My life As A Mum of 2 Extra Special Boys

Must get better at this!!

2010-03-20T09:37:00.000-07:00

It's been a really really long time since I last blogged but so much has happened I thought I'd blog and get it all off my chest!!
Well the end of 2009 was quite pants with Charlie being in and out of hospital and Olliver having a while host of problems. Charlie got home from hospital Christmas week after going into have his port a cath fitted and having to stay in for a week after the doctors discovering he had a nasty ear infection and some chest noise. He had the two usual I.V antibiotics and they seemed to do the trick. So we were allowed home to prepare for xmas which we did and thankfully it was a good one with no hospital admissions or anything unforeseen!!!
Olliver has had a lot of health problems of late and has recently been diagnosed with hyper mobility syndrome for which he has physio weekly and exercises to do at home daily. Auditory processing disorder which I'm still trying to fully understand and have become increasingly frustrated at his schools lack of help for him regarding this and also a possible immunodeficiency for which tests are still ongoing. Although obviously all this has come as a blow the fact that he possibly has a diagnosis in the immunodeficiency for all his ongoing problems has come as a strange kind of relief, because hopefully now he can have the correct treatment for this, which will in turn help a lot of his recurrent problems.
So that was how 2009 ended. This year has so far been a busy one as normal but not all due to the constant rounds of hospitals visits etc. I have started volunteering in a pre school with a view to working there part time come September. I have been really enjoying it and so far it seems to be going well. Strangely enough it was me who suggested doing the job voluntary as I was very unsure if I would be able to manage it with everything else I have to do regards the boys. I went for the interview as normal and explained my situation then a few days later they called to offer me the job and I've been doing it since. I really enjoy it and it takes me away from the endless round of illness hospitals treatment etc and gives me something for myself so I really hope I'm able to continue. I have two days a week free and have so far been managing to fit all appointments into those so fingers crossed.
Charlie this year so far has not been to bad he is still on his host of daily medications including twice daily chest physiotherapy and three weekly plasma infusions. He even managed to beat an ear infection a couple of weeks ago with just some strong oral antibiotics no i.v's required so we were over the moon about that. Now we're concentrating on getting him prepared for reception class in September and fighting to ensure funding is secured before he starts to enable him to have the support he needs. I will fight tooth and nail for this if necessary as I feel if Charlie starts school without the appropriate support this will do more harm than good and could set him back further. We want the transition to be as smooth as possible as he has enough disruption in his life dealing with his illness etc and pre school has been one of the main stables in it so it will be hard for him whatever we do. H e is aware he will be starting a new school and is worried partly because he wont be at the same school as his brother and partly due to the fact he's so worried about coming out of nappies and having to use the toilet at school. Charlie is still in nappies in part due to the volume of medication he is on and his illness in general but also because of his slight developmental delay. I hope he will be in pants soon during the day and we're working really hard on this. Anyway that's all I've got time for at the moment but I'm going to try and update this regularly because regardless of whether or not any one reads it I find it very therapeutic!! I will update the rest of our news soon

2009-04-15T01:35:00.000-07:00

Been so long since i updated as so much has happened. Charlie has been in and out of hospital a lot lately with various infections. Most recently was last week, he had a nasty cough and didn't really seem himself so I took him to the ward and they said he had reduced air entry into the bottom of the right lung. At first we thought it was pneumonia but his chest x ray didn't really show much so they then decided it was a plug of infected muccas that was causing the problem. So he was admitted and had four days of I.V antibiotics and intensive physiotherapy to try and move the blockage. When he got discharged he had more air entry but i still didn't and don't feel happy about him. He still has a nasty cough and is complaining of his ear hurting so we are off to the GP today and see what he thinks. I also spoke to the Brompton yesterday and it was decided that they are going to bring his appointment forward by a month so they can see whats going on. Normally when he gets discharged he is a lot better and I'm happy with him but this time I'm not at all happy with him. Whilst he was in there he missed a trip to go and see Mickey Mouse's magic show so he was very disappointed as he loves Mickey and was really looking forward to going. I had booked the tickets a couple of weeks before and felt so bad for him when he was unable to go.

