Day +88

It is Monday, 30th April. I can't believe it will be May tomorrow; full of bright sunshine, long days and blossom. We came here in cold, dark January. We've been here for 14 long weeks, but now it looks like we are finally going home! We are still working to this Friday, although we are aware that means letting us out over a bank holiday weekend. If things don't go to plan this week we'll wait till next Tuesday. I am beginning to get excited...Last night Jesse had his last meal of TPN (IV feeding). His overnight milk feed (oral) is up to 45ml per hour, tonight he will hit his target of 50ml per hour! We now have to see how he manages his electrolytes, and whether he will need supplements of potassium etc. I'll try to post regularly, so you get a picture of how it going.

We have had a mad week, Derek was at GOSH for three days, we did another swap over in the night on Saturday. The trains were so bad we both took the coach. I was just coming into London when my phone rang. "I think I just saw you!" Derek shouted excitedly..."Are you in Wallington?" I asked, and he was! That was the closest we have been for couple of weeks!

While Derek was here he was taught how to prepare all Jesse's medication, crushing the tablets and mixing with water. I will start learning today. On Wednesday our milk pump will be delivered to Brighton and someone from Brighton is coming here to teach me how to use it. So its all go, go, go.

While I was in Brighton, I did loads of sorting and rearranging, especially in Jesse's room. On Saturday Helen and I spent 6 hours cleaning the house from top to bottom, so now I feel happy about bringing Jesse home. It is spotless! The wonderful Helen will come in again on the day he is discharged so it will be doubly clean...must go as there is lots to do today, physio, lesson, medicines etc...Keep in touch, sorry to be such a rubbish blogger.
lots and lots and lots of love,
Claudia
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PS Scooby says "AAUW, AAUW, AAUW!" Jesse wanted him to have his say on the blog today.

Day +80, +81, +82 and +83

As I wrote before...no news is good news. We were given a provisional discharge date yesterday...the earliest it could be is Friday 4 May! Hooray! BUT, and there is a big but, there are a lot of hurdles to leap before then so I'm not holding out for it. The really good thing is that at least it is on the horizon. Before we go Jesse has to be weaned off TPN totally (they hope it will stop Friday/Saturday this week). He has got to get to 50ml per hour for the overnight elemental feed, and tolerate this without the diarrhea getting out of hand. He is on his second day of 35ml per, so he has six more nights to reach target. His poo levels are rising, and yesterday I was getting worried, but today so far he has been much better. Then, when he is off TPN they need to see how his electrolytes settle (potassium, magnesium, phosphorous etc). These are all given to him via the TPN and as his diet is very limited (rice krispies, rice, wheat free pasta and water) he can't get them that way. They will need to give him supplements and they can make you sick, they have to be sure he can tolerate them. so you can see there is a big BUT!

In the meantime we are just getting through each day. Jesse is very happy, he loved Tony Robinson's visit. What a kind man! I'll write more about that when I can. Derek and I are doing our swap tonight (probably crossing paths somewhere between Gatwick and East Croydon). I have to get back to meet the dry rot man at the new house. If Jesse stays well I'll stay in Brighton till Saturday and then if discharge is still on the cards I'll stay at GOS until we go. I'm rushing to get everything sorted and on the train tonight. It has been a mad day with two hours of physio (Jesse's legs are very weak) plus lots of defending the ward from invaders with his new sword, a fabulous present from Rhianna, Lynne and Dave who visited yesterday. So I'll do the rest of this blog in photos and update more later,
lots of love
Claudia
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GREATHAM PHOTOS-we went there for the day on Sunday!

Jesse in Al's Garden.

Jesse in the bluebells with a weed whacking stick!

By the Meeting Tree!

At the sandpit with Benj.

Cavemen!

I think he enjoyed himself!

TONY ROBINSON'S VISIT

They looked at his puzzle.

Did a bit...

and had a great time!

Tony showed treasure to Jesse's dogs!

This is the puzzle which we finished that day...it was one that the dogs had had specially made for Jesse's birthday, I knew they were clever, but this is ridiculous!

