Update

Alan had a clinic appointment today, and although he has still got this infection hanging over him, he has grown and put on weight he is on the 75th centile for his height he is now 124cm and he is on the 91st for his weight he is 28.2kg i am so pleased with him, he has worked hard at eating because lately he has had no appetite. His chest is a bit clearer than last week so hopefully the antibiotic is starting to work, he has to be re swabbed next week, although the physio did take one today.
He also got his flu jag and his swine flu jag yesterday, he was very brave but said the swine flu one was particularly sore, his arm is tender today.The nurse said he was very brave, he has to get another injection in 3 weeks.
I picked up our pantomime tickets today we are going to see Sleeping Beauty we are looking forward to it very much.

This is Alan and i having a wee cuddle when he was
not feeling so well.

Long time in posting... Sorry

It has been ages since i updated, Ijust dont know where the time goes.
I had Alan at the Dr again today, he has been suffering really badly from an infection that we just cant seem to move.The Dr has given him augmentin and a throat spray, to try and move it, to be honest I'm not hopeful. I think it is much deeper down and needs something stronger.
Alan in himself is plodding on, but this is getting him down, his cough is really wet and deep and sounds really bad, so his throat is also sore.
He was looking forward to Halloween, his daddy carved him a pumpkin which he loved.
He had a monkey costume but he really was not well enough to enjoy it.
On a brighter note, he has been doing really well with his school work, he got 9 out of 10 for his spelling, and managed to pass his level A maths, i am really proud of him.
Alan and I celebrated our 20th wedding anniversary too, we went away up to the highlands of Scotland the scenery was stunning, i have uploaded a few pics.
I promise it wont be so long to my next posting

Alan's Birthday

Gosh, i can hardly believe Alan is 7 today, this time 7years ago i was being prepared for surgery for a c-section, he was born at 10.15 in the morning. 7 years its so hard to believe! We have had some rough times with his health and we have had some bad times dealing with his illness but i wouldn't change him for a minute.He is a special, loving and kind boy and we are lucky to have him in our lives.We are having some people over later so i will update with some pictures later on.

Infection :(

We got a call from the hospital yesterday afternoon, to say Alan is growing haemophilis influenza bug again, they have started him on 2 weeks worth of augmentin antibiotic. He has had a runny nose and a cough for weeks and i had handed in sputum after sputum but nothing showed up in the last 2 then yesterday the nurse says its a heavy growth! I was really hoping to get through his birthday without this but we will manage, he has to be re swabbed the day after his birthday.

I was so down last night with this news. The doctor was say how good a job i was doing keeping him well, then this! But today I'm feeling stronger and know i do do a good job with him, this is something out with my control.

Life back at school

Alan has really settled back into life at school, he was having real trouble with going to the toilet and Vikki from postpals had suggested to me to ask the school about him using the teachers toilets so i did, the headmaster said to me he hadn't thought of it before but there was a disabled toilet that he could use, oh my what a different boy coming out of school, he has not been desperate for the toilet all week and what a difference this has made, So Vikki if u are reading this a huge almighty thank u for your suggestion.
Alan has also been doing a topic at school on Castles, oh it really has captured his imagination, we already take him and Amy to the castles in Scotland to explore and he is really interested in them, but at school they are learning about knights and battles around castles and life in the days of old. Every night he has his drawing pad out drawing castles and knights and writing stories about them, he also had a shoe box and made a castle out of it with Amy, he had it all glittery it was fab.
Its such a joy to see him so happy and enjoying school.He is looking forward to his birthday he is 7 on the 24th i can hardly believe he is 7 already where does the time go?

Just a note to say I'm thinking of all the people lost in the 9/11 atrocity's they will never be forgotten, it makes you realise how important family are and how short life can be .

Back to my own routine!

Alan and Amy are now back at school, the summer holidays are over! not that we have had summer weather it has been really woeful, the rain has been awful. Alan has settled back in at school and likes his new teacher, with the schools assistance we are working through the issues of taking tablets and at school he has real issues with going to the toilet so its challenging but we are trying hard to work through it.

I'm also waiting for the hospital to get back to me Alan has been struggling with a cough and sore nose for weeks we had handed in a swab but some how it got lost so i handed in a new one and the results should be back today at some point i hope.