He had a review with his immunologist last month and it has been decided that they will increase his plasma infusions to two weekly and also increase the dose because it seems as though the infections he is getting are always the week his infusion is due then it has to be put off because he's ill and then it's a vicious circle. Fingers crossed that will help. I was very keen on Charlie having a port fitted so that all of his medication etc could be done through that but whilst they agree he does need one the risk of infection in Charlie is to high because his body puts up no fight against infections we have to be very careful so they are not going to consider it until his vein access becomes almost impossible.

Olliver has been ok he's not been too happy lately as he is having to be shipped off to family and friends a lot when ever Charlie gets taken into hospital so he has been very unsettled. He has been staying with my mum in Brighton over the easter holidays so hopefully he has had a chance to relax as all the upheaval really does affect him.

I think that's about it for now I'm going to get ready for taking Charlie to the doctors now, I will update soon to let you know what going on.

Tonsills and Infections!

2009-02-15T12:46:00.000-08:00

Charlie had his tonsills adenoids out and grommets put in on the 5th of Feb and all seemed really well. He had a high dose of oral antibiotics for 4 days before the operation then had it done on the Thursday morning. It went really well and a couple of hours later he was eating toast and drinking we were thrilled that everything had gone so well and he was discharged the following day with more oral antibiotics for 7 days to try and avoid any problems. He was doing really well until Wednesday when his temperature went up a bit and his breath had a horrible smell. I phoned the ward who told me to bring him in to be assessed. Charlie has what they call a green card which means he gets seen straight away without having to wait etc due to how quickly his health can deteriorate. He is treated on the same protocol as the oncology kids as if he were neautropenic so is seen as a matter of urgency. Anyway we got there and he was examines straight away and I was told that he had an infection in his throat were his tonsills had been removed, he also had a large ulcer covering the back of his throat as well. He was immediately put on I.V antibiotics gentamycin and piptobactam which luckily seemed to do the trick and we came home on Friday. I am seriously going to discuss him having a port inserted in more detail with his consultant at the next visit as his needle phobia is severe and even if he only has I.V antibiotics 5 times a year it's going to make it much less stressful for him and will make things much easier while he has i.v plasma infusions. He's still not 100% well but does seem a lot better. He was sick yesterday and didn't seem too well I had visions of him ending up back in hospital but he perked up. He's not keen on eating as it is still sore i think and if you ask him how he's feeling he says not better!! Bless him, he has got more colour in him though so fingers crossed. Olliver is fine and has just got back from his weekend away with cubs and had a great time I've just finished washing his smelly muddy clothes and trainers!! He's in bed now after a nice soak in the bath and is exhausted so a good nights sleep is on the cards i think! Tomorrow I'm going to take him into town for some lunch whilst a friend looks after Charlie just so that we can spend some time together as charlie has obviously taken up a lot of my time lately. That's about it for now hopefully things will run smoothly for a while and Charlie will get better. He has his infusion on Tuesday but I'm not sure if he will be able to have it I will have to ring them on Monday. That's it for now i will update when I have some more news.

2009-01-31T02:56:00.000-08:00

Long time no blog

2009-01-31T01:44:00.000-08:00

Happy new year to everyone and sorry for the big delay in blogging. Things have been really crazy here the last few months. Firstly Charlie went for his first plasma infusion at the beginning of December. We got there and the doctor came to see us and was going through all the relevant information with me and i was signing all the consent forms whilst the nurses were doing all his obs etc. I could see out the corner of my eye them exchanging looks with each other but then they called the consultant away to speak to her. She came back and told me that his temperature was 38.7 I was really shocked because for once he seemed well. I said it must have been because he had been running around and playing, hey agreed to take it again 15 mins later. They took it again and it had gone even higher and within a short space of time he became very unwell looking. We were put in isolation and Charlie had a cannula put in for I.V antibiotics, they also tested his urine and he was dehydrated as well and needed fluids which I was very surprised to hear as he had been eating and drinking normally. Then it was time for a chest x ray which showed showed shadowing at the left bottom lobe. He was started on Gentamycin and cefuroxine i.v antibiotics. He continued to look unwell for a couple of days then picked up nicely he had a few drops in his sats although not major and were sorted with some extra inhalers. So in the end we were there for around 5 nights then he was ready to come home on extra oral antibiotics and looked much much better. His infusion was arranged for the following week. He had it done the week after and it all went fine.

