Sorry, I didn't manage to update the last entry, our lives are just too hectic. So here is a quick catch up on life in BN1...
JESSE; he is doing really well. He had a tummy bug the Saturday before last (I think he caught it from me, I was really sick and poisoned all day with horrible diarrhea). In the evening he began to say he felt sick and then he threw up three times in an hour. By this point I was feeling a little better but very was very worried so I took him into the Alex (our local children's hospital). By the time we got there he had perked right up and was so chatty they sent him home after a couple of hours! We didn't give him his overnight milk feed and he was off his food the next day BUT...miracle of all miracles...he virtually stopped pooing! The next day his 24 hour levels went from 1000mls to 120mls!!!!!!!!!!! Once he started eating and having his overnight feed his levels settled to 400mls and we were delighted! I won't be too graphic but suffice it to say we have almost seen a normal poo, we all felt like celebrating! We went to GOSH for the BMT clinic on 23 May and they were so happy with Jesse they said we had to comeback in three weeks. We have added loads of food successfully; banana, pear, apple, peach, new potatoes, chips, tortilla chips and ketchup. He seemed to have a reaction to water melon and mango, poo levels rose to old levels for couple of days and now these have been excluded they are right down again. Jesse has lost weight but not too much. He is full of energy and in great spirits. Today he had some proper bread and it seems to have gone down well...I put an ad on Brighton Gumtree for some help in the day with Jesse and we found a lovely girl called Hayley. She can help out quite a few days a week and Jesse adores her which is quite a relief...so this takes us on to...
CLAUDIA AND DEREK; we are OK but very tired. It has been hard for the past four weeks since we came home. There is an endless round of medicines, physio, cooking, cleaning and shopping that has to be done. We use around 25 syringes a day to give Jesse his medicines and flushes, that in itself is exhausting. The milk feed has to be changed in the middle of the night (bottle and line), Jesse is up three times a night quite often and then Bernie can wake as early as 4.30am and need settling. Sometimes we have to let him scream. We try and take it in turns but often we both wake up. Then one of us has had to be with Jesse all day every day, the only places we can go with him are the beach or the park and of course the weather has been pants. We are both hoping that having some help in the day will help...so this takes us on to...
THE HOUSE...it is still a building site but the dry rot is sorted. We got the guarantee last week. We have lost some of the ceiling mouldings but to be honest I just don't care, we'll make it look nice. The builders reckon they'll be finished at the end of this month or soon after so we may be on target to move in August. Albie has done LOADS of work decorating and it is all coming together. Yesterday because we had Hayley looking after Jesse, Derek and I were able to be at the house together for the first time since we bought it 2 months ago...again quite a step forward...also I have had a bit more time at...
THE SHOP...which has been doing really well but does need some TLC. I've started with this but I need a lot more time to get it into shape. Everyone has done a great job keeping it in order but it is very hard to do when you have lots of customers to serve...
SO THAT IS OUR NEWS...there is more but I must stop now. I know there are lots of you that are checking to see how we are doing and we still feel the love! Keep in touch by blog, email, text or phone...
STOP PRESS...WE GOT OUR ENGRAFTMENT RESULTS TODAY AND FOR THE FOURTH MONTH IT IS
100%!!!! After six months they call the BMT a success...anyway must go to bed, love to you all,
C
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STOP STOP PRESS...Sorry I forget to say this last night but we had some good news about Bernie yesterday. Dr David Webb, haemotologist at GOSH finally wrote to us saying
"The results of all investigations, especially the full blood count done in Brighton, were completely normal. I reviewed the blood film which was normal. Bernard had previously had a blood count here which showed completely normal values together with a review of blood film which was also unremarkable. I think this is very reassuring." I think he is trying to tell us that Bernie is normal! I will do my best to relax and believe him,
C
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