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!!

The weekend in New York

We had a wonderful weekend in NY with V. The weather was beautiful and we did some serious shopping! Bella only had one session this weekend just to give her a little break. This evening she crawled about 1 meter without a toy to entice her. I was standing in the kitchen and she just crawled to me!!

Yesterday we went to back to Times Square for some more toy shopping and had a lovely dinner at Isabella's.Today we went on a tour and saw Madison Gardens, Ground Zero and the Statue of Liberty to name a few. In between all of this V and I walked about 50 blocks so we are both completely exhausted tonight. We also went to central park and had a horse drawn carriage ride. Tomorrow we plan on going to Harlem and on a harbour cruise.

To end off, I saw another NY character today, a Rastafarian Chinese man doing Yoga on the pavement outside our hotel....

Singing in the rain

It has been pouring with rain in New York today. Bella and I had a duvet day and just relaxed. Luckily there is a laundromat in the hotel so I did some washing. It was quite drama going to Marcy in the rain. There I was holding two umbrellas, pushing Bella's pram and trying to dodge the traffic and the puddles. While I was doing this Bella was squeeling with delight at the wind and rain. Her noises were so cute it sounded just like she was singing in the rain...

Here is a picture of Bella, its not a great one but I really struggled to take a photo in the rain.

My Dancing Girl

We had a good session with Marcy this morning. Again Marcy commented on how well Bella transitions. In fact her exact words were "Bella's transitions are exquisite" and that I must definitely take her for dancing lesssons when she is older because her transitions are so smooth and beautiful. Bella going for dancing lessons is not something I have thought of since she was born. Wow, what a mind shift!!

A lot of the work we have been doing here is trying to develop Bella's intentions. Marcy feels that she has all the capability to move but needs to learn motivation and intention with her movements. She is already more motivated in reaching her toys and intentionally crawling a few steps towards them. Once Bella is completely off the Phenobarb it will also help a lot with her motivation. A lot of Bella's toys are more 'amusement' toys and I need to look for more toys which will require her to do something to get an outcome. I certainly dont need any excuses to shop....

Tomorrow is September 11th and there is a lot of preparation going on here for the ceremonies. The whole block around our hotel has been barricaded so I am sure something is going to be happening in our block tomorrow.

V arrives on Saturday which I am really excited about. It will be really nice to see some of New York with her. I am looking forward to coming home and to giving Max his bag of toys and treats. The little M.A.N has been super brave.

Teething and Rollerblades

Bella has been super grumpy today. Shouting a lot and generally being otherwise. I noticed that she keeps putting her finger at the back of her mouth and when I managed to get a look in her mouth I can see that one of her back teeth is coming through. The inside of her cheek is bleeding and it looks like she has bitten the inside of her cheek. No wonder she has been so grumpy but its really bad timing. She also hasnt done much of her new crawling the last 2 days. But thats how she has always been. I will go and look for some teething gel tomorrow and hopefully it will be better than the South African ones because those dont help her at all. When I went to chemist to see if I could get some Panado or similar, they seemed horrified that I wanted it without a prescription from a Paediatrician. Luckily I seem to have enough with me anyway.

Marcy has also been talking a lot about sensory issues which ties in with what Kate (Bella's OT) says. I also noticed that a fair bit of the work Marcy does is similar to what Nicki does (Bella's Physio). From what it sounds like the Physio's in America do things quite differently to those in South Africa. I just keep realising what excellent Doctors etc we have in South Africa.

The kitchenette in our hotel room does not have an electric kettle. It has a 'pot' kettle which you use on the gas stove to boil water. This was quite a challenge in the beginning but now I am used to it. But, I am really missing Grant's cooking. The food here is so oily and I really dont know what to eat. I can't wait to come home and have some nice clean healthy food. Luckily I brought some Woolies Honeybush Rooibos tea with me.. Interestingly enough Starbucks coffee shop has Vanilla Rooibos on their menu. I must try it out...

