Winners of our raffle held at A Night Out For Lewis
Raffle Prize winners!!!
Top Prize - 2 nights Dinner Bed Breakfast DeVere New Place Hotel - Naomi Boddy
Night At Holiday Inn Southampton - Lisa Ogston
Lotus F1 Top - Noel Britton
Family Swim At Fleming Park - Charlie Pitcher
£20 Voucher Winchester Hotel & Spa - Zoe Evans
Dinner for Two at Elmers Court Hotel - Jeni Gardner
3 Course Lunch for 2 at Hotel Terravina - Pauline
£30 John Lewis Vouchers - Tracey France Reynolds
Voucher for 2 Wickham Vineyard - Joan Kavanagh
Voucher for 2 Wickham Vineyard - Emma (C/O Lisa)
4 Tickets to Aladdin at Pavilion Theatre Bournemouth - Bobby
Dimplex Speaker Heater - Anne Peck
Dinner for 2 at Tylney Hall - Julie (c/o Lisa)
2 Passes Premier Enclosure Fontwell - Abbie Wheeler
2 Passes Harbour Lights Picture House - Paul Furmedge
Mixed Hamper - Carrie-Anne Barnes
£25 voucher for Grand Cafe - Jo Francis
4 Tickets to Jack & The Beanstalk at Fernham Hall - Morgen Hobbs
4 x Discover Sessions at Woodmil - Noel Britton
2 Child Passes to Birdworld - Jo Baker
Family Pas To Longdown Activity Farm - @Gemma Olliver
2 Passes to Splashdown - Jon Darley
Adult/Child Go Karting - Maddie Smith
Family Swim Gosport - Barbie Rudd
Family Swim Gosport - Joan Kavanagh
Cupcakes By Cookies'mmm'Cupcakes - Charlotte Billet
2 x Donutting Sessions - Naomi Boddy
Family Skate Planet Ice Gosport - Maria (c/o Lisa)
Family Pass to SeaCity Museum - Mrs Shone
2 Passes to Playzone - Nikki Seel
1 mth for 2 people at Fareham leisure centre - Jan Mcquire
1 mth for 2 people at fareham leisure centre Claire Hunt
Paintballing for 5 inc lunch - Leza Wilson
HUGE CONGRATULATIONS TO ALL OUR WINNERS AND THANKS TO ALL WHO PURCHASED TICKETS AND SUPPORTED LEWIS!
So Lewis decided to start the school holidays in his own way! Lewis contracted C-diff, rotavirus and adenovirus at the same time and ended up in hospital. We had hoped a few days on IV Fluids would do the trick but no.... he ended up on TPN for 3 weeks!
We managed to get him home just 3 days before our family holiday!
We have spent the last week enjoying quality family time in Cornwall.
We use a disability van in Monkey Tree Holiday Park in Newquay. It is a fantastic site, very friendly and the kids club team are so so good with Adam and Lewis.
We went away with family friends and their 3 girls! It was chaotic at times but everyone seemed to have a brilliant time!
We are now back home and in full swing trying to organise the Dinner Dance and raising money to purchase more essential equipment for Lewis.
Tickets are now on sale for the event on 12th October at the Holiday Inn Southampton!
We really need all your help pushing this event and getting tickets sold!!
Poor Lewis is having a rotten day. Bit drowsy and decided to fill his day at school with absence seizures.
Something isn’t quite right.
Night care in tonight (like last night) so hopefully will get some sleep.
Finding it so hard to get our head round the fact that he needs more surgery. I/we know that the fundo should help with the sickness but we think its going to have a massive knock on effect for his gut. We certainly aren’t happy for them to go for gastric feeding and will fight tooth and nail to make sure that they repass the Jejunostomy tube when they put the button in.
Its so hard some days when you see him cry and unable to tell us what is wrong. He is so brave and smiles through pretty much anything.
We had his annual review at school and they are amending his statement slightly as they need to add in the diagnosis of Pancreatic Agenesis & borderline diabetes.
As if he hasn’t got enough going on! I swear this list of conditions is never ending!! Mind you the meds are a forever increasing mix and now we have reached 14 prescribed meds a day!
We had a funny 5 this week when we tried to work out how many ‘Single Use’ syringes we use each day! Would you believe that we use 40+ a day but at present we have to keep washing them and they perish really quickly.
Its quite bizarre the random things that come to mind with Lewis. Like the fact that the Incontinence Service only provide 3, yes 3!, nappies a day for a child who has up to 22 nappy changes a day! They just will not budge. All down to the joyous postcode lottery!!
We are today looking at sorting a constitution and committee so that we can apply to the council for a licence so that in time we can hopefully build up to charitable status.
Well we had Lewis' gastro-surgical meeting yesterday.
Lewis has been booked for surgery end of aug/beginning of sept.
He has to have his PEG replaced with a button, possible resiting and a fundoplication (you can read about it here )
He has to have his PEG replaced as a button due to the fact that once the fundoplication is done we will be unable to change the PEG at anytime. So they have decided to insert a button instead. This is worrying me as Lewis likes to pull on his tube and is more likely to pull out a button.
