Lewis still not well

Just a quick update to say the photos I have promised wont be on for a bit longer as Lewis is still not well. We are caring for him at home (at the moment cant face hospital and so the local hospice community team are helping out with Lew's care at home) and hope he will be better very soon.

Back home again

As you may already know, Lewis was admitted to hospital last Sunday with pneumonia. Well we are back home now, very tired, but much better and looking forward to spending some time at home! Lew still isnt 100% so we have to take it easy with him for the next few days, but at least we can all sleep in our own beds again! I will update during the week with fashion show photos and other stuff about our week in hospital. But just a quick and VERY BIG thank you to all the staff on Ward 31. Cant remember all the names but will try to remember some: Anne, Alex, Jayne, Chris, Jodie, Gina, Fran, Helen, Dawn, Lydia, Debbie, Vicky, and all the visitors we had from Ward 30 and the CAU (Andrea, Janette, Sara, etc).

Lewis not well

Hello, just a quick hello to say Lewis isnt well. After 3 visits in one week to the assessment unit at the hospital as I knew there was something not right with Lew, we saw his paediatrician for his regular check up and were told Lew has a bad chest, and he now has two inhalers. Ventolin to help open his airways to help him to breath better and a steroid inhaler, not sure what this does but he's got to have it for at least 3 months. Since starting the inhalers, Lew's chest has got worse. Now perhaps without the inhalers his chest would have been MUCH worse, I dont know. But if he continues to cough, choke and wheeze the way he has done today, we will be back at the assessment unit tomorrow!!! Despite Lew being ill, he has been very happy to see his Aunty Nicola, Uncle Lee and especially his cousin Evie whom he adores! We also had a very special night last night (Friday) at the fashion show which was arranged almost single-handedly by our now very good friend Alison Firbank, and towards the end by her 'accomplice' George! I will add photos and more details about the night when Lewis is feeling better and I can concentrate more. Please do leave your comments. The comments space is looking very empty!

Make A Wish!

On Monday Lewis had his wish come true thanks to the Make A Wish Foundation (http://www.make-a-wish.org.uk/) and Heaven at Home (http://www.heavenathome.co.uk/outdoor-hot-tubs.htm). As part of Lewis' (and our) very special day, we were whisked away in a limousine to TGI Fridays in Sheffield for a gorgeous lunch. Lewis' carer from Bluebell Wood Childrens Hospice came along with us as she has done so much for Lewis over the past 10 months and has become very special to us. While we were enjoying ourselves in TGIs, the hard work was going on at home. Sandy and Dave (Make A Wish) were helping out Phil (not Tony!!) and Christine and co (Heaven at Home) to get everything ready for Lew while we were away! And what a wonderful surprise for Lew when we arrived home to see that he had his very own hydrotherapy spa pool in our back garden for him to use whenever he wants! Lewis benefits greatly from hydrotherapy. Not only is the water good for relaxing his muscles and supporting his body, but being in the water is something that Lewis CAN DO FOR HIMSELF. He isnt watching someone else, he isnt relying on someone else to entertain him. Of course we have to support him in the water, but he's in it, he's doing it, and you can see on his face HE LOVES IT! He has been poorly the past 10 days or so so wasnt too sprightly in the pool on Make A Wish Day, but we will keep you updated with photos of him in the pool once he is well enough to get in and enjoy it properly!

So thank you very very very very much to Make A Wish and to Heaven at Home for making Monday 5th November 2007 such a very very special day! And with Lew's new spa pool, many many happy days to come too!

The Yorkshire Post newspaper did an article on Lew's very special Make A Wish Day - http://www.yorkshirepost.co.uk/news/Hot-tub-helps-child-cope.3446938.jp.

Please remember, The Make A Wish Foundation is a charity so if you would like to help by making a donation or by doing your very own Make A Wish fundraising, please do go to the website for more information - http://www.make-a-wish.org.uk/

I have also added some new (old) videos to YouTube. They were very difficult to upload as watching them was incredibly upsetting for us. But we hope it will show you how much Lewis has lost in the past 10-12 months and how easily things in our life that are precious can be taken away http://www.youtube.com/SmnthJeynes.

Short update

Hello, Lewis has been very poorly for over a week now, he had 3 days without any milk due to a stomach bug and now he has a very bad cough which is making him sick again so he's not getting much milk again, and not getting much nutrition is always bad for Lew as he loses weight very quickly which leads to him getting ill very quickly. We've spent the whole week indoors trying to get him better, and we're just hoping he can improve alot for Monday when the Make A Wish Foundation are coming to grant Lewis' very special wish of a hot spa pool for his hydrotherapy. Please do leave your comments or sign our guest book. It makes the miserable days a little brighter. Update 3/11/07 7.30am After a very bad night, we are taking Lewis to the hospital to be assessed as he has had no milk, has been sick several times and his cough is much much worse. Update 3/11/07 7.15pm Well after a couple of hours at the hospital this morning it was decided that Lew should have very small milk feeds every hour to see how he tolerates them. It was easier to do this at home than to stay in the hospital so we've been at home and Lew has been in his bed (in his new room!) and I've been giving him milk every hour in a small amount and (fingers crossed) he has tolerated it really well and is now asleep. His cough did worsen towards the end of today, but he seems to have settled well and hopefully he can get a good night sleep. Thank you to everybody who texted with your kind wishes today, it really does mean alot. Update 4/11/07 10am Lewis is alot better after a reasonable night sleep so we are going to try going out today! Hooray! We were going a bit nutty being stuck indoors! PS Annette - thank you for your guestbook comments - if you have my email address, could you email me? I would email you through the link but I know I'll forget so if you could email me it will remind me! PPS Helen - hello! Samuel's favourite colour ... hmmm well he likes to wear black (being a teenager) but he also likes blue and red and green and most colours really. He's into a game on his xbox at the moment which is about an alien (its called Halo) and I think his alien is blue!