Our Fight With C.F

Clinic Visit

2012-01-19T02:16:00.000-08:00

We had hospital last, for the start of Alan's annual review. He had his bloods taken and they arranged for him to go to the lab for a lung function test, to the x-ray department for a x-ray and scans of his abdomen, liver and portal system which are happening on the 1st February. He is also going to have 2 weeks of introvenus antibiotics starting on Monday. We are trained to do them at home, and although they are very tiring doing them it means we do not have to stay in hospital. Alan has been off school with a sickness bug and is just not quite himself, so, the IVs will hopefully help make him feel a lot better. I do worry at this time of year when its Alan's review time, i am hoping for good news in March when we see the specialist from Glasgow to get the results.

First Day Back

2012-01-09T13:34:00.000-08:00

Alan's first day back didn't get off to a good start, We got a call around 12 to say he was not feeling well. Alan went to get him and he looked ghastly, he was pale and gaunt.He had some calpol and he lay up on the sofa and slept for a while. He woke around 3 and was really burning up, he had a glass of water and just lay and watched TV. I made him tuna pasta for tea and he did manage to eat it, so hopefully he is on the mend. We have the cystic fibrosis clinic tomorrow at 10, Alan has his annual review. He will get his bloods taken tomorrow so I'm hoping he will feel better for that. I will blog tomorrow to let you all know.

Happy New Year

2012-01-08T11:21:00.000-08:00

Happy new year firstly, i am hoping 2012 is a good year for us. I always wonder as we start a new year what it will bring, firstly health wise for Alan and what the year beholds for us. Hopefully Amy will be starting university in September, so that is something to look forward to. She has sent off to 5 universities for nursing, and one for music, so hopefully her results will be rewarded and she will get in. She is also starting driving lessons so she may pass her test this year too.

Alan and Amy are back at school tomorrow after the new year. Alan is also back at work, so i will be on my own for a little while. I'm going to the gym in the morning for an enrolment so that will pass some of my morning. Then i am meeting my sister for a little bit, we will have a bite of lunch and a catch up.

I am also writing another blog on weight loss, I'm still trying very hard, hence the reason why i am going for the gym induction, I'm trying to tone up too. here's the link if you want a look...
http://jewelsweightloss.blogspot.com/

Christmas

2011-12-26T13:47:00.001-08:00

We had a very quiet Christmas. Alan had asked for a BMX bike and a guitar. He also really wanted a 3ds but wasn't sure If Santa could bring all of these gifts. He managed, because he had been the best bravest boy all year to get all the big things he wanted.. He was over the moon. I don't think I have seen him so excited it was lovely to see.. Hope everyone had a lovely Christmas xx

Birthday boy

2011-09-30T07:00:00.000-07:00

Alan celebrated his 9th birthday on Saturday, i can hardly believe he is 9 time has flown past. He asked for a mobile phone, which he got and Moshi monster figures. We had a great day with him. He is doing OK at the moment, he had a infection but got 2 weeks of oral antibiotics for it so it seems to have helped him. He is due to have IVs at the end of October so hopefully he will stay well to then. Alan's dad is away fishing for the weekend so its only him and i here, we are going to go shopping tomorrow to spend some of his birthday money. I am also starting a new open uni course tomorrow, its a level 2, exploring psychology. I'm really looking forward to it. I did a level 1 psychology and managed to get a really good pass so hopefully i will can cope with this one!

Another day the same

2011-07-31T14:39:00.000-07:00

Today has been much the same as yesterday, Wee Alan is no better today, in fact he has more spots today on his legs, back and face. He has no appetite at all and has hardly ate anything today or yesterday. He was up at 4 this morning with a very sore tummy. My poor baby is having such a hard time at the moment. If he is no better tomorrow i will ask the hospital to have a look at him.

Chicken pox

2011-07-30T05:57:00.000-07:00

Alan woke up yesterday morning covered in spots. I had a look at them and thought it was chicken pox so i called the hospital only to find out no one was there till Monday. I then called the GP, he saw Alan at 4.20 yesterday and confirmed it was indeed chicken pox. We left there and came home, he wasn't keen is starting Alan on anything, although i knew that anyone with cf and diabetes should have a antiviral med, well at our hospital anyway. I could not settle so last night at 7 i rang the ward, they were so nice, the Dr organised a prescription and we got the meds for Alan. He is still the same today , it has floored him, hes tired and has a sore throat, he has spots EVERYWHERE. As i write this he is sound asleep and that is sooo not like him during the day. He is having IVs at the moment too so i really feel for him he has a lot to cope with at the moment.

Alans update

2011-07-28T07:02:00.000-07:00

Hi everyone, Alan is doing ok at the moment his line went in yesterday and is having 2 weeks of ivs. His tummy for the first few days is always sore, so we are just taking it easy. He is enjoying being on his school holidays especially when he is having ivs. We went ten pin bowling yesterday Alan and i, we had a good time, wee Alan won by 47 points im not to good, then we went to the hospital to get his port accessed. He did really well and was very brave.