We then concentrated on getting ready for Xmas until Charlie came down with a stomach bug which caused sickness and a very upset tummy. He took a couple of days to get over that and was then ok. We had a nice christmas and the boys enjoyed all their presents. We were very touched at the amount of presents that were received from Postpals, Charlie opened a couple just before xmas as he was feeling very poorly and seemed to have lost a bit of that spirit that has got him through a lot. The difference it made to him was lovely it really does put a smile on his face whether it be a card letter or present it gives him something to look forward to. You really don't realise the how kind people are until you get involved with something like that. So thank you very much to all the elves and reindeer's for everything. Just after new year Olliver became unwell. He had a annoying tickly cough for a few weeks but I really didn't think much of it as everyone had, had a cough cold etc but on the 3rd of Jan he woke up and was upset as he felt quite poorly which is unlike him, he then started to wheeze so I took him down to A and E where they told us he had pneumonia. I felt so guilty that i hadn't bought him sooner and felt that because my attention had been so much on Charlie that I had kind of let Olliver drift to the side lines. Which of course is not true and after a good cry down the phone to my mum i realised this, I did still feel guilty though. I had to then take him back to the doctors twice more for different antibiotics as it wasn't clearing up. He then had an appointment with his consultant who said his lungs still had signs of infection and put him on yet more antibiotics and steroids. He also had blood tests done to check his full blood count and blood tests to check for the immune disorder that Charlie has. I am very pleased to say he has not got this disorder and I am so relieved about it. He ended up having three weeks off school and is only going back properly on Monday he did go back for a few days but then came down with a cold, as he had only just got over the pneumonia I was advised to keep him home to try and avoid him becoming worse or the cold going to his chest. The doctor told me this has been the worst winter for illness in 8 years.

Charlie was supposed to have his tonsills out and grommets fitted on the 12th of Jan but due to all that was going on with Olliver we put it off and he is now due to have it done on Thursday 5th feb. However he has just got over tonsillitis and a water infection requiring 10 days of strong antibiotics. Which meant his plasma infusion had to be put off and he only had it done on Tuesday. It all went really well apart from his vein gave out and the infusion leaked into the tissue which caused him to have a reaction which then meant the cannula had to be resited which was a bit of an ordeal but all was done in the end. When he got home from school on Thursday he started vomiting and this continued until 6.30 am on Friday, he had a temperature of just over 38 so I was worried another infection was on it's way but he seems to have recovered from it touch wood. I spoke with his consultant yesterday on the phone who is not sure whether to go ahead with the operation yet, she said to go for his pre op on Monday then ring her on Tuesday and depending on how he is we will decide what to do. He has to have 24 hrs of I.V antibiotics before had to try and prevent any king of infection and he obviously needs his own cubicle to avoid any infection being passed to or from him, so we'll see what happens with that. He has also had a C.T scan which although showed some small changes to his lungs it didn't show anything like what they expected so that is very good, especially as he hasn't had a normal looking chest xray since last April.

The only other thing that's happened is that he is going to be assessed for a statement of special educational needs. His behaviour has become very bad and at times he is unmanageable he is always on the go and is often a danger to himself he seems to have no fear at all. He is very aggressive at times towards myself and his brother and blows his fuse at the slightest thing. I am having no luck with getting him out of nappies which I know in the grand scheme of things is no big deal and to a point I think he does have a right to be angry at the world but this is over and above that. This is something that I have known for a while but his pre school leader confirmed it on Thursday morning when i spoke with her. She thing he will really benefit from having one 2 one care at school and that a statement is the best thing for him. He will also have his behaviour assessed and we will see what they say from that. He has missed a lot of time off from being ill appointments etc, so that all has an impact on him. Although he has met most of his milestones easily there are other issues that need addressing so he can have the best start possible. His consultant thinks that this is a very good idea and says that many children who need a statement etc don't get one so whilst we are being given the help to grab it with both hands.

Well I think that's about it for now. I am going to try and post some photos of xmas later but I'm not very good at that sort of stuff so there may be a few upside down ones!!! Happy new year to every one and sorry for the delay in blogging.

