EEG Results

Bella had her EEG which went ok despite the horrible sedation. She was knocked out for a full 16 hours but was quite chirpy when she eventually woke. There was another baby in the ward you had Measles and was very sick. Our doctor advised us very strongly to give Bella the measles vaccine and I think I did it because of being in the hospital already and being super stressed out. I wish I didn’t do it because it goes against all the work we have been doing from a Biomedical perspective. She also ended up having a reaction with temperatures but otherwise was ok.

Dr T phoned me back yesterday with her EEG results and said it was all clear. Yay!! Her background waves were good and no seizure activity. So now we need to start considering what to do with her anti-seizure medicines.

Bella’s iPad arrives this weekend with the Peacocks all the way from London which is super exciting. I just need to get the Wi-Fi network setup in our house because there are no 3G services for iPad’s in South Africa yet.

I have stopped smoking again… lets hope it last this time.

The 8th of July again

Last year on the 8th of July I wrote this post : 8th of July 2009

Its that time of year again and in line with true Bella style it will be another auspicious day. We are going into Sandton Clinic for a 12 hour overnight EEG. The purpose of the EEG is to see how Bella is doing and if all is good to possibly start weaning either her Tegretol or Keppra. The weird thing is that it was the 8th of July 2008 that her seizures stopped and we will be in the exact same hospital room as we were then. I am taking it as a good omen but am still quite freaked out about the thought of a trip down memory lane....

Last year Bella sat up from lying down for the first and when I look back to that milestone and where she is now I see how far she has come in the last year. It really is amazing.

My thoughts are of course on little Ruve and her family and hopeful for what the next year brings.

After a 3 month Siesta...

It has been 3 months since I last posted on my blog. This is aprtly due to being completely hectic and also because I just needed a break. So much has happened so this may be a bit of a long ramble...

Bella's news

Bella has made some good progress in the last 3 months, especially in her gross motor skills. She is pulling herself up against couches and cruising along them. She has even let go with one hand and is cruising with one hand. She now climbs up onto the couch all by herself and knows how to turn around and come down off the couch by herself. I feel that she is very close to walking by herself and so do her therapists.

She is now completely off Phenobarbitone and has been for 6 months. Her Tegretol levels are quite low at the moment but she seems to be coping. We are going to do an overnight EEG soon just to double check everything is ok and then consider weaning her off either the Tegretol or Keppra. Bella managed to catch chickenpox which really worried me because I have not had her vaccinated against chickenpox. We started her on an antiviral immediatly because of her other issues and she coped fine! For a while I really doubted my decision not to vaccinate her but I think all of the work we have been doing on her immune system with the DAN diet really helped her get through it.

I have been a bit concerned about her fine motor and speech development. She has been making progress and is now reaching quite a few of the 18 month fine motor milestones which is really good. Her speech therapist has seen a big improvement in her choice making but I still often wonder how much she understands. Last night she really seemed to understand me when I asked her to put a block into a container and I felt like we had a breakthrough. I am looking into getting her an iPad with either Voice4U or Proloquo2Go which Caleigh has been doing so well with and which Nathan's Mom  has found so many other applications which can be used on it. The only problem is that it is not in South Africa yet and no one really knows when the iPad's will be released in South Africa. I think she will love the iPad and the teaching possibilities are endless...

Bella is really loving her horse riding and has settled in beautifully at Moms and Tots. I started taking Bella to Moms and Tots in February so she could start interacting with other children. We started in the baby class 12 - 18 months and she seemed to struggle with all the noise and sensory stimulations. I was about to stop going because I was worried about stressing her out but then something changed and she really loves it now and is really blossoming in teh class. She will be starting at the Moms and Tots school Plumtree next year in the 2 - 3 yr class for a few mornings a week. I think she is really going shine there with Haloise.

I went on an introductory HANDLE course for 2 days which is in my mind somewhat of a amix of brain gym and sensory intergration therapy. I think it is very powerful and would recommend any mom with a child with delays to look into it. I have been doing a lot of work on Bella's vestibular system via the HANDLE method and can see that she is more focussed and is 'stimming' less.

I took Max and Bella for their first photo shoot together and here are some of the pictures.

