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