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