Honouring the memory of my grandparents

As a child I always knew that my grandfather (or Parp as I called him) had been a prisoner in a Nazi concentration camp during World War II.  Of course as a child I did not fully comprehend just what that meant.  When Parp told me that he had to eat rats and scraps when he was in the camp, I wasn’t sure if he was just trying to get me to eat my dinner or if it was in fact true.  As I grew older and I learnt about the Holocaust,  I realised that he was telling me the truth and the horrors that he had endured were very real.  I also realised that it was actually pretty amazing that he survived and that I even exist today.  If the path had altered even slightly, the generations that followed wouldn’t have existed.  Hence I feel a deep connection to that time period.  I remember watching Schindler’s List and finding it excruciating to watch.  In fact I have only seen it once and can’t bring myself to watch it again.

Recently my family (Verryt) and the family of his best friend who had endured the same experience (Habraken), came together and celebrated the 70th anniversary of the day that they were liberated from the concentration camp (3rd May 1945).  My uncle Hank had created a family website several years ago which documented the family history including the war years – it is an amazing thing to see and includes hundreds of photographs and a family tree dating back to the 1700s.

My father, who knows that I’m quite handy with making videos, voiceover etc, asked me if I could put a film together for the celebration so my first port of call was my uncle and his website.  He was fully supportive of what I planned to do and helped me piece together some of the facts.  No one had tracked Parp and Ties’s journey across Germany through the various concentration camps and after hours of further research, we were finally able to do this.

I have created a mini documentary of their story and presented it at the family celebration.  Everyone was captivated by their story and since then I have had many requests from both families for copies of the DVD which I am currently filling.  I included a map of their journey on the cover and a copy of a recent newspaper article on their story.

I have uploaded it to You Tube and would like to share this with anyone that wishes to see it.

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Update on Dylan’s Perthes battle

In February this year, Dylan went to hospital and had the metalware removed from his hip.  It was just an over night visit and everything went really well.  He was on crutches for a few days but soon there was no holding him back.  The nurses saw his article in Woman’s Day so he was quite the little celebrity and of course, lapped all the attention up.

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We were so relieved and thought we had gotten through the worst – we could finally put the last two years behind us.

Maybe we have …. but just in the past couple of weeks, Dylan has been complaining of pain in his right hip.  He says its like when the Perthes started in his left hip.  Somewhere between 5-15% of kids with Perthes get it bilaterally.  And usually it doesn’t happen at the same time.

At his 6 weeks check up with the specialist, we mentioned it to him.  He closely examined Dylan and his xrays.  He said that there is no sign of it but we need to check him again in six weeks as it may be too early to tell. The pain is probably from Dylan compensating for his limp.  I hope so.  I really hope its not Perthes again.

If it is Perthes, then it will be worse because Dylan is now 2 years older and the older you are when you get it the worse the outcome.  Treatment this time will likely be more aggressive.  I don’t think any of us could handle the body cast for 6 weeks – least of all Dylan.  He’s been through so much.

So it’s wait and see.  If at the next appointment there are no signs of Perthes then I think I can relax a bit and have a sigh of relief.  No use getting worked up about it yet!

momager?

I really don’t see myself as a Momager and I really hope that others don’t but I just about need to quit my job to manage my boys careers!

Let’s start with Liam.  He’s 12, has Apserger’s and ADHD and the voice of an angel.  He has been having singing lessons since he was 9.  He loves performing.  He has been in 2 local musicals this year – he had a lead role as “Poor Baby” in Whistle Down the Wind and was “Bugsy Malone” in the local theatre’s 40 years production.  He also auditioned for Sound of Music earlier this year.  This was a professional production touring from the WestEnd in London. About 800 kids auditioned for the roles of the Von Trapp kids.  Liam got through 2 days of auditions and down to the last 6 boys for the role of “Kurt” before he was cut.  At that stage it was about height.  Liam took it really well even congratulating one of the boys who got through.

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Dylan as Bugsy Malone and me as Dolly

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Lian was selected to sing solo at a recent concert

 

Whistle Down the Wind

Whistle Down the Wind

After that he asked to be signed up with an agent and we found a fantastic one that deals with just kids.  He auditioned for a TV commercial and got down to the last 2 boys but missed out.  He recently auditioned for a lead in a movie and has been shortlisted so we will wait and see.  He has also been competing with his singing and has had an incredible year.  He has won numerous trophies including Most Entertaining Male Performer at the Hamilton Comps and Most Promising Performer under 15 years at the Te Awamutu Competitions.  We are so proud of him!  He has really found his niche!  Below a link to his performance of “Giants in the Sky”.