Day +79 (cont)

Photos of the Day

Our warrior, Queens Park

Annie, Maggie, Jesse and Farrah, Queens Park

Granny with flowers in her hair and shirt, Queens Park

Jesse and Annie on the bandstand, Queens Park

I'll let the photos do the talking, we had a lovely afternoon in Queens Park on Saturday!
love
C
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Day +77, +78 and + 79

Hello again, thank you for all your positive comments. Things are still going well here(touch wood). Jesse's stools output is steady, while the elemental feed has increased to 25ml per hour. He isn't too hungry but still enjoys the pasta at 4pm and is snacking throughout the day. Everyone who comes across Jesse falls in love with him, he is full of information, stories about past lives and has developed a very loud and infectious laugh. It takes very little to set him off. This morning he asked his nurse if any dogs had been kissing him while he slept. She told him he had had one under his arm, I said he mus have been sniffing his arm pit...that was it, he was off, roaring with laughter!

I was planning to do a swap with Derek on Thursday evening...but, as ever our lives rarely run smoothly...he rang on Thursday morning sounding very ill, he had been up all night with a stomach bug! So I stayed here, and he slept all day (luckily Bernie was at nursery). He is much better now, but I have decided to stay here till Wednesday evening (I can't miss Tony Robinson on Tuesday) and on Thursday I need to be in Brighton to meet the dry rot man. I went back to Brighton yesterday (Friday) for the day, Red Ruth held the fort here beautifully, so I got on the train and spent three hours with the builder before coming back. I couldn't risk going home, so it was quite strange...anyway, builders are sorted, they now know what they are doing and we have a plan!

Because I was in Brighton I missed ward round on Friday, but I was able to do it by phone. According to Ruth, Paul Veys walked in and said that Jesse was too well to be in hospital. On the phone to me he mentioned the "H" word! He said we could be home within two weeks or maybe less!!!! He said that they would have him off TPN by the end of next week, the overnight elemental feed is increasing by 5ml an hour every two days, the target is 50ml per hour...so that is another 9 days. He said that I would have to be taught to give Jesse all his oral medicines and was quite surprised when Ruth told him I was doing it already. BUT...I can't get too excited because it could all go wrong very quickly, he could spike a temperature, poo could increase and GVHD could flare up. Having said this, it is wonderful to see a light blazing at the end of the tunnel that has looked so black for so long! I keep touching wood, maybe that helps!

This afternoon we are going to meet up with Maggie and co at Queens Park for a couple of hours and tomorrow we are planning a trip to Greatham! I got the doctors approval this morning, Jesse is very excited (we can't home as planned because the boys could be brewing the sick bug).

Listen my lovely bloggers, it is hard to keep doing the blog on a daily basis, as I explained before. Jesse has been very patient this morning, he wants to play Medieval Total War, but he has had to wait while I do this. Let me make a deal with you all...it is the same one Lily and I struck when she went to Iceland last summer and we have stuck to it ever since. If all is well we don't have to talk, if not we promise to make contact asap. That way we can both relax and get on with stuff without worrying how things are. So, I faithfully promise to update the blog when I can, if I have something to say and definitely if things aren't going well! Is that a deal? I hope so.

I will write on Tuesday or Wednesday with photos of Tony's visit, and if we get a discharge date I'll let you all know. Must go now or we won't get to NW6 in time,
lots of love to you all,
Claudia
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Day +76 (and the rest of the days since the last post!)

Photo of the Day

Jesse was thrilled to see a raven close up in Regents Park, it flew off just as I got the camera focused, he was very keen that it went in the blog today!

Sorry, sorry, sorry! It is getting harder and harder to keep the blog up...please bear with me. Jesse is busy all day, and is off his lines more, so we are out more. Also he has rediscovered computer games, wonderful in that he can amuse himself more, but very difficult to get use of the computer. And when it comes to the evening I am shattered or have visitors so I just can't fit it in. I'll do my best to catch up the last few days.

