Tuesday, January 5, 2010

Christmas, New Year and a look back at 2009

I have not written anything for quite a while so sit back and enjoy...

Christmas and New Year

We have a had a wonderful December holiday. We all went to stay with my Gran in Simonstown in Cape Town for Christmas which qualifies as our second beach family holiday. My sister Helen came out from London, my uncle and cousins from Canada and my Aunt and cousins from Minnesota. It was wonderful to see everyone and for everyone to meet Bella. The last time my Uncle Al saw Bella was when she was in a serious way in hospital with her seizures. We have come so far since then.

Max and Bella both loved the beach! Max had so much fun spotting penguins, collecting shells, throwing see weed on everyone, building sandcastles and having brief swims in the cold water. Bella just loved digging in the sand and sitting at the edge of the water. It was lovely for Grant and  I to visit the beaches we went to as students with our 2 beautiful children! I just love this picture of Max walking into the sea early in the morning at Fish Hoek beach.


On New Years Eve, Mom and Lexi looked after our kids so we all went to a party at Gordie and V's. Mom drove us there in Sheens car with us all sitting in the boot. We all had a good laugh because we felt like teenagers again being dropped off at a party by our parents :-) Oh what a night is all I can say... If you want more details you should speak to Helen. And Helen if you are reading this, please hurry up and send me some of the holiday photos you took so I can post them on this blog... Mwah!
I am now back at work getting everything organised for out trip to New York next week for some more Anat Baniel Method therpay. Bella's eyes have started to squint a bit so I have managed to get us an appointment with the opthalmologist this Friday after a lot of begging and pleading with the receptionist. I did not want to wait until February. Bella is now off the Phenobarbitone YAY!!! But she put on a fair bit of weight over Christmas (didn't we all) and so we may have to increase her Tegretol levels. I am desperate to keep her stable as any hiccups and I will have to cancel her trip to New York.

I have also decided to move forward with the biomedical / DAN Defeat Autism Now / Nutrition interventions. I am seeing Carin Smit tomorrow who is one of the only DAN practitioners I can find in Johannesburg South Africa. I am quite excited about this intervention and after a fair bit of research this holiday I think it will benefit Bella. On of the Mom's blogs I read did a great post on alternative therapies which you can access by clicking on this link Alternative Therapies  The very last therapy she covers is the Biomedical interventions.

Max is growing up so fast but still is my little boy. He is so sensitive and caring and I am so proud of him. Some of the things he says are too cute for words and I am planning to do a blog of all of his expressions.
He is staying in play school this year and will only start big school next year. I know he will miss me when I go to New York but I think he will manage better this time..

Oh and by the way, I haved stopped smoking as of  yesterday using Allen Carr's Easyway!

Looking back at 2009

The best way to review this year is to start at the beginning, 1 January 2009 12:01am :

On New Years Eve 2008 Bella had just been released from hospital after having another series of breakthrough seizures. We stayed at home with Helen and Rico and had a quiet night. As the clocked ticked over to 2009 we were listening to the song The Rose by Bette Midler and very worried about what lay ahead for us. At this stage Bella could roll from back to front and vice versa, she could sit with a lot of support and was a very smily girl.

In January and February we had two more incidents of breakthrough seizures and Bella was diagnosed with Cortical Dysplasia on the righ parietal lobe just before her 1st birthday. We were very happy to find that she had a non progressive static condition but this condition or 'label' brings its own expectations.

After February 2009 things settled down for us. Bella did not have any further breakthroughs, she stopped the ACTH steroids and started to progress. We added Tegretol and started the Phenobarbitone weaning process. After the many ups and downs of the year I can list Bella's majpor milestones as:

Can sit up independently
Can crawl on hands and knees
Can pull herself up to standing
Can feed herself with a bottle
Can feed herself with some assistance with a spoon
Anticipates events and sequences
Understands object permanence
Understands cause and effect
Starting to vocalise Ma ma ma
Has seperation anxiety
Can pick up her bottle with one hand
Can do very basic multi-tasks

I am sure there is more but I just can't think of them right now. But most importantly she is a happy, affectionate and playful little girl. I doubt I would have believed it if I had been told where we would be at the end of 2009..
And of course Max's achievments are endless but I will list the ones that I am particularly proud of:

Max knows all of herbs and has planted a beautiful herb and veggie garden with Grant

Max's body image pictures at school progressed from a primitive circle and lines to a body with clothes on and a background of grass, sky, sun and trees

Max has learnt to hit a tennis ball, kick a soccer ball, hit a cricket ball, bang a volley ball with huge accuracy and determination

Max has learnt to swim unaided and is completely fearless about jumping into the pool off a high ledge

Max learnt to ride a pedal bicycle in record time (about 10 minutes)... super balance

Max has grown up into a very empathetic and protective brother. He always considers Bella in anything he wants to do and is respectful and understanding of her current limitations...

Max my boy, I am super proud of you!!! Grant, let me know if you want to add anything

What a crazy and unexpected year it has been. I hope that 2010 brings similar blessings as 2009 did.





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