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Dylan is my 11 year old who has been battling Perthes disease for nearly two years.  He was recently “discovered” by Liam’s agent.  Dylan has never had much interest in acting or drama (maybe a stunt man though!)  We had to video tape an audition for Liam for an overseas movie (I taped it on my I-Phone and edited it with I-Movie).  There were 2 kids parts so Dylan stepped in as the other kid and we sent the video off to the agent.  She really liked Liam’s work but asked if we could put Dylan forward for the other role.  So we had to film a second audition tape, this time with quite a bit of action.  Dylan loved this as he has an interest in Parkour and used to be a gymnast.  He has an amazing, muscular body and pulled of the physical stuff with ease but he also surprised us with his intensity and presence in front of the camera.  I have to say that from the first take of the first scene I shot of the second tape I knew he had something special.  I used mostly first takes for the whole audition tape because he just totally nailed each scene straightaway. The agent said it was rare to see such intensity and stillness in one so young.  The director  and casting director loved it.  Dylan was shortlisted (Liam wasn’t but he handled it really well) so we had to do another 2 videos.

Long story short he got the part and we recently returned from filming Mechanic Resurrection in Thailand!  This move stars Jason Statham, Jessica Alba, Tommy Lee Jones and Michelle Yeoh.  Unfortunately we didn’t meet any of the stars as Dylan’s scenes were filmed before they all arrived in Thailand.  We can’t talk a lot about Dylan’s role and what things he got to do but is was an amazing experience!  Dylan was a true professional and took direction very well.  He received a lot of praise from the director for his screen presence and natural ability.  Since returning to NZ there has been a lot of media interest.  Dylan has been on National Radio, TVNZ’s Breakfast show and in countless newspapers.  He will be appearing in a NZ woman’s magazine in a few weeks.  He has coped really well with all the attention.  To say the whole experience has been like living in a dream is an understatement!

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In Bangkok Thailand

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Boogie boarding at Kata Beach, Phuket, Thailand

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Bangkok, Thailand

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Dylan auditioned for another role before we left for Thailand (in a New Zealand mini series) – he got that part too!  So he has only had two auditions but has gotten both parts which is amazing.  Filming starts in January.  Needless to say he is now very keen to pursue a career as an actor and stunt man!

That brings me to my youngest, Quinn who has just turned 4.  I sent off a photo of him to Pumpkin Patch a few months ago as they were asking for new child models.  Pumpkin Patch is New Zealand quality kids clothing brand.  Anyway, long story short, they asked him to model for them.  So along we went to the shoot – it was at a beach and it was raining on and off and really windy.  There were 7 boys around Quinn’s age in total but they were not cooperating so they got sent home and Quinn finished the shoot.  He loved it!  Totally lapped up all the attention.  He has since done another 2 shoots for them and is now one of their regulars.  It doesn’t actually pay but he gets Pumpkin Patch Vouchers.  As he is my 3rd son, most of his clothes have been hand-me-downs.  Now he has a very stylish wardrobe all of his very own!

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It has been a crazy year with extreme highs and lows in our family!  If you’d told me all this a year ago I’d have thought you were crazy!

So we have a singer, actor and model in our family!  All successful in their own right.  My hubby and I are super proud of each of our boys.  They are truly amazing.  We won’t pressure them to do anything that they don’t want to do.

Its really up to them – the world is their oyster!

Mummy needs to have a life too!