When they swap the PEG they will insert a PICC/Hickman line to give Lewis either IV fluids or TPN to keep him going until he is able to be fed again after the fundo op which will take place a few days after the swap.
Unfortunately this could coincide with the start of the new school year and Adam starting in junior school. This could cause considerable upset to him and we need to hope it is done and dusted prior to school starting back, or be a few weeks after he has started.
We also discovered yesterday that Lewis is borderline diabetic. Not really a surprise considering his lack of pancreas.
We have to keep an eye on this.
He has been very sicky lately and extremely explosive! He is back in school 2 full days a week with one shorter day but this will increase to 3 full days next week. He is settling back in really well and seems happy to be back and also is very happy working with his new 1-2-1 Leza.
We have also started with our new night care! 2 nights a week we have a nurse come in and look after Lewis at home so I can get much needed sleep. It is going well and Lewis is very taken with the nurses who are looking after him.
So for now we just keep plodding onwards! The heat isn't making life easy for Lewis but we have managed some lovely days out in the sun with him as a family.
Also if you didn't already know, on 12th October we are holding ' A Night Out For Lewis'. A night of dancing, raffle, auction and buffet with DJ Sam Barnes providing us with lots of music!!
18th SPECIAL DAY
HAPPY 5TH BIRTHDAY TO MY AMAZING LITTLE MAN LEWIS!!! DESPITE ALL HE HAS GONE THROUGH & CONTINUES TO GO THROUGH I AM SO VERY PROUD!! HIS SMILE SAYS IT ALL!!!
HAPPY BIRTHDAY BABY BOY. MUMMY DADDY AND ADAM ARE SO INCREDIBLY PROUD OF YOU!!!
Poor lewis was poked and prodded in outpatients today.blood sent off to Salisbury to test for a defective gene that has recently been discovered.It could be the cause of his pancreatic agenesis.
If it is the cause at least we know why although there is no cure. He is booked for a Glucose Tolerance Test next week (whoopee a whole day stuck on john atwell ward!!) as we need to closely monitor his endocrine function as due to the pancreatic agenesis he could end up an insulin dependant diabetic at anytime.
He is also booked in to see both gastro & surgical consultants in a few weeks to discuss surgery. In the mean time he needs to have an urgent gastric emptying study and a jejunal emptying study done.
On a positive note he had his first session at school today with his 1-2-1, who is lovely!
After 6 months off he is slowly feeding back into school life. He is doing a slow increase in hours so as not to overload him. Hard to think that the last time he was at school was the 21st December!
It's been so heartwarming to see both teaching staff and pupils coming to see him and getting excited! He really seems to be well loved there & it is so lovely & reassuring to see.
I am so proud of him & how well he copes. I know he doesn't understand whats happened, for that I am grateful, but what he does seem to understand is that he is so loved. Not just by us but by all those who meet him & spend time with him.
He makes us so proud and we are truly blessed to have him in our lives.
Hard to believe my baby is going to be 5 next week!!! He has come so very far!!
Omg omg omg after fighting and 4 trips to panel we have been finally granted 2 nights a week care!!!
Lewis is having some pretty sick, dystonic days at the moment. Dietician phoned and we have to reduce his liquigen dose as it appears to be making him worse.
Its typical that something that is supposed to help him, is making him worse.
We are waiting to see if the surgeons will agree to do a fundopilication as his reflux is getting worse despite having been jej fed for 4 yrs and goes blue regularly and very sick.
Hopefully we will soon get our house sold (our original buyer pulled out the day after our offer was accepted on our new house!!)
We will need to get so much stuff for his new room when we do move, equipment, storage etc etc etc
Lewis has had a really lovely day today. Had a chilled out morning, time in the sensory room, swimming this afternoon with the lovely Katy and then he had extra special visitors! Gemma and Izzy came to spend time with him here at Naomi House Childrens Hospice.
Gemma is a very close friend I have known since school. Izzy is her very beautiful daughter.
She is such a grown up young lady (4) and was amazing with Lewis. She read her stories to him, gave him beautiful smiles and an extra special cuddle.
We spent time with her in the garden and in the play room, which she loved.
Izzy played musical instruments with Lewis and she had the chance to play on the touch screen pc. Lewis was very much taken with both Gemma and Izzy. He kept looking for them both as they talked and loved the time he spent playing on the floor with them.
It is so nice to see Lewis interacting with so many different people in so many different ways. The way children are so accepting of Lewis and his inability to communicate is heart warming. Despite Lewis being unable to talk to her, izzy lay next to him and chatted, asked him if he was ok and asked us questions about his feed tube etc. Both found it really funny when Lewis was hoisted back into his chair.
I'm so proud of both Lewis and Izzy. Izzys acceptance of what could be a very daunting situation is a true reflection of how grown up she is and how well Gemma has brought her up.
She is a true angel.
Tomorrow is a new day and I hope it is one that brings much more happiness and many more smiles for Lewis.
Here is an amazing place where children, irrespective of their illnesses/disabilities, can be children and have such fun and receive much love and laughter.
