.  I hadn't expected to have this letter posted to me, much less expected the detail that was within it!  It is a FULL 2 pages long!!!!! 

Reading it made the hairs on the back of my neck stand up.  Seeing exactly what Aerynn has been through and is going through set out in a clinical fashion in words was very confronting.  As much as I know what we have experienced and seen, to see it set out in black and white kind of formalised it.  Finally it wasn't words floating around that were floating off in the distance end being ignored.  Here is was; documented by a medical specialist.  We were finally being listened to...  but it was so hard to read! 

They have given us a tentative diagnosis of: 

1) Multiple Food Protein Intolerances and Allergies

2) Failure to Thrive and 

3) Mild Eczema. 

So for the moment they have removed the FPIES diagnosis but that will be investigated in hospital.  Aerynns only acute FPIES reaction so far has been to neocate, but she has all the symptoms of chronic FPIES and our paed is certain it will be re-instated. 

What has really made me sit up and pay attention is the following - as quoted from the letter....

"She did not demonstrate any obvious dysmorphic features or nutritional deficiency"

 and 

"as Aerynn is small and petite we support her referral for genetic assessment to be seen with regards to a possible diagnosis of Russell-Silver Syndrome" 

It's hard to put into words, but as much as we've had this suspicion for several weeks now but to see it in writing and not shrugged off as "yeah maybe, but not likely" or "not a classical presentation" is making it seem more a real possibility.  I know it's not a diagnosis.  What I guess I'm trying to express is that as much as we've been talking about the possibility it hasn't seemed REAL.  Now that it is in black and white and the investigation of it is being supported due to the exact reasons we've been suggesting that there is something other than food complications it makes it harder for us to shrug it off ourselves.  

Why tell everyone about the possibility if we are struggling to believe it ourselves?  I guess it is a way that we can start to accept that it is a possibility.  That said, without positive confirmation we've also been able to push it aside and sit on the fence ourselves saying maybe it is, and maybe it's not...  To have another professional think it is enough of a possibility to put it in writing and support the investigation (which I know probably has been done already with the geneticist referrals, but we've not seen it) confirms our suspicions I guess that there may be something more than food - that this really may not be a quick fix thing...  

It probably doesn't sound very logical.  I probably sound like a complete and utter nutter...  TBH I don't care at the moment.  I'm struggling with this.  It is so confronting to see these words written about your daughter, to see your suspicions reflected by a professional and to have to start to accept that our little girl may not be able to be "fixed".  Augh but then I get into the mental argument with myself that RSS does not mean there is something that needs to be fixed!!!  Oh these mental games are really doing a number on me at the moment :/

I guess what we are drawing from this is that we have confirmation on examination and via bloods, urine and stool samples that Aerynn is NOT nutritionally compromised of deficient.  Aerynn does not have any obvious deformities to suggest genetic issues, but they support the investigation and possible diagnosis of RSS which would explain her size, very fine features and FTT.  We have had our FPIES diagnosis put on ice but diagnosis of intolerances, allergies FTT and eczema have been confirmed with further investigations, tests and challenges to be completed as an inpatient.  Nothing that is a real surprise there - but as I said, to have it in black and white puts a whole new REALNESS to what is happening after we've been shrugged off and ignored for so long...    

It Must Be Getting Noticable

Everywhere I turned today I got comments regarding Aerynns size.  I've not been in town for almost 2 weeks due to coming down with the flu, but in those 2 weeks something has changed.  I don't know if she is starting to look more mature in her face or if I'm paying more attention to those around me and appearing more open but the number of people I've never met before - strangers right off the street that commented on Aerynn's size today was remarkable (hence writing about it here :P)

I had 3 comments at McDonalds where we stopped off for 30 minutes to grab some lunch.  It didn't help that Miss A was being a determined little almost 1 year old and insisting that mummy was not to carry her and she was to walk everywhere holding mummy's hand :/  (Yep, a stubborn streak there - no idea where THAT comes from **eye roll**)  One mum there came up to me and asked me what was wrong with her, why she was so tiny!  I was rather taken aback and just blurted out that we're not sure but it could be dwarfism.  Probably not the most eloquent answer judging from the quick "oh I'm so sorry" and look of embarrassment on her face.  I don't know why she felt the need to apologise for something that no one could help, maybe her bluntness yes...  I guess I'm going to have to work out what to say if this kind of thing keeps happening...  Until we have a firm diagnosis and prognosis it's probably hard to put it into words...



Then in KMart while looking for spoils for Aerynns birthday I again ran into more unsolicited comments...  3 different individuals, 3 different situations but all the same "oh she's so tiny, how old is she?"  When I say she's 1 next Wednesday they all gasp in disbelief :/  Sure she was sitting in the trolly seat - rather gingerly as she's usually in the baby capsule seat and the seat is REALLY big and open and well for her... big LOL  But I didn't really think she looked THAT out of place there...  Maybe I'm not seeing the forest for the trees? 