Things are very good at the moment...small pause while I touch some wood (I seems to be doing a lot of that recently). Jesse's poos are now at very low levels. We had a very scary blip (but blip it was) over the weekend, I am pretty certain as a direct result of Jesse's birthday cake. I didn't see it myself as I had to keep away, and I don't know exactly what was in it. In retrospect he should have only had a tiny taste, as it was topped with icing made with margarine. His diet is low on sugar and fat free. So on Saturday Jesse's diarrhea was up to previous levels, double his average daily rate. By Sunday it was decreasing and on Monday it was back to a very good rate. I really panicked, I could see all our hard work possibly disappearing down the pan (pun intended)! The doctors kept the overnight oral feed at 10 mls for 4 days, when it should have been going up by 5 mls every 2 days. They also decided not to decrease his steroid dose.

Luckily at ward round on Tuesday I managed to persuade Paul Veys to drop the steroid levels (and today he was fine-no extra GVHD at all) and got the doctors to up the feed too. Tonight he is up to 20 mls per hour. When we get to 50 mls we can go home! Fingers crossed, touch wood...I really can see the light at the end of the tunnel now and it is elating. At the same time I am so aware that it could all go wrong (yesterday Jesse's temp was 37.7 for one reading). 38 or over means days of IV antibiotics, but I took his T shirt off, fanned him, gave him a drink and within 10 mins he was down to 37.5. After that it went down further! Jesse is putting on weight rapidly now, so they are reducing his TPN (tonight it will run for only 12 hours, which means he will be off lines for 12 hours, four more that normal).

I am plotting a plan to bring him home on Sunday, just for the day. I will ask the doctors what they think tomorrow. I wish I had a photo of his expression when I suggested it may be possible, it was pure delight! He says he needs to get home to sort his olden days cupboard out (in the kitchen he had organized the olden days crockery all into one cupboard and was very distressed when he heard that new days plates and bowls may have been put in there while he has been away). Because a lot of his IVs have been changed to orals we have more and more time when Jesse isn't hooked up to drip stand. When I came back to GOSH on Sunday night I brought down the car, so we have taken advantage of the freedom and the beautiful weather.

On Monday Jesse and I went to Regents Park. We walked all around the Inner Circle and went into the Outer Circle. I had forgotten how stunning it is, peaceful, tranquil and full of tulips and blossom. Jesse loved the bandstand, the boats on the lake and the black swans. On Tuesday Red Ruth visited and, following an inspired suggestion by Tim, we resolved to go and look at HMS Belfast, which is open to the public and moored near Tower Bridge. We managed to wangle a parking space in a private road just by it. Jesse was so excited when he saw he instantly wanted to go on it. I explained that it would mean missing Raven and probably his pasta too, when he said he didn't mind I knew we didn't have any choice! As he isn't allowed inside in public places we just made our way around the deck, but he was thrilled by the guns and we peeked inside and saw and enormous torpedo. His legs were too weak to go up the steep steps to the higher levels but he was delighted with what we could do. Today we went back to Regents Park with Red Ruth, who took us to a secret garden. It really was stunningly beautiful, walkways with arches of purple wisteria and pale green narcissi, purple tulips and statues of boys with shields bearing gilded griffins. Jesse is now so strong and resilient, he finds joy in everything. It is a delight to be in his company!


Jesse on HMS Belfast, in front of the big guns.


Jesse in the secret garden.

Thank you to everyone for birthday cards and presents, an especially big thank you to Sam (and Rachel, Paul, Isaac and Rosie) for the inspired animation of Jesse at Greatham with a blue Mohican! It is brilliant and had us in stitches! And another enormous thank you to Annie for your beautiful rendition of Happy Birthday on disc, we loved your messages; Jesse giggled and giggled! And little Lily, thank you for your messages and drawings, you are very clever! Sorry I have been so bad at keeping in touch and replying to emails, I have lists of people I want to write to but I just don't get round to it, please forgive me! It is very hard doing our swap overs, Derek and I are half living two existences, both as if we were single parents. It is very tiring and pretty lonely. Now Jesse seems to have turned the corner at least it doesn't feel like we will be doing this forever, but is quite a mad way to live.

On top of this we have to sort out our new house. It is in pretty bad nick to say the least. This week we found out it is riddled with dry rot...a surveyor is coming next week, I am hoping we can deal with it relatively inexpensively and avoid toxic fungicides; updates will follow. As my rock, Lily, pointed out, is isn't worth worrying over small things that don't really matter, so we are going to do our best not to and concentrate on getting Jesse home and better so we can be a family again. And now for a very exciting piece of news...