I have been battling depression most of my adult life.  I had quite a bad case of post-natal depression after my second baby (I might do a future blog on that). My “Happy Pills” do help but I know I am happier when I also have an outlet of some kind that’s just for me.   That can be quite difficult to have time for when you have a busy family and job but I am blessed with a supportive hubby who understands and does his best to allow me that time. The thing that has always made me feel good is singing.  I always knew that I could hold a tune but I was always too chicken to take it any further.  Besides, I had no desire to be a pop star or anything like that and life was just too busy with other things.  So  I would content myself with singing in the car, in the shower, while cooking dinner and so on.  My eldest son Liam (who by the way is a wonderful singer) had been nagging me to ask his singing teacher (Sarah) for lessons but I was just too shy and lacked confidence in myself (she has an amazing voice!)  One day though, she held a concert at her home and all her students performed for their families.  Among her students was one adult who was learning to play the cello – she was around my age and was a new beginner.  I admired the guts it took for her to get up in front of all of us and play.  It also inspired me to do something with my singing. Liam took it upon himself to teach me to sing one of his Grade 3 songs (“The Ash Grove”).  He was a hard taskmaster! “Mum stop singing like a pop star.  You can’t slide up and down notes like that.  Don’t sing in your nose.  Oh your breathing is terrible!”  Once he was happy with me, he got me to sing for his singing teacher, Sarah.  I was so nervous but I think I did a good job of it and remembered everything that Liam told me. When I finished Sarah beamed at me and then gave me a big hug.  She told me that I have a big voice and she wanted to help me develop it further.  So I started singing lessons with her.  After a few weeks she talked me into auditioning for the chorus in a local theatre production (something that was on my bucket list!).  She helped me prepare “When somebody loved me” by Sarah McLachlan. I auditioned and was stunned to be accepted into the chorus.  Liam scored one of the lead roles (Whistle Down the Wind – Poor Baby).  So began 3 months of hard work and much fun.  I thoroughly enjoyed it. IMG_3904 Sarah also convinced me to enter into the SAPACs (South Auckland Performing Arts Competition).  I was singing against people half my age who were studying music and singing at University!  I just wanted to not come last!  I did much better than I thought I would.  I got two 2nds and a 3rd (Liam and I sang a Duet). I auditioned for another local theatre production along with Liam and we both got in. This production was a celebration of 40 years of the Theatre companies past shows so there were bits out of all of these.  I was given the solo for Hello Dolly.  This was a huge test for me.  I had a fantastic costume and wonderful choreography but there were challenging parts in the song.  I managed to pull it off!  I was so stoked! IMG_5627 I will be sitting my ABRSM (Associate Board Royal School of Music) Grade 4 singing exam in December along with Liam.  I hope to do another show next year. I also sing Soprano 1 in a local choir.My friends and family have all been to see me perform and have been very encouraging and supportive. If you had told me all this a year ago I would not have believed you.  While it has been hard work with long hours of rehearsing and lots of nervous moments, it has been a wonderful experience.  I have also made a bunch of fabulous new friends.  I wish I had started singing lessons years ago! I encourage anyone who has a dream to go for it!  If the only thing holding you back is fear then take a big breath and push through.  You will never know what you are capable of unless you try.

Custard week

I don’t know why but I keep loading myself up with more and more obligations.  I work, try to run a household ( though if you read my previous blog you will know that I don’t do that particularly well!) run around after 3 children, decorate cakes in my spare (hah!) time and tread the boards at the local theatre company.  Usually I can manage it but some weeks it just falls apart and everything that can go wrong does.  Here is a rundown on last week –

Saturday – at theatre company helping with spring clean (we have a big production coming up so want everything spic and span).  I am putting some props away in the props cupboard and manage to brain myself on the door frame and end up with black eye and major headache.

Sunday night – in bed just fallen asleep when Quinn (aged 3) comes into our room.  “Mummy water came out my mouth”.  I turn on the light and he has vomit caked down the front of his PJ’s.  The mess in his bed that awaits me is epic…. I didn’t know that such a little body could hold so much spew!  The sausages he had at lunchtime even made a reappearance.  I change Quinn and check him over – no temperature and he seems ok.  I hope that this is a one off while I strip and remake his bed.  I chuck the bundled up sheets into the laundry tub to deal with tomorrow (that is going to be delightful). He settles back down to sleep so I think we might be ok.  Wrong!  A couple of hours later he’s back in our bed (“water came out my mouth again mummy”).  This time it is just water and no chunky bits (yay).  I change him again and this time snuggle him in bed with me within reach of a stack of towels – this of course means no further sleep for mum or dad as the wriggling octopus takes over the bed!

Monday – The cat has gotten in on the act and had a huge spew on the couch – we also discover that we need to worm her (eeewwww!).  Quinn is still throwing up.  He power-chucks on the over-sized beanbag in the lounge 3 times.  I call my work and tell them that i wont be in today.  I send the older 2 off to school (school is a 5 minute walk up the road).  About 15 minutes later Dylan comes home complaining that his hip is really painful (he has Perthes Disease – see earlier blogs!)  Ok well I already have one child at home so I keep him at home and give him pain relief.  Quinn continues to throw up and is running a temperature.  I call hubby to bring home some Paedialyte (bubble gum flavour please).  Even though he is throwing up Quinn says he’s hungry and is very cross at me when I wont give him anything except water.  The washing machine doesn’t stop all day and the clothes line is groaning under the weight of towels and sheets and PJ’s.  Luckily it is a fine day so I can get things dry.

