Thursday, 19 April 2012


So, after much deliberation, I have decided to give this blogging thing a go, for several different reasons.  I have had a lot of problems posting updates on the children, specifically Rowan, people liking a one up man ship type game.  Personally I left those kinds of games in the playground a long time ago, but unfortunately amongst all cliques of people there is always a competition about one thing or another.  Unfortunately what I have experienced has been who's child is 'sicker', who's child needs more care, who's child has been in hospital most.  I am not prepared to enter into this world, frankly I do not have enough time or energy to deal with all that nonsense.  So, if I put it on a blog, those who actually are interested in what is happening in our crazy lives, can find it here!

I also hope that maybe one day, someone will come across this blog, and find a little bit of understanding, a little bit of information.  We go through this journey pretty much on our own, lots of people dip in and out of our lives, we are thrown into situations we are not equipped to deal with, with people we would never normally associate, and all of a sudden, we find ourselves in an alternative dimension.  There are only a few people who live in this dimension.  It has no name.  It has no rules.  And there is one thing that connects us all.......unanswered questions.  Lots of them.

So, for those who don't know us, or what on earth I am talking about, let me do a little introduction to the subjects of my blog.  One by one.

Katrina is the eldest and the only girl.  She is very bright, and very sensitive.  She is your typical know-it-all 9 year old girl.  She loves reading and writing, she goes to Brownies, and has a very active social life, between Brownies, and Young Carer's she has a better social life than I have!  She loves her Kindle and answering her texts from her friends.  Your typical pre-teen really (yes at 9) While all this is going on, she also has a few other problems.  Due to the situation we have been thrown into with her brothers, she does not have the routine and consistency that most children her age have and inevitably this causes a few problems that manifests itself in the form of meltdowns, and screaming tantrums.  Mix this with the fact that she may also be having hormonal changes, it's a recipe for disaster.  But we, just as the rest of the world, muddle our way through, hoping at some point we will have enough to turn her into a productive member of society.  Many people tell me that if we are going through this now, the teenage years may be a little easier on us.  I am not convinced this is the case, but I haven't given up on her yet, it's difficult living in our house!  I am often amazed by Katrina's ability to cope in a crisis, she has been through a lot in her 9 years, more than most children her age.

Cameron is almost 7, and is the sensitive one of the children.  He is a Mummy's boy through and through.  He gets upset at the smallest thing, while dealing very well with the larger issues in our household.  He is generally shy and quiet, very caring and calm.  We rarely have to tell Cameron off, or ask him twice to do anything.  He has a wicked sense of humour and everyday we see a little more of his personality.  Cameron is exactly like any other almost 7 year old, liking Phineas and Ferb, and Moshi Monsters, playing on his laptop, and loving his cats.  We jokingly ask him if he talks to the cats in some special language as we just don't understand the bond he has with Koko and Pops.  Undoubtedly they are Cameron's cats.  All my children amaze me, all in different ways.  Cameron has a lot of medical labels.  He has a deletion of chromosome 16p11.2.  To be honest, no one knows a lot about this deletion, and as far as we can tell, all it has done for Cameron is affect his speech and language, and his learning at school, and maybe his height (or lack of) although there is always more to learn.  Cameron also has a rare form of Coeliacs Disease, and he can not eat wheat, gluten, dairy, soya, or eggs, or anything contaminated by these allergens.  To the average person it sounds horrific.  And I won't lie, the day we were told we had to eliminate practically everything he ate, I thought my whole world has ended.  But we adapted, and Cameron went from an underweight child to a chubby, full of energy little boy, who began to thrive.  He also has reflex anoxic seizures, he has roughly one a month, and although commonly children outgrow these by the time they begin school, Cameron hasn't, in fact he had one yesterday.  Cameron also has a microtia.  We have never met anyone else with a microtia