They were just so special and its great to have some pictures of the two of them together.

As you can see Max is very protective of his little sister and Bella adores her brother

  

We have also been a bit worried about Bella's eyes because she seems to have an intermittent squint and the Opthalmologist suggested that she may need surgery. Her vision is fine but every now and then she squints her right eye a bit. I am not sure I want to do something as invasive as eye surgery at this stage so am waiting to see what happens. I have noticed that since I have increased the dose of her Omega 3 oils her eye squints less and her eye contact has improved.

I really feel that her progress has been helped a huge amount by the DAN diet and biomedical interventions.

Max's news

Max has grown so much in the last few months and  some of the things he says and does astonish me.. He is just so clever and insightful. He is doing well at school and is a natural sportsman. From rugby, soccer, golf, tennis, swimming, fishing and bicycle riding he just gets it so easily and quickly.

For his birthday he got a fly flishing rod my dad and he learnt how to cast the rod so quickly. We went away to Doornkop and had a great time with my Dad and Louise

Max has been so excited for the World Cup soccer being held in South Africa. On the 9th of June Bafana Bafana paraded through the streets of Sandton and thousands of people came out to support them. The atmosphere was electric with thousands of Vuvuzela's making a huge noise. 

Max turned 5 on the 4th of June...I can hardly believe how quickly the time has flown. My baby boy is not such a baby anymore :(  I have been a bit distracted with Bella over the last 2 years so sometimes I feel like I have missed out on things with Max but I have made a strong resolution that it stops now!!

There is so much other news but some of it deserves a post on its own like our dear Aunt Gigi......................

Hopefully I will be able to find the words to write about this.

Grandpa has improved and is stronger than he was when I last posted. He is now out of hospital in San Sereno frail care. Its been a long road so far and will continue to be. In the meantime we are lucky to have Granny (aka MaGogo) staying with us for a while. Bella adores her and her I am sure that the time they spend together in the evening has helped Bella become part of the "in crowd' (able to put objects INTO a container)... Thanks Gran

Untill later....

Cath

A yellow hula hoop

On Monday at Bella's physio session my perspective on everything changed all because of my amazing little girl and a yellow hula hoop. Nicky (Bella's physio) held one side of a yellow hula hoop and Bella held the other side. Nicky started walking backwards to try get Bella to follow her. I expected Bella to sit down and refuse but instead she followed Nicky and walked holding onto the yellow hula hoop. She walked not just a few steps but big laps around the room.... I cant describe what I felt at that moment other than to say that my little girl is amazing and I love her and I love being her Mommy.

We have had quite a hectic and rough start to the year but life is good, Bella is great and Max is so precious. Here is a picture from christmas with Max and his amazing Dad in Simonstown.

 We didn't know it at the time but our christmas holiday in Simonstown was the last one with everyone there as it has been for the last 15 years. My gran and grandpa will be in Johannesburg from now on and it will be fantastic to have them so close. Max has been an amzing little boy with MaGogo and his compassion for her and Grandpa is so heart warming. He has seen so much in terms of hospitals and illness in his life with Bella and now Grandpa. It makes me sad for such a little boy to have experienced it but it has helped him become the caring and compassionate little M.A.N that he is. I am so proud of him!

Our last visit to Bella's neurologist in February I have not had a chance to write about. We have finished weaning Bella off the Phenobarbitone and Dr T discussed starting to wean her off the Tegretol and Keppra. This was something I was not expecting at all. We will wait until our next visit in May and take it from there.

Bella is really blossoming at the moment, which is exactly what happened after our last Anat Baniel intensive therapy session in September last year. She is pulling herself up against the couches and tables so easily. She lowers herself very well when she wants to sit down and even cruises for a few steps along the couch.

Happy Birthday my little dove

Dear Bella

Happy 2nd Birthday my little dove. I am sorry that this message is late but you know how busy we have been with Grandpa in the hospital.

You are an amazing little girl who has brought so much happiness to us all.  I am so proud of you and how much you have achieved this last year and how you always have a smile no matter what. I love you more than words can say and look so forward to watching you blossom this next year. I promise to always love you, stand by you and encourage you to be you.

