Hope Floats

Well we did it. I first heard about the therapy on Surprise Surprise, we looked into the costs late January and have raised over £12,000 to get Ava to America for potential life changing therapy. http://www.therapies4kids.com/

Now this may sound strange but people have asked me what I expect from the therapy and I really don't expect anything. Maybe I am protecting myself from a potential great disappointment because really if I didn't think this would have a chance to work then I wouldn't have tried to do it. My daughter is such a gift to us and the world. She has made us into much better people, albeit much tireder people!  Ava has multiple complex needs and everyday still manages a smile at some point in the day. A fellow Facebook friend, Samantha Kilgore, once commented that to see Ava smile makes you smile and she does joy better than anyone.

Can you see what she means?

The main demon we battle with daily is the Epilepsy. I truly believe that if we can wipe this out of Ava's life then she can get on with developing into a sitting, walking, talking little girl. As it is, Ava has upward of 40 myclonic jerks a day still and up to 4 Tonic clonics (which I am thinking have developed into sinister gelastic seizures http://en.wikipedia.org/wiki/Gelastic_seizure) This is a conversation I need to have with her consultant neurologist but as far as I believe, these are impossible to treat. We started the ketogenic diet (http://en.wikipedia.org/wiki/Ketogenic_diet) 2 months ago on a 3 month trial. The first month Ava's seizures became less forceful and a little less frequent - night seizures were noticeably reduced. However we went into month 2 and Ava's seizures morphed into the new seizures I mentioned above. The severity was enormous, needing rescue meds on quite a regular basis. Ava ended up in hospital with a chest infection and on co-amoxiclav which we now believe to have created the really strong gelastic type seizures. Epilepsy is a very complex condition and we never forget that it's one that can take our little girl at any time it likes. At present, with 3 days to go, EEEEK!, Ava has had 2 really good days of being alert, less frequent and less severe seizures. I am praying to God that this continues to last.

We are all packed ready to go, I have written the final thank you card and posted it today, I have a few calls to make, Ava gets her button changed tomorrow and I say my last few goodbyes to special friends and family who we certainly couldn't have achieved this without. 

Just to finish off before we go a lovely friend, Helen MacGregor sent me this poem which sums the whole process up:

'Hope' is the thing with feathers,

That perches in the soul,

And sings the tune without the words,

And never stops - at all.

And sweetest in the Gale is heard,

And some must be the storm, 

That could abash the little bird,

That kept so many warm.

I've heard it on the chillest land,

And on the strangest sea,

Yet never in extremity,

It asked a crumb-of me.

A huge thank you to everyone of you that has made our Hope shine ever brighter through having a little FAITH for Ava. Watch this space for video diaries, pictures and progress of Ava's next chapter in her Miracle journey.