Wednesday, 30 November 2011

Why Cameron is No Ordinary Kid - Part 50

Finally our big day arrived. We were leaving hospital.

It was a Saturday morning so Michael was home. I woke up with an excited feeling just like you have on Christmas morning. I'd packed our bags already but there was a little part of me holding back. I'd started to learn to protect my feelings and there was always the possibility that we wouldn't be allowed to leave.

We couldn't go anywhere until our Doctor gave us the go head to leave. As always we had to wait but eventually he arrived and after a  chat and check of Cameron he agreed it was time to leave. He made sure we felt comfortable leaving and that we knew what we were doing with medication. He wanted to see us weekly to keep an eye on Cameron so we arranged to meet him on the ward each Saturday morning when Michael was home. But of course nothing is quick and easy.

We all suddenly realized that Cameron had missed out on his six month old vaccinations so plans were quickly put in place to vaccinate Cameron before we left the hospital. Finding time for the staff to vaccinate him was difficult and it seemed appropriate that a trainee nurse would vaccinate Cameron. We had met so many trainee nurses, doctors and therapists whilst we had been in hospital. But vaccinating a baby is not an easy thing to do and for this poor trainee nurse it became too much. She tried and she froze, in fact she cried, so eventually our nurse had to step in because Cameron was becoming upset.

Finally the paperwork was done, medication organized and appointments booked. It was time to say goodbye. Cameron was completely unfazed by the goodbyes but for me it was very emotional. I was saying goodbye to my home and the people who had been my family for three months.

Saying goodbye on the ward was not easy and eventually become impossible because the nurses were busy. People walked past quickly saying goodbye. There was no time to talk.

Michael took all our things out to the car and all that was left was Cameron, me, a pram and a bare room. It was time to leave but there was one thing we absolutely had to do before we left the hospital.

Monday, 21 November 2011

The Second QEEG

Today we received the results from Cameron's second QEEG at The Institute of Functional Neuroscience. I was excited about today but at the same time I didn't want to let myself get hopeful. What if we had been imagining the improvements we thought we had seen? What if we have just spent A LOT of money and nothing had changed? What if we were kidding ourselves?

My Marvellous Man met us at the appointment and we started with Cameron's normal adjustment. Cam was his usual charming self and wasn't too keen to move when the adjustment was over- he was too relaxed..

After a short wait it was our turn to see Dr Beck and out came the file with the colourful pictures of brains. At first I wasn't sure, I could see lots of colours again but then Dr Beck opened the original test results and laid them side by side. Even I could see the changes. Red areas had turned orange and yellow, blue areas had turn green and red and blues areas had shrunk. It was as obvious as that scan Cameron had the day after he developed Pneumococcal Meningitis and nobody had to point out the brain damage because I could see all the dark areas.

Cameron's brain is changing and it's changing for the better. It is mind blowing to see what has happened in only a month. It was so shocking it was almost unbelievable. Dr Beck was really pleased. How could this happen in such a short space of time? Well, as Dr Beck says - Cameron really wants this.

So now what?

We will continue the supplements and we will continue three adjustments at the Institute each week for the next four weeks and those adjustments will change as well. We'll find out on Saturday how the adjustments are changing.

We make one change to what we are doing at home. Cameron still has to squeeze a ball five times and bounce the ball five times - this morning he tried to catch the ball. He still has to try and pick the card we ask for from 3 cards but now we keep asking until he gets the right card and then we move the card around in front of his eyes to get him to follow the cards all over the place. Sounds weird I know - but I'm not arguing.

The thing that always amazes me is how Dr Beck can describe my son. From the test results he was able to tell us that Cameron is now aware of his spatial awareness and can not help his reaction to his new found spatial awareness.

This week Cameron has started doing something he hadn't done with true vigor for eight years. Destroy the toy room. Eight years ago he used to throw every single toy and sometimes pieces of furniture he could get his hands on. It was a nightmare and I was forever picking up and packing everything away along with throwing away all the damaged toys and sometimes furniture. Yesterday it took me two hours to put the toy area back together. A sixteen year old can throw little Lego a long way and high too. . I still haven't got all the Lego out of the lounge and I had the inevitable pile of throw aways. I don't mind packing up toys - it was a major part of my life when I was working in child care and teaching Kindy and Pre-Primary but when toys are just thrown - I don't cope too well.