TONY ROBINSON IS COMING TO SEE JESSE NEXT TUESDAY AT 9.30AM!!!!!!!!!!!!!!!!!!!!!!! Following the mean April Fools joke in the GOSH mag, the matron, Mary, got onto the press office and asked them to get him to come and visit. Of course, Jesse being Jesse, he wasn't too impressed and said he would much rather meet Raven. I have explained that I am already trying for a visit from Raven (I have filled out the 20 page application form for a charity called "Make a Wish Foundation", so I think it will happen) and I hope once Tony turns up Jesse will tell him all about his past lives so all will be well! We will get him to sign Jesse's Time Team book (thanks again Katie!) and take lots of pictures.

Our lovely friends and family, please don't give up on us and send lots of comments. Jesse loves hearing them; he roared with laughter at the idea of Surrenden Crescent frogs coming to visit him in hospital!
lots of love to you all,
Claudia
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Day +72 More Birthday!

Photo of the Day



Here is Jesse brandishing the famous sword and shield...he was right all along, just what you would expect from a wise and brave warrior. "Hold your head high Richje, you have guessed well young warrior, rich rewards are in your sights!" as Raven would say!




Jesse had a lovely day today. It was a shame that we couldn't be there, but I know he had a really good time. Derek got the webcam working so we were able to see and hear his reactions to his presents, the gorgeous Red Ruth helped him to open them while holding her mobile phone on speaker phone for nearly an hour! We did manage to get two way sound going, as well as pictures, but only after all the excitement! Hope you enjoy the photos...

Thank you for all your birthday wishes, Jesse loved hearing them. He did very well for presents; a scalextric, a voice changer, loads of jigsaws (including two we had made especially), a wooden sword and shield (yes, he was right...no breadboards for him!). The BMT diet kitchen made him a special cake, which according to Derek, was wheat free, dairy free, egg free cake and very delicious...
Here is a selection of photos...I hope you enjoy them!




The good news is that Bernie is very much on the mend. He had a couple of dry biscuits for lunch and a bag of mini cheddars for tea, he was very perky towards the end of the day and settled easily. I took him to the doctors this evening, our wonderful GP, Liz Green (who originally spotted that Jesse was very ill) squeezed us in. She reassured me that although he has a tendency to being wheezy and mucousy, he is generally well and will grow out of this.

love
C
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Day +71 and +72...HAPPY 7th BIRTHDAY JESSE!

Well, I don't know where to start...It is Friday 13th today and most importantly Jesse's birthday. He is very excited and now has a massive pile of presents piled high outside his room on Fox Ward. Derek was all set to decorate the corridor outside his room with balloons and banners, but was told late last night the latex balloons are forbidden. Apparently a child once got hold of one and had a very bad allergic reaction to the latex. I have pointed out that the same child would have had a similar reaction if touched by a nurse wearing latex gloves!

Two days ago Derek had an incident where the house keeper tried to confiscate two inches of wine on the basis that it shouldn't be kept in hospital property (the fridge)...The nurses have always said they turn a blind eye to moderate alcohol drinking on Fox ward as parents are stuck there for such a long time. Then yesterday the same house keeper threw all 28 mini portioned bottles of Jesse's precious liquid aminos (like soy sauce, used for his 2tbsp of wheatfree pasta every afternoon) into the bin. They did say "use by 11 April", but this is because the milk room always date things for expiry the next day, they were in fact good for another 7 days. Luckily Derek noticed and, as they were bagged up, he was able to retrieve them from the bin...It really feels like being at school sometimes. I know they have to have rules, but it can get very wearing!

