Well it’s been just over a week since Jude’s birthday and I wanted to thank everyone for their kind wishes and lovely gifts. I am hoping to make thank you cards, although I’ve not managed that one yet; so I thought a blog entry was a good idea to say thank you to all our friends and family for not just last Tuesday but for the last two years, we wouldn’t be here without everyones kindness, love and support – Rachel xxx
Today Joe had his swine flu injection, the doctors want Jude to have this too, however I just feel that Jude is well at the moment and I really dont want anything to jeopardise this. There are so many things going on at the moment – Jude’s seizures seem to have increased and he especially gets clusters of them after he has been asleep. We have talked about starting a seizure diary, to see if there is any pattern to it.
We also have the whole issue of the house at the forefront of our minds. On Thursday we have a Grant Officer coming to do a feasibility study on our property to see if an extension is feasible. If not we have to seriously consider moving – what does this mean ? A big upheaval and a huge cost.
I think Jude wanted to make the most of his day today waking at 3 for one hour! Jude has been the happiest little boy today. He has had a wonderful birthday party with so many friends and family present to help him celebrate making his day truly special. It’s 10pm now and Jude is still going strong. Attached are two pictures, they just show what a beautiful little boy he is……
Jude is 2 tomorrow, and is this evening is in a very good mood. Earlier when we were making his cards he made a sound and it sounded just like “mom” it stopped us dead in our tracks.
It is hard to believe that we have made it through the last 2 years and there were times when I thought we never would. Jude has been well in himself for the last few months and all we want is for this to continue. When I saw the consultant about his MRI results I felt like a door was being slammed shut on us. But I know you have to look for the positives however small they may be.
We have his next operation looming plus the doctors wanting him to have the swine flu and flu jab. On top of that termoil about the house and the possibility of moving.
May 2010 be a happier year for Jude and for all the people who love him so much.
Me and Rachel moved into our home in 1996 and to be honest our mortgage is pretty low compared to many on the house buying ladder at the moment. We have many memories here, raised our family here and we have never seriously considered moving. Until today.
Jude’s needs mean that there will need to be significant adaptations made to our home. He will need a downstairs room, with on suite. There will need to be provision for one of us to sleep with him if required. Then there is all his ‘stuff’ which is steadily increasing – various chairs, standers, therapy aids and in the future maybe wheelchairs, lifts and hoists…..
Today was our first visit from the people who pay for these sorts of things – a grant of upto £30 000 is available to make the sort of alterations that Jude would need. After having a look around the house it began to become clear that our home might just not be suitable for the type of adaptation Jude will need. We are in a semi-detached and the un-detached side of our house is not parallel to next door which means there isn’t the room to build sideways and if we can’t build sideways we can’t build up either. Building backwards or forwards poses problems too and for the first time we are considering the possibility of moving.
Today could have been quite significant.
We had a great week in Ireland. Rachel and Jude flew over safe and sound, me and the boys survived the rough Irish Sea. It was great seeing the family again, the boys had a day out in Dublin, the weather was fine and mostly dry and the coffee and tea flowed freely. Never did make it out for any Guinness although we had plans. Oh yes, we had plans.
On Thursday on the train back from Dublin with Jude and the boys he was being fed through his tube and I decided to leave him partially attached with the aim of disconnecting his tube when we got back home. I forgot, tried to lift him out of his pushchair unaware that the tube was caught and as I lifted him from the seat the whole lot was yanked out leaving a hole where the tube should have been.
We have about 20 minutes before the hole closes.
Jude is mildly shocked but not in any apparent discomfort. Daddy is a wreck. Thankfully, Rachel took control partially reinserting it back in and holding it there as I drove back.
We had no like for like replacement so Rachel tries to insert a different type but it won’t work so she improvises with what was the attachment tube (the one that got tangled in the pram), cuts off the end and inserts it all the way in and tapes it off. And we’re off to the local hospital (blue light ambulance and all) where the replacement tube is inserted and all is better in the world again. But our plan for Guinness was out of the window.
This is the type of button Jude did have in, it sits nice and neat on top of his tummy and his feed and medication is inserted through a tube that is inserted into the top. It is the tube that got caught in the pram.
This is what Rachel was trying to insert and what Jude has in at the moment while we wait for a spare button.
And this is similar to the tube my very calm wife used to keep Jude’s hole open until we got to the hospital. If she decides against a career in medicine she can try her hand out at plumbing!
Back home now and the results of Jude’s MRI has been posted to us – no explanation about what it means, just a series of medical terms. Not much fun to read when you don’t really understand it. Thankfully an emergency appointment was arranged to see the consultant. It seems there has been no change from Jude’s last MRI so no deterioration but the ‘damage’ to Jude’s brain is extensive, on both sides and his brain isn’t growing. The prognosis is Jude will be whatever Jude will be. There was also a comment made about his reflux and the risk of reflux triggering a nerve (I think the Vagus nerve after google-ing) which could stop his heart and so it is important to get the reflux under control.
Further google-ing, not my favourite past time at the moment, reveals that while reflux was considered to be a factor in sudden infant death syndrome further research suggest that maybe it is not the case….but reflux can apparently cause heart palpitations. But having been put out there it isn’t easily taken away.
But Jude is happy at the moment, the boys really enjoyed their holiday and me and Rachel had some much needed down time.