2011-07-17T09:47:00.000-07:00

If you have time to check out my own blog only about me, please feel free xxx
jewelsweightloss.blogspot.com

Insulin

2011-02-11T07:32:00.000-08:00

I don't know what has happened but Alan is really struggling doing his insulin again, after months of doing it no problem he is now finding it impossible to do the injections. He gets very tearful and upset, saying he wants to do it but cant.. Any tips would be gratefully received :-)

Scans

2011-01-31T02:20:00.000-08:00

Alan is in the process of having his annual review. He has had his bloods taken when we were at clinic 2 weeks ago. He went on Friday to have a x-ray and an abdominal scan, he did very well getting it done, he is brave. He has to go next week for a lung function test and a walking test, I'm not so hopeful he will do well in the walking test as his legs are sore most of the time. The results will be available to us at our appointment in March where we see the specialist from Glasgow, where they make the plan for Alan's treatment for the next year. So fingers crossed we get a good result.

Our pastime

2011-01-24T06:13:00.000-08:00

Alan and I has been looking at an animal webcam in a place we visit in the summertime, its a safari park, they have a baby Rhino at the moment that you can look in on anytime which we do on a daily basis
Here is the link if you want to have a look.
http://www.blairdrummond.com/animal-webcams.html

Alan was at his aunts at the weekend, she got a rescue dog that Alan went to help choose, he loves spending time with her, she is called Holly. It gave Big Alan and I time to go our and have some quality time together which i enjoyed very much. I am in a happy place in my head just now and I'm loving feeling so positive looooong may it continue.

New Year

2011-01-20T01:39:00.000-08:00

Long time, no blog.. I just don't know where the time has went.

Alan is keeping well at the moment with just the problems with his legs causing him problems but is coping well. He is now doing his insulin everyday himself now with no difficulties, which is lovely to see.
I made a decision in September to do some studying and took the route of studying with the open university so i could be at home with Alan and study in my own time. I have just completed an opening course called Starting with Psychology, i loved every minute of it. I'm currently doing Discovering psychology which is a longer course and i am finding it challenging but loving it. I feel its given me another focus rather than sitting worrying about things i cant change, all i can do is continue to do my best to keep Alan well.
Amy has also been nominated for North Ayrshire's young musician of the year, we are soooo proud of her, she plays the clarinet and keyboard.
Will post again soon.... that's a promise.

Alans Dream come true

2010-08-31T05:53:00.000-07:00

Alan was lucky enough to be chosen by This Morning Tv show to have a dream come true.It was all a huge surprise to him, he knew nothing about it. Him and I flew down to London, we stayed in a hotel overnight and Alison Hammond from this morning came in the morning to surprise him.He was so shocked. She told him that i had told her he loved army, she then asked him if he would like to go up in a helicopter and then go to drive tanks, you can imagine how excited he was. It was such a great day, he was made feel so special and with everything he has to deal with it was just what he needed.

We were at hospital on Thursday having 2 ct scans with Alan, they discovered that his spine is out of alignment at the top so before any surgery can be done they needed to do the ct scans, he was really brave it did look uncomfortable as he had to lie with his head tilted backwards and one tilted forward. Results should be available next week sometime.

He also has managed to do his insulin himself which was a massive step for him, he and i was so pleased im really proud of him.

So sorry for the delay in a update its been neverending lately, Alan has just finished 2 weeks worth of iv's so that has made him feel a little better.

I have also taken a huge leap and have signed up for a open university course, something i never thought i would be able to do, im doing a psychology course and if im honest im proud of myself, ive came a long way since the start of the year.

Alans Fishing Trip

2010-07-02T01:15:00.000-07:00

Alan took Wee Alan fishing for the first time on Saturday he really enjoyed it, he never caught any fish but wants to go again to try to catch one.
Alan learned him to cast out his line and he can so it really well now. We took a little picnic with us and made a day of it. Here's a few pics of him.

The pic at the top is one of the strawberries we have been growing, first time we have ever grown anything.
Alan has enjoyed picking and eating them, i love the pic of him with the first strawberry he looks so cheeky in it.

Prize Giving

2010-06-26T06:06:00.000-07:00

Alan was lucky enough to win a prize at prize giving yesterday. He won the citizenship award. His head teacher said he is a inspiration to everyone he meets, that includes us.He endures so much, never complains and is a true fighter.

I have been reading that Connor aged 7 lost his fight with CF, I feel so very sad for the family , it must be the worse thing. Doing everything in your power to keep your child as well as possible, and sitting watching , not being able to do a solitary thing to stop what is happening. Oh how awful. Alan is my world, my miracle ,the most precious gift we were lucky enough to be entrusted with.Thinking about it for a minute, a second, is unbearable so please give a thought to Connor and his family. Breathe Easy Connor xx

Safari Park

2010-06-24T06:41:00.000-07:00

We had a day out to the safari park on Saturday it was so nice to leave our troubles at home for the day. I really enjoyed our day out.Wee Alan had a brilliant time, he loves animals.He was on 24hr sugar glucose monitoring for a few days so it was a good distraction to take his mind off the needle in his tummy. He was having it checked to find out about insulin amounts being right. Here are some pics from our day.