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Tuesday – Quinn is keeping down Paedialyte and lemonade iceblocks. He’s still not well but is improving.  Dylan says his hip is an 8/10 on the pain scale.  He confesses to me that he actually slipped over yesterday on the way up to school and landed on the concrete on his bad hip. Dylan has no padding at all (he is a string bean) and the metal plate is palpable.  Falling onto it is not good!  Why didn’t he tell me that yesterday?  I check him over and his hip is bruised and swollen.  He can’t move it as well as he should.  I make an appointment to see our local doctor.  The doctor is very concerned that Dylan may have broken the plate and screws or even the bone and sends us through to Kidsfirst hospital (a place we know very very well!).  By then Liam is home from school.  My hubby is at a conference so cant come home early to look after Quinn and Liam while I take Dylan to hospital.  My kind sister volunteers to have them (hubby will pick them up from her place after his conference) so we head off to hospital with the plan of dropping Liam and Quinn at Aunty Karin’s on the way.  We come off the motorway to head to my sisters and find that the main road is closed and there are detours in place.  the detour is completely gridlocked ( I am losing my rag by this stage!)  What should have been a 20 minute trip to my sisters place takes over an hour.  We finally get to the hospital and of course they are crazy busy.  We have a direct referral from the doctor but will still have to wait for ages.  After an hour in the uncomfortable waiting room memories of our last visit come flooding back (we had sat in that blasted waiting room for  5  hours that time).  No way was I letting that happen again.  I tell the nurse that it’s’ really painful for Dylan to sit for so long and he needs to lie down (all true).  She finds a side room for us which we are so grateful for.  Over the next 6 hours Dylan has X rays, blood  tests, IV inserted and is poked and prodded (he’s a veteran of this).  A junior doctor tells us that he will have to stay overnight (no please no!).  But then the Orthopaedic surgeon reviews Dylan’s xrays – no major damage but a very bruised, swollen and irritated hip.  We are allowed to leave and get home after midnight.  I then have to make fondant piggies for the “Pigs in Mud” cake that I had promised to make for a bake sale at my work (raising money for charity). I get to bed at 1.30am knowing full well that I will have to get up at 6.15 am.

Wednesday – Quinn is back at Preschool today as he seems to be fine now.  Dylan is still really sore so he comes along with me to my work.  Dosed up on pain meds, he plays mine-craft for most of the day while I frantically try to catch up with all the work I missed and meet an important deadline.  Back at home after work Quinn is not vomiting but now his butt is going.  He is not a happy camper!  Some how I manage to finish the “Pigs in mud” cake and make it to my music lesson later in the evening.

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Thursday – at home with Quinn whose butt is very busy (the poor little thing!)  He is back on the Paedialyte.  Dylan is back at school.  That evening I have a massive rehearsal for the show that I’m in (nearly 5 1/2 hours) and I have to perform my solo in front of everyone for the first time (I was very nervous).  I get home at 10.30 and need time to wind down.  Just before I head off to bed Quinn wakes up and I spend the next hour trying to convince him to go to bed. Finally I get to bed at 12.30am but then Quinn is up again trying to get into bed with us.  By this stage I am so knackered that hubby deals with this situation.

Friday – Quinn is much better which is just as well as he has a Pumpkin Patch photo shoot today (he is modeling clothing for them).  We are up at 6.45 and head off to the shoot which is at a beach about 1 1/2 hours north of where we live.  It’s windy and raining on and off but Quinn is a star (this was his first time and he is a natural).  There were 6 other boys his age there but they aren’t listening or cooperating so they get sent home and Quinn does their shots too.  He is asked back for tomorrows photo shoot. I then have to rush back from there to pick up the boys from school  but there are 2 accidents on the motorway which slows things up drastically.  Luckily hubby can leave work to pick them up (he goes back to work once I am home).  Then I have to rush the gang out for Dylan’s drum lesson.  As usual I take Liam and Quinn to the library while Dylan has his lesson.  It’s hard to look for books though once Quinn’s butt starts up again.  So we are backwards and forwards to the toilet then it’s time to pick up Dylan and head home.  My darling  Hubby brings home pizza and a bottle of bubbles (he sure knows the way to his wife’s heart!)  I take over the bottle of wine and drink it all myself (sorry hubby it’s all mine!) hoping that I wont be too hungover for tomorrow as Quinn has another photo shoot and I am performing with a choir in the afternoon!

