Saturday, 21 December 2013

Blog 72 - All is Good

Here are my three beautiful children - taken today, a few days before Christmas.

Life is good in the Woolsey household.


We all wish you a very happy and blessed Christmas!



© 2012 by Jenny Woolsey

Sunday, 15 December 2013

Bog 71 - Holiday Reflections

It is almost Christmas and the kids are on holidays. My son Nick is counting down the days to that magical day that baby Jesus was born.

As I look back on 2013, I have to say that this year has been an interesting one.
  • It began with the continuation of Nick having his RED halo device on. The device came off in February. 
  • Melissa went into Year 7, her final year of primary school.
  • Jessica went into Year 1 mainstream - a nervous but exciting time.

And now here we are at the end of the year.

Nick's Lefort III was a huge success. His face has settled down really well and we have all adjusted to the way he looks. He does have a deviated septum now due to the movement of the bones but as it is not affecting his breathing it requires no intervention. He also has a lisp as he is still pronouncing his words the same way as he did before his mid-face advancement. We will investigate speech therapy for him in the new year. He had a great year at school, both academically and socially. Nick (or Nicky to his friends and teachers) is a wonderful boy and well liked at school.
.
Melissa has come out of her shell more this year. It has been wonderful to see her self-confidence grow and her ability to make friends improve. She has had a very good year academically, socially and emotionally. A highlight of the year being the presentation of the  'Children of Courage' Award which was presented to her by the local Lions Club for her bravery over the years. I wasn't too sad to see her finish primary school as I know high school has great things in store for her.

Jessica, who has taught us so much about the simple things in life, has done well in mainstream school. She is reading and writing and doing basic maths. Her favourite subject is music. She is a visual learner and amazes us with her memory for people, songs and actions. Jessica is popular with the other children and well liked by everyone at the school. She is educating the world on DS.

I have had to come to terms with the fact that Melissa and Nick are A/B students and Jess is a D/E student... and that's okay.



My year personally has been a hard one. I ended up having another stress burnout breakdown in July. Worse than the one I had had previously which I wrote about in Blog 69. I don't think I truly recovered from the first breakdown and with the situation remaining unchanged, I guess it was written in the wind that it would happen again. Basically I had too much stress on my plate with work, being mum and wife etc. Me, superwoman, learnt that I can't be everything and do everything. Eventually something breaks and it was my body and my mind.

As previously written about, I do suffer from anxiety and depression, and as my stress increased so did my anxiety, and I was constantly sick on top of this.  This all sent me into a spiral which I tried to push through but landed in a heap.

It was an awful place to be but with the support of my hubby, friends and a psychologist I have rebuilt myself, stronger and more aware of what makes me tick. I am working on ways to deal with stress and my anxiety. I am also learning that I have a lot of negative core beliefs about myself that I acquired in childhood and those teenage years by the way I was treated by others due to being born with a craniofacial syndrome, and they still affect me today. Core beliefs of: 'being born different = being unimportant and unpopular'; 'being born different = constant rejection'; 'being born different = not good enough to get what you think you deserve'; 'being born different = not good enough to be a girlfriend'; 'being born different = prejudice because of the way you look'; 'being born different = deserving of mistreatment'.

I am in the process of working through these beliefs, and there are probably others I will discover along the way. Eighteen years of verbal and physical bullying, constantly being rejected by both girls and boys in many situations and never being in the 'popular' group have left emotional scars in my heart and sub-conscious. With the help of God working through my psychologist I am slowly rewriting these core beliefs - these core beliefs are untrue! I am lovable, I am valuable, I am worthy, I deserve good things in life and I deserve to be treated with respect. When the old automatic negative thoughts (ANT) come into my head from now on I will be squashing them as they are all lies!

It has been important for me to work through all of this junk thinking that is stored in my sub-conscious to find peace in my life. God offers peace and heals the hurt and He is doing that for me with the extra help of a person to bare my soul to, who won't judge, who will just listen and explain to me why I did the things I have done over the years. For me it was important to know for example why I willingly went into an abusive relationship then marriage for 13 years (my core beliefs!) God has good plans for my life and for me to go forward stronger and to be sure of myself in Him. I need to dust out the cobwebs and shadows of the past to make way for the sunshine of the future to come in.