Feelings

2010-06-11T01:44:00.000-07:00

The psychologist came out to see us on Monday. She seemed mighty shocked with the news we had received. She made me feel a lot better about myself and told me that i HAVE to give my self time to come to terms with this information and that it is completely normal to be in shock.I had been beating myself up because i couldn't get it out my mind, if I'm truthful its still there all the time but at least I'm not beating myself up about it. I told her that i was terrified, that i didn't want to let Alan out my site. She said i have to try and be normal with Alan not to show him this is anything to worry about.This is SO hard, i feel like bursting into tears when i look at him.
Alan is off work today so we are having some tome together we are going out for a bit of lunch, I'm looking forward to it very much.

Pictures

2010-06-07T23:07:00.000-07:00

I could not sleep last night, and i was looking through some pictures, i thought i would share these few with you. Alans smile melts my heart, he looks soooo happy in these pics.
We are having a visit from the psycologist this afternoon, so im hoping it will make me feel a little better about everything. I have been thinking about all of this ALL the time day and night, but it is much worse at night when i cant sleep, i feel my mind is so busy and wont or cant switch off, everytime i look at Alan i feel my eyes welling up and feel so sad, but these pics made me smile and they melted my heart, i just love it when he smiles.

Thank you to everyone who is keeping us in their thoughts it really means a lot to me. xx

Feeling Low

2010-06-06T14:41:00.000-07:00

This weekend has been such a hard one. I'm struggling to come to terms with the news from the neurologist, i am in complete shock. Alan already copes with so much and now this latest blow. The Dr explained it all to him so he is aware he needs surgery and for a 7 year old that must be scary. I'm a grown up and I'm scared. I want to wrap him up and take all this away but unfortunately it is so out of my control.

Keep us in your thoughts, it means so much to me.

Alans Mri scan results

2010-06-05T11:51:00.000-07:00

Firstly i would like to update you on Alan's surgery, his operation was a success, and he slowly recovered from it, with him being put to sleep with Gas because they could not get a vein in his hand or arm, it irritated his lungs a lot and he had a awful cough, he had 2 weeks worth of IVS to try and keep any bugs at bay and he will have that every 3 months now.

They have also put him on the brown steroid inhaler as a preventer he has been very wheezy lately .

Now i updated last month that we were waiting on MRI results, we got a call a few weeks ago to ask me to go up to hospital they wanted to talk to me, they told me that they had found fluid at the back of his brain and a mass at the top of his nick, they could not see properly so they needed to do a scan of Al ans spine, what a two weeks it was we had surgery one week and the scan the following and obviously we were worried out our minds. We went for the scan but they did not say a thing, only that the results would be available in a few days.Alan was so so brave it took 2hrs to do the scan and he had to lie very still. We waited a week and no news, so last Friday i could not take the wait anymore, i rang the hospital, our nurse called Yorkhill and they said the results were available but the neurologist had not looked at it, so she was emailing him, Monday was the bank holiday so there was nothing but on tuesday the hospital rang to ask if we could go up on Friday the 3rd, so of course we agreed.

We went and the neurologist told us that alan had a chiari 1 malformation, with a Syrinx.

This means for Alan, that the part that joins his brain and spinal column has a malformation and part of his brain is through the hole, the part that controls his movement, it is so tight that it has formed a syrinx, which is a build up of fluid on his spinal cord, they are referring him to a specialist hospital in glasgow for him to have surgery on his brain and spinal cord, we are shocked and are very very worried, The headaches he has been having is a sign of this condition, but if they dont do the operation it could leave alan paralysed and we do not want that at all.He already has more than enough to deal with and now all this.

He said to me last night he is sick of hospitals, but there is nothing i can do to stop this

Please keep him in your thoughts.

Alan's IV'S

2010-05-11T07:51:00.000-07:00

What a week we have had with worry. We saw the psychologist on Friday so she has helped us to try and deal with the stress we are feeling, I'm not really sure if its working for me. I cant seem to sleep that well Alan is on my mind all the time.

York hill called on Friday to ask if Alan could come to see the professor on Friday but he is having surgery on Thursday and they were not so keen. So we have to wait till a week on Friday which is the 21st May at 9.45, they are injecting a liquid into him during the scan so they can see whats going on, our Dr says it shows up all his blood vessels and things, they never done anything like that the last time. This is causing me to worry even more, i just want it to be over and want to know what we are dealing with.

Alan has been coughing a lot over the last few days, his throat is sore and his nose is too.

