Blog 65 - Plastic Surgeon is Happy with Nick

Nick went back to school, on the Monday of the second week of school, in February. He was very excited to be back with his friends.

At the end of that week we took Nick back to see the plastic surgeon. There was a mistake made with his appointment and we had to wait 1 1/2 hours for Nick's chart to arrive. We then saw the plastic surgeon's registrar for a minute. He checked Nick's wounds and said to come back in 2 weeks.

Yesterday we took Nick back again. This time we saw Dr Lewandowski. He was very happy with Nick's progress. He just said to massage Nick's cheek scars to help break up the scar tissue. He also said that Nick's mid-face will recess over time and his lower jaw will continue to grow, so even though at the moment Nick has a big over-bite this will lessen over the next 8 years. Time will tell if he will need any further plastic surgery. (At the age of 17 final surgeries or tweaks are performed).

An eye appointment was made for March 22, when Melissa is booked in to have her left eye muscle assessed. Until then he wont wear his glasses.

Dr Lew said to come back in December with Melissa which is their usual annual review time. Yay!

Nick glided out of the hospital - he was so happy!

Wow what a feeling to know that there probably won't be anymore plastic surgeries for Melissa or Nick, for at least 6 years!

© 2012 by Jenny Woolsey

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Blog 64 - Memories of Nick from Birth-9 years

We very happily brought Nick home from the hospital. He was still a bit jaundice so we had to place the bassinet by the window so he could get some sunlight.

He had trouble breast feeding because his little mouth was so small, so we persevered for a while. By 6 weeks he was on the bottle, just like Melissa was.

We had some problems settling him and I took him to the Health Clinic's sleep clinic to get some suggestions. It wasn't long and he was sleeping well.

Nick also had silent reflux. The only indicator being that his head was continually tilted to one side. The Health Clinic nurse picked this up and we treated it with anti-reflux formula.

Apart from those few things Nick was an easy baby. He was placid and happy.

Melissa to begin with didn't cope very well. We were on the count down to Nick's birth when he suddenly made his appearance - so that, and the fact that she was woken up in the middle of the night on the night of his birth, stressed her out and she ended up being sick.

In earlier blogs I have talked about the operations that Nick has had, so I won't re-hash them...except to say that he was always a placid patient and coped with the ops as well as he was able to. Nick has always shown quiet courage.

Some things about Nick:

When Nick was little he loved Elmo and his favourite toy dog, Flynn. Flynn went everywhere with him.

We took Nick to playgroup, then he went to Kindergarten, then school.

He took his first steps in my classroom.

As a toddler Nick loved dressing up and playing with his big sister. Nick also loved puzzles.

Everywhere he went, Nick was accepted by the other children. In Kindergarten the teacher did do lessons on how our faces are all different because some of the children were asking questions about his eyes.

In Prep it soon became obvious that the girls loved Nick with his best friend being a little girl called Ezrie. He has progressed through school hanging out with his harem of girlfriends, being invited to their birthday parties...generally enjoying his life. Academically he is an A/B student.

As Nick has gotten older he has found that he has little in common with the other boys. He owns no trucks or cars or other 'male gender' toys. But he does own every known type of doll. He loves craft and fashion. Nick is a chatter box and he loves to swim, dance and sing.

In the last couple of years he has developed a liking for Spongebob and Moshi Monsters so at least he has something that he can take or talk about with boys if he needs to.

Nick is unable to do any contact type of sport or any sport which may impact his face because of his craniofacial surgeries, so that cancels out a lot of activities that he can do, that are male oriented....which I guess also adds to his more feminine qualities.

We have encouraged Nick to be himself. We have not tried to conform him to the world's ideals of what boys should be like, nor have we encouraged him to be feminine.  We were told by the plastic surgeon when he re-constructed Nick's forehead and he brought it a long way forward, that Nick would have a large frontal lobe so he would be sensitive. Whether this is the explanation or the fact that Nick has sisters, or whether it is just him...we don't know. But we accept Nick for Nick and we do not attempt to change him. Except Joe did refuse to paint his room pink!

Nick happily takes his dolls with him to church and out and about. The only place they don't go is school. Boys who like girlie things are not well accepted by the other boys so we try to protect him from being teased by helping him choose which lunchbox, bag etc. to choose which suit his personality but won't lead to teasing. Nick has a vivid memory of being teased by some boys when he took his Dora doll to school in Prep. We try to avoid those situations for him.

