First day with Anat Baniel therapy

Today we had our first 2 sessions of therapy with Marcy Lindheimer. Marcy was very pleased with the progress Bella has made over the last 4 months since she saw her in September and commented on how much more aware and available she is. I think because I see Bella every day I don't notice the changes as much unless I stop to think about them. We are working on teaching Bella to stand up by herself. She has already been pulling herself to standing against people and couches but we will work on her implementation and confidence with this. It is really good to be back in New York and getting another perspective on Bella and how to enhance her development.

Another thing is that Bella is eating really well and is very willing to try new foods which is very 'unlike' her. I believe it is due to the biomedical approach we are taking and the GFCF diet. I think her gut is more 'comfortable' which leads her to be more willing with food.

Max stayed at home today because there was so much traffic after the storm last night that Grant went back home. The tree fellers arrived shortly after and there was no way Grant was going to get Max away from the tree felling action. Apparently by the end of the day he was good friends with all the guys. That is just so like Max!!

Max is going for his Grade 0 assessment at St David's next week Tuesday which I am really upset to missing. I can't believe he is going to big school next year. Here is a picture of Max the night before I came to New York.

Cockroaches and Poo

Today started off rather early. Bella woke up at 3:30am so we had a very early morning before heading off to Toys R Us in Times Square. We then had a good nap at lunchtime before heading out this afternoon. As we were leaving a huge cockroach about the size of a R5 coin scurried across the floor in front of Bella. Initially I thought it was a peach pip rolling across the carpet. It seriously freaked me out so I asked the hotel to clean out my room on our way out. (I am sure the haven't so the king kong of cockroaches is still lurking in here somewhere).

Bella has not had a poo since we left Sout Africa other than a small one this morning. We went to a small diner called Josies for a early supper and just as my food arrived Bella had the most explosive poo. The people at the table next to us heard the noise and looked at us. I quickly picked her up to take her to the toilet only to find that the poo had gone all the way up her back and down her leg and was very visible on her white vest. I then saw that my cream top was also covered in the stinkiest poo I have ever smelt. It was so embarressing!! I have never seen a take away box packed and a bill paid so quickly.

After a big bath I decided I needed to take all the clothes and towels to the laundromat because I certainly did not want to attract any more cockroaches into our room. So we spent the rest of the evening at the laundromat.... Not what I had envisaged myself doing in New York :)

Tomorrow is our first session with Marcy. I look forward to seeing Marcy again and seeing how Bella responds to the ABM therapy.

Back in the Big Apple

Bella and I are back in New York. It seems quite surreal and almost like I never left because everything is so familiar. Which is a good thing. The trip here was much harder than last time because Bella was not happy to sit in one place for so long. She really wanted to crawl all over the plane which is fantatstic that she is getting so adventurous. Here she is with one of the few times (for safety and security reasons) that she was allowed on the floor.

The weather is not as cold as I was expecting but still cold enough. Bella is not happy about being wrapped up with a beanie on her head. I managed to coax a smile out of her in the second photo.

Yesterday Bella and I met up with Lori, an old friend of mine and had some lunch.  I had to keep Bella awake to try get her onto New York time but she was sobbing with exhaustion by the time she went to bed last night. 'Poor wee lamb' as Magogo would say......
Today I did some shopping and and have already broken my rules but all the winter sales are on!!!!!!!!!!!

We start therapy with Marcy on Wednesday and I am very interested to see what she says about Bella's progress in the last 4 months. She is doing so nicely and is now bear walking all around our hotel room including up a stair into the bathroom so I better go rescue her. Bye..

Can't believe I didn't tell you...

how Max superglued his eye shut in December. He was trying to build a chicken house and rubbed superglue in his eye. Here he is in the emergency room after having his eyelashes cut open and his eye cleaned.

January 2010 - Full steam ahead

Its only the 12 January and it has been a hectic month already...

We went to see the DAN practioner on Wednesday last week and she has put Bella on GFCF diet and a whole range of supplements. We are sending some tests off overseas to confirm what she saw in Bella's live blood analysis. One of the tests required her hair to be sent to the lab so I had to cut off a huge patch of hair at the back of her head which looked so silly with the long curls on top of Bella's head. In the end we had to cut most of her much shorter which is quite upsetting because I was enjoying 'styling' her curls with pretty clips etc. Anyway, small things..... We started Bella on the new diet regime and she is definitely sleeping better and seems a lot brighter and doing a lot more exploring around the house. Its hard to pinpoint it to the diet because she has also finished the Phenobarb completely. I would love to chat to some Moms who have done the whole GFCF thing.

We went back to the Opthalamologist for a check up because I had noticed Bella seems to have a squint developing. The eye doc was very happy with improvement in her vision since October 2008 (when she now tells me Bella couldn't see anything). She said that her vision is perfect and that the squint is quite common and she thinks unrelated to Bella's other problems. It will either go away or she will need glasses or eye surgery. We have to go back in April to see what has happened. I discussed this with Bella's OT and she has recommended some eye exercises to strengthen her eye muslces if it is just due to eye muscle weakness. It is quite possible so because it is an intermittent squint which happend randomly in both eyes.

Bella had her check-up EEG yesterday which was supposed to be a 2 hour sleeping EEG. I didn't sedate because she normally doesnt react well but instead decided to time it over a sleep time. Needless to say Bella thought it would be way more fun to pull the cords of her head and try to climb out of her pram.

After her EEG cut off the offending glue with the extra long curls to try and turn her bad hair day into a good hair day..

We should get the results of the now 20 minute EEG this week before we leave for New York this Saturday. I can't believe how quickly time has passed and we are off for our second Anat Baniel Method session. I am not sure what I want to come out of this session. Last time I wanted Bella to crawl but I do not want to push the walking yet because she needs to spend a fait bit of time crawling. So I think I am just going to go with the flow...

I am so stressed out about leaving Max. I have had the feeling that he is more prepared for it than last time but as the time draws nearer I can see that he is starting to get stressed :(

The next time I write I will probably be in New York.

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.