Love Mommy

Here are some photos of you at the beach at Chrismas time

Please Pray for Grandpa

MaGogo and Grandpa came up from Cape Town last week for Bella's 2nd birthday. On the morning of Bella's birthday Grandpa accidentally fell down a step in our house and broke his neck. Luckily it did not severe his spinal column so he still has function in his arms and legs but he is still in ICU. The doctors tried to operate on Thursday last week but were unable to fuse the spine. He spent a few days in Halo Traction which seems to have stabilised his neck. He is still weak but seems to be improving. Please pray for Grandpa's speedy recovery.

I will write an update on Bella and my long awaited post on New York as soon as I can.

Another brief update and a guest appearance

Since I have been back from New York I have been to the Pilanesberg and Cape Town. It is now 2 days from Bella's 2nd birthday and I am still battling to get back into my routine. I have not yet had a chance to write up a post on New York. GaLou has been far more diligent and given me her post which I have included below.

Briefly on the Bella front, Bella stood up all by herself last week without holding onto anything. I unfortunately did not see it and she has not done it since, but she can and she will when she decides to... She can also do all the actions to the song "Pat a Cake" which is amazing.

MaGoGo arrived today to be here fore her Great Grandaughters 2nd birthday. Its going to be a great week.

Without further adieu....

GaLou's New York post

It is now over a week since we returned from New York, and Cathy has asked me to write something for her blog. By way of introduction, I am one of Bella’s “extra” grannies, affectionately known as GaLou, so named when big brother Max was first learning to speak. I was lucky enough to spend some time with Cathy and Bella in New York last month, a city I had never visited. I guess January is not the ideal month to see New York for the first time – somewhat grey, and definitely chilly to very cold but none-the-less, it was a wonderful experience.

I went to most of Bella’s therapies with her, and it was really nice to see it first hand, but more so, to see the progress she made so quickly. Marcy worked a lot on trying to get her to stand and one evening, when Cathy and I were sitting on the hotel floor, Bella calmly put her hand on my knee and stood up! Not for long, but she definitely made a stand! She also worked on getting Bella to use her fingers to press buttons on her toys rather than giving them a heavy whack to get the music to play, and we also saw progress in this regard.

I managed to do a bit of sightseeing both with Cathy and on my own at times. I visited the Intrepid Museum, a retired World War II air-craft carrier which I thoroughly enjoyed, although I did not enjoy getting home afterwards. None of the taxies would stop for me and I ended up walking about thirty blocks back to the hotel, through some very dodgy areas, promising myself never to go anywhere without Cathy again. However, I did venture out alone again, went up Rockefeller Centre (in the mist), walked through Central Park and saw Grand Central Station. In between the three of us also managed some Harley Davidson shopping for Grandpa, had some wonderful meals, and cruised the shops in Columbus Circle, as well as Toys-R-Us in Times Square.

Most of all, I enjoyed spending so much time together with Cathy and Bella who, almost all of the time, was the most delightfully smiling little angel, as you can see in the pictures Cathy has already posted. Her smile slipped a bit on the flight home, when she decided it was definitely not sleep-time and I got to spend nearly two hours with her on the jumpseat in the galley playing “Pat a Cake” – but that’s just one of the many joys of being her granny!

New York photo reel

I have been wanting to write up a long post on our time in New York but have just not had the time. GaLou sent me the pictures she took while we were there so have posted them here in the meantime. Enjoy....

Having fun in the bath!

Bear standing

Bear walking

Just being too cute

Kissing her new puppy toy

Patting her new puppy toy

Loving her duck in her new "beary" cute winter pyjamas

Just taking a break... note the crossed legs

Peeping out our hotel window at the last remaining christmas lights

Shopping

Enjoying a taxi ride

In Times Square

Enjoying her new electric toothbrush

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.

Back to Normal

I have not written anything for quite a while because I have just been busy enjoying being back to normal. For a long time everything has felt like a long hard battle. Recently things have been going smoothly and we have been doing lots of 'normal' things. Grant and I have been to quite a few christmas functions including The Killers concert which was awesome. Bella has been progressing nicely and is very happy. She is improving almost daily now that we are nearly off the Phenobarb (last day will be 28 Dec)..All of her therapists have noticed the change in her. She is far more explorative, focused and interactive. The other day she crawled from the dining room into the kitchen and started pulling the cereal boxes out of the cupboard.