Nick knows that he is different to most other boys but he is happy with who he is. Melissa loves that he is into girlie things as she has someone to play with! I have learnt a lot from Nick. His self-confidence blows me away. The way he doesn't care what other people think of him, blows me away. I always wanted to fit in, even as a child. Nick has taught me a lot.

Happy Birthday Nick!

 



© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

 

Blog 63 - My Memories of Nick's Birth on his 9th Birthday.

Happy 9th birthday Nick!

Wow where have those 9 years gone?

Let me cast my mind back 10-11 years to where Nick began.

Nick was hard work to conceive. I had miscarried the baby after Melissa at 11 weeks, just after my dad had passed away. I was devastated. After not conceiving for a while, temperature charts found that my cycle was all out of whack and I needed to go on fertility tablets. My ovaries became enlarged so I had to stop taking them. For months, every morning before getting out of bed, I would take my temperature, and map it on my temperature chart. When the temperature started to rise it meant I was starting to ovulate and the 'trying for the baby' began..every 2 days, rain, hail or shine. We had to mark our tries on the chart. Joe was sick one month so we didn't try and the obstetrician went mad at us!

I have a memory of being in the hospital ward with Melissa when she had her frontal orbital advancement...I had the thermometer in my mouth when a nurse walked in. She asked me if I was sick. I had to explain to her what I was doing! I felt really embarrassed.

We did end up trying, for more than a year. Not really sure how long. It was a long time. A marathon. Joe remembers vividly me saying 'Let's go.....Are you done yet?' Not romantic at all...with disappointment each month when I got my period....but we were able to achieve our desire for a baby....Nick

When my period didn't arrive we excitedly did the pregnancy test and it was positive. Then the stressful time of waiting to see if he would survive to the 12 week mark, as I had lost two babies at 11 weeks. He did!

At the first scan we were told that Nick's nuchal translucency test showed that he may have Down syndrome. The blood test ruled this out.

We continued on with the pregnancy. I felt good. At the 20 week scan we were told he was a girl...this then changed to a boy at the next scan.

The pregnancy continued on well. I enjoyed the pregnancy. Scans showed a high likelihood of Crouzon Syndrome so we went into the birth knowing that and being ok with that.

I was booked in for a c-section but Nick had other ideas of when he wanted to make his entrance into the world.

The 22nd of February 2004 was a 42 degree day. We had gone home to my parents' house for the day as they had air conditioning. That night there was a massive thunderstorm about 7.30pm. I wanted to have a shower but couldn't so lay on the couch to wait out the storm.

About 11pm I had my shower. After coming out of the shower I sat on the bed and felt a sharp pain in my abdomen and there was a gush of water. Melissa had been a planned c-section so I had not experienced my waters breaking...I presumed that this was what was happening but was unsure. I called out to Joe and we both panicked - what would we do? We rang the hospital and they said to come in. I quickly packed a bag and we rang Mum. We had planned for Mum to come and babysit Melissa, but she didn't want to drive 30 minutes in the thunderstorm in the middle of the night....so we woke up Melissa and the three of us went to the hospital. Melissa was not quite 3 years old.

God was good for we drove through the storm without any dramas, and when we got to the hospital it stopped raining in time for us to get out of the car. I remember sitting on a pile of towels in the car, feeling very nervous. I was examined by the doctor and told that yes I was in labour and I needed to have the c-section immediately. I also was going to have the c-section performed by him, the on-call obstetrician, not my own.

There was no one to babysit Melissa, so Joe and Melissa waited in the waiting room whilst I was prepared for the emergency c-section.

The drop in air pressure that night caused many women to go into labour - I was not the only one.

When Nick was born I saw him and knew straight away that he had Crouzons - he had a fused ridge of bone down his forehead and his eyes were bulgy. I did not need to ask.

What was freaking me out was that there was no cry,. I was calling out the doctor, 'Is he alright?' and there was no answer. I continued to call out to the doctors.The adrenalin was pumping through my body and my heart was beating so fast! I didn't want to lose this baby!

