Water, water, everywhere .. and not a drink to drop

WATER, WATER, EVERYWHERE ... AND NOT A DRINK TO DROP

This is what I say to Lew each evening when I give him his water before bed ... dont ask me why and yes I know its wrong ... should be 'not a drop to drink' and I believe (although please do correct me if wrong) that it is from Moby Dick. Anyway, thought I'd share that with you all as only James and I get to share Lewis' bedtime most evenings and its a very special, smiley and soothing time.

We've had lots of feedback on the fantastic Daily Mirror photos from the last entry. They are awesome, arent they? We have had one enlarged and framed and we have made a 'photobook' of those and other lovely photos of Lewis which came in the post today. We got ours from www.photobox.co.uk which is a great website for photographic gifts. We have decided to get some more photobooks done of Lew and Samuel as they are so much more than your average photograph album and very tasteful and trendy too!

So what have we been up to since Monday. On Tuesday Marie came over early to get Lew ready while I went to the doctors for my appointment. Then we went over to playgroup at DRI with Lynda, Rachel and Gill. Lew enjoyed singing and spending time with his friends at group, and they all made a CD mobile. As the children are getting older now, the parents are sent out for a cuppa so that the children can get used to not having mum/dad around all the time. Lewis is already used to this from the Monday group so it was an easy transition for him! So Amanda, Debbie, Jane and I went to the East Dining Room at DRI for a drink and a chat which was lovely for us to be able to catch up.

On the way out of the hospital, we had a lovely chat with our friends at the front desk (the DRI volunteers) and then we went off to Musical Minis. We were a little bit late, but they saw us in the car park so waited for us to start! It was quite a small group this week, and we especially missed Sam who entertains everybody with his playful antics and the most gorgeous smile! It was lovely though to see Katie and Ellie who we hadnt seen for a while.

After music we came home for a relax and then it was our usual routine of bedtime for Lew and then bedtime for me!

On Wednesday Mandy came to help out with Lew and we went to the Post Office to collect a parcel (my Taekwondo books and DVD!) then we went to Aldi to get some cat food (the story with that is our cats are fussy and will only eat Purina ProPlan cat food which is quite expensive .. well James decided to buy some Aldi cat food to try which is really cheap and ... THE CATS ATE IT!). We then dropped Mandy back at her car and Lewis and I went to hydrotherapy which AS USUAL he loved!!! He had such a great time and he also got to meet two other children - Molly and Harrison. Molly and Harrison are twins, and Molly has cerebral palsy. After we had finished shrivelling in the pool, we came out and got ready to come home. We made an appointment for Lewis to get his haircut in the hospital hairdressers - he has had his cut there 3 times and he LURVES the young blonde lady to do his hair but she wasnt available until 3.30pm so we sat and had a cup of coffee while we waited and then we had a chat with the volunteers again (!) and then Lew went in to have his haircut. He looked SOOOOOOO cute, so grown up! Also on Wednesday, it was Olya's birthday! So Happy Birthday to Olya! Sooooo old now .... all of 25!

On Thursday we got up quite early (around 8am) and went to Lizzie's so I could have my legs waxed. Lewis had a very comfortable sit in Lizzie's 'salon' and was mesmerised, watching her going about her work! The fact that Lizzie is vurry vurry pretty helped to keep Lew's attention! After the waxing we went to Building Blocks nursery to say hello, and especially to say goodbye as it was Miss Jodie's last day there, I am sure they will all be very sad to say goodbye to her smiling and happy face. While at nursery, we bumped into Munmun (Livia's mum) who was collecting Livia, so we went back to her house for some lunch and a nice cuppa and Maisie came to play as well. Then we had a trip round Asda! Later, Granny and Grandad came for a quick visit as they have returned from their month long holiday. Lewis was very pleased to see them and it was interesting to hear about their trip.Later, Mun had made some chicken korma so she brought a dish over for me to eat .. it was SCRUMPTIOUS!!

Also on Thursday, it was Annabelle's 3rd Birthday so HAPPY BIRTHDAY to Annabelle, we hope you had the best day!

On Friday we spent the morning getting ready for our appointment to see Dr Mordekar at Sheffield. As usual, we were VERY early so James read some books to Lew in the waiting room and then we both watched James play on the PS2! Then we got to see Dr Mordekar who, as usual, was happy and smiling and very welcoming. He is such an amazing man, he always makes us feel better about everything. I think if we were in his office and a bomb dropped on Sheffield, he would manage to make us feel good about it!