We were at hospital today, and they put Alan's line in, we also discussed Alan's operation which is happening on Thursday, I'm a little apprehensive about his having a general anesthetic but i know he needs to have this done. i thought i would let you see just how much medicine it takes for 2 weeks worth of IV'S to keep Alan well, when you see it all sitting out its a fair amount.

Alans Results

2010-05-05T08:25:00.001-07:00

We got a call yesterday for us to go up to the hospital today after we dropped alan off at school. Dr wanted to discuss alans MRI scan results.

My husband was working today and i said its ok i will be ok myself.BIG MISTAKE! The Dr and nurse were waiting for me, they took me to a room and the nurse asked if i wanted a cup of tea, that itself set alarm bells ringing.

They told me the mri, showed up some fluid at the back part of his brain, and a mass at the top of his spine but the mri stopped there and they dont know what it is or at least they are not saying. we have to see the neurologist in Glasgow and another mri of his head and spine. Im out my mind with worry.

He is also having 2 weeks of IVS starting on Tuesday and his operation is on thursday.

For now its a waiting game till the hospital get back to us.

Sickness Bug

2010-05-03T04:15:00.000-07:00

Alan went to bed on Thursday night he was complaining of a sore tummy, so i gave him some calpol and he very quickly fell asleep.I was awoken at 11.45 with Alan shouting, i ran through and he had been sick absolutely everywhere. I got Big Alan up to was him down and i got to work in stripping his bed and cleaning up the mess.He was sooo upset. We took him in beside us and he managed to dose off, but it was not for long at all. He jumped shouting he was going to be sick, he ran to the toilet this time. That went on all night the poor wee soul.
In the morning the sickness had stopped but he still felt really sick. With him being diabetic now and us having to check his sugars when he is eating i was beginning to panic because he was not eating and his sugars were really high.I rang the ward and the nurse told me not to panic because when a diabetic is ill their sugars can still be high, so that put my mind at ease a bit.
He lay in my bed all day just taking sips of water, but by the Saturday he was beginning to feel a good bit better thank goodness.

We are having a try at growing some fruit and veg in our garden we have strawberries in and pea pods, Alan is very keen. He has his own watering can and his special pair of gloves. Its lovely to see him doing something a little different that he is so enjoying.

More Bad News

2010-04-22T04:56:00.000-07:00

We got a call from Alan's doctor yesterday to tell us Alan has developed cf relates diabetes, and he requires insulin to control it. Just when you think nothing else can go wrong! Alan has had such a run of bad luck lately and this is such a big setback to him, the poor wee mite. Alan seems to take things in his stride but last night he was upset at the thought of having to inject himself and if I'm totally truthful I'm struggling with it all too.
On a plus side postpals have been a godsend to us, Alan has received so much lovely letters and that makes him feel special and loved so to everyone who sends to Alan you have my heartfelt thanks and gratitude.

Scan

2010-04-20T01:52:00.000-07:00

Alan had his MRI scan, he was a superstar! He was very brave, he took his DVD with him and got to watch it whilst he was inside the machine.The machine was very noisy indeed Big Alan and i both got in with him and we got to sit at the top of the machine so he could see us in a little mirror. Results will be available in 2 weeks time so we will have to wait and see.
When we got out the hospital we took Alan to toys r us he got a remote control robot who he called Robbie. He loves it. It has an alarm on it if you walk past it is makes a siren noise shouts intruder, intruder Alan is so impressed. He has it set up at his bedroom door so if his sisters go past it goes off!

We also received a letter yesterday. Alan's surgery on his bottom for his prolapse is happening on the 13Th May, so its not so long to wait. Here's hoping it all goes well. I get so worried when he is having a general anesthetic but i will put a brave face on so he does not worry.

Easter

2010-04-06T12:57:00.000-07:00

We had a really quiet Easter, the kids had a great day and made up the crafts they were sent from postpals. we had a very quiet bank holiday, unfortunately Alan was working, so it was me and the kids we went to the coffee shop in town and had lunch which was really nice.
I have been monitoring Alan's sugars over the weekend, they have been extremely high 14.2 being the highest, so the nurse was out today and he has to have another glucose tolerance test.
We also got a call today from yorkhill hospital to ask if Alan can go for a ct scan tomorrow at 3 so we are going there tomorrow for that, hopefully they will have some answers from it, then his MRI scan on the 17th.
I will post tomorrow and update.

Alans MRI scans

2010-03-31T15:16:00.000-07:00

I got a call from the specialist yesterday to say Alan's MRI scans have been arranged for the 17th April at 10.20 am. Not long to wait now. I really wish it was here as i want to know whats going on inside my baby's body. They told me he can either take a DVD or a CD to watch or listen to whilst he is in the machine. He is not one bit scared, he takes everything in his stride and not very much worries him.
He got 10/10 this week again in his spelling. Isn't he just a clever little man!