Eventually the nurses reassured me that Nick was alright. I wouldn't believe them until they showed him to me as he still hadn't cried. Nick needed oxygen, a massage and he needed to be cleaned out... But Nick as we now know is a fighter and he was ok. His apgar score at 1 minute was 6 and at 5 minutes was 7. He was 2950g and 48.5cm long..

I saw Nick again in his humidicrib when I was in recovery. All was fine. Joe and I were ecstatic.

He looked like a baby monkey with dark hair all over him. We were told that the dark hair was due to him being 3 1/2 weekx early - he had not cooked long enough.

The hardest thing about Nick's delivery, was not having Joe there to tell me what was happening. I felt so alone.

My obstetrician had organised for an experienced paediatrician from the Royal Brisbane Hospital to be at my planned c-section so he could look after Nick. Unfortunately because Nick was born out-of-hours we had the on-call paediatrician. This paediatrician had only seen Crouzons in her uni books. She tried to tell Joe that Nick did not have Crouzons and that he did not have craniosynostosis. Joe laughed at her. The fused ridge of bone down the middle of Nick's forehead was so obvious (I think she was only looking at the typical suture that fuses with Crouzons, but my family does not follow the general diagnosis, and that suture was still open) and his bulgy eyes were so obvious! We obviously knew way more than she did! She wanted to send us to a particular hospital, but again Joe told her that we needed a referral to the Mater Hospital, to see Dr Lewandowski, who was Melissa's plastic surgeon. We were not impressed.

The paediatrician wanted us to keep coming to her so she could learn more about Crouzons....we did not see her again after his 6 week check up!

After a week in hospital we took Nick home.

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 62 - Op #9 Nick's Lefort III RED Halo Is Off!

We are finally on the other side!The halo was removed last Tuesday 29 January. It was put on last year on Tuesday 8 October 2012.

The day was a long one.

There had been flooding from an ex-tropical cyclone the few days before the operation date and to begin with we didn't know if we were going to even make it to the hospital, but the main roads into the hospital were accessible.

After we arrived we were told that the Plastic Surgeon was coming up from Sydney where he had been for the weekend..... and he had been delayed at both Sydney and Brisbane airports so Nick's operation would be later than expected.

Nick was 4th on the list.

We arrived at the hospital just after 8am and he went into theatre at 2.15pm. It was a very long emotional day for Nick. The Starlight Room gave some relief when he was teary and hungry.
He jusr wanted to get in that operating room and get it off!





Whilst in the Day Unit Waiting Room Nick had numbing cream applied to his arms and hands. The plan was to put in a canula before surgery and he was to be given a sedative. Then the Plastic surgeon would cut the wires etc..so that the anaesthetist could put the mask on Nick for him to go to sleep. The numbing cream the nurse put on his hand did not work having been on too long, so he felt the canula go into his hand. He cried and he said he could feel it and it really hurt - Nick has a high pain threshold so I knew it must be really hurting him! I held in my tears and comforted him. It is so hard watching your child in pain.

After the canula was in and the sedative given, Dr Lewandowski comforted Nick to calm him as Nick was starting to get scared. He cut the wires that attached the halo to his mouth plate and cheekbones and removed the black bar so the anaesthetist could put the gas mask on.

Nick was nervous but brave. He took deep breaths of the gas and slowly drifted off to sleep.

Once asleep I kissed him, prayed a silent prayer and left...as I had done so many other times.

The waiting then began. It wasn't too long and Matt the Plastics Registrar appeared in the Parents Waiting Room to tell us that everything had gone well. The halo had been removed, the titanium plates in his cheekbones were gone and they had shaved some sharp bone off the cheekbones to make a better shape. He had cuts on his cheekbones with dissolvable stitches, and wounds above his ears.

We saw Nick in Recovery and then he went back to the Day Unit Ward. He was sore and a bit spaced out but ok. He ate and drank and it wasn't too long and we took him home. We got home about 7pm.

Boy did Nick look different!

The nurse told us to put ice packs on his cheekbones to help with the swelling and bruising that was starting..and to give him nurofen.She had already given him some paracetamol.

He slept on the banana pillow which kept his head at an angle to help with draining of the swelling.

This has continued. We are putting Chlorsig cream on his cheek scars to help prevent infection. Later we will use Vitamin E cream to help the healing.

Nick does not like his new look. Melissa said exactly the same thing after her halo came off.