I have done a lot of strolling on the streets with Bella. Now I know why Americans call Prams 'Strollers'. Today I saw a very funny sight. I was standing at a major intersection waiting to cross the road when a very old chinese lady flew across the road on a pair of rollerblades. The NY taxi's nearly crashed into her but she just carried on completely oblivious to the chaos she had caused.

More tomorrow..........

 

Day 4 for the Transition Queen

Today was our first day of double therapy and I was a bit worried about it because Bella seemed very sick
this morning. She did really nicely though and I think the antibiotic is starting to work. I was amazed at
all the different people who have come from all over America to bring their children here for ABM therapy
with Marcy. There are even people who have moved to New York so that their kids can have regular therapy. I
met a little girl who had a stroke at birth and is now learning ballet and to play the piano. Wow!!!

Bella had 2 good sessions and I am starting to understand the therapy more, the key elements being information
and differentiation. I am starting to see some progress with Bella and again Marcy commented on how well she
transitions between positions. She even said she is her Transition Queen. Now I am starting to worry about
how I can come back again in terms of money, time, leaving Max etc etc.... One step at a tim for both myself and
Bella.

Session 3

Bella had her third session with Marcy which went much better now that she has finally had some sleep. Marcy is impressed with Bella's movements and ability to transition between positions. She does not think her ability to move is a problem at all and wants to rather focus on working on her 'intent' /  'purpose' when she moves so that Bella can really understand what she is doing.

I have had so many comments on how beautiful Bella is, which is why her name Isabella which means beautiful is so appropriate....

Tomorrow we will have 2 sessions so I am off to enjoy some retail therapy now.

Some sleep at last

At last we had a decent nights sleep. Bella slept from 8:30pm to 5:30am. Yay!!! She has had quite a bad runny nose and a cough and seems quite miserable today so I phoned Dr K and we have decided to put her on Antibiotics just in case. Luckily I brought some Augmentin with me so hopefully this will help.

At last I am managing to get her to eat even though its quite a drama. She is insisting on being on the floor and crawls around to play with her toys. So in order to feed her I have to crawl around on my hands and knees and feed her while she is moving. It is a problem I am ecstatic to have!!!

We have her therapy session this morning so I am planning on taking a walk to Hudson river before her session and on doing some shopping later this afternoon. From tomorrow onwards we will be having 2 sessions a day.

Here is a picture of Hudson river from our walk this morning.

In New York and Bella is crawling

We are here! Bella and I had a long but comfortable flight to New York. Luckily we managed to upgrade our tickets to business class and the seat next to us was empty so Bella had her own flat bed on the flight. Here are two pictures of the little madam on the plane.. I particularly love the first one.

Since we arrived on Thursday Bella has not slept for more than 5 hours at a stretch so we have both been exhausted. She has finally gone to sleep now as I am writing this and I really hope she gets a decent nights sleep. We have had 2 ABM therapy sessions already but Bella was so grumpy that it was quite difficult to do anything. Be that as it may BELLA STARTED CRAWLING the night we arrived. It is too special for words. She is doing her new crawl / hop across our hotel rooms floor chasing her balls. She is clearly very pleased with herself and I am super proud. The one objective I had from this NY trip was to get her crawling and she has done that before we have even started. I think the ABM therapy looks very promising and I hope she is better rested tomorrow so she can get the most out of it.

Since we arrived on Thursday we haven't done too much. We have been to Central Park, Times Square and done a fair bit of shopping. I plan to go on a horse drawn carriage drive around Central Park in the next few days. Very touristy I know but Bella and I will both enjoy it.  This is a picture of Bella in Central Park playing with her piano.

Here is a photo of where we are staying in NY. On the left hand side you can see the blue Hotel Beacon awning which is where we are staying. The large building on the right hand side is the Ansonia which is where the childrens therapy centre is. You will notice the wide clean pavements and trees. I really noticed the difference in the Upper West Side to Midtown NY today when I went to Times Square. The buildings in Midtown are very tall so there is not much sun, there are no trees and there are lots of people and litter. In the Upper West Side where we are staying it is quieter (by NY standards), sunnier, cleaner, the people dress better and there are trees along the streets. A very different vibe.

