Time for an update

Charlie's behaviour at pre school seems to have improved a bit, so fingers crossed this will carry on. But health wise he doesn't seem too good. His nurse came out on Thursday to do another cough swab as he still seems poorly but is getting worse if anything. His cough is very wet and he just doesn't look very well, he's got dark circles under his eyes and is very pale. He is not drinking very much which is very unlike him so has been on a drink that has extra salt and things in it to try and keep him hydrated as he seems to dehydrate quite quickly. He also has a temperature that keeps coming and going so I'm a little worried that he's developing another chest infection, at the moment he is on augmentin duo at his treatment dose rather than the usual prophylactic dose and also his second line treatment which is Azithromycin but it just doesn't seem to be shifting so I'm going to see how he goes over the weekend if he doesn't touch wood get any worse I will take him up to the ward on Monday for them to have a look at him again and see what they want to do with him or if I do get more concerned for him I will obviously take him up sooner. He's been getting very tired as well and not really wanting to do much which is very unlike him.

On a happier note I have booked his birthday party for the 12th of October it's in a big soft ball area that he loves so hopefully he will be feeling much better for that. I have invited 10 of his friends from pre school or should I say I will have if I ever get round to sending the invitations out!! I keep forgetting them every time we go. We also were lucky enough to be sent some tickets for Thorpe park from postpals so I will be taking both boys there which will be a nice treat for them, they don't know about it yet I'm keeping it as a surprise. I'm also looking around for someone to make me a cake for Charlie, he wants a Gordon out of Thomas the tank engine cake but I cant get one any where plenty of Thomas ones about typically! Charlie wants everything under the sun for his birthday anything he sees on the tele he says he wants!! Think I'll have to select a few things otherwise I'm going to be robbing a bank to pay for it! He loves having his photo taken and trying to take other peoples so I was thinking of getting him a Fisher price digital camera it's suitable for his age and I think he'd love it, he also likes to try and play on his brothers games consoles so I thought about getting him a V tech Vsmile which he could play games suitable for his age and he would think he was playing like his big brother so that's what I've got in mind at the moment anyway.

Ollivers been getting on well to. He has settled back into school well although I don't think he thinks a lot of his new teacher! He says she shouts all the time even if it's just for a silly thing, he's normally pretty well behaved in school so I don't really see what she is shouting at him a lot for I think either he is exaggerating and probably chattering to much and not concentrating or shes a control freak!! The first being the most obvious choice! I noticed on Monday when we were on our way to collect Charlie from pre school as he does a full day on a Monday and finishes 15 minutes after Olliver that Ollie was getting a bit breathless. We weren't walking up a hill or anything like that and I've not noticed him like that for a long time, when I asked him if he was feeling puffy or anything he said yes a bit so am slightly concerned about that as all his symptoms have been well under control for a long time now. I am glad that he has a clinic appointment coming up at the end of the month so I will speak to his consultant about it then he has been having trouble with his nose as well it always seems blocked and he has been using a lot of the menthol products about to try and help him but I don't think that can be good for him on a long term basis. So as I say we will see what his consultant has to say about all of it. Anyway I think that's about all for now Ill update again soon when I have more news about Charlie.

Good news

Well quite a lot has happened since my last blog mostly good i have to say so that makes a change!! Firstly i have applied to do an open university course in health care starting in February which i am really looking forward to. I am waiting for some forms to come through to help me with funding it as to do the course is quite expensive, they have also told me that I may be able to get some funding to help with buying a lap top to do all my work on, which would be very handy and would still allow the boys to use this one whenever they like without the worry there going to delete all my work or Ollie wanting to go on the Lego site while I'm trying to get on!! So I was really pleased about that. The next thing Ii was pleased with was that some time ago Ii applied to a charity called the family fund, they are an organisations that has been set up to give grants to families with poorly children to help directly with the child for example they give holidays for the family to help reduce stress and give happy memories or they could help with a new washing machine and tumble drier all sorts of things really. Well the thing that I applied for was driving lessons I really wasn't holding my breath that I would get them but on Monday I got a letter through to check if Ii still wanted them and that if I did to return the form that basically just said that they would be able to provide the lessons but would then not be able to help me for a further two years, which obviously didn't worry me at all as i was just so grateful for that. As it will make things so much more easy for us like when we have all the hospital appointments being able to drive there rather than relying on people to take us or using buses and taxis etc and when I need to pick up repeat prescriptions and then get the medication it will all be so much easier that's assuming i pass my test!! The award consists of 40 hours of lessons 2 attempts at my theory 2 attempts at my practical and all the books etc that i may need to help so i am thrilled and cant wait to get started and am very grateful to them for this.