He went through the letter with us that he had received from Professor Surtees at Great Ormond Street. He explained some of the tests, and confirmed that there is no treatment or cure for any of the conditions they will be testing for. He explained that the tests are so rare, and therefore expensive, and so he has to present a case to the Hospital Trust as to why it is necessary for these tests to be paid for. He also explained that one of the tests required bloods to be sent to America and that at the moment this is very difficult and that the likelihood would be that the blood would not make it through US customs and would be destroyed and disposed of. He also explained about the rectal biopsy, drew us a diagram to explain what they might be looking for, and spoke to us about the gastrostomy and possibly fundoplasty (I think thats the right word) - which is where the top of the stomach has a band placed around it to make the hole much smaller - this would help to prevent any reflux problems. Saliva would still go down, but not regular food which is fine for Lew as he doesnt have regular stuff, only his ng tube milk and water.

So the idea is that we see Dr Jenny Walker at Sheffield to talk about the gastrostomy and fundoplasty (Dr Walker did Lew's biopsies late last year). We may also see a geneticist, but this may not be necessary as the geneticist Dr Mordekar spoke to said he could not dispute what Professor Surtees says and that its probably not necessary for him to see Lewis before agreeing to the genetic tests the Professor has asked for. You see, Professor Surtees is SO famous and SO amazing in his knowledge that people all over the world are in awe of him. So you see, Lewis really has seen THE BEST.

Once we have seen Dr Walker about the surgery, then she would aim to do the biopsy, the gastrostomy, the fundoplasty and the blood tests all at the same time, under one general anaesthetic. The blood tests require quite alot of blood which is why they would prefer to do them under GA so as not to distress Lew (and more likely to distress James and I!). We should get a date within the next 2-3 months (we could have had the biopsy sooner but given how badly Lew reacted to GA last time, and given that the results of these tests wont really help us much, we'd rather wait and have just the one GA). Lew will be in Sheffield for at least 2 nights (hopefully not longer!) and while he is there they will also try to take a 24 hour urine sample - not sure how that works!

The tests that are planned are:

• Electromicroscopy of buffycoat layer
• Tripeptidylpeptidase 1
• Palmitoylprotein thioesterase 1
• neuroaminidase on white cell enzymes
• oligo-saccharides in urine
• ERPMA
• Mitochondrial mutation screen
• DYT1
• DYT11 - episolon sarcoglycan gene
• PANK2 gene
• Plasma for antibasal ganglia antibodies, lupus screen, ESR, ERP
• 24-hour urine screen for VMAs
• full thickness suction rectal biopsy
• nerve conduction study

Didnt mean much to us either, but these doctors know what they are doing, we absolutely believe 100% in every medical person we have met! Marvellous people!

On Friday afternoon, Lew and I popped across to see our friend Helen and to meet her very mad cat Tobey! We had a lovely time, and some lovely food, thank you so much Helen!

This morning I heard from our friend from Musical Minis (Sam's mum) who has offered to do some fundraising for Lewis' Fund this year. Sam's mum let us know about a fashion show she is hoping to arrange with the famous Doncaster store HOMEBOY in the next couple of months to raise money for The Lewis Jeynes Fund. At the same time, we would hope to raise awareness of Lewis' condition and also raise money and awareness of other children in the Doncaster area who may also have undiagnosed conditions and who would benefit greatly from specialist sensory equipment.

The Gentlemens Evening held on Tuesday was an AMAZING success! Around 240 people attended the event at the Holiday Inn (formerly Moathouse) in Doncaster to listen to the guest Speaker, Paul Merson, to enjoy the comedian, and to take part in the auction to sell off sporting and other memorabilia, not to mention the 3-course meal!! An awesome £4,000 was raised for The Lewis Jeynes Fund. With the money raised so far we have more than enough to furnish Lewis' new room with sensory and specialist play equipment.

SO THANK YOU VERY VERY MUCH from all of us for the huge generosity of all those who attended the Gentlemens Evening and purchased auctioned items or simply made a direct donation and also to Tony Gregory, Colin Wilson and Gary Marshall for all their time, effort and hard work in putting together the event.

Today .... Manchester United play Chelsea in some cup of other!!!