Change of plan

2008-11-27T05:18:00.000-08:00

Well things have all changed again for Charlie he had a confirmed diagnosis yesterday of combined immune disorder this is a primary immune deficiency it means he has low levels of antibodies and he doesn't respond to vaccines as healthy children would so he is still at risk of childhood diseases eg measles etc even though he has been vaccinated against them. It also means he is very at risk of infection as we are already aware from all the infections he has been getting and also infections from cuts etc if he falls over. He also has stomach problems which they have told us are related to the immune disorder. He has just got over pneumonia and a double ear infection and now his cough is back and he is growing the bug moraxella cattahralis so is on an increased dose of oral antibiotics and has also had a stronger antibiotic added in to try and give him a boost. He will be starting immunoglobulin replacement therapy next week at st Marys hospital this is the plasma which is taken from blood and is then refined and treated so as it doesn't contain any viruses etc. It is an extremely expensive treatment to be given and needs 1500 people to give blood to obtain one treatment dose of infusion. So we are all hoping this really helps and the immunologist and infectious diseases doctors at st Marys really think it is going to help him so please keep everything crossed. His blood tests he had done have shown deficiencies throughout the whole immune system rather than just one part of it. He also needs another c.t scan as from the last x ray his lungs look rather bad like that of a t.b sufferer i was told yesterday but this is hopefully not a true picture of them so we have to wait until after he has started treatment and is much better then the c.t scan will be repeated to try and see the true damage that has been caused to them. As I say he will begin the infusions next week and then will have a protocol and all the other bits and pieces he needs to try and give him the best care possible.

We got taken up to the ward where he will be and were going to meet the specialist immunology nurse she was at a bone marrow transplant meeting so unfortunately we were unable to. They are going to fit him in on a quiet day next week so we will be able to meet all the team and go through everything, ask any questions we want answered and just get to know how it all works etc. The doctors i saw yesterday were all very nice and did their best to explain to me what was the matter with charlie and why it was caused etc they drew diagrams and everything and they gave me a very quick science lesson on the immune system and also said that there is so much of it that they don't yet understand. There were three consultants all telling me things in a very short time so it was a little overwhelming. Anyway after we had finished there and had been given a tour of the ward and got his medication from the paediatric pharmacy it was time to get the train home and go straight to our local hospital for an ENT appointment where they were deciding whether or not to take his tonsills and adenoids out and put grommets in so he has gone on the list for that and it should be done by the end of January so hopefully that should make a difference as well. That's really about all the news i have at the moment everyone else is fine just worrying over Charlie I will blog again after Charlie has had his first infusion and we know how he's reacted to it.

