Monday, July 30, 2012

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!!!

Sunday, July 29, 2012

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" 

Saturday, July 28, 2012

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...

Thursday, July 26, 2012

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 :) 

Wednesday, July 25, 2012

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. 


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....

Aerynn's first RCH visit

Ever feel you're setting yourself up for a fall?  I think I did that with this trip to Melbourne.  I went with such high expectations of coming away with a diagnosis on the FPIES, but didn't.  In fact they kinda took the diagnosis away!  Sooo the results of the weekend with Miss A is pretty much a non result :/ They have no real idea what is going on but she did test "negative" (meaning not allergic) to soy, dairy and peanuts with skin prick tests so it does look like we are dealing with intolerances rather than traditional allergies but as to it being FPIES or not is the next question.

From here we are now waiting for a bed to become available at the RCH. She will be admitted for a minimum of a week and the idea is to skin prick test for more allergies (we have a HUGE list of foods to take for testing - yes we have to provide them because they're not normal foods to test for) and then if the foods are negative we will select a few to trial her on and the idea is she will be discharged with 2 foods and a formula for supplementation. How long this will take is anyone's guess. Usually foods are trialled individually for a minimum of 3 days before it is considered a tentative pass (and then usually left a week or two before any new foods are introduced to ensure there is no delayed reactions) so I can't see her being discharged in under 9 days, but then if she reacts and we need to go back to the beginning I guess we could be looking at a few weeks - that would also depend on how set they are on making sure she has 2 foods and 1 formula.

When will all this happen?? Not sure, we're waiting on a call. It sounded like they wanted her admitted yesterday (Monday) but it was too tricky with Nathans work, so it will be anytime in the "next few weeks". I'm hoping that it wont mean Aerynn will be in hospital for her birthday (2 weeks time) but if she is then so be it. Big party on discharge :)

I do have concerns about some things with the visit.  I don't want to think I know more than the Drs though, but why would they SPT neocate saying that they don't believe a child should react to neocate.  SPT's are for allergic responses, IgE mitigated responses... Aerynns reaction to neocate was over 3 days - it was an intolerance reaction, so I really do not understand why this was done.  I hope that they're not doubting her reactions.  I have photographs here that they were not interested in viewing of her in the middle of reactions to different things.  I have documented the times she has had tummy upsets, mucousy nappies, rashes, screams, not sleeping etc etc from different food reactions.  Even though I doubt myself at times with "should I push through" kind of things I KNOW she is reacting!!  I guess we'll see how she goes on admission.  I wanted to get that doubt out in the open to start with as it has been weighing on me a little.

While she is in hospital she will also be visited by a dietician hoping to make up some kind of plan for future food trials, a geneticist to discuss and investigate the Russell-Silver Syndrome suspicion and she will be vaccinated under supervision due to Williams reaction to the 12 month vaccinations.  

Ultimately I am excited to think that in a few weeks we will hopefully have some food she can eat without fear of being sick and a formula for supplementation...  But I'm dreading how she may react to those foods during the trials and the visit being drawn out while finding the safe foods and spending time away from the rest of the family...

Another Possibility???

I really don't know what I'm feeling at the moment.  I thought I was going to be shot down in flames suggesting that maybe, just maybe Aerynn's diminutive size may be something other than food related.  Instead it's been suspected for a little bit, only not raised to me until the timing was right.  And as I raised it first, well i guess the timing is right to discuss it.

There is a syndrome called Russell-Silver Syndrome that Aerynn has several signs of.  It is a form of primordial dwarfism, which if I am correct means their body is in relative proportion.  I don't know if I really want to embrace this suspicion yet.  Even now a while after it was first mentioned it makes my head spin to think that there may be something else going on behind the scenes.  I want to believe that there is something to explain what is happening with her growth, but then to be something that can't be "fixed" is daunting.  I don't want her to have anything but if this is what we are dealing with it neatly packages up a lot of her size issues in a nice little parcel.

The biggest thing that the Paed in Warnambool couldn't get his head around was the fact Aerynn is FTT but has fat stores! She has cute little fat rolls and chubba legs.  All her blood tests came back with great levels.  She is not presenting as nutritionally deficient, so the question is why is she FTT?  Why is she not growing if she is receiving sufficient nutrition to not be lacking in anything and have body fat stores?  And the RSS would answer that questions I guess...

So following our Paed visit in Warnambool we are now being referred to see a geneticist when they go to Warny in August.  I am to take photos of our other children at around 1 year of age for comparison to Aerynn and their growth details. 

As much as it answers questions and makes sense I can't allow myself to accept that she may have this condition.  I guess because we thought everything was food related - to have something else is kind of like overload.  Or is it because I don't want my baby girl to be outwardly different from other children and adults?  I know that probably sounds horrible but I can't think of another way to put it :( 

Anyways, for reference things that Aerynn has that are possibly indicators of RSS - by themselves these things may be common or even considered "normal"  apparently it's when they are all put together in the one box there may be issues...