Mum needs a drink!

This is not a one off.  I often have weeks that look like this.

Outnumbered!

There is a serious testosterone overload in my household.  I am the only female apart from the cat and possibly the goldfish (just how do you tell what gender they are anyway?)  I have 4 boys – Hubby aged 42, Liam aged 12, Dylan aged 10 (you’ve met him) and Quinn aged 3 1/2.

I come from a family of 3 girls and my sister has 4 daughters.  So this boy stuff has been a huge learning curve for me.  Don’t get me wrong, I wouldn’t trade my boys for anything!  They sure are a breed of their own though.  My house is a disaster zone!

Probably what doesn’t help the situation is that my older 2 sons have ADHD and the little one?  Well, it’s probably too soon to say for sure but when i see him eating his dinner I have to say it’s possible.  He sits for about 30 seconds and then is off and then back again for another bite and then off again no matter how many times he is told to sit at the table – he has ants in his pants just like his brothers did at that age.

I am seriously considering adding Ritalin to their cornflakes in the morning! Well actually Dylan is already on it and Liam is on Risperidone for his Aspergers (yes he has that as well as ADHD).  The Ritalin has been a huge help for Dylan.  He could never focus on anything for very long and was struggling at school. He really had the attention span of a chocolate fish with its head bitten off.

The Chocolate Fish is a Kiwi delicacy!

The Chocolate Fish is a Kiwi delicacy!

He told me that he had all these great ideas in his head but when he went to write them down in class, someone had stolen them out of his brain.  I think that is a pretty good description of how it must feel to have ADHD.  Since he’s been on Ritalin he has improved his school work a lot!  His hand writing is still a mess but we are getting there.  He has no side effects from the Ritalin and his teacher can tell if we forget to give it to him in the morning. I’m just going to wait and see with Quinn.  If it prevents him from learning at school then I will get him assessed. At the moment I am telling myself that he’s just being a boisterous little boy.

I used to be houseproud and a bit of a clean freak before I had kids.  But now I have surrendered.  I don’t know what it is about boys but they love destroying things.  Wall paper gets peeled off walls, grout between tiles gets dug out, toys are pulled apart and scattered throughout the house and anything nice that I have either gets broken or lost.  There are foot prints, hand prints and smears everywhere because I have one boy who likes to climbs up the walls like a spider.

We always have at least 2 windows broken in our house at any given time.  As soon as I get them fixed then another one gets broken.  The last one was broken when Liam threw a dinner plate at Dylan – it ricocheted off his head and went through the ranch slider window.  No one was hurt that time.  One time Dylan decided that he could fit out a window that had a safety latch on it – of course the window shattered and he still has the scar on his arse from that one!

I used to have cream coloured carpet (not the most practical choice of colour but it was brand new when we bought the house).  The carpet is now grey and no matter how many times I get the rug doctor onto it and bust my arse cleaning it it never looks clean!

The above is only a snippet of what my boys get up to.  Sharing a bathroom with 4 males is not fun!  If we have a visitor and they ask to use the toilet I have to utter the following disclaimer “there are 4 males in this house.  I cannot guarantee the state of the toilet.”   Of course I am the only one who actually cleans it.

I’m tired just thinking about it!  At the moment it’s school holidays so Dylan is out at Mum and Dads farm and Liam is at my sisters.  So we just have Quinn.  It is soooooo quiet!  Still I miss them.  Not to worry though cause they are all back this weekend!

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Perthes is not the first rare disorder Dylan has had!

When Dylan was 4 years old he developed Henoch Schonlein Pupura (let’s just call it HSP ok?!!!)
In NZ we had a really bad outbreak of Meningococcal Meningitis in the 90’s (I nursed many children with this and sadly saw some of them die from it). The meningococcal rash is really quite significant. It is a petechial rash which doesn’t blanch when pressed. So when my 4 year old son developed this type of rash you can imagine that I totally freaked out! Straight to the doctors but thankfully it wasn’t the dreaded Meningococcal Meningitis. It was HSP. I had heard of it in my nursing but didn’t know a lot about it.