As part of my new road to the future I have started to study as well - to become a teacher librarian. I have decided with the 'new' me, and my GP who constantly goes mad at me for being so stressed out, that I need a change in direction with my career. I have been a classroom teacher for 25 years and now it is time for a change. I am sinking my teeth into and enjoying my new found challenge. Can't wait until I am in my own little library world :)



Tomorrow I am going to bake gluten free gingerbread men with the kids!



© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Wednesday, 26 June 2013

Blog 70 - A Sudden Realisation

Well it is the start of the Winter school holidays. It's been a tough term for me with a very challenging class. These holidays are very welcomed! The Winter break, with its cooler weather, in the Woolsey household is a time to do some tidying up.  So the first few days have seen the children tidying and cleaning their bedrooms and the playroom. I have just bought some new pruning clippers and a chainsaw so I have started attacking the much neglected garden outside.
But today it was time for a break. Melissa and Nick have been eyeing up some toys in the Toy Sale catalogues. They've been carrying the catalogues around the house, leaving them strategically perched in places for me to see. They wanted to go shopping with just Mummy - no Daddy and no Jessica. Now that doesn't mean that Daddy and Jessica are unwanted, it just means that they love having my undivided attention and my wallet! And I do love spending time with them. It doesn't happen very often because I work and I am unable to drive. These times with Melissa and Nick are special moments and they always talk about the times we have been able to have them.
The kids and I had a lovely relaxed lunch - they chose McDonald's fries, sundaes and a drink. Nick being on a gluten free diet extremely limits what he can eat that is take-away, and Melissa being the caring big sister she is, is happy to have the same as him.
After having lunch we walked from one end of the shopping centre to the other to visit the stores with the toy sales. We walked around the stores, feeling like detectives trying to find the specific toys they were after. To the delight of the children they were able to find what they were after, and we chose a Dora doll for Jess to take home.
As we were walking back through the shopping centre, stopping to look in other shops, a sudden thought came into my head. We were blending into the crowd. No one was turning to stare at us. No one was pointing, or snickering or making comments. Society, well the people who constitute society, have said that Melissa's and Nick's faces are now acceptable. Melissa and Nick were oblivious to what I was thinking - they were just being their usual excited selves, happy with their new treasures they were carrying, and trying to get me to spend more money on them!
This sudden realisation brought back my memory of when I finally blended into the crowd - it was after my final surgery when I was 18. Being anonymous was like a giant weight being lifted off my shoulders, and at the time I wanted to dance and sing.
Time will tell what happens in the future.


© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission


Tuesday, 7 May 2013

Blog 69 - How to Trust God when Depression/Anxiety Takes Over

I find it all so easy to dig into my faith and praise God when life is going smoothly. Even little bumps in the road are ok to deal with. You know, the times when the kids get hurt, bills can't be paid, a bad day at work, getting sick whilst on holidays...those things that do stress us and inconvenience us in some way....I can still quite easily pray to God, offer up my praise and have faith and trust that God has everything under control.



But...

When my world falls apart as it did last week it is a different story.

I have suffered from depression and anxiety since I was a child. It was never diagnosed and I suffered along life's way trying to keep it under control. It was only 5 years ago that I recognised that I needed medication to keep my mind on an even keel. I am so glad that I did go on the medication because life is so much easier now without the mood dips, the sweats and gastro.

But this year I have a challenging class. I guess the worst I have had in 24 years. The kind that makes you self-doubt your teaching ability. The kind that makes you seek specialist help and to go to every behaviour seminar in the hope that you can glean the magic solution. The kind that wears you out, robs your joy and affects your ability to be a kind mother and wife. The kind that sucks the life out of you. Teachers out there will know what I mean.

Well after only have 2 good days this year with my class, long stressful days with little time off....last week I had a meltdown. I dissolved into tears at school, needing to go home. I felt that I couldn't do this anymore. It was just too much.

My meltdown shocked me. I knew I was stressed but didn't realise how stressed I was. I knew I was tired and I was feeling a little sick but thought I could suck it up and keep on going. But my body and mind said NO.