This isn’t an update on Lewis like I would normally do as have a lot to say and too tired to write it all down at the moment but I wanted to introduce all Lewis’ Fund Supporters to a remarkable young lady.
She is 13 years old and has won over the heart of Lewis. Now Lewis only ever introduces us to the best people and boy has he done that again now!
We have had the pleasure of spending the last 5 weeks with/next to Jess on the childrens ward.
Its no fun up here with all the coming and going that happens yet when we met Jess Lewis fluttered his eyelashes and life long friends were made!!
Jess goes through hell and back with her own problems yet despite all she goes through she does nothing but smile, laugh and give off an air of such love and caring that its hard to see her suffering,
Most 13 year old kids would strop and moan at having a stroppy, screaming 4 year old next to them day and night but Jess spends so much time interacting with Lewis. She cuddles him, massages his feet, plays with him and sits and holds his hands when he is scared or sad.
She is a beautiful kind hearted young lady who is determined to achieve all she can and yet still puts others first.
She has had us all laughing with her, at times with some of the strangest comments, she dotes on Lewis as well as Adam!!
Her mum is, well all I can say, truly amazing.
She has done nothing but scream shout and fight her corner. She has battled the top guns of the profession to try and get Jess the best help she can. There have been tears, shouting and so much determination on her part to make Jess’ doctors sit up and take notice. Despite feeling like she is banging her head against a big wall every day with constant conflicting information she continues to support, love and keep Jess smiling. Me too to be fair.
Without their continued support every day I would have crumbled on many occasions!! They’ve been there through trips to theatre, all night screaming sessions (hard to miss him when he has a bad night!!)
Both of them have been an absolute rock to us. After 5 weeks together its like we are all one happy, if not some what crazy family!!
Just an update on Lewis for you all.
Lewis was admitted to hospital on Saturday with a dislodged Jejunostomy tube.
Due to this tube being dislodged we have been unable to feed Lewis or give him any of his medication which has meant him being in severe distress.
He now has 2 lines into him through which his fluids and seizure medication are being given as well antibiotics & stomach protection meds. He is having double the amount of diazepam to try and control his dystonics whilst we wait for the new tube to be passed.
On monday they tried a repass in radiology and it spectacularly failed.
Lewis is, after many discussions with the surgeons and medical teams, going to be going to theatre either Thursday (on the emergency list if there is space) or he will end up going on monday.
At the moment we arent really managing to control the dystonics. He is screaming in pain constantly and its horrible to see him struggling so much.
We are giving midazolam as a method to break them briefly, effectively sedating him but it isn't lasting long.
I hate seeing him like this. He is so unhappy and unwell.
Its having a massive knock on effective on Lewis' big brother. He is being so amazing, looking after daddy and being very brave!
Its hard for him to have his whole life turned upside down at the drop of a hat. he's jst amazing. I am so so proud of him!!
Lewis had a review meeting with his Neuro consultant this week and a lot was discussed with regards to his condition and how to manage it.
At the moment Lewis' dystonic episodes are becoming harder to control which is distressing not only for Lewis but for us as a family. At the present time his medication is doing all it can to stabilise them but there is only so much that it can do.
As discussed we have increased his Baclofen to 30mg a day, which is a heck of a lot for a young child of Lewis' size.
We are looking at phasing out Lewis' current seizure medication and phasing in a new one as his seizures are becoming more frequent and severe.
We are looking at trying to find out why his condition isn't stable and his Neuro consultant has reiterated that she thinks something more severe has been undiagnosed. We are therefore going to look at carrying out a rare test for Dystonic Gene Panel and see if we can find the cause of some of his problems.
His brain injury is more severe than we were first led to believe 2 years ago. We have found out that the Basal Ganglia is more severely affected than we were first told and that this along with the other areas of the brain that have been damaged, needs investigating to determine a cause.
It was hard to hear in some ways as for 2 years we fought to get acknowledgement that there was something wrong and were permanently fobbed off by one of the Paediatricians.
One thing that was rediscussed was the possible option of having the Intrathecal Baclofen Pump inserted. It would involve major surgery and a long stay in hospital. Despite it being a very small chance 6 mths ago, it is now more of a reality and we face a long think about how we want to proceed.
At present we want to exhaust all non-invasive procedures/medication before subjecting him to something so serious.
On the positive side, he remains a very happy, cheerful chap who does nothing but giggle day and night!!
He has wrapped all the teachers and assistants at school right round his little finger and this shows big time! He has been off schoo poorly for a week due to a nasty chest infection! We have had so many messages, texts, facebook messages asking if he is ok and when he will be back as everyone is missing him!!
In the last few weeks he has learnt to "high 5" again after losing the ability approx a year ago! He has really made us smile through all his rough nights by constantly smiling and cooing at his big brother!!
The next few months are going to be testing as we enter the winter months! Infections galore and normally a failing intestine hit us in this time.
We are getting Lewis' new wheelchair this week which is great, although we are a little concerned that it will not fit through the patio doors! Could prove interesting on Wednesday when he comes home from school in it!!
Enough of the rattling on on my part. I will update again soon on what is happening with cheeky chops!!
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Just under 2 weeks worth of Lewis' daily medication!