* Snoozing in Spotlight today (yay we found a capsule trolley there!!!) - the only comments we got there were about how cute she was and about her snoring and sweating up a storm!!

Later in the evening again shopping, this time in Coles...  Same trolley, same "deer caught in headlights" look from Miss A due to the insecurity of the seat (curse the shops for not having enough capsule trolleys today!!!) and again lots of looks, 2 individuals game enough to comment "oh she's so cute, but too little to be sitting there" was one in particular... 

So one day down town and 8 comments on Aerynns size.  It's amusing though...  She's still our little Aerynn, nothing has changed with her but all of a sudden people feel they have a right to comment on her physical appearance or even apologise for the possibility she may be a Little Person... 

I wasn't ready for today... Really not ready, but obviously something has happened and I need to prepare myself for this kind of situation happening again.  Even if her being this small is only temporary it's only a matter of time before I have the older kidlets with me downtown and they start to notice the looks and hear some of the comments as well.  They love their baby sister and know that she has issues with food, but other than that we've only briefly discussed the possibility that Aerynn isn't going to grow like the vast majority or people and possibly will be defined as a Little Person.  But how does one do that?  Prepare.  Especially when we don't know for sure yet?  I don't want them to think that there is anything wrong with being little to start with, but if people automatically apologise and reel back if it is mentioned they may start to feel there is something wrong.  I might need more help with this than I first thought.  As much as this is what Aerynn is experiencing and is her journey, it is also a journey our family as a whole is on and I think I've just realised how much it may effect the other children - not necessarily negative but they need to be prepared for what other people may say and how they may react...

I know Aerynn will be perfectly Aerynn size, regardless of what is going on within her body, but is that enough for the kidlets to understand???   I kinda feel at times it's a hollow mantra for myself.  I know she is perfect for being her, but it doesn't mean I can't be upset and mourn the fact she may not be what is considered "normal" and have a "normal" life and "normal" experiences... of course that hurts that her future may not be what we dreamed it will be for our little princess, but it could be worse...  it could be much much worse, and she WILL be perfect little Miss Aerynn regardless... but is that enough for the kids to understand - actually I wonder if it really enough for ME to understand at times :/

*Trying on a Pony for size...  Her feet 

may touch the ground... one day.  In 

the meantime some shortening of the 

stirrups may be in order :/                  

Sheesh...  I really wish our appointment with the geneticist was this week instead of in 3 weeks time...  I don't know if I can put this off that long!!!!



*Please excuse the quality of the photos, I'm struggle with the iPhone camera, SLR I'll manage anyday, but a phone camera does me in :/  LOL

A Little Forward Planning...

We recieved confirmation of Aerynns admission date.  We now have 3 weeks in wish we can plan some time where we can settle and not worry about being whisked away for one appointment or another...  Aerynn will be presenting to the Royal Childrens Hospital in Melbourne August 20th for at least 1 weeks admission.  Honestly I am expecting it to be longer but time will tell. 

The ironic thing about our admission letter - to make sure we take along enough food for Aerynn's first day of admission... Hmmm  I know it's a standard letter but I had to smirk at that :P 

So the good news is that Miss Aerynn will be able to celebrate her first birthday at home with her family :)  It means we could have had her birthday party on the 11th of August but I really don't think i can pull it together with such a tight budget now we need to travel and live in Melbourne as well as on limited time...  So instead we will have a big party celebrating discharge, hopefully new foods and her birthday combined in the weeks following her release from hospital :)

So the reasons for this hospitalisation?

First and foremost food trials and ultimately walking out with 2 foods and a supplimentary formula.  Seeing as foods usually are tested individually and not classed a proper pass until they have been tolerated 3-7 days without reaction I'm not certain if we will actually get this achievement or our stay will end up being longer than explained at the time of booking. 

Secondly to do a whole range of skin prick tests.  We have a HUGE list of items to take in to hospital that they will test her for during her admission.  Most are fresh produce she has had intolerance reactions to so I'm not expecting much at all.  It will also contribute to investigation and confirmation of what our paediatrician has already suggested Aerynn has with the FPIES.

Thirdly to investigate the suspicion of Russell-Silver Syndrome.  She will see a geneticist who will go through our family history, look at Aerynns signs and symptoms and conclude if we are dealing with a form of dwarfism or not.