I'm getting back to being in my own routine with the kids being at school although i do miss them, I'm catching up with things i didn't do with them being off.

Ive uploaded some pics of the kids going back to school.

Sorry for delay

Sorry for the delay in posting its been non stop with the kids being on holiday from school. Alan is much the same from the last post,still struggling with medicine and the having to take them.Emma our psychologist came out to the house and went through how Alan's body works and why he needs to take tablets, he seemed to enjoy listening to her and we came up with the idea of making a reward chart for him when he takes his medicine so my hubby has been busy making one, a army one, hopefully it will be finished today, i will post a pic next time i update, it is looking really smart, lets hope it works.

The kids are back to school on Monday and I'm hoping things get better for Alan, the school nurse was out yesterday going over his medical form so i made her aware of how Alan is feeling about things so she was going to a meeting with the headmaster so he is in the know of whats going on.We are also waiting on a swab result coming back,Alan's been suffering with a bug for the last 2 weeks, he had a course if antibiotics so we will see if its clear although I'm not hopeful he is still coughing really badly, I'm hoping we will find out today.

Relief

I sighed a sigh of relief yesterday when the phone rang, it was Emma the psychologist i was so glad to hear her voice, i ran through all that has been happening with Alan and she said to me that if i wanted she would come out to the house and we could go over all Alan's meds. Make it fun about how they work and why he needs to take them and explain to him in a way that makes sense to him to make him feel a bit better about himself, i was delighted to accept the offer so she is coming out on Tuesday, they will open up Creon and she will explain how all the wee bits inside work, he will enjoy doing that because he loves knowing how things operate hes always asking about how things are made. He in himself is still very much the same about everything, hes still sad and emotional about his life. CF is a horrible disease and i had prepared myself for him being ill, having to take medicine and some days not feeling well but never did i see this coming so early or at all if I'm honest but Emma assures me its good he is telling us how he feels and not keeping it bottled up which i would hate the though of him doing that, so roll on Tuesday to see if we can work some of the issues out.

Much the same.

Alan has been much the same from my last post still feeling really down and sad about 'His Life'
this is really tearing me apart seeing my beautiful boy like this, wanting to be in his words normal. We have really tried to make Alan's life exciting and full of new and wonderful things and have never ever treated him differently, although I'm a little over protective but what ever has brought this on, its not nice.We have a psychologist that helps us when problems arise so i have rang her but still waiting on her getting back to me.We also got a call yesterday to say Alan had an infection which requires a two week course of antibiotics which i must say couldn't have came at a worse time, another med to fit in to all the other he is not happy about taking, Just as we got the call a parcel from Kim came and when he opened it he really cheered up and i did explain he is special and not just us care about him that other people do too and that made him feel good.He sat for a while and then asked me, does Callum get parcels and cards from people, i said not from postpals only extra special people do and you are one of them, My husband said to me that was a good thing to say it seemed to make his day so here's hoping we can beat the blues he has at the moment.

Lost for Words

The last few days i have been wondering what to say for the best. Alan has been very very down asking me all the time why he is not normal and that he doesn't want to do his nebulisers and take his medicine. It is really upsetting me. We have been chatting about it and i try to explain how important it is to take his meds to keep him well, and healthy but he says he wants to be a normal boy, i say you are a normal boy and a very special boy to us all,but nothing i say seems to be helping. Does anyone out there have any tips on what to say to him? i will try anything

Our Trip

We had a fab time at Disneyland Paris, we met the characters and had a go on all the rides, Alan is a adrenaline junkie and he is only 6! It was well worth the saving of our money to go because Alan was so happy and really enjoyed himself, we all did.We ate with the Disney characters one night and it was really really good, they were so nice with the children and had loads of time for them.

Holiday

We are getting all set for our holiday, we are off to Disneyland Paris for a week, we leave on Wednesday, we are all really looking forward to it, especially Alan, he has been counting down for a week now!
He stops tomorrow for his summer holidays he is off for 6 weeks and is looking forward to doing lots of nice day trips away to castles and to the safari park.
He is a little sniffy at the moment i really hope that it doesn't come to anything especially when we are going away. He has saved up his pocket money for a few months so we are going to go tomorrow and change it into euros, I'm in no doubt he will find things to spend it on in Paris, i will post some pictures as soon as we get back.