From our shy, quiet, child, onto Ayden.  Who couldn't be more different from Cameron if he tried!  Ayden is our little tornado, you know it's coming, and there is nothing you can do to preserve the destruction it causes.  Ayden is loud, and boisterous, and clumsy, and did I mention LOUD!  He may only be 4, but is definitely the biggest personality in our house.  Lots of people see a disruptive, loud, screaming and demanding child.  Which he is.  But, what people don't see, is the caring side to Ayden, the imagination he has is like nothing I have seen in any of my other children.  He will pretend play for hours.  He LOVES Thomas the Tank Engine and the Ipad.  He loves nursery, and has a lot of friends.  He has a sense of humour that only a 4 year old can get away with.  He loves toilet humour.  He is your typical 4 year old boy.  There is more to Ayden though.  He had a rough start in life, although to look at him now, you'd never know.  We discovered that he too has the rare Coeliacs Disease that Cameron has!  He needed tube feeding and high calorie formula, for a while before he started to pick up.  The poor child went from severely underweight, to overweight.  He couldn't win.  No one seemed bothered, until Rowan (who I will get to in a minute) was diagnosed with Growth Hormone Deficiency.  Then a local doctor decided that maybe actually Ayden had the same.  He quite literally is too short for his weight.  He is a classic Growth Hormone Deficient child.  So each night he has an injection to replace the missing hormone, in the hopes that he will grow.  So far his weight gain has slowed considerably, which is good for him in so many ways.  He also had glue ear and a sleeping problem which seems to have been resolved (almost) since his Adenoidectomy and Grommet Insertion surgery a couple of weeks ago.  As Ayden has got older, and we have discovered more about Rowan, we also have discovered Ayden has a few similar problems.  Ayden is hypermobile, and has difficulty walking far, he now has orthotics in his shoes and these have certainly helped his clumsiness subside.  He also appears to have problems maintain his blood sugar levels and this is still being investigated.  The poor boy may also have astigmatism (like Katrina has) and in the next month or so may be sporting a pair of glasses, just like Katrina (although hopefully not purple!).  Ayden is the child I expect to be most affected later on, with living in the chaotic household he is living in.  For almost half of Ayden's life he hasn't has his Mummy or his brother at home.  At just 14 months old his whole world was turned upside down, but so far he has come out with it roaring (literally).  He is slowly beginning to show me unprompted affection, like the other day he stood on the stairs and called me.  He was about 4 stairs up.  I approached the stairs, where my little man was stood with his arms outstretched.  I asked him what he wanted (assuming he wanted to jump off the stairs while I catch him) and he said 'come here' so I moved closer and he gave me a really big cuddle, a proper squeeze.  Cynical mother that I am said 'what do you want?' to which he replied 'I just wanted to give you a big cuddle'.  Since then, every now and again he will come and sit on my lap and want to watch a film, or play a game.  Our bond may have been affected by our circumstances, but we will mend it one day at a time.

And so to our final child.  I feel he will be the one who steals the limelight of the blog.  If it weren't for him, I probably wouldn't have even considered writing a blog.  Rowan is undoubtedly a miracle (sometimes we have other names for him, but I don't want to alienate the younger readers).  Rowan will be 3 next week.  He is a cheeky, lively, happy little boy, who wants to be just like all the other boys and girls.  In a great many ways he is like every other 3 year old, he bites, he scratches, he sticks money in the PlayStation, he annoys his brothers and sisters, he has tantrums, and his favourite word is 'why'.  But in so many ways he is different.  He is a medical mystery.  I have a few friends, who have children with 'unknown syndrome' as their 'diagnosis'.  Rowan has a huge medical history, that literally, written on paper, weighs more than him.  Rowan is a HUGE Mickey Mouse/Donald Duck fan.  I mean HUGE.  I believe a lot of time in hospital, often results in a strong obsession with something.  Rowan may be 3 in a few days time, but he is the size of a 9-12 month old.  He weighs roughly 10kg (on a good day).  Why is he so small?  Well the simple answer is because he is.  He has a confirmed 'calorie handling problem' and a 'high calorie requirement' but other than that, we have no idea what's going on.  Rowan's 'labels' far....consist of.....hypoglycaemia, hypothyroidism, hypothermia, hypermobility, joint pain, reflux, stomach distention, growth hormone deficiency, food allergies, tpn dependant (which is nutrition fed directly into a line (called a Hickman line) which goes into his chest, very close to his heart), he is fed jejunally (into his small bowel) and has another tube into his stomach to drain off the excess gas/fluid to make him more comfortable.  Rowan has quite high care requirements.  He has good days and bad days.  He is just starting to walk independently but will use his Kaye walker, to which the general public find of great interest.  Rowan's biggest 'problem' is his calorie handling.  He requires 4500 calories a day.  The average adult (as I'm sure you know) has 2000-2500 calories a day.  This is a shocking statistic.  But this is part of Rowan.  Rowan has spent 2 years of his life in a hospital.  Flitting between our local hospital and Great Ormond Street Hospital.  Without the open mindedness and speciality of the doctors at GOSH, we wouldn't have Rowan today.  At 18 months old he was just 9lb 12oz, and not in a very good state at all.  I will not go into the ins and outs, as I am sure they will come up as we go along, but this is what has thrown our life into chaos.  Unexpected hospital stays and midnight dashes with suspected line infections (a big risk of having a hickman line), hospital appointments, and therapies.  I can not imagine Rowan without his medical needs, he just wouldn't be Rowan. 

So these are our 4 very different children, living in the madhouse!

As I write, we are waiting for lots of different things to happen.  Rowan is waiting to go to GOSH again for an emergency admission as he's had some problems with his blood sugars recently.  He is also waiting to go to King's College Hospital for a liver biopsy and a skin and muscle biopsy.  We are waiting for referrals to a whole host of doctors, just trying to find a suitable treatment plan for Rowan and see if we can improve his quality of life.  I am waiting to receive my first lot of Open University materials, and we are waiting to hear if Ayden got a place at the same school as Cameron and Katrina.  As always there are lots of things to be 'waiting' for.

I will post again soon, with more updates and more stories!!

1 comment:

  1. Brilliant, informative first post. Congrats on popping your blogging cherry! I've learn more about your family in one read than I have over a long time on facebook!