   

I dont know what has happened to the formatting of my blog, still trying to figure it out....

Sleep tight

13 Days to go

It is now only 13 more days until Bella and I go to New York... I can't believe it is time already. I am so busy trying to organise everything before I go away. I have a very long to do list and items to take with list but I am sure I will forget something....

Max and Bella are interacting so well now. Max adores his little sister and is very protective of her. Here is a really cute picture I took of the two of them in the garden. Bella just lights up when she hears Max..

Bella had a temperature of 40.5 C yesterday and Dr R tested for Swine Flu. I dont think she has it but given her medical history he thought it was wise and justified to test for it..... She seems a lot better today though.   

Our weekend away was great fun. Max had a complete blast fishing, riding and building fires. I even went for a ride with Lexi and we had a great gallop / canter up the hill next to the buck. Here is my little man on his big horse.      

                                                                                                                                                  

 

Have a great weekend

Some interesting research

I got sent some new research from Neurology newswire from the latest Epilepsia journal which I thought was very interesting. The name of the article is "Benefit of combination therapy in epilepsy: A review of the preclinical evidence with levetiracetam" by Rafal M Kaminski, Alain Matagne, Philip N. Patsalos and Henrik Klitgaard.

Basically my understanding of the article (which is really only my understanding) is that from preclinical tests they have found that when Keppra is taken with other anti-epileptic drugs it improves the effectiveness of the other drugs without increasing the other drugs blood levels and side effects.

For example the effectiveness / potency of Valproate is increased by 28 times and Phenobarbital by 16 times. There is a whole list of drugs included and it shows by how much the effectiveness is improved. If you want a copy of the article let me know.

P.S. Bella is doing great. Starting to play with toys.. Yay

A good week

This last week has been quite quiet. We all enjoyed the long weekend and Grant and I managed to spend some quality time together. Max spent a lot of time building fires in his braai.. a pyromaniac just like his Dad.

Bella had a really great weekend. She is getting into her early bedtime routine nicely. She also grabbed her bottle and pulled it to her mouth which is a big first for her... She is constantly getting into the crawling position and rocking on her arms. Hopefully this means she will be ready to crawl soon which will be a huge celebration.

We have decided not to drop her Phenobarbitone anymore until we get back from New York which is now only 3 weeks away. I cant believe how quickly time is marching on. I am a bit in two minds about the Phenobarbitone. On the one hand I dont want any problems when we are away but on the other hand we have seen big improvments as her dose has come down and am very eager to get her off it completely. Based on the current schedule she will only be off it in December..

We are going away for the weekend to Dullstroom with my Dad which will be the first time we have been away together for 2 years!! So here's to a good week and weekend ahead!

A quick note

Last night when we put Bella to sleep in her cot she was quite active and then eventually went quiet and went to sleep. When we went to check on her we found her lying sideways on her stomach with both legs hanging through the bars and touching the floor outside the cot. I wish I has taken a picture it was too cute for words. Needless to say I think its time to move her into a bed.

Max told me this morning that when he grows up and is 6 years old he wants to be a daddy lion....

All my girls

This is a picture of all my girls.. In the front is Bella who was really interested in watching Max build a fire in his braai. Behind Bella is Nikita the brown and black Beagle who is the cheekiest dog I have ever had. She has so much attitude. Next to her is my Labrador, Nutella who is a puppy at heart and at the very back is our latest addition Tinkerbell who is a rescue dog. We thought she would be a very large Bull Mastiff so called her Tinkerbell as a joke, but it seems the joke is on us as the vet said she is not going to get any bigger than what she is now..