Dr Beck says this is Cameron's brain dealing with what is happening and he can't help himself. If he's still doing it in a month then it is personality but for the moment he needs understanding. My response - I am packing away all the construction toys and I'll have a look at Zoe's toys and see what needs protecting - like the china tea set. I didn't react too well this afternoon when he tipped three tubs of construction toys out again. I think I'll let him keep the Primo.

So there you go - we aren't imagining it - Cameron's brain really is changing and it's changing for the better.

Tuesday, 15 November 2011

Something Quite Amazing Happened Today

Today Dr Beck saw Cameron for his normal session and he did something quite amazing. He started the session with the vibrator and he asked Cameron to raise his right hand and touch the vibrator. He kept moving it and challenging Cameron to move with it, which he did with a little difficulty.

He then stayed in one place and asked Cameron to say lalalalalalala. Cameron looked perplexed and couldn't do it. He tried C C C C C and again Cameron looked perplexed. Cameron then lent up and touched Dr Beck's tie and Dr Beck said - say tie. Cameron said in his own way - Tie. They repeated the process playing with it like young children do.

Dr Beck then moved around to Cameron's left side and did the adjustments. He then asked Cameron to say tie. He couldn't do it. As Dr Beck said - it's on the tip of your tongue you want to say it. Cameron was struggling to say the word but just couldn't. Although he continued to play with the tie.

Dr Beck explained that Cameron had been able to say tie when his right hand was being stimulated because that was stimulating the left side of his brain where language is located. When that part of the brain was no longer being stimulated he could no longer make the sound. Pretty amazing!

We've booked in for Cameron's next QEEG on Wednesday. I'm really looking forward to seeing what his brain is doing now, it's all very exciting.

Sunday, 13 November 2011

Time for a Catch Up

It has been so long since I have had to time to write that I think I should start with a catch up. Those of you who also follow the This is No Ordinary Kid facebook page - - will know that I've been busy organizing the backstage for my daughters dance concert which was last Friday. We are now busy catching up on our sleep and energy but life is beginning to return to normal in our household after a very exciting night full of costumes, dancing, curtsies and applause.

When I stopped writing we had just received Cameron's QEEG results at The Institute of Functional Neuroscience and we are now going into the fourth week of appointments - boy time flies.

We have been going to the Institute three times a week since the meeting to receive Cameron's results. It has been really interesting to watch Cameron over those weeks. Cameron is always happy and content around medical people and facilities but he is particularly at peace at The Institute. I can't explain it but it is different. He sits quietly reading magazines, often making sure that I have a magazine too. He notices when the staff walk through reception but doesn't try to grab them or follow them until it is his turn. Then he excitedly follows them to the room he has been allocated which is different every time.

I have had to stop him knocking on doors as he walks down the corridor - slightly embarrassing.

By last week he suddenly did something he had never ever done before in any type of appointment. He sat very patiently waiting and when the doctor walked in and asked him how his day at school was he garbled an incomprehensible explanation of his day. (That took me back about ten years when he used to talk to us but we could never understand a single word - one of the many things we have lost over the years.)

Cameron then stood up and while the doctor was finding his file on the computer he went to the couch, laid down, thought about it, sat up, took off his shoes calmly, placed his shoes together out of the way (that alone is a miracle), laid down in the correct position, calmed himself and waited.

I know this sounds like what you do quite often when you see a doctor but Cameron has never done this and he has been enduring repetitive medical appointments all his life. He has sat on couches, he's sat struggling with his shoes after being directed, he has tried to follow our instructions and got hopelessly confused but not this time. He didn't need me at all, I could have been in the waiting room.

We have noticed changes in Cameron over the last few weeks. Attempts at words, more focus  and seeming more switched on.

We have another week of appointments and then plans will be made for another QEEG so we can see if what we have been doing for the last month has actually done anything or not. Fingers crossed we see improvements.

Over the last few weeks I have met people at the Institute that I have met on line through this blog and the facebook page. Other parents as eager as us to find help for their child. It will be interesting to watch every one's progress and hopefully everyone will find the help they are looking for.