This last weekend we went to our annual kids christmas party with friends and I refelcted on how far we have come in the last year. Its really quite amazing!! Last year Sheens took the kids to feed the bunny rabbits next door and they saw an owl. This year, on Sunday, we saw an owl swoop down onto the tree in Sheen's garden, followed shortly by another owl and then another owl. Three owls in total.....

Max has been such a super star this last year and has really been through a hard time as well. Bella is now at a stage where she can play a bit with Max and he is such a gentle protective brother.

Everything is as it should be and we are back to normal (albeit our new normal)

Phenobarbital Question

Bella had her appointment with Dr T today. Her phenobarb level is 27 umol/L which is well below the therapeutic range which starts at 41 umol/L. Her dose is now 1.8 mg/kg which is also below the normal dose. We are going to speed up the weaning process slightly and she will be off the Phenobarb by the end of December. Even though the level is so low I still worry that it may be having some therapeutic effect at these levels. When Bella was on Phenobarb monotherapy she needed a level over 100 umol/L  and a dose of 10 mg/kg for seizure control so I am hoping that it is not still contributing to seizure control at these levels. Does anyone know if there could still be a therapeutic benefit at these low levels?

On a lighter note Bella is pulling herself up into standing which is a great new achievement.....

Tuesday update

I have been very busy lately and so has Bella.. Bella is now holding her bottle and feeding herself, she can crawl up a stair and is exploring a lot more around the house. The work we have been doing to de-sensitise her mouth seems to be working because she is putting a lot more into her mouth other than just her fingers...

Max had his school concert last week and was a fantastic lion. I cant believe this is his 3rd year at nursery school!! It amazes me how he manages to remember the words and actions to so many songs. Here is a picture of Max just after the concert eating some well deserved cake.

We are seeing Dr T on Friday and will be doing Bella's Phenobarbitone and Tegretol blood levels. Her Phenobarb level should be really low by now and hopefully we can finish the whole weaning process as soon as possible. I am very anxious for her to be off it and to see that she can cope without it.

This week is also special because it is 14 years ago today that I met Grant and it is also Grants birthday on the 1st of December...... Our festive season has officially started!

Sad, grateful and tired

I have had quite a strange week. I have been following little Gavin Owens website over the last week and felt very sad as he earned his angel wings. At the same time am I so grateful that Bella did not have a metabolic or mitochondrial disease as it was initially thought. I am also tired, very tired of not knowing what the future holds. But at least Bella is with me, is moving forward, is wanting me, is happy and is alive!

Holiday photos

Bella loving being outside in the sun

Still teething

Max enjoying breakfast at The Lighthouse Cafe

On the beach and loving the sand. Look at the little hippy ankle bracelet

Brother and sister, like two peas in a pod

Happy and clean after a long day in the sun

My song for Bella

Whenever I hear the song The Climb by Miley Cyrus I think of Bella....
Here are the lyrics. I don't think I need to say more...

I can almost see it
That dream I'm dreaming but
There's a voice inside my head sayin,
You'll never reach it,
Every step I'm taking,
Every move I make feels
Lost with no direction
My faith is shaking but I
Got to keep trying
Got to keep my head held high

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb


The struggles I'm facing,
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it
But these are the moments that
I'm going to remember most
Just got to keep going
And I,
I got to be strong
Just keep pushing on, cause


There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb


There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes you going to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith baby
It's all about
It's all about
The climb

Fishing and drinking Vida coffee

We arrived in Umhlanga yesterday after having a 2 hour delay on the runway. The airplane was delayed due to bad weather. When we arrived Max spotted a fishing net in the hotel shop which we bought. Max then gave Grant and I a lecture on proper fishing protocol. You only ever eat the first fish and the rest you put back. Very importantly you must give the fish you caught a big 'love' before you eat it! This morning he spent a long time in the tidal pools but did not catch anythig. Then.... on our way out he made a beeline for the Koi pond at the hotel entrance and tried to catch a Koi fish!