Sad Day

We were at a funeral today, Alan's cousins son passed away.He was only 16 he died on his 16th birthday.He bravely fought cancer for 2 years but lost his fight. It was so sad i really felt for his mum and dad and his twin sister who was brave enough to do a poem at the service.

If i had one wish, only one, i would wish that we never ever need to go through that, i cant even imagine losing any of my children and struggle with the life expectancy of cf, just find it awfully difficult to understand why?

So sorry this is a down post, i haven't said to Alan how Ive been feeling about all of this, i had been doing ok but this has just thrown me into turmoil.

Thanks for taking the time to read this xx

Theave Castle Visit

We went out a drive today since the weather was so nice, We became members of Historic Scotland that gives you access to all the castles and museums , we saw Theave castle in the book and thought we would give it a go it was our first visit.It is situated near Dumfries. near the borders of Scotland.To get to the castle you had to take a boat ride over to it, when we arrived over we were given a quiz to do on the way round, Amy and Alan had lots of fun trying to find the answers, and had a great time exploring the castle, here are some pics from our adventure

Edinburgh Castle

We went on a day trip to Edinburgh Castle today, we had a wonderful time and there were lots to see. With it being the Queens birthday there was a 21 gun salute, it was really noisy and Alan held his ears. While we were walking up to the castle there was a man dressed as a knight pretending to be a statue and when Alan walked past he touched him with his sword he got a real fright but took it in good fun. Also William Wallace was in the royal mile and he got his sword out and let Alan hold it and get his picture taken. Alan loves historical sites so this one was right up his street.We also popped in to the bank museum, where we got to see all the old money, and new and we got to see 1 million pounds in 20 pound notes!! They also had a safe with chocolate coins in it and if you cracked the code you got the loot, Amy and Alan and a little help from their daddy managed to get the coins. Here are a few pics.

Alan's Sports Day

Following my last post, Alan had a swab taken, he has been feeling not to good,he has been coughing really badly and i had called the cf nurse who got the doc to see him, sent a swab to the lab and its a haemophilis bug he has which they are treating with augmentin and he is feeling a bit better already, still really productive with mucus but feeling a lot better.
He went to sports day, he really didn't want to miss it. I went to watch him run he tried his best, he never won any races but he was still upbeat that he had got to take part in the day.I had walked round to see him and i heard an almighty scream, he had been carrying his chair back into class and never saw the kerb and fell off it, his mouth catching the back of the chair,it cut all his gum it was bleeding quite badly and managed to knock out one of his baby teeth, he got such a fright at the site of all the blood and so did i.The teacher asked me to come in with him so i managed to reassure him while the first aider got a ice pack, he was really good and coped with it really well, everyone was asking what had happened to him which he didn't like.
The tooth fairy came and left him a penny which he put in his bank for holiday, we go in 3 weeks now we are all so excited! Also in his spelling test he got 10 out of 10 this week, he was over the moon!

Spoke to Soon!!

I had been updating Alan's postpals page and was saying how well he was doing this month, did i not just speak 2 soon! He was quite grumpy yesterday but i thought it was the heat but he was really restless overnight and woke this morning with a spiking temperature and could not breathe properly i phoned the cf nurse, she rang me back and said the doc would see him, so we went up she examined him and says she thinks its a viral infection she gave him augmentin till his swab results come back.So we are now cuddled up on the sofa watching tv.

Alan's School Trip

Alan went on his school trip to the lifeboats he got to find out what lifeboats do and also got to sit on the boat in the water, he got to sit in the drivers seat and had a really good time. It has really captured his imagination and has been chatting about it since. He is really interested in History and planets and anything to do with Egypt for someone at 6 he asks a lot of interesting questions.
We got his report card on Friday, it is really good and made my heart burst with pride, he is trying his best and that's all i can ask of him.The teacher wrote that he respects others and is sensitive to their feelings and that makes me really happy because he is caring in the house so its nice to know he is like that at school.
The weather here this weekend had been really hot, so nice to see Alan is his shorts and t shirt enjoying the sun, long may this weather continue.