I got to talk to the psychologist this week so i do feel a bit better in my mind about things, i have had a little wobble today its been 5 years today since we found out the devastating news that Alan had cf, our lives changed forever. But Alan has brought great joy into our life. He brightens my darkest days and I'm so lucky to have him.

My Week

2010-03-19T13:43:00.000-07:00

I have had a very difficult week this week, trying to come to terms with everything we have been told from the specialist last week. Every time i look at Alan i feel like crying i just cant bare the pain. We are still waiting to hear from the hospital for his MRI scans, still no word, or on his operations so this week has been stressful, i am also waiting on the psychologist calling to arrange a meeting to talk over all this with her. Alan my husband deals with things so differently from me, he just does not want to think or talk about this so i feel very lonely and have to keep my feelings in as he does not want to talk about it. CF sucks. 21years in October i am married and we used to talk about everything but anything to do with cf we just cant talk, its just too hard. I do feel lonely sometimes, as if no one understands me :(

Alan has had a good week at school, he has had 10/10 5 weeks in a row in his spelling test, he blew me away today when i picked him up i never expected him to get 10/10 this week his words were so difficult, he has autumn, and astronaut and August were in his words this week., but no, he managed them all. I'm a very proud mum.Well done Alan xxx

Mothers Day Poem

2010-03-14T05:55:00.000-07:00

More Than A Mother

When God set the world in place,when He hung the stars up in space,when He made the land and the sea,then He made you and me. He sat back and saw all that was good,He saw things to be as they should.Just one more blessing He had in store;He created a mother, but whatever for?He knew a mother would have a special place to shine His reflection on her child's face.A mother will walk the extra mile just to see her children smile.She'll work her fingers to the bone to make a house into a home.A mother is there to teach and guide,a mother will stay right by your side.She'll be there through your pain and strife,she'll stay constant in your life.A mother will lend a helping hand until you have the strength to stand.She'll pick you up when you are down,when you need a friend she'll stick around.A mother is one who listens well,will keep her word; will never tell.A mother never pokes or pries but stands quietly by your side,giving you the strength you need,encouraging you to succeed.A mother is one who can be strong when you need someone to lean on.You're more than a mother to me;a reflection of Him in your face I see,a love that knows no boundaries.I'm glad that you chose to be all this and more to me.You share a love that knows no end,you're more than my mother,you are my friend.

Specialist visit

2010-03-10T01:17:00.000-08:00

Alan had the specialist yesterday from the hospital in Glasgow to review his annual review results and i have to say it came as a huge shock to me and I'm finding it very difficult to come to terms with. As you all know every month really I'm telling you that Alan has some sort of infection and our own hospital have always thought that it is upper respiratory infections and they have given him antibiotics to combat them but yesterday the consultant hit us with the bombshell that Alan's lungs have significant changes since last year, i can hardly believe it. They score them out of 25 for the condition of their lungs and Alan only scored 15, he is only 7 so that is not a good score at all. I'm gutted. They also are sending him for a MRI scan to have a detailed look at his lungs and sinus system, they are putting him to sleep to deep wash all his sinuses to try to prevent infections or to wash out any bugs that are lurking. He has also been referred to the optromitist, he has been having double vision and headaches and not seeing his work very well, he had his eyes tested and its not his eyes so they are investigating that. He went to see the surgeon last week due to the fact he is having a rectal prolapse almost every time he goes to the toilet, so the surgeon in the next few weeks are going to try to repair it or if necessary remove a bit of his bowel to stop this happening. He suffered from it before and they repaired it, but until they actually have a look they wont know. Its been a very stressful start to the year.

Hospital Visit

2010-03-02T11:42:00.000-08:00

We had our appointment today with the surgeon. Alan needs another operation :( He has been having the prolapses way too long, so they have decided to try to repair his prolapse or remove a piece of his bowel but we wont know until they actually look inside.
Alan is feeling a little apprehensive and to be honest i am too. I really know it needs done and that he will feel better once it is done but him having a general anesthetic scares me, really frightens me but i am trying to remain positive for his sake.
We got a letter home today to say Alan had passed his level A English. I am so pleased and proud of him.
I am having lunch with my sister tomorrow and i am so looking forward to it, having a few hours just to relax and chat.Its been a stressful few weeks.

A quiet week

2010-02-28T12:46:00.000-08:00

We have had quite a quiet week. Alan has managed a full week of school, the only problem he has been having is still his toilet troubles.We are seeing the surgeon on Tuesday so hopefully we will have a bit of news then.
Alan got a new helicopter play set on Friday, he got 10 out of 10 on his spelling he has been doing so well with his words.He came out on Friday so happy he had managed to get them all correct.One of his words woodpecker, i think for a 7 year old that is a difficult word but happily he managed it.
Amy is busy practising for her practical music exam on Monday she has to play six pieces all together so she has been going over it, i really hope she can hold her nerve she gets so worried about exams. Infact the word exam is enough!
I will post Tuesday to update Alan's news at the hospital.