In New York we worked on Bella's intentions with her hands and tried to get her to take her bottle. This skill has come a long way and she is now reaching for her bottle and bringing it to her mouth. She will even choose which bottle she wants if I put a milk and juice bottle next to each other. This morning we got a Vida E Cafe coffee in Umhlanga and Bella tried to take my coffee cup and drink it. Associating my coffee with something to drink is a big step forward!

Bella loved exploring on the beach and was covered in beach sand from head to toe in no time!

We are going on a summer holiday....

We are going on holiday tomorrow!!! This is a major event since we have not been on holiday since May 2007. We are going to Umhlanga Sands which is right on the beach. Max is super excited and keeps talking about taking swimming slippers (which are in fact flippers). I am also really excited to see how Bella reacts to the beach sand and waves.

Bella is so cute at the moment and has suddenly become very interested in our dogs. She loves to watch them play and squeals with delight! She had a great morning at riding therapy and seemed to really be taking the whole experience in. Too cute for words.

Bella is back

Since we got back from New York Bella has been teething and never quite did what she was doing in New York. I was starting to get a bit worried and was wondering if I had imagined it but Bella is Bella is Bella... She does what she wants when she wants to and last night she was back to her New York self. Lots of babbling saying mamamama, wawawawa and babababa... She also crawled out of Max's room to look for me and then back into Max's room when she heard Grant talking! Yesterday she also had a really good day at Physio and crawled through a long tunnel a few times and she also crawled over a block obstacle course to reach her favourite toy. Bella is back!

For anyone who wants to know more about the Anat Baniel Method here is a link to the website:

Anat Baniel Method for Children

I haved booked to go back to Marcy in January. Marcy's full details are as follows:

Name: Marcy Lindheimer
The Children's Practice: ABM Center NYC
2109 Broadway #9-93,
New York, NY - 10023

"Specializing in ABM for children of all ages in NYC, Chicago and the ABM Center in San Rafael."

Phone: 212-362-8597
Fax: 212-580-8809
E-mail: mlindheimr@aol.com

Home sweet home

We arrived back on Friday after an uneventful flight. Bella has managed this whole trip extremely well!
It was so nice to everyone at home especially Max. He has been so sweet and loving to me but I can see that he has struggled and is a bit insecure. Our garden has just blossomed while I have been away and is looking lovely. It was my Dad's birthday on the 17th so we had a good South African braai on Saturday night. What bliss to eat home style food. Here is a picture of my Dad on hiw new Harley Davidson.

Bella went to see her Neurologist yesterday and Dr T is very pleased with her progress, We are now going to continue with her Phenobarbitone weaning schedule. I am a bit ner vous about it but it will be so good for Bella's development if we can get her off this medicine.

Bella has continued with her crawling though it did slow down a bit for the first few days we were back but she seems to be back on track now. I am busy setting up speech therapy for her now as she is now ready for it. That brings our list of therapies to 9 per week excluding everything we do at home. I am back to my hectic life already. New York seems like a breeze!

Last few days in New York

Bella has been doing beautifully. She is moving with far more purpose and I am really happy with the therapy. I intend on writing a blog which details my understanding about some the principles of the Anat Baniel Method (ABM). We will definitely be coming back again!!!

I have downloaded my pictures and have inserted them in some of my older posts...

We have had a very busy few days. Yesterday we went up to the top of the Rockerfeller centre, this is not for someone who is scared of heights. When you get in the lift they switch the lights off and the ceiling is made of glass. There are lights which light up the elevator shaft so you can see how far and fast you are going up as the lift races (and I mean races) to the top floor. Quite scary. Here is a picture of central park from the roof of the Rockerfeller centre.

Last night we went for a picnic in Central Park in the Strawberry fields just outside John Lennon's apartment building where he was murdered. (V had to educate me on the fact that John Lennon had a song about Strawberry fields). As we were leaving there were people singing and putting flowers down on the IMAGINE memorial mosaic.

It has been so great having V here with me. We have had a great time and I so appreciate her having joined me. Thank you V if you are reading this... One thing I can say is Oh Boy V can shop. Here is her 'Shopping Shelf' after just 4 days...

We are coming home tomorrow and I just can't wait!!