Fourthly to meet with a dietician who will build a plan for future food challenges and trials.   And

Finally for her to be vaccinated under medical supervison.  William had a really bad reaction to the MMR vaccine and due to Aerynn reacting quite strongly to previous vaccinations and her following a lot of Williams traits healthwise it is deemed safest to vaccinate in hospital or not at all.  Due to us almost losing William to Chicken Pox I have seen the effects of what happens when vaccination is not completed or available so am a very strong supporter of vaccinating children.  In saying that I also acknowledge everyone has their right the right to choose what they do vaccination wise, however William currently being not up to date with the schedule of vaccinations and will never be due to his reactions I am acutely aware of making sure we have the highest possible coverage in our family to stop these diseases getting too close to him - called Herd Immunity ;)

So it's going to be a BIG week for Little Miss A and I, but hopefully we will finally come away with answers and a firm plan on which to move forward with. 

For now, we have 3 weeks in which we can FINALLY start planning something.  We can stop living in limbo not knowing what is happening from one day to the next and be certain we can have a happy first birthday with our littlest princess and build some happy memories of this time with her :)  Only 9 days until she is officially one year old!!!!  I can't believe how quickly that time has flown!!!

The "Toddles" Have Begun!!!

It all started 2 nights ago...

Aerynn peeked around the corner of the lounge, giggled, let go and took a hesitant step towards me, fell on her bottom and looked up with the most astonished look on her face - she did it!  She got up again and took 2 steps and then again 3 steps!!! After being a star cruiser around the furniture and holding hands she finally had the courage (or simply didn't realise) to let go and take a step!!!

She still isn't quite off and walking yet, but that will come in time.  For now we're happy to enjoy watching her take a few steps here and there; giving a cheeky grin and letting go and falling into taking a few toddles before falling again... it's all part of becoming a toddler :)

Any day now I can see she will take off.  Her confidence is blossoming and you can see the thought process happening behind her eyes "should I let go and take some steps or get down and crawl" 

Stop Trivialising!!!

I've come across a rush of people of late who either are incredibly insensitive, downright stupid or plain mean.  These are people who want to compare Aerynn to their children when they are living completely different situations.  I'm not meaning parents with other children who had FPIES or RSS or other medical issues which are similar, I'm talking about parents who have healthy children.  Children who are growing and can eat and even more disturbingly parents who have been caught outright LYING about their childrens size and trying to turn our situation into competitions for one reason or another.

I can't fathom WHY anyone would want to do this! What satisfaction do they get from saying their children are smaller than what they really are?  What do they get from messaging me privately saying their child is the same size as Aerynn so there is nothing "wrong" with her and I should stop making things bigger than what they are and just get on...  There have been the kind of parents who are sickly sweet and appear to be supportive on the outside but then their words are laced with poison which eats away at my self confidence and starts me questioning what we've experienced, seen and are fighting for with our littlest Miss.

I really want to take a minute and scream "JUST STOP IT NOW!!!!!!"

Our situation is NOT like yours!!!  The fact you point out how healthy Aerynn looks, how she has fat rolls and looks a bit of a chunka is part of why we are in the situation we are in at the moment!!!  YES she is doing wonderfully well in regards to LOOKING healthy BUT she's not growing at a normal rate!!!  and on top of that SHE CAN'T TOLERATE FOOD!!!!  Your children, who apparently resemble my daughter have grown, they ARE growing... They CAN eat...  Do you see the difference, can you see my frustrations???

You don't have to worry about what CRUMBS they may pick up off the foor and react to because you've not vaccummed in the last hour... You don't need to worry about your children sharing food with each other when teaching them it is good to share (just not food Dommy, just not food my sweet beautiful boy)  You don't have to worry about getting sick yourself because your breastmilk is your childs only source of sustenance and nutrition and you can't afford to get sick or compromise your own milk supply.  You're not up holding your screaming baby all hours of the night as her body fights the cramps and reactions for those tiny crumbs of food they may find during the day, or washing mucous and blood out of nappies because you can simply toss your disposies out with a normal childs healthy bowel motions.  You're not pushing back tears on an almost hourly rate, worrying about what the future may hold not just for your baby but for the family as a whole; as your older children struggle with puberty and entering their teen years and you know you're not 100% there for them as you should be because of the time, energy and emotional expense you have to bear to keep your baby child as healthy as possible. You simply do not know what it is like to walk even an hour in my shoes SO DON'T COMPARE!!!!!!

Don't you DARE trivialise our situation by saying that your child is exactly the same BECAUSE THEY'RE NOT!!!!  Every time you do that show me how shallow, nasty and condescending you are.  You're playing games with my head and it's cruel, heartless and downright nasty!!! To put doubt in another mothers mind about how they are raising and caring for their child is low, the lowest of lows.. no the lowest of lows is when you fabricate your childs size to make mine look more "normal" and "acceptable" and then publicly keep raising how similar our children are... 