  • Curving of the little fingers in towards the ring finger
  • Proportionate weight and height under 1%ile, head circumferance normal, on or above 50%ile
  • Blue tinting of the whites of her eyes (I noticed this a while ago when processing her photos but didn't realise it was actual tinting until the paed mentioned it!!!)
  • Cafe-au-late marks
  • Small, pixie like facial features including smallish chin
  • Broad and slight bossing of the forehead
  • Low birthweight, especially when siblings were much higher birthweight
  • Reflux
  • Excessive sweating, especially when sleeping
  • Constipation (uncertain if this may be food reaction related though)
  • Possible asymmetry of her legs. Left leg appears to be slightly longer, needs to be confirmed via xray
  • FTT

Woohoo - We had a "normal" test

Aerynn's urinalysis came back "normal"  Meaning that her lack of growth has been tested for  everything it can be other than a genetic cause. 

I was clinging ontop the hope she was silently in the clutches of a chronic UTI so we could fix her lack of growth simply with a few antibiotics but that's not going to be the case and I'm feeling a little...  I really don't know.  Maybe numb is the right word?  I have tried to be positive and tell myself that all will be right, but the closer we get towards a diagnosis of a genetic disorder (or the RSS that is suspected) I feel the positivity start to slip.  

So all in all a "normal" result is really good... we now start looking at more long term issues that don't have ready fixes or can't be "fixed" at all... 

I know our little princess if absolutely gorgeous no matter what size she is, and if she is meant to be little we will cope, it is nothing tooooo major...  but... but... but... There are "buts" that I really can't put into words at the moment....

11th Months Old...

Happy 11th Monthaversary to our beautiful baby girl.  I am really struggling to comprehend in 4 short weeks you will be 1 year old!  You're our precious little poppet and have brought so much light into our lives and have rounded out our family perfectly.

We love you our Little Aerynn


Brussels Sprouts - Another Fail :(

Going through the list of trialled food I realised we had one more veg in the fridge we had not trialed - Brussels Sprouts!!!!  I know it's not usually a favourite in most households but my husband and family love it :)

So we trialled Aerynn with a little bit of sprouts...  she loved it - hey she loves eating bark to fill her tummy so to eat something semi-palatable life brussels sprouts has to be a luxury for her ;) 

A great night sleep, she slept in 4 hour blocks - something that we'd not had in such a long time after a food trial...  BUT by morning her nappy reeked!!!  I was certain I was going to be met with a huge mess when she finally roused from her deep sleep...  But no, the sprout odour had come through her urine and sweat!!!!  It wasn't until yesterday afternoon that the odour started to ease!!!  Because of the odour I decided not to give her any more sprout for another 24 hours to see how she went in case it was the sign of a reaction.

Last night was hmmm.... testing would be an accurate word...  Up every 1.5 hours screaming for feeds again...  I had a feeling that come daylight we were in for a bad day.. and I was right!! 

Today has had a total of 3 nappies full of gunky mucous and streaks of blood.  She has fought sleep from 7am until just now when I put her to sleep - so 15 hours straight!!!  I've not bee able to put her down, she's sooo clingy and miserable :(  Add to that screaming for almost the last 3 hours and my patience is in shreds....

So I'm happy to mark Brussels Sprouts off as a fail... I think that's pretty much the last veg we can trial now before we see the paed in Warnambool this Thursday..  I was hoping against hope that we can find a way to avoid a long term hospitalisation.  Trying to find something for her to tolerate and see if we can force some weight or growth into her tiny frame...  As much as it's for her health and possibly for the best it scares me that we will be so far from home and family for what is possibly a long time... and as much as we've tried to buy time with different things, I fear time to avoid hospitalisation is running out :(

Little Miss Aerynn

She came into our lives unexpectedly.  We already had 4 children, and planned to fill our home with at least one more little soul. However in the journey to completing our family we had already lost 8 little ones.  The 2 miscarriages prior to Aerynn were late losses so I was losing hope that we were able to have any more babies, we really didn't expect to have the scent of newborn baby in our home again.

We had a perfect pregnancy.  Absolutely no weight gain, no real issues (aside from pinching a nerve in my back by doing too much) and what seemed to be a petite little baby growing inside. 

Her birth was beautiful.  We welcomed Aerynn into our lives at home.  A serene, unassisted water-birth in the early hours of her due date, August 8th, 2011.  Her full name meaning "Hope sent from Heaven"

Aerynn 12 Hours Old

For all intents and purposes Aerynn was the picture of health, albeit teeny tiny.  5lb5oz (2890g) and 44cm long. 

We had no food issues or reactions recorded at 12 weeks of age, I really felt we were safe from the FPIES, intolerance, allergies and anaphylaxis that plagued our younger boys. 

I celebrated too soon :(