It is a huge deal psychologically to look into the mirror and see a different person staring back at you.

Because of his swelling and bruising he has not liked going out and hasn't wanted to go and see his friends at school...but that will come.

We are praying that the bruising and swelling around his eyes will not last too long..and he will be back at school with his friends real soon.

 

Nick 1 February

© 2012 by Jenny Woolsey

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Blog 61 - In Memory of My Dad

My Dad passed away from a heart attack on New Years Day in 2003 - 10 years ago today.


I have written a poem in memory of Dad. My Dad was my hero and he believed in me. Even though I struggled emotionally with having a craniofacial syndrome, my Dad accepted it and sought for me to have the best life I could. He pushed me out into the world and encouraged me in everything I did. He was always proud of me. For that I am thankful.

 

 1 January 2003 was that fateful date.

The date my Dad’s soul went away.

The date his heart ceased to beat.

For me a truly awful day.

 

Shock, bewilderment we all felt.

It was too quick to say goodbye.

Dad was happily eating lunch with me, cracking jokes,

asking about Melissa…

I didn’t know he were about to die.

 

Dad had one heart attack at home.

Mum took him to the ER.

Then another one struck him whilst in there.

It damaged his heart muscle too far.

 

Being called into that conference room,

Being told that Dad was no longer here.

Then seeing him on that bed…then in his coffin,

Brought floods of endless tears.

.-.

Growing up I was ‘Daddy’s little girl’.

We had a special bond.

I was the apple of his eye.

Of me he was very fond.

 

Dad was so proud of me -

My achievements, ambitions and dreams.

He hugged tightly and encouraged always.

He was permanently on my team.

 

Dad taught the world about Crouzon Syndrome.

An embarrassment I was not.

His education of society back then,

Would have helped acceptance of me a lot.

 

When it was time for me to have,

Both my big facial surgeries.

Dad was there to support me through.

I remember being in ICU and him reading me stories.

 

As an adult when I was recovering from domestic abuse,

Dad was my backbone.

He gave me inner strength,

He helped me to stand up tall,

And to go out on my own.

 

When Joe had visa problems,

Dad stepped in straight away.

He helped us find help to sort it out,

So Joe could come back to Australia to stay.

 

When Melissa was born with Crouzons,

A wonderful Gramps he was – the best.

During Melissa’s first op he held my hand,

Helping me to cope with the stress.

 

In 2002 on Anzac Day,

Dad marched proudly carrying the NASHO flag.

We excitedly watched him walk on past.

Mum, Joe, Melissa and I giving him a big wave.

 

Then on Fathers Day 2002, there was Pop, Dad and Joe.

Unbeknown to us, the final one.

So too Christmas Day –

That red Santa hat and lots of fun.

.-.

So many wonderful memories -

Camping at the beach and Dad drinking cups of tea.

Fishing, body surfing, canoeing, boating, going for drives,

Scotch Finger biscuits and Have-a-heart ice-creams.

 

Helping me to play tennis,

Dancing with Dad, acting silly, whistling and singing songs.

Eating Cadbury Dairy Milk chocolate and sharing his oranges with me.

In Dad’s eyes I could never do wrong.

.-.

The world has been a better place

Because my Dad was here.

He remains permanently in my heart.

I will always hold him dear.

 

I love you and miss you Dad. xxx

© 2012 by Jenny Woolsey

No part of this blog may be reproduced without prior permission

Blog 60 - New Years Eve 2012 Reflections

Today is New Years Eve. With Jessica being a runner and not liking loud noises, we will be steering clear of outdoor fireworks. Instead tonight we will stay home and play boardgames with the kids and they can watch the Sydney family fireworks on tv if they wish to before they go to bed.  Joe and I will then hang out watching a movie.

NYE is normally a time of reflection...on what has been and hopes for the future year. This last year has been like most years for us -  a busy one.

The most significant events from 2012 for the Woolsey family were:

* In January Jessica started school. As I have written about in previous blogs, she has Down syndrome and although she is high functioning, going to school caused us many nights of restless sleep. By her choice, by the end of week 2, she was in mainstream full time. It hasn't been an entirely easy year for her or for her teacher, but she has done well overall. The main benefits of mainstream for Jess have been her speech and social development. Academically she is low but she was not the only child in her class with learning difficulties.
In 2012 Melissa went into Year 6 and Nick into Year 3. They both have also had a good year. Melissa in particular has blossomed into a self-confident young lady who loves being on stage.