Spa Day

My sister and i were at a spa day today it was really fab, we had a aromatherapy massage, a facial, eyebrows waxed our nails done and our hairs done, It was totally relaxing and i feel the benefit if having it,My wonderful husband encouraged me to go for it and paid for it for me too, I'm so lucky. I'm now having a relaxing day snuggling up with Alan to watch tv with him since i was away this morning, most likely be Ben 10 or Hannah Montana, he really likes them both.

A Weekly update

Sorry Ive bombarded 3 posts in the space of a day but this week has been so hectic, I had the hospital myself this week Ive had some pain in my face legs and hands and the Dr referred me to the neurologist so we went to see him, he examined me and i have peripheral neuropathy caused they think by me being diabetic, what it means is the nerves endings in my body are damaged and not communicating with my brain causing tingling and a burning feeling and weakness in my arms and legs, i will just muddle on, no option Alan needs me to be there to do all his meds and things.

Amy also had the orthodontist this week and she has to be put to sleep to have 5 teeth taken out mostly baby ones and one in her gum that is growing the wrong way its lying along her gum so needs to be taken out.

We also had hospital with Alan, he has grown and put on weight and is eating well at present, he is looking well at present but has a bit of a wheeze, well actually its more like he is finding it hard to get a big deep breath which frustrates him and makes him panic sometimes. He also had a port flush which he was very good about and was brave getting the needle in

Apart from all this Ive just been catching up with washing and ironing and cleaning a woman's work is never done. Hopefully on Sunday we are going to the sea life centre so will post some pics if we go.

Amy's London Trip

Amy had a great time on her trip to London with the school they visited London Eye, A boat trip on the Thames, the theatre to see wicked. and a visit to the was museum, the trip was a educational one for History but when they were there they got to see some of the sites

Pics

Here as promised are some pics of Palma; The top 4 are of the cathedral and the other few are of Alan and I

Our Weekend Away

we had a really great time in Palma the weather was a very hot 28 degrees, it was so lovely to have time to ourselves, we went to the cathedral in Palma what a beautiful place it was amazing. It was so nice to eat out and not have to cook and just completely relax it was fab. I missed Alan but feel its done us the world of good. Alan also had a great time at his aunts he really enjoyed himself he went to the park, chose what they had for dinner and basically was spoiled rotten, Amy also loved London, they went to see Wicked at the theatre, went on the London eye, a boat trip on the Thames, and a visit to the imperial war museum i will post pics really soon .All my worry was for nothing it all went really smoothly .

Awake all night

I could not sleep last night, my mind has been racing all night, with getting bags packed, worrying if I've done the right thing going away for the weekend, getting Amy organised for London, packing Alan's bag my mind is in overload. I just hope it will all be ok.
Dropped Amy off at 6 this morning .she was so excited and looking forward to her trip, wee Alan is still sleeping so will go for now and get him up and organised for school will blog later with how all our trips went.

Julie Singleton (Jewels_S) on Twitter

Julie Singleton (Jewels_S) on Twitter

Nikki

Nikki arrived back at just after 11 and when she opened the door i knew it was bad news, she was really upset and angry at herself for not passing, it really brought back memories when i sat mine it took me 3 times to pass and i was sure the last time i wouldn't pass but did. Nikki hit the kerb, something she never does and that's whats made her angry, we just told her nerves play a big part on the day and now shes done it once she knows what to expect. She will pick herself up and we will book a retest on Tuesday for the next few weeks.The examiner on a Saturday, she says is really nice so she wants a Saturday again to see if she can do it next time.
Although shes 18 you just wish you could do it for her and help her out, if only it was that easy!

Driving test

My Eldest daughter Nikki has just left the house to sit her driving test, she was very nervous and worried, i actually feel sick! I want her to pass so much.I just wish i could do it for her. Its at 10.15 so will blog latter with the results of it. Fingers crossed she passes!

More School Holidays!!

Our kids are off on holiday AGAIN they stopped on Wednesday and are off till Tuesday.I think there are too many holidays.Alan was just settling back in to the routine and then more holidays, he was grumpy being back at school and was very tired.
I am hoping the weather will pick up and we can get out , the weather here is awful rain, rain, and more rain!
We have decided when Amy is in London next weekend, and Alan is at his aunts we are going to go away and recharge our batteries and i do feel a little guilty having time off but i do feel i need a break and have been thinking that Alan must need one too.He is so excited about going and looking forward to it.