Letter

2010-02-18T13:10:00.000-08:00

We received a letter from the hospital today for Alan, when it fell on the mat and i saw the hospital stamp my heart sank. I knew exactly what it was for. Alan has to see the surgeon on the 2nd March for the operation he requires on his bowel, to resolve the problem of the rectal prolapses he has been having. I'm so worried. I absolutely dread Alan getting surgery, my mind runs away with me. I know he needs it done as lately he has been in real pain going to the toilet and that is not good. He is a little worried himself but I'm glad he can talk to me about it. Hopefully it will be really soon when he has the operation to take away some of my babies pain.
Cystic Fibrosis really gets to me sometimes, I get up everyday and i just get on with what needs done with Alan but when you get mail like today it sometimes really gets to me and i have to admit I'm struggling with my feelings tonight.

Our New Kitten.

2010-02-14T13:36:00.001-08:00

We had been looking after a wee stray cat, that sadly passed away in December,Alan missed her very much, infact we all did. So we decided to buy a new little kitten, he was 6 weeks when we got him. We have named him Harley, he is sooooo cheeky but very very cute and fluffy.

Our Hospital Visit

2010-02-10T01:34:00.000-08:00

Alan got his line taken out yesterday, his 2 weeks of IV'S are finished and it has made him feel a lot better in himself. He got his results from his glucose tolerance test and his levels are a little high, they have to be monitored for a month to see what the results are, He also has been having rectal prolapses again so the Dr has referred him to the surgeon to repair it again, last time we saw the surgeon he said that a part of his bowel would need to be taken out so we are just waiting on an appointment to come through.It seems to be one thing after another for Alan poor wee soul , but although looking at him i can see in his eyes he gets down, when you ask him he never ever complains he is a little star and i am so proud of him. He got a new Star Wars toy yesterday for being so brave he loves star wars at the moment.

What a Start to the New Year

2010-02-04T05:31:00.000-08:00

Our year ended with Alan not feeling so well, in fact since November Alan has been fighting an infection. At the beginning of January we went to hospital for Alan's annual review, he had been very tired and pale. The Dr had a look at him and he saw the physio, the Dr said they would try him with a new antibiotic to try and clear his infection which when he was on it seemed to help him a bit, but as soon as he came off it he was as bad as ever again.Alan was saying to me oh mum i just don't know why i feel like this he has never been so tired, so i rang them again and we took him up, they looked at him again and decided he needed iv's so he is currently having them at the moment, the physio in the hospital is doing a good job trying to get his lungs cleared.
he also has been having problems with his bowels, he has been having rectal prolapses all the time, they have already operated twice on him for this, but we are just waiting on word for them to see him again to see the plan, but we all know a operation will be needed.
He also has had to have a test for diabetes they think he is diabetic his sugar levels are too high , he had to have a cannula put in 8 times they tried because his veins are so bad. He was the bravest boy, we are still waiting on the results.

What a start to the year, here's hoping it gets better.
Although we have been helped immensely with the people from postpals they have been so kind to Alan and always can put a smile on his face no matter what and for that i am soooooo grateful .

Update

2009-11-10T09:42:00.000-08:00

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

2009-11-03T02:40:00.000-08:00

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

2009-09-24T01:32:00.000-07:00

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 :(

2009-09-12T05:29:00.000-07:00

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

2009-09-11T02:26:00.000-07:00

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!

2009-08-30T22:54:00.000-07:00

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

2009-08-10T23:03:00.000-07:00

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

2009-07-23T22:55:00.000-07:00

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.

2009-07-21T06:20:00.000-07:00

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

2009-07-16T23:00:00.000-07:00

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

2009-07-10T10:23:00.000-07:00

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

2009-06-29T15:22:00.000-07:00

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

2009-06-19T12:36:00.000-07:00

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

2009-06-14T14:01:00.000-07:00

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

2009-06-13T14:43:00.000-07:00

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

2009-06-10T09:45:00.000-07:00

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!!

2009-06-04T04:38:00.000-07:00

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

2009-06-01T01:12:00.000-07:00

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

2009-05-23T06:25:00.000-07:00

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

2009-05-22T06:36:00.001-07:00

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

2009-05-22T06:16:00.000-07:00

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

2009-05-22T06:02:00.000-07:00

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

2009-05-15T02:16:00.000-07:00

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

2009-05-07T23:24:00.000-07:00

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

2009-05-04T11:36:00.000-07:00

Julie Singleton (Jewels_S) on Twitter

Nikki

2009-05-02T06:27:00.000-07:00

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

2009-05-02T01:16:00.000-07:00

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!!

2009-05-01T02:18:00.000-07:00

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

2009-04-26T15:12:00.000-07:00

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

2009-04-23T14:02:00.000-07:00

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

2009-04-21T12:55:00.000-07:00

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

2009-04-20T14:57:00.000-07:00

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

2009-04-18T12:20:00.000-07:00

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.