Please excuse the rudey-bum-bum photos

Please excuse the rudey-bum-bum photos

The rash

The rash

Ok so here’s the run down –
Henoch-Schonlein purpura is a disorder that causes inflammation and bleeding in the small blood vessels in your skin, joints, intestines and kidneys. Why this initial inflammation develops isn’t clear, although it may be the result of an overzealous immune system responding inappropriately to certain triggers like a respiratory infection. The most striking feature of HSP is a purplish rash, typically on the lower legs and buttocks. HSP can also cause abdominal pain and aching joints. Rarely serious kidney damage can occur. Although HSP can affect anyone, it’s most common in children between the ages of 2 and 6. HSP usually improves on its own. Medical care is generally needed if the disorder affects the kidneys. (thank you Mayo Clinic http://www.mayoclinic.org/diseases-conditions/henoch-schonlein-purpura/basics/definition/con-20028291)

“Yay” right?

Do you think Dylan was in the majority of kids in which HSP improves on its own?

Of bloody course not!

The symptoms are supposed to subside by about 1 month at the latest. For Dylan they lasted 18 months! He had a really bad case. He ended up under the care of a Paediatrician and a Renal Specialist. He was on medications (Ranitidine and Razene) for most of that time to try and dampen down the inflammation. He developed glomerulonephritis (a type of kidney disease in which the part of your kidneys that helps filter waste and fluids from the blood is damaged) which fortunately was mild and didn’t require him to be hospitalised. In the middle of all this he started school – he still had the rash and other kids teased him about it. His teacher was lovely and sorted them out and took extra care to let me know if Dylan was getting tired so I could pick him up early from school.

During this time he constantly had blood and protein in his urine (he was being tested weekly). He also had to have frequent blood tests. At first the nurses in the lab looked apprehensive when they saw a 4 year old coming in for them to poke with a needle. But they soon realised that this little dude was very laid back and would just roll up his sleeve and let them get on with it without a tear or a whimper. He has always been a very stoic little bloke!

After about 18 months his urine finally was clear of blood and protein so he was discharged from the specialists. For the rest of his life, he will need to have yearly renal function tests as there is a chance that it could return or he could develop kidney problems.

Then the poor little bugger develops Perthes Disease when he’s 9 (thought to be unrelated to HSP). He also had an allergic reaction to something last year (see photo) and reacted badly to the medication they gave him and went crazy (eg trying to jump off the roof of our 2 storey house!)

We have no idea what caused this rash!

We have no idea what caused this rash!

It really makes you wonder sometimes why certain kids seem to get thrown all the curve balls. I know that neither of the diseases that Dylan has had are life threatening but they are certainly life changing.

In NZ, kids with cancer receive a bead for every procedure, test or operation they undergo and they make a long bead necklace. I’m totally for that but I think this should include kids with other kinds of life changing illnesses too.  If Dylan had received a bead for all these things that he has had to endure he would have a necklace just as long as any of these kids with cancer.

Getting back to a “normal” life – maybe

Dylan is back at school and is finding it hard fitting back in as he has been gone so long. He feels that his friends have moved on without him and he is on the outer. He still isn’t allowed to participate in sports yet. Something big has been happening since the start of school that Dylan has missed out on. The school bought a bunch of unicycles and heaps of the students have been learning to ride them. One of them, who is a good friend, can do cool tricks on his. The kids have even been on a national news TV show. Dylan wants to learn to ride one so bad but he is not allowed until medically cleared by his specialist.

The latest X-ray (May '14)

The latest X-ray (May ’14)

After another 6 weeks on crutches we see his specialist. The x-ray shows that the part where they cut the bone is healing well and amazingly, his femoral head is finally starting to grow back. This is big! But it isn’t all good news. His left leg is now 2cm shorter than the other. This is quite significant. The specialist says that it might catch up on its own but if it doesn’t then we will need to look at surgical options in the future. He already will need to have surgery next year to remove the metal ware (but that will be a walk in the park). We will cross that bridge if and when we come to it. Dylan can now walk without crutches for the first time in nearly 18 months (he has a wicked limp due to the leg length discrepancy though). He can start to do sports again (within reason – no rugby). Our specialist appointments are now every 4 months.

He immediately starts to learn to ride a unicycle. He is way behind his friends and finds it tricky with one leg shorter than the other but within a month he is excelling on the unicycle. He asks to go back to gymnastics. I talk to his coach – Dylan doesn’t have the range of motion in his hip he used to and won’t be able to compete (at least not yet). His coach gives him his spot back on the squad but his training is limited to 2 sessions a week very closely supervised. Dylan is sooooo happy to back with his team mates and coach. He has missed it a lot. He is not pushing himself too much so we are just going to see what happens.