We have quite a cold winter so this was one of warmer days and Bella really enjoyed being outside on the grass in the sun. She loves her swing and trampoline outside and this really helps with her vestibular and proprioception development.

We are still busy weaning Bella off her Phenobarbitone and will only be finished by the end of the year. She is currently on 45mg and was on 105mg which is a really large dose. She needed this large a dose due to the Pyridoxine she was which reduced her Phenobarb level. We have seen huge progress since we have dropped the Phenobarb. In fact in the last few days she has discovered how to get into the crawling position from sitting which is great news and is the first step to actually crawling forward. She just loves doing it and even does it in bed when Grant and I are trying to sleep. Its really cute to see her little head bobbing up and down between us in the dark when we are trying to sleep.

Bella is also on Keppra and Tegretol which will hopefully be her only drugs once she is off the Phenobarbitone.

Under the African Sky

Max went camping this weekend with his Dad and both Grandpa's at the Pilanesberg game reserve. The temperature on Saturday was -3C so it was definitely a trip for boys only. Bella and I stayed at home and had a girlie weekend with lots of retail therapy :)

This was the first time Max has been to a game reserve (other than when he was really young) and from what I heard he was super excited about seeing animals in 'the wild'. Since I wasnt there I have asked Grant to write about their weekend away..

We headed off in a puff of excitement but it wasnt long before Max was telling us "its taking too long Dad". This lasted for about 1.5hrs of the 2 hour trip! Luckily we went through a tunnel on the way which added some much needed entertainment! Once we got there he was immediately off climbing trees and chasing birds and monkeys while we were pitching camp. Not long after, I went for a walk with Max along the camp perimeter fence where we saw 2 elephants (on the other side) in the bushes about 40 metres away! It was a huge thrill and Max was so chuffed. We then went for a game drive and saw loads of animals. One of the highlights was seeing a mother rhino and her calf walking 10 metres away from us for about 5 minutes. Max's favourites were the Pumbas (wharthogs) though! Luckily they were close because I could not get the binoculars away from Max for love or money:)

Once back at camp, the sun began to set and the temperature started dropping faster than you can imagine so we immediately got a huge fire going. We actually had 2 fires because Max brought his own braai along. He had a ball running around and collecting wood and throwing it onto his fire. Anyway, after a few glasses of red wine and OBs (cheap sherry) we managed to get through an absolutley freezing night! The juice and water bottles we had were frozen solid the next morning. Needless to say I think the grandads won't be in a hurry to go camping in the middle of winter again!!

Anyway once we got back from the morning game drive there were monkeys all over the place - drinking our juice, opening tupperwares of coffee and sugar etc. Max had a great time chasing them off with me. We had a quick breakfast and headed home....Max couldnt wait to see Mommy again!

All in all a great time was had by all...

What people say and dont say

Since Bella first started having seizures and we were facing many horrific diagnoses we have been surrounded by many caring and supportive people. Bella has seen many doctors and medical professionals and everytime when we have asked about her prognosis it has always been that she will have challenges but we dont know her final outcome. The doctors views have changed over and over again and right now everyone is very happy with her progress!

There have been a few people who have seen her glass as being half empty rather than half full. I have had people with no knowledge of her condition telling me what and who she will become. I have also known some people who sadly never comment on her wonderful progress but rather say nothing or only focus on the negatives.

Bella has been going for occupational therapy for only 2 weeks and Kate said to me that she is amazed at the changes she has seen and she has had to rethink her initial views. She also said that she sees many children with challenges and she can see that Bella is 100% aware of whats going on around her and is taking everything in. It is wonderful to have such a positive and insightful person in Bella's life and this is the kind of person Bella needs in her life.

From now on I am only going to listen to people who see Bella's glass as half full and those who appreciate Bella for who she is... A beautiful, clever, brave and stubborn little girl! I would not want her any other way.