Getting better

2008-11-16T14:16:00.000-08:00

It seems like ages since i updated. Charlies blood results came back and they showed that his immune system was still low so it was decided that he would be referred to G.O.S.H to start his immunogloblin i.v infusions as they have a better home care team than ST Marys which would mean that eventually I could learn how to do the infusions at home. So I was glad that something looked to be getting sorted and we decided to go down to Brighton to visit my mum. Charlie wasn't to great but nothing out of the ordinary. In the evening we went out for a meal with my mum and my sister looked after the boys, half way through i got a call from her saying he wasn't to good and that he had a temperature so i told her we'd come back but she said to finish the meal and that she would give him calpol and inhalers and see how he went, i did feel a bit uneasy but decided to stay anyway. Then 10 minutes after i had finished speaking to her she phoned back saying that his breathing was not good so i quickly got a taxi back and phoned the emergency doctors who said they wanted to see him and not to wait in the reception but to go straight in. We went in and she done his oxygen levels which were 94% so not to bad but he usually has around 96 to 98% even with all his problems. They decides to admit him to the children's hospital and after a thorough examination and speaking with a doctor from the royal brompton who knew charlie they thought it best to keep him in and start i.v antibiotics gentamycin and ceftazadine . As we were only staying at my mums for the night i only had one spare change of clothes so i was in a panic but my mum said not to worry and she would go out in the morning and get us some bits and bobs. The next morning we saw the doctor again who said they wanted to give him a good few days of oral antibiotics as he had only just finished a course of cipro which we thought had done the trick but obviously it had only dampened down what was there and once that had been stopped even with his prophylactic antibiotics it had come back. So we were in there for the whole of half term we came out on the Thursday and came home on the Friday which was Halloween. Charlie had a rough time in there and I think that was one of the worst infections that he's had. At one point his o2 dropped to 86% so he was on oxygen and had to have 7 nebulisers one after the other then they managed to reduce it to one every hour then so on till he was going four hourly and could tolerate his inhalers without his oxygen dropping, he also became dehydrated and had to have i.v fluids for a couple of days until he felt like drinking again. Whilst he was in i called his doctor from st Marys and told him what was going on etc and he told me that he was going to chase up G.O.S.H and get them to start the immunogloblin i.v's asap due to his infections lasting longer and becoming more severe. I then got a call on the fri day i got home saying he had an appointment with the immunologist on the 21st of November but that he would have his first infusion before that and it was just a case of waiting for a day bed. I was really pleased to hear all that as the doc at st Marys seems to think that after a couple of infusions he will be a different boy as the infections will be much less. They then phoned on Monday to tell me they had a bed for Thursday and to be there for 10 am so they could start the infusion as it took a while and that they also wanted to do some bloods before he saw the immuno on the 21st that was fine we arrived on the the Thursday and got shown to our room etc then the doctor came to see us and told us he wouldn't be having the infusion today and that was not the plan the plan was for him to be examined and then have bloods done. I wasn't to happy as we had gone all the way into London just to have bloods taken and charlie really wasn't up to being trailed all the way there on trains etc with people coughing and spluttering for a 10 minute appointment to have blood taken. She then examined him and said he had a double ear infection and one of his drums had perforated and some of it was missing due to the repeated infections so the sooner we get the grommets in the better for him i think. So all in all the whole day was a complete cock up!! He has his appointment with the immuno on friday so i really hope they have a plan for him and at least trial the immunoglblin therapy as we thought was the original plan!! Anyway i think that is about it i will update when i know for sure whats happening with charlie. Olliver and i are fine and the boys have a lovely treat they have got tickets from postpals to see Santa at Harrods so that will be a lovely day for them and other than that we will just be getting ready for christmas i always put my decs up on the 1st of December so there looking forward to that too. Olliver wants an x box 360 and charlie wants the big dinosaur that's advertised on tele you sit on it and it walks and everything so I've got that but didn't quite realise how big it and think by the time both boys have their toys on christmas day there isn't going to be any room left for us!! Any way that's it for now as I'm really tired and I'll update when i know more about whats happening with charlie.

Another day another appointment

2008-10-15T14:22:00.000-07:00

Well today we were at St Marys in Paddington to have Charlie's bloods done I also had to have mine done as a control factor apparently. Charlie was really good and he didn't even notice that they were taking his blood as he was to busy blowing bubbles with the play specialist so that was good. They even sprayed my hand with the cold spray so that I didn't feel it either!! We should hopefully have all the results back in 10 days time then his consultant is going to call me with a plan as to when he is to start the plasma infusions at Great Ormand Street hospital and what dose etc that he has to have. We are really really keeping our fingers crossed that what his consultant said about after Charlie has been on these infusions for a couple of months that he should be a different boy and the infections he gets should be much further apart and much less severe. As Charlie's lungs are starting to show damage from all the infections he is getting he has streaking and thickening of the bronchial wall which we never knew until last Thursday when they did another chest x-ray because his consultant was concerned with the sound of his chest. We have also found out a little more about the plasma infusions we have been told today that the infusions will take roughly about 4 hour depending on how much plasma has to go through and how he reacts to it etc etc. They put it in just through a drip as they would a blood transfusion or fluids so that isn't to great as I was under the impression it was just going to be a quick thing like maybe an injection or something every so often and that would be it, so I really had my eyes opened today and realised it was very different to how I thought it was going to be. But as long as it's going to help Charlie then it's fine by me as we really are running out of options in keeping him well as nothing seems to be working. Like the chest infection he has at present he was put on Cipro again last Thursday and started taking it Friday as we couldn't get it before then but he only has another 3 days left of it and he really doesn't seem that much better I'm really hoping that he picks up in the next few days as this does seem to of hit him very hard he's not sleeping well eating well or anything, he has also lost a bit of weight not loads but enough so that you can notice it. Ollivers been fine getting on well at school etc even with all the chaos going on around him!! Well that's about it for now I will blog again when I know more about whats happening with Great Ormand Street etc.