A bike ride

2009-04-16T04:38:00.000-07:00

On Easter sunday we went out a walk to walk off some of the chocolate, Amy and Alan went on there bikes, Alan slept all night after his cycling must have really tired him out.

Easter Pictures

2009-04-16T04:28:00.000-07:00

Here are some of Alan's Easter pics

Kim from Postpals was kind enough to send Alan a kit to make this wee bunny which him and his daddy made.

A few pics from Alans easter egg hunt which he had lots of fun trying to find them all.

A crafty week

2009-04-11T07:34:00.000-07:00

Alan's been on holiday from school this week and the weather to say the least has not been the best so we have spent the week making things from cards, to dinosaurs to masks. We have had a fun week and Alan has really enjoyed it here are some of his pictures

All this digging had lots of pieces inside and they built to a dinosaur which he is so proud of

He also, with Amy painted to wee blue dinosaur, it has a sound box in it when you lift it it roars.

He painted this mug as you can see from the smile he is ever so proud of it.

Anniversary

2009-04-03T08:28:00.000-07:00

Its 5 years since we discovered Alan had CF, and i remember it like it was yesterday.It shook our world and left us devastated and in disbelief, we had so many questions we wanted to ask the main one was why us? why Alan what had we done so bad that we deserved this? I still remember these feelings like it was yesterday and even now sometimes i ask the same question especially when i see Alan in pain.
But 5 years on the difference in Alan is clear to see, before he was diagnosed he was a very clingy, snotty, grumpy little man who when he had a dirty nappy we couldn't believe what a nappy could hold, to now a independent, funny loving boy who has got the best nature and copes remarkably with all he has had to deal with I'm his short life.
I feel blessed to be his mummy and know he was gifted to us for a reason and the joy he brings us is unbelievable.We tried to conceive after Amy and it wouldn't happen, we visited the Dr and he prescribed fertility treatment for us but even that didn't work, they discovered i had polysistic ovary syndrome, we were told we would be very unlikely to conceive so for 7 years we were convinced our family was complete. Only to discover after being admitted to hospital with what they thought was a kidney stone, we were pregnant, we were overjoyed and a little shocked!
Alan is a miracle that we never take for granted.
I do get down sometimes especially at this time when its his anniversary time ,but, we take every day as it comes and count our blessings we have him in our life.

Disneyland

2009-04-01T09:52:00.000-07:00

We are booked up to go to Disneyland Paris in July we go on the 2nd for a week we are so excited and looking forward to it. Alan has been wishing for this for so long he has wanted to meet mickey mouse. i think it will be a great adventure for us all. He is planning all the rides, things he wants to see and do already!
He is not himself the last few days he is coughing and he is very mucusy and all in all really grumpy, i have handed in a sputum to see what is growing then he will get an antibiotic and hopefully make him feel better.

Sad News

2009-03-29T11:56:00.000-07:00

We got a call at half 6 the other morning from Alan's older sister to tell him that one of his really good friends had died he was only 48 we could not and still cant believe it we are so shocked and stunned. He was a railway cop and worked really hard, He had a problem with his stomach and something ruptured and he could not get up the stairs to the phone and he bled to death.Alan could not make his work that day he was so upset.It is his funeral tomorrow and I'm not looking forward to it but i wouldn't leave Alan to go himself.
I'm so sad he is gone it just doesn't seem fair.

Mothering Sunday

2009-03-22T15:50:00.000-07:00

I was awakened with Amy and Alan bringing me tea and toast to me in bed this morning is was a lovely surprise and i really enjoyed it, Alan had made me a beautiful card and had written it all himself which he was really proud of he got me a teddy with a baby teddy its so cute i also got perfume and a willow figure and 2 other beautiful cards from the girls and Alan. I really have been spoilt today and i have enjoyed it a lot.

I have thought about my mum today and her not being here now and i find it hard at this time of year, when i heard about Jade Goody today it really made my heart heavy and feel very much for her boys and her family . It made me think that every day is a precious gift and we should all make the most of it.
Alan went to bed tonight with my new teddy he was snuggling into it and asked if he could sleep with it so his usual bear is in my bed for the night.

Touched!

2009-03-20T07:18:00.000-07:00

My post man arrived today which is obviously not out the blue, Alan has been receiving mail from post pals for a few months now and getting them really cheers him up infact he now knows Jessica's writing on the envelope and says this is from Jessica and although we have never met Alan talks about her as if he does.Today instead of the letter being for Alan it was for me from Sarah it was a beautiful card and on it it says;
This little card is just for you
Cos sometimes grownups need smiles too,
And so a friendly not to say,
Best wishes for this Mothers Day.
I am really touched receiving it in fact it moved me to tears to think people out there really care about us.I feel alone sometimes, i have a fantastic husband and brill kids but i have no other support network and it is sometimes really hard. I lost my dad when i was 9 to cancer and 2 years past in February my mum died so i feel i have no family, i do have a sister and we talk every day but she has her own family and her own life, so this little card has a big meaning to me.

