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.

Me and my Boys

Hi I'm Emma mum of two boys Olliver and Charlie thought i would do this blog to vent and to well just get things off my chest really! I'm a stay at home mum as charlie has undiagnosed health problems at present he is treated using the cystic fibrosis protocol. In case you don't know cystic fibrosis is the uk's most common life threatening inherited disease, each week 5 baby's are born with this and 3 young lives are lost. The reason charlie has not got a concrete diagnosis is due to the fact that he has had no faulty gene yet detected, but there are a lot of these genes around and many that have not yet been discovered. Anyway the way charlie is affected by his illness is he gets recurrent chest infections as in one every 4 weeks at the moment, he has a lowered immune system he suffers from nose bleeds has severe reflux has problems absorbing vitamins has to have a high calorie diet to keep his weight up as when he has an infection his appetite is the first thing that goes and he grows recurrent bugs in his lungs which lead to infections. In any one day he has 2 lots of chest physio each session lasting 20 mins this helps to loosen the thick secretions that are in his lungs to enable him to cough or in charlies case sick them up!! He takes a multivitamin 2 different antibiotics 3 inhalers 2 tablets one powder medication that is put straight onto his tongue and a liquid to help move the food out of his stomach quicker if he has an infection he would also take an extra antibiotic. At the moment he is well he has just got over a bout of pneumonia his second one in a few months and his last cough swab is clear, so good news there. so as you can see things a quite hectic in our house! He attends hospital every 6 weeks and we have a fantastic community nurse and physio should we need advice about anything before hand. Charlie is 2 coming up 3 and ollie is 8, 9 after Xmas. Ollie is not without his problems he suffers from aortic valve stenosis asthma and chronic lung damage due to both his lungs collapsing as a baby and only one re inflating properly. Although he had a rocky start he keeps very well now (touching lots of wood!) he only attends hospital once every 6 months and is only on a bit of medication so is doing very well. Hope that was a good intro and i haven't bored anyone too much! I will blog more when i have more to tell you!