On another note Charlie doesn't seem so good at the moment. He has seemed like he has been coming down with something for a few weeks but it hasn't come to anything. He is coughing a lot more and his behaviour has got quite bad. He's never been an angel but when I went to collect him from school on Tuesday his leader told me that he has been aggressive to some of the other children and is getting really angry at the smallest things which she has said is really not like him at school. He does have a tendency to get very tetchy when he isn't feeling well or the other thing Ii was thinking was maybe it could be something to do with some of the medication he is on as he is on a high dose steroid. We have tried to reduce the steroid unsuccessfully every time I do this he seems to become poorly then we go back to square one. Well whatever the reason he cant be allowed to behave like that I have spoken to him as much as you can to a almost three year old and think he understands guess I will find out when i go and collect him after lunch so fingers crossed. At home he is always fighting with Olliver and does have a short temper but as I say he has never behaved as badly as this before normally he is just boisterous. We are waiting for the result of a cough swab so hopefully that will tell us something but in the meantime he is on treatment dose antibiotics which will fingers crossed do the trick. Any way that's it for now and I'll leave you with some photos of the boys at a wedding we went to recently looking very smart in their suit. Sorry it's the wrong way round I'm not sure how to change it!!

Sanity Has Been Restored

Well both boys have gone back to school and pre school, and all is very quiet and peaceful!! Charlie went back to pre school yesterday and Olliver went back today, much to his disappointment! He has informed me that he thinks they should have 6 months off school rather than 6 Weeks! We haven't done much over the last few days really just getting ready to go back to school and getting back into a bit of a routine. Olliver went to bed at 8pm last night but couldn't sleep so I think we should have started early nights last week although that's what we meant to do but didn't quite get round to it. On a different subject i decided to do my grocery shopping online to be delivered on Saturday by Sainsburys everything was fine the shopping came on time etc and i put it away then i checked the receipt which was lucky i had as i noticed that they had charged me £33 more than was originally estimated a few pounds I could understand but not that much, any way I went through it and discovered that they had charged me 19 times for a £1.70 stir fry!! They have now refunded it, I only checked the receipt at the last minute so I'm glad that I did. Then Monday morning after giving Charlie his meds I went to get dressed ready to take him to school I came back down stairs to find that he'd given the rubber off his spacer to the dog who was having great fun chewing it to bits!! Nightmare as I didn't have time to get to the doctor before pre school so I had to go and buy a spacer from the local chemist on the way to pre school which was £10. The good news is that I can get it refunded when I take the prescription in so I have to pick that up later today then drop it in and get my money back as £10 is a lot of money!! I'm hoping that the rain doesn't start again, I got soaked walking to school this morning it wasn't to bad walking there but walking back after i dropped them off it was absolutely pouring down. Well that's about all for now I'll catch up again soon, I had better go and catch up with some housework before I have to go and get Charlie.

Boring, boring boring

That was what Charlie said about the circus my sister took him to last week!! I couldn't believe it he loves clowns and things that make him laugh. Apparently after the clowns were on he wanted to go home but my sister persuaded him to stay for about an hour then had to leave. He did get his photo taken with the ring master which was very good I will post it when my mum emails it to me. Other than that he had a whale of a time on his holiday in Brighton with my family, he did lots of fun things went on the beach and to the park etc all the things he really likes doing. Funnily enough when we got to my mums on Saturday morning he looked sooo well much better than he has in a while. He had colour in his cheeks and the dark rings under his eyes had gone. Whether it was the sea air I don't know but he looked very well. He was very pleased to see us and got so excited especially when he saw Olliver he kept saying missed you Ollie which was very sweet Olliver grunted something back at him as at the moment Charlie is just a pest to him!! I was very glad to see him as i had missed him a lot, the break however was lovely and very much appreciated I'm very nervous about Charlie staying away because he needs a lot of care with his physio meds etc but my mum was fine with him and really enjoyed having him there for the week. Later that afternoon I took Olliver to go and see High School Musical at the theatre I think I enjoyed it more than he did. I was really getting into the songs singing and dancing in my seat!! I thought it was very good Ollie said he enjoyed it too so I was pleased about that. When that had finished we got picked up and dropped the boys round at my sisters house for the night she was having them whilst we went out for the evening. They were quite happy they had a McDonald's for tea and my mum had bought them a big bag of juice and sweets to take with them.