So that is where we are at with Cameron's new therapy.

Special Saturday - Christmas Traditions

This week for Special Saturday we are discussing Christmas Traditions and my family have lots of traditions - some old and some newish.

I don't believe Christmas is just for children and I've learnt that from my parents. We all still thoroughly enjoy our family specific Christmas traditions - Christmas is my favourite day of the year. It's about family, love, surprises and thoughtfulness, good food (allowing for memorable accidents) and time spent together as a family.

Everybody sleeping in our home on Christmas Eve, including the pets, has a stocking and on Christmas Eve we all hang our special, personalized stockings in anticipation of Santa visiting us all during the night. If anyone asks me if Santa Claus is real I always reply with wide eyed conviction that I certainly believe in him because he always fills my stocking on Christmas Eve. (I still have the same stocking I've had since I was born.) Consequently we have two or more of Santa's helpers creeping around the house in the middle of the night and it is always exciting in the morning to see what Santa has left everybody.

Hopefully it won't be until her teens but I look forward to the day I introduce our family tradition to My Little Angel and she joins in the early hour dodging of multiple Santa's creeping around the house. She will learn that the thought and planning for others is far more fulfilling than the receiving.

Our stockings are always placed in the lounge room and we all wake up and find out if Santa has visited us during the night together. We follow My Little Angels lead on discovering our stockings. Traditionally we don't wake Cameron up on Christmas morning, he is allowed to wake up when he is ready and then we all join him and enjoy his discoveries as he investigates his stocking. It's Christmas and the best gift we can give Cameron is uninterrupted sleep. Mind you, there have been some years when the waiting for him to wake up has been excruciating.

The morning is kept for enjoying our stockings and gifts from Santa Claus this helps to extend the excitement and fill the whole day. Everyone gets time to truly appreciate what Santa has brought them.

After stockings we always have a special breakfast and I'm tempted to introduce a new tradition this year which I heard about last year from another family. We always enjoy a special breakfast but this new tradition is a special breakfast laid out and left by Santa Claus. I like that idea.

We introduced a new tradition about six years when I announced that my family was staying home for Christmas Day every year and our families were very welcome to join us but my children deserved to have a calm and relaxed Christmas Day every year without being rushed from house to house and not having time to even open presents some times. My parents and sister join us each year and My Marvellous Man's family started another tradition of all coming together to celebrate Christmas on Christmas Eve. It was the best thing I ever did. Our Christmas days are so relaxed now.

We always have a roast lunch. Over the years we have contemplated a change and despite the heat, here in Australia at Christmas time, the resounding response is NO we like our roast. I always find a new way to glaze a ham and then we have to discuss if this years recipe is better than previous years or not.

My father makes us a traditional plum pudding in a cloth with coins hidden in the pudding. That is a tradition that if we didn't have it, it just wouldn't be Christmas. The excitement of who has coins and who doesn't and how many coins different people find is hugely exciting each year.

Once we have finished lunch it's time to open the presents under the Christmas tree and by then it is mid to late afternoon. We always have a tree, despite what Cameron or the cat might try to do to it and each year I try to find each of us a new personalized decoration to add to the tree. Over the years we have built up a beautiful collection of tree decorations and as we decorate the tree each year each decoration holds a beautiful memory for me. When My Little Angel leaves home she will have her collection of decorations to start her Christmas traditions. Thinking positively - so will Cameron.

 Presents can't be placed under the tree until Christmas Eve and Christmas Day because otherwise Cameron would unwrap them, in the meantime I leave Christmas decorated tins and boxes under the tree. Everybody puts a present under the tree for everyone else, including any guests who join us and the children. It doesn't matter how much you spend, it truly is the thought that counts and we spend a glorious time slowly handing out the gifts and enjoying every one's enjoyment as they open their gifts.

For the rest of the day everyone does just what they want to do - it's Christmas - kick back and relax. Although it sounds like we have a tight plan for our day, we don't really, everyone looks forward to all our traditions so the day flows like a lazy river from tradition to tradition with no clock watching and lots of photo taking, hugging, laughing, joking, enjoyment of good food and drinks and conversation. It truly is the most relaxed day of the year.


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