Sorry about that rant, and now back to the birthday. We had the lovely Jen (health care assistant)on last night, so instead of the balloons, they organized cardboard cut out balloons and a great big sign saying "HAPPY 7th BIRTHDAY JESSE". He was delighted! Sadly things the Brighton end went horribly wrong today. Bernie woke at 2am coughing very badly. I couldn't settle him for ages, then this morning I woke at 6.45am to hear him coughing and crying, but I realized there was a "wet" sound to the cough...he was actually vomiting in his cot. He's not too bad, but he has been sick three times now and is very wobbly, he keeps falling over. He hasn't asked for any food today which is almost unheard of for him, I'm sure he has a bug (again). So it has meant that Albie, Stan and I can't come up to London to see Jesse for the day. I was going to leave Bernie at nursery and jump on a train, then Derek was going to go back with the boys in time to pick Bernie up in the evening. A great plan, but not to be. Jesse is very chilled but we are all really gutted. He has yet to open his presents, we have got the webcams working both ends for the first time today so we'll be able to watch him opening them and hear what he says. I'll put some photos up later. Any cards and presents from Brighton will have to wait till I see him next (probably not for a few days to make sure I don't have the bug), but I suppose that'll just make his birthday last a bit longer!

We just had ward round today (by telephone). Earlier this week we had some very good news, the blood tests for adenovirus and EBV came back negative. The results of a retest yesterday have just come back as negative too. Jesse's diarrhea is very much under control and he is eating much more (of the same) and managing the elemental feed into his PEG overnight. They put it up to 10ml per hour last night, and will keep increasing the quantity slowly. At the same time they are decreasing the TPN, Paul Veys has just told me that he could be off TPN by the end of next week!!!!! On Monday the plan is to start to drop the steroids by 1mg a week. Another very positive development is that they are transferring some of his iv medicines to oral. All these are steps that bring going home closer.

Jesse and Derek had a lovely day yesterday, Venetia took them out on a sightseeing trip in the car, Jesse loved seeing some mounted guards. Other than that I don't think there was much to say. Albie and I are working like mad on the new house (see below for a photo). It is in quite a bad way, the builders start next week and we are trying to get it decorated inside asap. We won't be able to move in for at least 4 months...sometimes I think I am completely crazy!

Thank you for all your birthday wishes, cards and presents...you are all very kind,
love
c
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121 Preston Drove
Brighton
BN1 6LE

Day +68, +69 and +70

Photo of the day


The tank puzzle










Wow! have we missed that many posts? It's a bit strange the way we're doing these swaps at the moment - One minute you're looking after a house in Brighton and a very demanding (and gorgeous) baby, then we cross paths on the train and it's a very different but still intense world with Jesse.

Jesse seems to be improving slowly - he feels fine, is putting on a little bit of weight and is still on fine form. Today he spent a lot of time doing computer jigsaws. Tim came over and we went over to the Brunswick for a chat and coffee etc. Jesse's cornflake / Rice crispies portions have been upped a bit and he has also started an overnight feed (into his stomach rather than IV) - see Claudia's next medical update for further details. He seems to be coping with all this very well and his poo levels look great so far today.

I went for a meal with John and Venetia this evening which was lovely - thank you to them.

Jesse is getting quite excited about his birthday (he says the only thing he knows he is getting is a sword and shield made of oak) - thanks to whoever managed that!

I can only admire his amazing spirits in this situation. Sorry for the lack of excitement or adventure in this post! I thought I should write something but now I need to sleep....

Love

Derek

Day +65, +66 and +67 Happy Easter!

Photos of the day


This is what Jesse was hunting for...


...and this is what he found, each chick equals a chocolate egg eventually!



There isn't much to say about the past three days. GOSH over the a bank holiday weekend is probably one of the least excitng places in town! Derek did Saturday and in the evening we swapped over by getting the trains to Farringdon/Preston Park the moment our charges were asleep. This meant our paths crossed somewhere along the Silverlink line, probably around Clapham Junction! Like ships in the night, but not so romantic! We'll do this again tomorrow night and will continue indefinitely. I know we'll see each other on Friday as it is Jesse's birthday. So apart from friday Derek and I will have to stick to a telephone relationship until we are discharged. The reason for this is that there has been a case of chicken pox at Bernie's nursery and we don't want to risk Bernie and Jesse meeting.

If you want a comprehensive medical update for Jesse then look at my comment on Day +63. Nothing much has changed since then. Poo levels go up and down but have been under a litre for over 10 days and as low as 320ml. Jesse is on a diet of dry cornflakes, rice krispies and two tablespoons of wheatfree pasta a day, washed down with boiled water. He doesn't complain at all, and has stopped dreaming of exotic foods. He is putting on weight and is very lively and happy. The GVHD on his hands has gone now, so I am looking forward to ward round tomorrow in the hope that they will reduce the immunosupressants and start some kind of oral feeding...