Fishing!

Fishing!

Dylan’s Perthes Journey is far from over. There will be more hurdles in the future. But there are other things in his life bigger and brighter than Perthes. He starts learning to play the drums – something he has wanted for a long time. He is a natural. He is glued to his unicycle and goes everywhere with it. He wants to learn to do stunts on it (oh dear god!) Next summer he is going to learn how to surf he has decided. When he grows up he wants to be either a vet or a Park Ranger. He still wants to be an Olympic gymnast too. He refuses to let Perthes stop him. After all he’s been through he has emerged as the most determined and fearless kid I have ever known.

Check out Dylan on his Unicycle at   https://vimeo.com/99576096

 

Dylan my Rock Star

Dylan my Rock Star

Perthes disease is not the only rare medical condition that Dylan has had.  Ever heard of Henoch Scholein Purpura?  I will talk about that on my next blog.

You can’t keep a good man down

On the day Dylan is discharged, I take him to his school to see his friends. They are most impressed with his cool wheelchair and his cast is quickly covered in graffiti. Dylan has missed out a lot on time with his friends. Some have visited him in hospital and all his classmates have made him get well cards. After one night at home with us, I then take Dylan out to my parents farm which is about an hours drive away. Once we are out there I help mum set the house up to manage a 10 year old in a body cast. A visiting School Teacher is arranged – Dylan is not impressed as he maintains that the best thing about school is lunchtime.

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Most weekends Dylan comes back home to us to give Nana and Poppa a break and to allow Dylan time with us. He is coping surprisingly well being stuck in the cast in summer. He is getting very agile with it and can whizz around on his crutches like you would not believe despite not being able to bend in the middle. He gets around well – too well actually.

I’m in the middle of decorating a cake for a friend (one of my hobbies) when I get a frantic call from my mum. Dylan has been out in Poppa’s workshop and has fallen down the stairs onto the concrete floor. His fibreglass cast is broken. What????

Fibre glass cast completely snapped at the knee

Fibre glass cast completely snapped below the knee

We immediately go and get Dylan. He is a bit sore and hit his head but doesn’t appear to be seriously injured. Still, he landed with enough force to snap the fibreglass leg of his cast in half so he could have snapped a screw in his hip or anything. I take him through to the hospital. The ER is a mad house tonight – chocker block with patients needing care. We sit in the waiting room for 6 hours before finally having an x-ray and being reviewed by a doctor. Luckily there is no damage to his hip or any other part of him. They patch up his cast with plaster of paris and send us on our way. The next day I have to take him back to the hospital Casting Unit to reinforce the plaster again.

Hospital visit number 7

Hospital visit number 7

The remaining few weeks at Nana and Poppas are mostly uneventful but I did hear a rumour that Poppa took Dylan out on the boat fishing. Yes in a body cast! He wrapped it in plastic which is just as well. I imagine what the Casting Unit Nurses would say if I took him back with a wet cast that stinks of fish guts! Still, I am glad that the poor kid actually gets to have some fun. Nana and Poppa have been amazing. We are so lucky to have them – without them we would have had to stay in hospital for 6 weeks!

Fishing in a body cast!  Don't tell the nurses in the casting unit!

Fishing in a body cast! Don’t tell the nurses in the casting unit!

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Dylan duct taped a boogie board to a skateboard!

Dylan duct taped a boogie board to a skateboard!

After 6 weeks we go in to have the cast removed. Dylan is soooooo excited. Looking back I really wasn’t prepared for this. If I knew then what I know now! Actually getting the cast off is fine. Ok Dylan does stink a bit and has a lot of dead skin on his body but that’s not so bad. Actually getting him into the car is a problem. He is very very stiff and sore. He can’t bend in the middle still and is behaving very oddly. Not like himself at all. I realise that for 6 weeks he has been like a turtle in a shell. He has had that protection for his hip and now that is gone. He feels incredibly vulnerable and scared. His left leg is positively scrawny and even his foot has shrunk. His hip sticks out at an odd angle.

The long awaited day finally arrives!

The long awaited day finally arrives!

Freedom!

Freedom!

Spot the difference?

Spot the difference?

When we get him home, I dose him up with pain relief and draw him a bubble bath. This he enjoys immensely even if it did make him smell all girly like roses! The first few days are not fun. He can’t sit for long periods and still can’t bend in the middle. I take him to a physiotherapist who gives us some exercises and stretches. After about a week he is much better and more like himself. He still has to use crutches though.