So just keep your opinions, comparisons, patronising comments, personal messages, shallowness and plain old nastiness away from me!  I don't need it, I don't deserve it and nor does my daughter or family!!!!

Stop trivialising our situation 

because it's not something to trivialise and brush aside!!!

                                             **********

Phew, that was good to get out.. but seriously, we need positive people around us.  Telling us how "normal" Aerynn is doesn't help because she's not your average 12 month old.  Patronising "glass is half full" comments may be great from time to time, but sometimes all we need is to vent, get the negatives out despite seeing the good behind things, not be told how lucky we are all the time, or how things can be worse or the likes...  I see the bright side of things, I know there is light at the end of the tunnel and I know that Aerynn is perfect the way she is... I try to be as positive about everything but I am human and sometimes I need to have a negative spiel and with this kind of thing there is a time and a place...

Fpies is Not New To Us...

Our experience isn't our families first taste of FPIES  Our middle boy, William, is a FPIES success story. 

William had his first symptom of food allergy and intolerance at 3 weeks of age.  He was breaking our in eczema and hives from foods that were in my diet.  After I recovered from the shock of my GP at the time telling me his reactions were all in my head and I was suffering from PND (yes he WAS that callous!!) we sought a second opinion after second opinion when things weren't working and we were running out of safe foods and discovered not only did he have FPIES but also life-threatening allergic reactions.  He was in fact so sensitive he was airborne allergic to peanuts.

We had to learn to draw adrenaline up from an ampule with a syringe and practice injecting oranges until we were confident we could do it in our sleep as he was too small for an epi-pen.  We had countless sleepless nights watching his respiration praying that he would continue to keep breathing and the swelling would go no further.  Dozens of failed food challenges and trials but lots of interesting kitchen experiments with some unheard of grains and products!  We lost friends over Williams condition because they couldn't understand how a little boy could be SO sensitive to food.  I ended up being a recluse as we discovered the dangers of visiting other people because of food risks and contamination...  but to see our now 11 year old William now you'd think it was another child, not the one who was only able to consume neocate formula for his main nutrition for almost 3 years!!!

It was a struggle to get through.  Wil also failed to thrive (nothing to the extent of Aerynn though) and when we took him for his 4 year check up with the paediatrician she told us that she had never though that day would arrive.  She thought we were going to lose our little William!! 

I think I just wanted to note here that we HAVE done the FPIES and allergy journey before.  We HAVE come through the dark tunnel successfully and we CAN do it again :) 

Just in Case Your Were Wondering....

Dog food is still a no-go zone for the little Miss :/  This time it wasn't us being slack and leaving food out, instead she has learned how to get into the drawer where the puppy treats are kept... getting toooo clever by far!!! 

         

         Apparently chicken Schmacko's ARE tasty, 

                     and not only to puppies!!! 

The result after an hour or so was not so pleasant :(  Wind, cramps followed up with 3 mucous filled nappies.. poor bub, I wonder if she'll learn her lesson this time???

Unusual SPT Reaction...

Aerynn had a negative result to the SPT's she had at the RCH.  They tested soy, peanut, dairy as well as neocate, pepti jnr and elecare formulas.  She had a 1x1mm wheal come up to the pepti jnr and to dairy but as they were less than 3x3mm and smaller than the histamine they were negative results. 

BUT NOW 24 HOURS LATER.....

The marks are STILL on her back, and now have pin-prick blisters around the SPT marks!  I've not seen this before and have no idea what it means.  As soon as the RCH are open on Monday I intend on calling them to discuss this reaction with them.  When she was tested they said not to give her any antihistamines as she had a negative result and we haven't trialed antihistamines so no idea if they would make her sick in the place of itchy so leave things be, but I certainly did NOT expect this!!!!

Meeting Lifelong Friends :)

Ok, her life hasn't been all that long yet but Aerynn met some babies who's mummies are in the same online "mummy group" from a popular parenting site and now a FB group. 

Aerynn and Crispin actually share a birthday, while Gretel is a few days younger - only a few ;) 

Aren't they just the cutest??? 

L-R Gretel, Crispin and Aerynn

So many captions could fit this photo... 

Gretel - "Ewwww Who farted?"
Aerynn - "He did!"
Crispin - "Did not!"
              
                       ...comes to mind LOL

2 little princesses... discussing fashion maybe??

BTW, these are the boots that added almost 5cm to Aerynns growth when measured a few weeks ago :/  I can see a couple of CM but 5???  Wishful thinking maybe??  LOL

"Quick, she's going to take more photos unless we make a run for it now!!!!"







It was great to catch up with mummies and babies that we've been conversing with since finding out our little cherubs were on the way and now heading towards their first birthdays :)  Makes things feel kinda normal, and knowing that when Aerynn is hospitalised she will have some little friends to visit makes the thought of time away from the family a little easier....