We went to the South Bank today which I think he enjoyed. Derek and he finished the 1000 piece tank puzzle (photo tomorrow) and we have started another one. It is a Wasgij, where the picture on the box isn't what the puzzle is, you have to use your imagination to guess what it might be. We are having great fun with it!

Lily came up on Easter Sunday, and we had an egg hunt in the play room. She had found a load of plastic eggs which she filled with little chicks, we promised him that when he could eat chocolate again he could exchange them for Easter eggs. He also found an extra large egg filled with Scooby treats! He loved it! He did get some eggs from us and the hospital but they are all untouched for the moment. He has a pile of presents outside his room and is counting the days till he can open them! That's all for now, time to go and get some supper,
Lots of love and happy Easter to you all!
C
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Lily playing in the playroom!

Day +64

Jesse and I had another good day. Paul Veys (consultant) popped in for a brief chat this afternoon and seems happy with his progress. He could see that Jesse is very well in himself but we just need to get the poo under control.

It was another glorious, sunny day so we went over to Russell square for a while. It's so good that we can escape for a while in the afternoons but the thought of the pasta meal gets us back by 4pm sharp. Today it arrived bang on time so no missions required to find it.

Jesse seemed tired this evening so I got him ready for bed, put the lights down and we watched "Dr Dolittle" (Eddy Murphy). He hasn't been keen on watching films recently but he saw a bit of this one during an ultrasound this week and loved it. Claudia found a box set of Dr Dolittle 1,2 & 3 on wednesday and I've waited for the right moment. I just put it on knowing he would be gripped straight away. Halfway through he had his dry cornflake snack and we pretended it was popcorn!

He really enjoyed the film and has been sound asleep since. I am now heading the same way so will say goodnight....

Love

Derek

Day +63

Hi everyone. It's great to be spending so much time with Jesse. Once again he was on great form today, so accomodating and polite with the medical staff - every request is answered with "yeah, sure you can" and he is so chatty when engaged with something that interests him.

I took him over to the Brunswick again today, it was a lovely sunny day so we had to put sunblock on him. It was so busy that we didn't stay long and it was getting close to meal time anyway (the highlight of the day).

Once settled back in the room, Jesse started to watch the clock for 4.00pm (pasta time). After a couple of checks in the kitchen and no sign of it, Jesse decided that we should go spying for it. We set out along the vast corridors lisening for tell-tale sounds from the lift shafts. We had a few false alarms and then decided to check whether they'd sneaked it into the ward without us noticing! No such luck. We were about to embark on another mission when the trolley appeared! A very apologetic lady explained the difficult circumstances to Jesse but he still pointed out that she was extremely late! (4.45). Jesse savours every tiny morsel of food that he can have. He is always looking forward to his next cornflake snack.

We did lots more jigsaw tonight. The tank one could be completed over the next day or two (picture will follow).

Tim came over tonight to bring easter treasure from Sue (thank you, he will love the olden day coins and badges). It was nice to have catch up with Tim and he brought some lovely Carlucio treats.

Must get some sleep now.

Love

Derek

Day +62 - Claudia goes home for a few days!!!

This really will be a brief note!

Yes, we've finally been able to do a handover so that Claudia can go home for a few days. She gets to sleep in a proper bed for the first time in 10 weeks! I hope she has a great time with Lily, Bernie, Albie & Stan.

Jesse was on great form today and it was lovely to spend some time with him again. We got out for a walk over to the Brunswick Centre in the sunshine. We did some more jigsaw and Raven challenges this evening (Gaby - I can't explain Raven now, but 5pm CBBC if you can get it).

I'm going to get some sleep now and I'll try to write more tomorrow.

Love

Derek

Day +61 Happy Birthday Chloe!