Strange Weekend

Our weekend has been really quiet and that is very unusual Amy was at a sleepover at her friends it was her birthday and 4 of them stayed, i dropped her off at half 6 last night and picked her up at 1 today. Wee Alan was staying at his Aunts, he never stays away, i could count in one hand how many times he has stayed out, i dropped him off at 3 yesterday and i picked him back up just after i got Amy. What a weird weekend only having Nikki in the house and she was working till 5. We were going out for dinner and Nikki came too, i thought she might have been going out, but it was really nice to have time with her too, she always seems to be busy. Alan and i had been talking about going away for a weekend, i must say I'm a little worried about even thinking about it, i have never left Alan, there has never been a day i haven't seen him, but i really think Alan wants to do it. We are married 20 years this year and we have never been away together alone, he thinks we deserve it. Amy is in London next weekend with school and Alan's aunt said she would look after Alan so i know i need not worry but Ive decided to sleep on my decision and make it tomorrow.

Parents Night

We had parents night for Alan tonight, we had a chance to look at his work, see all his drawings and art work and a chat with the teacher to see how he is doing.I have to say that i came out bursting with pride.She says he is doing really well and it coping with all the work and making excellent progress, she also said that he is a very well liked boy and has lots of friends, she says he is loyal, helpful and a pleasure to have in her class. I feel really happy he has settled in so well at school, and enjoys it and is doing well, especially with the hospital appointments and the bugs he has had i feel his achievement is great.There was a book fair there tonight so because he did so well we went to buy him a book, we chose Lets Explore Dinosaurs, it has a book, plaster of Paris and moulds of dinosaurs,and a dino model to build so over the weekend we will have fun making all the models up.

Tears

Alan started back school yesterday after the Easter break, he was quite happy to be going back to see his friends. Around half 2 the school rang to say Alan wasn't feeling well, could i pick him up so i got in the car really worried and went to get him.He was a little pale and had been coughing but when i saw him i just knew there were more to it than just him feeling not well.He came home and cuddled up on the sofa with his love quilt, and was really quiet. I asked him if he wanted something to eat and he said yes so i made him a baked potato with cheese his favourite, he then said he felt a little better could he have a bounce on his trampoline.So when he was out i spoke to Alan about it he says he would have a chat to him. He got really upset and said he didn't want to go to school, my heart sank i hate when he is upset, Alan asked him what was wrong, he went on to say that someone in his class was shouting at him, his ears are so sensitive as it is, and that the boy he was sitting beside was talking to him when he was doing his work and he didn't want to tell the teacher incase the boy got into trouble.He is so thoughtful and i really admire that in his,its a lovely quality. Anyway, Alan went on to tell him that i would go in today and see his teacher and tell her what had happened.So this morning i took him in and started to tell her, Alan burst into tears but she calmed him down and told him not to worry she would sort it. I asked her if there were any problems to call me, Alan asked me to go out for lunch, i looked at my phone about 50 times i was so uptight worrying if he was ok, but when we picked him up he was his old self he says the teacher has sorted it out and he promises he will either tell us first or go to his teacher if he is worried about anything again. I really hope he does because it upsets me deeply when he is unhappy

Alans Cake baking

I do a lot of baking for the kids i find it a good way of getting calories into Alan without having to try too hard and with somethings that he enjoys, i normally let him help me with small jobs but he has been asking could he make cakes, measure all the ingredients and do the mixing so i agreed and we set to work here are the pics of Alans masterpieces which he was so proud of and really enjoyed eating

Our Visit to the Kelvingrove

We went to the Kelvingrove, which is an art gallery in Glasgow that has exhibitions of all sort of things on, there are animals, Egyptian exhibits which Alan found fascinating, there are also skeletons on dinosaurs, we saw a valoceraptor, Alan loves dinosaurs and when he saw it he was amazed, he has loved all things to do with them for as long as can remember. We also saw the Dr Who tardis here was a exhibition on Dr Who too but it was fully booked today so we never got see it although we said we would take Alan again.

After leaving there we went to the park across the road from the gallery where we had a ice cream and Amy and Alan had a go on the slide and they climbed the frame.All in all we had a great day and we all enjoyed ourselves its so nice to see the kids having fun.

Here are some pics of our day.