When oh when will life get back to normal?

At last!  A bath :)

At last! A bath 🙂

The Storm

Dinner looks slightly better than lunch did so Dylan has a few bites. But then starts vomiting. It’s not easy throwing up when you are flat on your back and you can’t turn yourself but we manage. The nurse gives him something in his IV to stop it. He tells me that his hip hurts and he can also feel the catheter in his bladder. It is really starting to get to him. I tell the nurse, she checks him over and increases the epidural rate.   This doesn’t help much so she gives him other pain meds while calling the Anaesthetist to review him. She comes and gives him a big dose through the epidural which helps for now. Meanwhile, it is the middle of summer here and Dylan is roasting. I bless my Charge Nurse friend for finding us a fan.

The epidural

The epidural

Dylan 1

Over the next day we have family and friends visit. Dylan is a bit out of it from the meds – his epidural is working on the wrong side so he is having increasing amounts of other pain medications. I know from my experience as a nurse that epidurals are fickle beasts. He doesn’t like being turned but we have to do this every 2 hours to prevent pressure areas. He eventually starts to like lying on his tummy like superman.

Superman!

Superman!

Little brother Quinn finishes off Dylan's Jelly

Little brother Quinn finishes off Dylan’s Jelly

With Dad and big brother Liam

With Dad and big brother Liam

Late that evening, Dylan is starting to get very restless. His urinary catheter falls out and he has to have it reinserted – he is NOT happy about that at all. His hip is swelling up inside his cast and there is not a lot of room in there. He is complaining to me of severe pain but won’t tell the nurses and tries to be tough when they come in to see him. I don’t think they believe me when I tell them that he is in severe pain because he is not crying or rolling around like most kids would. It gets so bad that he can’t hide it from them anymore. It sucks watching your child in so much pain. You just want to take the pain for them but you can’t. I feel helpless.

The on-call anaesthetist can’t leave the OR unit to see Dylan so we go to him. Dylan is wheeled into the Recovery Room. They try to get the epidural to work but to no avail (it’s completely stuffed) and try to bring his pain under control with multiple small doses of morphine – Dylan for some reason is fighting all this good stuff – he is wound up tighter than a spring. Finally a nurse friend of mine, does some guided imagery with Dylan (about flying a plane) and Dylan lets go. He is so off his face it’s almost funny – he is totally hallucinating. At last he doses off, finally pain free.

It was a rough night!

It was a rough night!

We stay in the Recovery Room for a few hours while Dylan is monitored because he has had an adult sized dose of morphine. He sleeps so peacefully. I am visited by a constant trickle of colleagues as they hear that we are in the Recovery Room and come to see us between operations, keeping me company, bringing me coffee. I am really appreciative of how lucky Dylan and I are to be cared for by these wonderful people. The anaesthetist sets up a Patient Controlled Morphine pump. So Dylan can push a button when he is sore and get a dose of morphine but not overdose himself.

Dylan is enjoying having friends visit

Dylan is enjoying having friends visit

Feeling much better

Feeling much better

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I wish Dylan had the pain pump right from the start instead of the stupid epidural because after that, his pain was much more controlled. On day 4 post op the catheter is taken out (he is very glad to have that thing gone) and his IV’s. He doesn’t need the morphine pump anymore and can manage on oral pain relief now. The physiotherapist gets him up with a walking frame. It is awkward but he can get around. A special reclining wheel chair is ordered. This thing is a beast! We are given a special harness for Dylan to wear when he is in the car – he will have to lie across the back seat though as he can’t bend in the middle.  We call it his “Flyboy” harness – it even has a parachute badge on it.

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We already knew that we couldn’t have him at home for the next 5 weeks while he recovers as there is no way to fit the other kids in the car so the plan was for him to go to Nana and Poppa’s to recuperate. After just over a week Dylan is ready to be discharged. We are given urinal bottles, bedpans, extra pillow and equipment to aid his recovery. My car is full to the gunnels! I have to say a difficult time was made easier to bear by the fabulous staff at the hospital. We are very lucky to have such great care available to us.

Ready to go home

Ready to go home

Dylan in his "flyboy" harness

Dylan in his “flyboy” harness

Is it smooth sailing from now on? Hell no! No. See the next blog to find out – just how tough is a fibreglass cast?

Mum needs a drink!