It was an  instant slide down into the depression and anxiety. I had headaches and earaches, and stayed in bed for 2 days and slept. I didn't want to be a mother or be a wife. I didn't want to deal with anything. I didn't care about anything. I just wanted to sleep.

After those two days the light bulb went off in my head and I realised what was happening and I knew I had to be proactive or I would spiral down into that black hole, where I had been many years before.

So I got up out of bed and my husband and I thought about all the things that I like to do, that I hadn't done for a long time.

We went to the beach and had fish and chips on the beach and I lay on the sand feeling the sun on my body. We had my favourite pancakes and maple syrup at McDonald's for breakfast. We went for a walk in a forest. The kids and I baked cookies together. I spent the day cuddling our puppy. After these things I was starting to feel a little better but not back to normal.

We then went and bought some new gardening equipment - in years past when I have been really stressed, I have pruned trees which has an amazingly medicinal impact on my mind. So for hours I cut, sawed, pruned, weeded - I ended up with swollen hands...but my brain finally felt ok again! I smiled.

The final part of my self- therapy was to go to the zoo with my family. The zoo we went to had my favourite animal - zebras. The happiness in my mind was dramatic. I also talked to the camels, the koalas and the other animals. I took heaps of photos - another favourite activity. We walked for 5 hours and even though my new sneakers hurt my feet, I didn't care. My mind was back in that area of happiness.

I knew I had come out of the other end of this episode.



During this episode I knew I had to pray to God. I knew I should be praising God....but instead I went mad at God.

I had applied for a few jobs both within education and outside of education last year and this year, and God had said no to these. I knew He wanted me to teach this class.

But this class was killing me!  I whinged and whined to God. He was the one who wanted me there and I told Him that He had better sort it out because I was suffering!

You know what image and message I kept seeing in my mind?

Jesus suffered way more than this for you.

Even though I still wanted to grumble....this message kept coming back into my mind.




I felt ashamed and I told God that I understood... but I was feeling so low that I didn't know how to get my mind back to normal. I asked God for forgiveness and I asked him to help me to get out of my depression and anxiety because I didn't know how to. I gave my problem to God and left it at his feet.

And God did provide answers.

* He brought friends on Facebook who also suffered from depression and anxiety to minister to me.

* He showed me that some of my children were missing me and had presents waiting at school for me when I got back.

* He spoke to me and told me to swap my days at work so I didn't have to teach 3 days in a row. I now teach Monday, Tuesday and Friday...which will provide more rest, therefore lessening my fatigue...therefore hopefully helping me psychologically to go to work.



Christianity is easy when life is good. But Christianity is also for when life is bad. God does not abandon us. He is there and even though we can't see him, we must continue to pray, praise and trust. He does listen and He does answer our prayers.



 


© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Thursday, 21 March 2013

Blog 68 - World Down Syndrome Day 21 March

Today is World Down Syndrome Day.

It is a day set aside to celebrate, and to advocate for, people in our world who have been born with an extra 21st chromosome. This extra chromosome gives all people with DS their common almond shaped eyes, low muscle tone and an intellectual impairment. Like all syndromes there is a spectrum of severity.
People with DS are people first. They, like everybody else, have likes and dislikes. They have talents and gifts. They have emotions. They are not always happy as is commonly perceived. They do not all like music as is commonly perceived as well. Children with DS can be very head strong and do need to be managed, just like other children who have strong personalities.
People with DS do learn to read, write and do math. They will just do it at their own pace. They are not tied to Government timelines for when learning should occur. They do everything to their own beat...not the world's beat. They can learn to talk clearly and effectively. You can have a conversation with a person with DS. They do love and get married. They do get jobs. They do live independently or semi-independently. They do represent their countries at the Special Olympics in a variety of sports. They achieve...they live....they love....they have great lives.


But yet we kill them prenatally. People are scared of having a baby with DS. Society's perceptions are that it is going to be a bad thing. I did not know prenatally that Jessica was going to have DS and I would not have aborted her if I had known, as I personally am pro-life. But when we did find out when she was 4 weeks old, I went into deep depression. I had in my mind, told to me by society, that this was a horrendous thing for a child to be born with. I thought it meant that my baby would not learn anything, would be a huge burden on our family....basically that our family life would be bad from then on. But it hasn't been!
It took nearly a year to come to terms with the diagnosis.

