After a fairly uneventful stay in hospital, Jude will be back home on Wednesday with his new ketogenic diet in place and apart from the fact that he’s taken to sleeping a lot no apparent adverse side effects.
His ketone levels, which need to be between 4 and 5, are hanging around the 1 to 2 level which won’t have any impact on his seizures but they are expecting it to go up in the next few days and weeks. We shall see.
I met a little boy in hospital on Monday night, he had been moved into the bed opposite Jude. I tend not to ask questions of other parents – mainly in case they ask back…but in this case I saw things in little baby Mikey (not sure of the spelling) that took me back and I took the plunge and spoke to dad who confirmed what I thought – West Syndrome or Infantile Spasms. As we talked it was soon apparent that our two little boys shared a remarkably similar set of symptoms which is probably the reason I ‘knew’ as soon as I saw him.
His dad might be reading this blog (Hi!), it got me thinking about how far Jude has come in the last 2 years – perhaps things that I don’t realise in the midst of all the things we deal with. I was never sure what my aspirations for Jude were, I was hoping for the best without ever knowing what the best was. I wanted a relationship with my son, for him to know me, communicate with me, feel safe with me…I think we got there and some more.
Mikey, his mom and dad and their two older boys (more coincidences) are setting out on a journey of hospital appointments, therapists, drugs, eegs, good days and bad days but if they have even half the good stuff we’ve had they will be blessed – I wish them all that and a whole lot more.
It reminds me why I started this thing in the first place – I blog so that I don’t have to talk to people. It is my social isolation from ‘the story’. That question – “What’s wrong with your son?” Do you want the truth, the abridged version or the sugar coated one? I was on the phone trying to arrange some travel insurance and Jude’s condition needed to be disclosed. They asked ‘that question’ and I am so unused to answering it my mind went blank. After uttering a few things and answering a few questions they said I wouldn’t have to pay any additional premium so I snapped their hands off. I’m wondering what I told them now.
Having posted a picture of our (hopefully) new house nothing bad has happened and the move is still on so it might be safe to post a couple of more pictures.
The first is Jude’s room. I’m thinking of making an offer for the pool table 🙂
It’s a wonderfully ‘bright room’ but what we really liked are the doors that lead out to…..
We’ll have to sort out a ramp to get down to the garden but it just seemed so perfect that Jude will be able to leave his bedroom and be greeted by this.
Saturday June 22nd 1996 England beat Spain on penalties on the way to the semi-finals of the European Championships. Sunday June 23rd 1996 me and Rachel got married.
Wednesday June 23rd 2010, England need to beat Slovenia to reach the knockout stage of the World Cup and me and Rachel will be celebrating 14 years, 3 kids and a cat of a marriage. Happy Anniversary Fahy.