We went back to mums and got ready to go out we were going for a meal and then going on to a comedy club. We were all ready and waiting for mum as usual!! We got out and went for a meal which was delicious then about 10 pm we got a taxi to the comedy club. The comedians and the compare were so funny really good. We also met my other sister and her friend who came with us and we all had a really good laugh. We got home about 1.30am and fell into bed I had a really good night and was really able to relax. The next day we collected the boys and went out for lunch, we were supposed to be going home on Sunday but by the time we had got back it was getting on so we stayed at mums again got the boys ready for bed and we settled down to watch a film. We left Monday lunchtime got home and got a bit of food shopping then just watched TV had dinner and got the boys to bed for an early night although Charlie was up and down till about 11pm and still got up about 6 am. Since then we haven't done much just catching up in the house and getting back into a bit of a routine getting ready to go back to school next week. We're going shopping in a while to get new bags and lunch boxes so the boys are looking forward to that. Charlie has started sneezing this morning so i hope he's not coming down with anything. The only other bit of news is that I had a letter from his consultant on Friday it was a copy of the one she has sent to St Marys in London it had a lot of information on it about changes to his lungs and all sorts of things so I'm going to phone his nurse to see if she will come out and explain it to me as it did worry me a bit, I suppose it was seeing it all in black and white as on a daily basis you just get on with it but when you get a letter with a list of diagnosis as they call it it is very daunting. At the moment he seems well so fingers crossed it's going to stay that way for a while.

Quiet Days

This week has been very quiet so far as Charlie is having a holiday at his nanny's house in Brighton. I dropped him off at my mums on Sunday. We left Sunday morning then went and got a bit of shopping for some of his favorites juice etc. When we go back mum had made a lovely lunch a salad buffet which was very tasty. I bathed Charlie and did all his meds and physio then put him to bed he was upset for about 10 seconds that I was leaving him then he got settled into bed watching Bee Movie so was very happy which made it much easier for me to leave him. We left about 9pm and got home around 10.30 after dropping my sister home. I had to throw 7 pediasure chocolate drinks away this week as Charlie hates them so i picked up another 7 banana which he hates just as much so now i have a prescription pack for him which has 10 different flavours in so hopefully he will find one that he likes. He only has to have one a day just to keep his weight up as his weight and height are very good and we want it to stay that way but because his infections are getting more frequent and his appetite is the first thing to go we are giving these a try without much success so far!! Anyway the main reason he is at mums is so that i could go and get Olliver from my Grans in Scotland. I flew up on Monday afternoon and got there about 6.30 then spent the day there Tuesday and got a plane home early evening getting in about 7 pm. Olliver had a lovely time there and was spoilt rotten he's also had a break from Charlie as he is very demanding and needs a lot of care so Olliver often feels as though he is being left out which of course is not intentional. He was glad to get home though as he has been away for most of the holidays he spent time at my mums before we all went to Scotland. We've had a nice day today we lounged about this morning then while i was getting ready Ollie went out on his bike for a while then we went to Pizza Express for lunch which was very yummy he had a couple of bambinnochino's which are cappachinos without the coffee!! I had a hot chocolate to finish which was lovely considering i don't normally go for them.

Tomorrow Olliver wants to have a play day with his friends and go out on his bike and stuff so I'm going to get on with some painting while Charlies not here. Some of my paint work needs refreshing and i cant do it when he's here as the paint is too strong and makes him very chesty. Then on Friday we're going to see the new star wars film in the cinemas which i really am not looking forward to as i would rather stick pins in my eyes than watch a star wars film!!! But it's his week to be treated so hey ho! Saturday we're back to mums she is taking Ollie on an open top bus tour of Brighton then Olliver and I are going to watch High School Musical at the Brighton centre and then in the evening my sister is looking after both boys while we go out for a meal then onto a comedy club for a much needed laugh!! Now I'm going to go and get my oldest boy to bed if i can prize him off the PlayStation as he says he is playing the best game ever apparently and was told he was having a relatively early night 9pm. Wish me luck. The house is much too quiet with Charlie gone and I'm really missing him now though i am really enjoying the break and he is having a whale of a time i spoke to him earlier and he told me he's going to the circus tomorrow, which will make his week as he absolutely adores clowns and finds them hysterical. Any way that's it for now must go and get Ollie to bed.

Clinic Good and Bad

Thought i would update on whats been happening here this week. Monday was just spent doing boring houseworky things the usual washing cleaning etc etc!! Then the weekly food shop. Tuesday Charlie had the audiologist where he got on well his ears are healing well and he has no hearing loss which i was very pleased about. He has had a few very bad infections that have lead to him having perforated eardrums but as i say they are looking good at the moment. The audiologist said she would not rush into surgery as she thinks he will grow out of these infections and said in any case there is a high chance that the grommets could fall out then you would end up back at square one, which was contradictory to what the ENT specialist had said last month, but then again that happens a lot.