* In March Joe turned the big 5 0 and we had a celebration bbq lunch at the park where we got married, with Mum and our friends. It was a nice celebration.

* In September we went to Bribie Island for our annual family holiday. Jess spent hours at the playground and Melissa and Nick loved the beach.

* A week after the holiday Nick had his big facial operation (Lefort III advancement via the RED). The movement of his facial bones took 1 month and then the frame stayed on for 3 months. (the halo frame is on until the end of January). More on this further down.

* In November we were blessed with a new kitchen and appliances to replace our 30 year old kitchen where the oven and 2 of the stove burners did not work anymore. We love it!

Mixed in with these major events were weekly speech and occupational therapy sessions for Jessica; dance and swimming lessons for Jessica, Melissa and Nick; and Girls and Boys Brigade for Melissa and Nick. There were the usual school activities and Melissa went on school camp which she loved. Nick also went on Boys Brigade camp. It was the first time he had been away from home by himself. He also had a good time while I was at home worrying about him.

And I taught part-time with Joe being the carer doing the therapy sessions and frequent hospital appointments.

Managing Daily Life

We continued to manage Nick's Coeliac Disease and tried to broaden his food choices.

We also had to manage Jessica's behaviour and her lack of understanding due to her intellectual impairment. She has been very strong-willed and stubborn. She would dig her heels in and refuse to do what she was told. Rules, routines, consequences and rewards had to be regimentally implemented. Because of this behaviour and her love of silently running off there were many things we would have loved to have done but couldn't. No camping anymore - we got a unit at the beach for our holiday where the door was always locked...in the shops she was constrained to the shopping trolley as much as possible...when out as a family it was everyone's job to keep an eye on her...but even so she did manage to run off on us all and cause some anxious moments until we found her. On numerous occasions she also ran off at school, thankfully not out of the school grounds. God kept her safe.

Nick's facial op of course was the other majot event for the year and needed a lot of management. What we have gone through is documented in previous blogs. The first month was incredibly hard, watching Nick dealing with the pain of having the bones in his mid-face region moved forward about 2 cm. Providing him with food he could eat posed a challenge and keepiong weight on his small frame posed another challenge. And also our family activities have been curbed massively. These 6 weeks of Christmas holidays are not the normal ones. No swimming, no playcentres, no playgrounds, no bikes, rollerblading etc etc...we are at home, with the children playing on their electronic devices and playing with their toys. That's it. It is hard to read about all the fabulous things people are doing on Facebook, when we are doing very little.

The main life lesson for me this year has been ACCEPTANCE.

* Acceptance particularly of my circumstances.
* Acceptance that my family's daily activities are dictated by the disabilities that the 5 of us have.
* Acceptance that financially we are coping but it is hard. There is no money for luxuries.
* Acceptance that we can be happy and content when we dig into our faith daily and trust that God has everything under control. We can only see a moment in time whereas God can see the whole picture.
* I have also accepted that I must not work for material possessions but for God and God will bless me for my committment to that. I must be Jesus's hands and feet on this earth. This year I have had a very difficult group of youngsters with many behavioural, social and emotional issues. Knowing I was being Jesus's helper enabled me to have patience and to care for them as well as teach them. Each person is loved equally by God.

Wishing you a happy and safe New Year!

© 2012 by Jenny Woolsey

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Blog 59 - The Weaver

I was tidying out some drawers today and found this poem.

The Weaver

My Life is but a weaving
between my Lord and me;
I cannot choose the colors
He worketh steadily.

Oft times He weaveth sorrow
And I, in foolish pride,
Forget He sees the upper,
And I the under side.

Not til the loom is silent
And the shuttles cease to fly,
Shall God unroll the canvas
And explain the reason why.

The dark threads are as needful
In the Weaver's skillful hand,
As the threads of gold and silver
In the pattern He has planned.

He knows, He loves, He cares,
Nothing this truth can dim.
He gives His very best to those
Who leave the choice with Him.


Because God is already in our future He can see the pattern of our life. He can see the dark times we have gone through and He can see what we have learnt from them and how we have grown in character and strength.

© 2012 by Jenny Woolsey

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