Photo of the Day

We all hope Chloe has had a wonderful 75th Birthday (spent at the clinic like last year) and we thank her from the bottom of our hearts for all of her kindness, support and help! We look forward to the official birthday celebrations in the summer, by which time I hope we'll be out of here...Bernie is sporting his upside down palm tree hairstyle in honour of the occasion. Thanks to Lily for the photo.



We have had a boring but OK day, but poo levels are very low and I have a feeling they will stay low (famous last words). Jesse is happy, we've started our tank puzzle (see below for our cricket scene) and Jesse is ploughing on with it. Derek is coming down tomorrow and we are going to do a swap! Bernie will be at the childminder's all day and Lily is going to pick him up so we'll have a full day to do a proper hand over. I'm a bit nervous but I'm sure it'll be fine. Its the only option now as Jesse is likely to be in GOSH for a lot longer and I have done this without a break for 71 days.

To answer your question Lily, Jesse's warrior name given by Raven is Richje and his emblem is the sun! He loves the site and has played all the games. And Cory, sorry but Club Penguin is blocked here, as are all chat sites. Thank you for all your comments everyone, I read them out to Jesse and he loves to hear them.


The dogs have something to say too!




This jigsaw puzzle reminded us of cricket weekend at Parham, it took us a week and the sky was a killer!

Day +60

We won the Battle of the Nil By Mouth! Hurray! And today Jesse was doing brilliantly...128ml till 8pm and then he blew it by doing a whopping 484ml, now he is 10 ml less than yesterday and we have 10 hours to go still. Nick Goulden said he was very happy with the decrease and was fine with us continuing with our diet. He also said he was happy with up to 750ml a day, so I hope we will keep below that...cont later...

now its later, in fact its the next day...

Our downward trend went upwards yesterday, 983ml yesterday. I woke up totally gutted, but the doctors are not too bothered. Their line is that if its a trend its bad, if its a blip that's OK. So I have taken Jesse off rice and he is only having one meal of wheat free pasta, other than that he is allowed rice kripsies and cornflakes up to every two hours. He is perfectly happy with this, thank goodness. We are both very aware they could insist on nil by mouth at any time. Enough of poo for now, just keep your fingers crossed for us.

In the afternoon John came by and took us on a tour of the sights of London. It was a beautiful sunny spring afternoon. I had had to drag him out as he had convinced himself it would be too hot outside (he had been sitting in the sun in our room and thought it would be like that) so he wasn't the most gracious of passengers. As we drove towards Buckingham Palace we saw some soldiers in camouflage marching up and down with their guns. So we stopped and got out to look at them. Jesse was thrilled. Then we went to the Serpentine and we enjoyed watching the pedal boats (Jesse wanted to have a go) and the swans and ducks. Although Jesse was very quiet he did a lot of laughing and later on apologized to me for being grumpy. Thanks so much John, it was really kind of you, we'd love to do it again sometime!

Nothing much else happened. We started a new jigsaw puzzle, loads of tanks on a white background. Jesse is working on it as I write, he is really patient and is astonishingly good at locating where pieces belong!

Day +58 and +59...Happy April's Fool!

It'll be a brief synopsis...Saturday in Brighton was fantastic, our old house felt like home, the shop was beautiful, full (of stock and people) and tidy (thanks a million girls for all your hard work!), new house will be gorgeous...lots and lots of work though. Albie and Derek have started and builders go in at the end of the week. Journey there good, back horrible; trains choker. Ruth is a true star! She and Jesse had a great day. She rang me with every temp and poo, so I really felt in touch. I will be eternally grateful. Good news is poo rate is right down (touch wood), so I will argue the nil by mouth ruling tomorrow. The nurses are on my side. Wish me luck. Today was very quiet, but we had fun and tonight Jess read two books almost entirely by himself...he has never read a thing in his life before; he was thrilled. Oh and the Time Team thing was a cruel April Fools Joke, but the Ward Matron was our nurse today and has talked to the press office about getting Tony Robinson to see Jesse. We are thinking of asking Raven to visit too! That's all, must get back to making a book order,
love
C
PS Hiya Stefan, Jesse loved your message. I told him about you and the NG tube and the coke and he was well impressed! Hope you aren't feeling too rubbish and that you get onto yellows soon, love from Fox ward!
PPS We finished our really hard jigsaw, photo tomorrow.