Some Photos

These are from Rachel’s mobile phone but they could only really be improved if I was in them! This could be the first reported sight of Jude trying to crawl without dribbling everywhere!         When it used to be a major event to get a ‘Jude smile’ now he gives them away [...]

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What Now?

It’s been a week since Jude went onto the high dose of Vigabatrin and he seems to have settled down into a solid routine. His smiles are not as easy to come by but they’re still there and most of the time he is either eating or sleeping. He gets up once in the night, [...]

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Another EEG

We went up to the Children’s Hospital today for a repeat EEG. Jude’s only been on full dose Vigabatrin for a few days and we weren’t really expecting much. The consultant was on leave so we weren’t told anything officially but the very nice young lady who did the EEG did let us know that [...]

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Back Home

After 6 days we’re back home. We got a little bit more information about the cysts on Jude’s brain – they occurred during pregnancy and at the moment nobody knows what impact they will have on him. They are in effect just skin where brain cells should be – whatever they should have done will [...]

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The Eyes Have It (maybe)

They came to look at Jude’s eyes this evening – it seems that they are great at the front but the nerves are ‘a little light’ at the back. This means there could be a problem with visual processing but they won’t know for sure until they have done some further examinations in a few [...]

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The MRI Results

I had already worked out in my own head that when we were told the outcome of the MRI it wouldn’t be good news. He has a small head, he has infantile spasms, he has some developmental delays -the signs were there. When the consultant began outlining the facts I wasn’t devastated, a little disappointed [...]

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Better Days

Jude’s blood pressure has come back down and after some strong words to the doctor (and a friend having a go at the nursing staff) we are starting to get a little bit more attention now from staff. It’s really hard not to take your frustrations out on the people caring for your baby but [...]

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Sigh

The ACTH hasn’t worked – in fact Jude is truly and utterly miserable, much like us. He’s constantly rigid when awake, screaming in pain/discomfort/distress we don’t know what. His blood pressure has risen to 165/90 and the little boy we met just a couple of weeks ago couldn’t be further away. I was angry today. [...]

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The Therapy Has Landed

We had our first visit from the Occupational Therapist today. It wasn’t much, just a gentle introduction, but for the first time here was someone giving us little things we could do ‘for’ Jude instead of ‘to’ him. It lifted our mood a little bit as Jude has really gone backwards since we started on [...]

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MRI Scan

Jude had his MRI scan today (yesterday at time of writing this) – 20 minutes in and out but no results until next week. He’s still on the Vigabatrin albeit on a reducing dose, he’s had his second injection of ACTH and had two different drugs to sedate him for the MRI scan – needless [...]

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