Max hard at work

Max who is more a boy than any boy I know as a huge liking for trucks, cranes, bulldozers and cement mixers. About 6 weeks ago he saw a cement mixer at Toy Zone that he fell completely in love with. Grant and I decided to teach him one of lifes lessons and got a star chart for him so he could earn the cement mixer. Initially Max liked the idea but after a while he decided in his words "I dont like earning its too hard". To keep the motivation up we bought the cement mixer and put it in the storeroom so that he could earn it out of the storeroom. He tried on numerous occasions to make a 'deal' with us to get the cement mixer and even took to just touching the box in the storeroom.

Yesterday his star chart was almost full and I didnt have the heart to torment the little man anymore so he finally 'earned' his cement mixer! The delight on his face when he realised that the cement mixer was now his was just too cute!

Here he is sleeping peacefully after a hard 6 weeks work with his beloved cement mixer...

Dancing and Gambling

About 2 weeks ago Grant and I were getting ready to go out on our usual Friday night date night. We were in the lounge playing music and dancing like we used to... Max was also having a onderful time dancing like an African Impi with the dogs basket on his head. Quite a special sight. We then played the song The Gambler by Kenny Rodgers which is a song Grant and I have always enjoyed. It was playing very loudly and we were loving singing along together. Bella was sitting on the floor and I picked her up to dance with us. The transformation was amazing. She was absoloutly beaming and jumping around in my arms just loving it!!

The chorus of The Gambler goes something like this.." You have to know when to hold em, know when to fold em, know when to walk away and know when to run....
You never count your money when you're sitting at the table, there will be time enough for counting when the dealing's done". At the time I thought to myself that no matter what anyone says to me I am going to hold on to my belief in Bella and her future because her I know that her full hand of cards has not yet been dealt...

Playful and broken hands

This week has been quite a week other than the great achievments on the 8th of July.

On Tuesday I took Bella for her first appointment with an Occupational Therapist, Kate. Kate is amazing and a very positive woman. Bella connected with her immediatly and had such an amazing session with her. She was positively glowing afterwards. Kate thinks that one of the reasons Bella is not using her hands so well is because she has been so traumatised by her experiences. Bella needs to build up trust in her environment through lots of play... In light of this I have also enrolled Bella for Hydrotherapy. She loves water and I think she will benefit a lot from 'playful fun' therapy. We will have our first session next week.

My monster Max had his cast taken off his arm on Wednesday only to find out that the fracture had collapsed. His wrist is skew and still sore. We are waiting to see if it will heal by itself otherwise he may have to have it rebroken and reset. My boy is just such a boy!!!

The 8th of July

The 8th of July is quite an important day for Bella. In 2007 I had my very first scan while I was pregnant with her. In 2008 Bella was in hospital with her seizures and had been taking ACTH and her seizures stopped on the 8th of July... The 8th of July 2008 was also a very sad day. The little girl who was opposite Bella in hospital passed away. Her name was Ruve and I am sure I will think of her and her family every year on the 8th of July.

Then on 8th of July 2009 Bella sat up from lying down all by herself! I am so proud of her. She has been sitting unsupported for quite a while but could not get up by herself. On the 8th she discovered she could get up all by herself and the look of excitement on her face was just worth everthing. She kept on doing it over and over again and loving her independence.

We will have to see what the 8th of July 2010 holds for us.

Have a great weekend

My First Blog

Well this is my first blog so is just a test run.

My daughter Isabella is 17 months old and started having seizures when she was 2 months old. We received a diagnosis of mild Cortical Dysplasia when she was 12 months. Her seizures are under control for now with Keppra, Tegretol and Phenobarbital which we are busy weaning her off...

She was on ACTH for 6 months and has made big improvements since she came off the ACTH in February. She is now sitting unsupported beautifully .....

We are going to New York in September to see Marcy Lindheimer who is an Anat Baniel practitioner. New York is a long way from South Africa so we are waiting until she is off the Phenobarbital before we go so she can learn as much as possible from the experience.

Let me go and see what this looks like on my blog spot and next time I will tell you why my blog is called Bellagio Dove