Everyone that knows us will know of Jude’s love of the car. He has improved considerably over the last few weeks, but journeys have never been plain sailing. On 3rd September I went to a seating clinic appointment with my friend Anna (well my god daughter actually). We were quoted for a specialised car seat which was quite costly. We had to contact local charities for funding towards this and I have over the past couple of months written to about four companies. The rep who gave me the quote very kindly lent us the chair for two days, just to see how Jude coped. We had said that we didn’t want to spend all that money if Jude wouldn’t tolerate the car seat. The rep by chance mentioned a local charity to Stourbridge, so I wrote to them. Two days later I had a call from Chris Westwood, from the Christ Westwood Trust. He asked some questions about Jude and explained to me that he and the other trustees had met the night before I wanted to donate practically all of the money so that we could go ahead and purchase the seat. I stood in Woolworths on my mobile speechless and couldn’t stop saying “thank you” and “are you sure?” I phoned Ian straight away and was nearly in tears telling him the amazing news.
I will never be able to thank Chris Westwood enough for his generosity and immense kindness.
We were seriously concerned that Jude’s IS had returned but the EEG says not. There has been no improvement with regards his myoclonic seizures but the hyyps have stayed away. For us, this is good news for now – Epilim, for the myoclonic seizures, is to be increased over the next couple of weeks.
Generally, Jude is rolling along nicely – 3 hour journey to Brainwave today and only once did he get upset 5 minutes from journey’s end and that was just him asking to have his nappy changed.
His weight is spot on and we feel that justifies us removing his nasogastric feed and resisting the G-tube – isn’t hindsight a wonderful thing?
Jude’s head control is getting better all the time and yesterday, for the first time (and with his physio in attendance), Jude deliberately moved his hand to mouth. This isn’t usually a celebrated developmental milestone but when it doesn’t happen the consequences are wide reaching. Not being aware of his hands and arms means Jude has never played with toys, hasn’t fed himself, hasn’t figured out the role of hands and arms in crawling and sitting up, can’t point at what he likes or wave away what he doesn’t like. He also hasn’t stuck his fingers in the electric plug socket, the DVD or smeared his mucky paws across my TV screen. Oh how we look forward to those days, although maybe not the plug socket.
Jude meet your hands, hands meet Jude.
It’s been a couple of weeks since the last post and it hasn’t been all quiet on the Jude front. The good news is that Jude is still happy, still smiling and maintaining steady progress. We have had a grant for a new car seat which was agreed by a local charity inside 48 hours and when we suggested that with Jude’s improvement we might not need the more expensive car seat they said they really wanted Jude to have the seat and increased their grant!!
On Wednesday afternoon we drive down to the Brainwave Centre for Jude’s 2 day assessment – Nathan and Jude are coming too and we’re really looking forward to it. The fact that we feel confident enough to drive down is a sign of a significant shift in our lives – in recent months we haven’t even been able to go down town without causing Jude real discomfort. Now he takes to his car seat and his pushchair without any problems. We should also be getting a new pushchair and high seat in the next few weeks too.
But, Jude is having more and more seizures. We are still waiting for the results of his EEG so we don’t now whether this is a return on his IS or a development of the generalised seizures that were on his last EEG results. What is different this time is that when Jude’s IS has returned in the past he effectively shut down and regressed but that hasn’t happened this time – at least nothing that we notice.
Seems even the good times come with a sting in the tail…..