Looking back over the past 6 years I can say it hasn't been always a bed of roses, but nor has it been for Melissa and Nick. Melissa was a very difficult baby and toddler. Jessica was an easy baby and an easy toddler. It was when she hit 4 she started needing managing...but many children of that age need managing.

Jessica is in mainstream school. She has friends. She fits in. She is well behaved. She is learning, and like all children, her learning is at her pace. She is not at the bottom of the class academically.

Jessica is confident. She is friendly. She loves music and modelling. She loves playing with her Ipad. She loves playing with our puppy Smokey. She loves playgrounds. She loves her baby doll.

We have great expectations for Jessica. We can see her holding down a job when she is older and living a happy, productive life.


Our life has been blessed by having Jessica. Jessica has opened us up to a whole new world. We have met new people, been new places, and experienced new things. We have had our preconceptions challenged and changed.



My fear with the new prenatal blood-test for DS, that more innocent babies will be aborted and never be allowed to show the world how wonderful they are.

We must stand up for people with Down syndrome and as a human race say that this is wrong!

Happy World Down Syndrome Day from Jessica!

 



© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Saturday, 16 March 2013

Blog 67 - Collect Moments Not Things

This picture came my way on Facebook this week. Collect Moments Not Things. It made me stop and think and take countenance of my life. Where do my priorities lie?
I don't have a hobby where I collect lots of things though I must admit that I do have a liking for zebras and giraffes and have a few posters, figurines, stuffed animals and pillow pets of these around the house. As a teenager I had a liking for Garfield. When I was in my 20s I spent my spare money on Franklin Mint plates.
 
The amount of money spent on hobbies usually depends on the spare money left over at the end of a pay or how much limit is left on a credit card. It tends to be difficult to spend a lot of money on collecting things if you don't have the money to spare. Collecting antiques, sports cars, or works of art are out of the reach of most people. But there could be little things in your life, and mine, that are stealing us away from collecting precious moments in time.
 
Employment with long hours, Facebook, video games, sports, excessive exercise, tv, running after children who are pursuing their own interests - dance, piano, soccer, karate, tennis....all take time out of our day.  I am sure you can identify the things that take up your time.
 
The thing is, we need to find the balance between those things we like to do or have to do, and spending time with our loved ones where precious memories are made.
 
 
 
Sometimes it is good to ponder our moment of passing on, and to reflect on who we would want to be around us, and even what might be said about us in our obituary. Were we kind? Were we loving? Did we show an interest in our children and friends? Did we spend time with our children and partner? Or were we self-obsessed or career-driven?
 
It is essential that we put time into those relationships with the people who we want to be with us at the end of our life. Time builds relationships and the bonus of building relationships is collecting those memories of moments in time......the births, the first birthdays, the plays in the park, the camping trips, beach holidays, cooking together, sharing a book, singing....
 
In January each year I put together a photo book which shows the moments in time that the Woolsey Family collected the previous year. It is so good to look back through the books and see what we celebrated and what we did together. You don't see pictures of stuffed zebras or a new laptop...you see faces of my family at Bribie Island, birthday celebrations, riding bikes, at outings. These are the things we will remember as time goes on...these are the things we will reminisce about when our children have children and when we are old.
 
 
 
So my challenge, as well as to you reading this blog, is to put as much emphasis on my family as I can each day so I can collect those precious moments. And to put less emphasis on the materialistic things of this world, and the activities that take us away from our valued relationships.
 
 
 

© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Blog 66 - Nick Pre and Post Photos - Lefort III Advancement using the RED Halo

Well it's been five months since Nick had his Lefort III mid-face advancement by way of the RED halo device.

I thought you might be interested in seeing his before and after photos. Nick's top jaw was over-distracted because the plastic surgery had to bring his cheek bones so far forward. But over time his bottom jaw will grow forward so the overbite will not be as severe as it is now.


His scars on his cheek bones are slowly fading.



© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Saturday, 23 February 2013

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
No part of this blog may be reproduced without prior permission

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
 

Friday, 22 February 2013

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

Friday, 1 February 2013

Blog 62 - 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



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