Poorly boy

2008-10-11T00:37:00.001-07:00

Well where do i start, things seem to have been quite hectic lately. As I said in my previous post charlie had been unwell he finished all his extra antibiotics and did seem a lot better cough cleared up temp was down and so he went back to pre school. Then Monday I took him he was fine when I dropped him off but when I went back to collect him he had a very runny nose and watery eyes. Great but I did only think it was a normal cold so we increased his prophylactic augmentin to treatment dose but as the week has gone on he got a bit worse then by Wednesday he was very breathless with a very chesty cough dark eyes and very irritable. So Thursday he was seen at ST Marys hospital in Paddington first he had the usual done he was weighed and measured then we got taken through into another area and waited for the doctor to see us. Charlie is not very good at being at hospital or waiting to see anyone so he wasn't the best behaved and was actually very hard work. When it was time to see the doctor we went in and he gave Charlie some pens and paper to draw with as he kept interrupting us and we kept forgetting what we were talking about!! The main reason for being there was because he is having problems with his immune system it is low and you only so much as have to look at him in the wrong way and he is growing a bug on a swab or has some kind of infection. Anyway we were told that his immune system is not normal and that the his lymph nodes in his neck and under his arms were raised, he then listened to his chest as he said he sounded chesty with a chesty cough. He couldn't hear anything but wanted him to do for an x ray as he said he was concerned about him. We got all the forms and took him down there while we were waiting for him to be called he again managed to create havoc! While my back was turned for a second he grabbed his brothers can of drink and tipped it up all over a chair, I was so embarrassed I apologised and offered to clear it up but they said not to worry! Anyway he had the x ray then we went back up to have blood tests and skin prick tests the skin prick tests showed no reaction to anything as was expected the only slight reaction he had was to a type of mould aspergillas. Then it was time to go back to the doctor he looked at the xray and said that Charlie has a right sided middle lobe lung infection with streaking he also said that there is a bit of scarring in his lungs from previous infections which we have never been told before. So he has another 10 days of Cipro and hopefully that will do the trick again. I am worried about him though as i think this is the worst he has been since he had pneumonia in April, he's very breathless and has a nasty cough again he says he hates going to bed because it makes him cough, I've propped him up more with pillows to see if that helps hopefully. His mew consultant at ST Marys says he is 99% sure he has an immune disorder and has sent off the bloods etc to check he is due to have a meeting about him at great ormand street hospital and has said he would like to start plasma infusions once a week there and then after a while they will show me how to do it at home when i feel ready as there was a lot to take in. He is pretty certain that after two months of these infusions he will be a different boy as his immune system picks up and he is more able to fight off infection. He also said that when he does get an infection he needs to be treated much more aggressively and for a longer period of time to what is normally done otherwise we are going to start having big problem's with damage to his lungs etc.

On a brighter note it was his birthday yesterday he went to school in the morning as he really wanted to give out his sweets that we had bought and i also had to collect some of the replies to his party that i still never had. After i had dropped him off i went to help in Ollivers school tuck shop then i came home and cleared up a bit then went to collect Charlie as i didn't really want to leave him to long. We got home and he played with some of his new toys his favorites are buzz woody and Jessie from the film toy story, some of my friends then came round to wish him a happy birthday. One of them had brought her niece with her so charlie was very happy to play with her while we all chatted and arranged our girls Christmas outing!! I think charlie had a good day despite not feeling great, he has got his party on Sunday at a local soft ball area sp i hope he is well enough, it would be horrible if he was unable to run around and enjoy himself. Olliver is doing well he has low iron levels at present so is on a supplement for the next three months then they will retest his blood and fingers crossed it will be back to normal. I think that's about all for now i really need to go and have a shower and clear up as we have flu jabs this morning although i am unsure if they will do charlies due to the fact he is unwell.

Time for an update

2008-09-20T07:07:00.000-07:00

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

2008-09-11T04:00:00.000-07:00

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

2008-09-02T01:43:00.000-07:00

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

2008-08-27T01:05:00.000-07:00

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

2008-08-20T12:58:00.000-07:00

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

2008-08-15T08:49:00.000-07:00

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

2008-08-10T21:38:00.000-07:00

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

2008-08-01T03:27:00.000-07:00

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!