Wednesday we didn't do much at all as the weather was so bad we stayed in and i entertained Charlie with colouring and watching DVDs which was nice as we curled up on his bed a lot of the day watching his favorite at the moment Toy Story.
All in all it was a very lazy but nice day.

Thursday Charlie and i had the dentist which went well the only thing that she has said about Charlie is that she can see he grinds his teeth and that it may become a problem when he has his big teeth. We are hoping that by that time he will have grown out of that. I have to have a filling taken out and redone which i wasn't very happy about but i thought that was best done when i didn't have Charlie with me, as i could just imagine the havoc he would create while i was in the chair!! So I'm going back in September to have that done. After the dentist we were going to go to the park but the heavens opened and i thought it best that we walked straight home especially as we were both dressed for summer with sandals etc on. After we got home and dried off it was lunch time. We spent the rest of the day colouring and watching DVDs which is rather sedate for Charlie as he is More likely to be seen swinging from the lights or something equally as mad, he has a lot of energy!! It was then bath and bed and time for me to relax, although I'm missing Olliver a lot now as he is still in Scotland I'm flying up to collect him on Monday while Charlie stays with my mum then home Tuesday.

Today was charlies appointment with his consultant who I was so glad to see as she has been off since last November doing research everyone else has been great but i know and trust her a lot as she dealt with Olliver also. Although he has been well for the last four weeks that is normally the longest he is ever well for. We went through his history for the last few months whats happening the cough swab results the infections and the pneumonia and the fact that his immune system is still low when at his age it should be fully developed and she to;d me that she thinks his lowered immune system could be causing him more problems than originally thought so he is being referred to St Marys hospital in Paddington as they specialise in haematology and issues relating to it, so we now attend the Royal Brompton, St Marys and many different departments at our local hospital. She also is keen for him to have his tonsills out grommets in and nose cauterised as she feels there maybe a small chance that the bugs that are growing in his tonsills could possibly be traveling down to his lungs and maybe adding to his problems. On the other hand it may be having no effect at all but we wont know until it has been done so fingers crossed it will have some good effect. He hasn't got his next ENT referral until November and then if they decide to take them out he will have to go on the waiting list so goodness knows how long that will all take. In the mean time we have plenty of appointments to keep us going. I also asked about the amount of prophylactic antibiotics he is on but was told that he absolutely needs to be on these as the consequences of him not taking them could lead to much more severe infections that cannot be treated by adding extra oral antibiotics and would mean that every time he gets an infection he could end up in hospital which we really don't want. Anyway that's enough for now i have to go and make us a light tea as we went to pizza hut after the hospital for a treat and I'm still quite full up but charlie is demanding dinner!! Catch up again next week.

Holidays

A lot has happened since my last blog. Last weekend I had some family up from Brighton to build Charlie a new bed, as he only has a small box room it was ideal as now he has a full size bed and storage which is great. So we were very grateful for that, although things were rather hectic because we were going to Scotland the next day to visit my family. We set off later than planned at 11 am and had a smooth journey really it took about six hours or so with a couple of stops so we got there and had a lovely tea then we were all so tired it was an early night all round!!

Monday was spent making teddies at the Build A Bear Workshop. Ollie had a cuddly bear and dressed it in a suite with glasses!! Charlie had a dinosaur and choose a doctors outfit for him he called him Rex out of Rex from Toy Story so they were both happy with them. Tuesday the boys were taken out with family they went to a safari park and had a lovely time and we had a nice time in a village called Luss. We had lunch in a lovely restaurant then walked round and enjoyed the lovely scenery with my gran. The rest of the week was spent visiting family and catching up with people. We got home this afternoon minus Olliver who is staying for another week it gives him an opportunity to be spoiled and relax as Charlie has a big personality and needs a lot of attention with medication physio etc so it's good for Ollie to have some time for himself. Also next week is a really busy one for Charlie we have a hospital appointment on Friday with his consultant Tuesday he has the audiology clinic and Wednesday we both have the dentist in between I better catch up on the washing and ironing and a bit of food shopping so fun fun fun!!

I will try and add some photos of our holiday when i figure out how to put them on here i have some lovely ones of Luss i want to put up. That's it for now I'll catch up again later in the week, give an update on how Charlie gets on at hospital it will be his first check where he is relatively well after getting over the last bout of pneumonia.