This is from Tuesday 3rd July when Lew had his orthoptic appointment
This is from last night when Lew had his second seizure and I thought we might have to phone another ambulance. You can see his mouth is twisted slightly and his eyes are staring - he was unconscious and seizuring but thank goodness it only lasted 2 minutes.
This was Oliver finding a new way to play his game!
This is Maisie preparing for Royal Ascot or Ladies Day at the St Leger Festival!
This is Lew in bed with his splints
There were quite a few geese on the lake the other day!
This is Lew today (9th July) with is new head support which Anna (Nathan's mum) very kindly sent us in the post. It stops Lews head from flopping forward in the car. It doesnt look great, but it works and that is what matters!
This is Lew in bed this morning with his second gift from Anna and Nathan - a cheeky monkey!
On Thursday Lew got a surprise present from his other friend Declan which was a glow monkey and some super cool Bob the Builder pyjamas!!!
Lew fell asleep on Mandy in Fundays on Wednesday afternoon!
Before Lew fell asleep on Mandy he had great fun playing with Marie in the ball pool! No wonder he fell asleep!
On Tuesday afternoon Kath and Janette came from physio to fit Lew into his monkey stander again as he has grown 2 inches in the last 2 months!
On 30th June we went to a fantastic Fun Day at New Tribes Mission near Grimsby. Despite the miserable rain, everybody had a fantastic time, lots of delicious food, cakes, face painting, caricatures, bouncy castle, activities, and of course we got to spend the day with Yolanda, Stephen, Naomi, Joshua and Joel!
Thursday 28th June was (yes I admit it) my Birthday. We had a lovely day with Yolanda and family in Grimsby but I was very sneaky and didnt let Yolanda know it was my birthday!!!
Yolanda, Stephen, Naomi, Joshua and Joel made an incredibly generous donation to the Lewis Jeynes Fund - thank guys, you know we love you and it is so great that we are able to see each other a bit more nowadays - we're okay in the summer - its the winter (coughs, colds, snow) that keeps us apart lol!
On Sunday 24th June, James, Lewis and I went to Normanby Country Park. It rained rained rained, but we're English - we are used to it haha!
Lew didnt get much sleep last night (he had a second seizure at 10.25pm but it only lasted 2 minutes thank goodness). Today we did a few jobs around (dropping off wee sample at hospital, picking up prescription for epilepsy medicines from doctors, picking up medicines from chemist) and then Lew went to bed at 6pm. He did have another seizure this afternoon just after 4pm which lasted for 4 minutes, so still not quite the magic 5 minutes which means rescue medication and possible ambulance.
I do want to say thank you so much to the nurses at the Doncaster Royal Infirmary Childrens Assessment Unit (CAU/PAU) who were great with Lew (as usual) and really looked after us.
3 comments:
Fabby pictures - I love the one of Lewis at the bottom of the slide in the ball pool
Have a good week,
take care,
lawsey
I love the photos! bless :)
hope everything is Ok too.
I send my love to all of you and will be looking out for you all in the newspaper tommorow! Cant wait lol
Love Sian XoXoX
As a grandma bringing up our gorgeous granddaughter who is very much like Lewis I am so concerned that amost weekly I hear of another child that has no diagnosis - what is happening to the children - why isn't more being done for children like ours - I feel becuse the medical teams cannot immediately recognise a syndrome we are sent away and more or less told we have to live with it. If only doctors could feel what it is like not knowing how long we have our preccious children for - everytime our little one is ill we are petrified that 'this is it'
There are now so many undiagnosed children why isn't research being done to find the cause.
You will be in my prayers tonight Lewis God Bless XXX
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