E.N.T

2009-03-16T13:09:00.000-07:00

Alan had an appointment at the ear, nose and throat clinic today . In November he needed to have grommets removed from his ears due to constant infection, his ears were very runny and smelt really bad, they were having a look at him and testing his hearing to see if he had recovered fully from his operation. His hearing test was fine and the perforations in his eardrums have healed up nicely all in all they are happy, the only problem he is left with, which is really hurting him is his ears are left very sensitive,any noise that is a bit loud hurts him to the extent that he holds his ears in extreme pain, they are waiting to see if it clears itself i only wish it would go, its hard watching him in pain and not being able to take it away.
The helper at school was not in today so there was no one to give him his medicine so because i had him at hospital i kept him for lunch he had a burger king and really enjoyed it. my day feels as if its flown by today because i had Alan out for a couple of hours.

Weekend

2009-03-14T12:26:00.000-07:00

I picked Alan up from school yesterday he was a little bit upset he only managed to get 9 out of 10 this week in his spelling test which is still really good but he really wanted 10. When we got home we told him he was going out for dinner with Nikki, her boyfriend Stuart, and Amy they were going to Frankie and Benny's, since Nikki started working in there it has become his favourite place to go. Alan and i were having some time to ourselves last night we haven't been out for dinner for such a long time, its nice having time to ourselves, we went to the cinema after our meal, we went to see Gran Torino, Clint Eastwood stars in it, it was really good and an unexpected ending that made me cry!

Today Alan really was cheered up, he got a letter from Jessica, it was a certificate for getting 10 out of 10 last week he was beaming when he opened it, it is up on his wall.

I have spent the day cleaning and washing I'm so glad to see it all done, i hate a mess but when Alan is around its not easy to be tidy all the time.

Ten pin bowling

2009-03-11T15:38:00.000-07:00

I picked Alan and his wee friend Callum up from school today, he was coming to play with Alan for a little while, i had said to Alan (husband) this afternoon did he want to take the boys and Amy bowling, so he said yes, i picked them up and said to them did they fancy going bowling the two of them screamed yes so we went home i did both the boys homework and then they got changed they played for a wee while because we have been decorating the bathroom since the shower has been fitted and we were trying to finish it off. Around 5 we went and they all had a great time Alan loves the bowling and he tries his best he gets quite breathless doing it but never gives in, its a quality in him i love and am very proud of him, i hope he always has this fighting spirit . After the bowling we went to wimpy the boys loved it they had a burger and chips then ice cream they did very well. We dropped Callum off around half 7 and i came home to my chores of cleaning and washing oh well i cant have every evening off!

Alan's Annual Review

2009-03-10T10:32:00.000-07:00

We were at hospital today for Alan's check up and they had some of Alan's results from his annual review. All in all they are pleased with him his chest was clear today, his ears are still bothering him but we have ent next week for that, he is complaining of a sore throat just now but they have swabbed him so we will wait if it shows anything up, from his results they have his vitamin b levels are a bit low so they are increasing his ketovite liquid which are vitamin supplements. All his medicine will stay the same apart from the ketovite so its been a good day. They say we have to keep his physio up and keep doing what we are doing so makes us feel as if we are doing a good job. His xray shows no more damage this year and his lungs are in good condition, long may that continue.
Sometimes i feel horrible because Alan wants to go out and play but when its cold and damp i am not keen and ask for him to be kept in at school, he doesn't like it but I'm only trying to protect him and keep him as healthy as i can. Its hard but Alan is worth it. Cf is such a horrible disease and one day he is up and next he is down. We just take it as it comes.

Mondays

2009-03-09T15:38:00.000-07:00

I hate Mondays, i never seen to get organised enough on a Sunday and I'm always running about mad on a Monday!

I got the kids organised this morning and dropped them off at school, when i got to Alan's school his friend asked me if he could got to the soft play with him after school, Alan was keen to go so i said yes he was really happy, i met Michelle with his change of clothes and his medication and kissed him, asked how his day had been and he was off. Its really nice to see him with a special friend.
While he was at school today Alan was decorating the bathroom, hes on holiday this week so it a good time for me to get things done. He has got all the wallpaper it so not much to do, i will be so glad to see it finished. We wont get much done tomorrow Alan has the c.f clinic and it takes a few hours, hopefully we will get some of Alan's annual review bloods tomorrow i will blog tomorrow.

Game

2009-03-07T11:46:00.000-08:00

I woke this morning to wee Alan asking me are we going for a game today. I had promised him since he got all his spelling words right yesterday so we got up and organised and went down with Alan and Big Alan we went to the bank then to the game shop Alan could not make up his mind between Transformers and Bolt, after about 5 minutes deliberating he finally chose Bolt, he could not wait to get home and play it.

We got back and he was desperate to get it on, he played it for about 20 minutes when my sister, brother in law and nephew came in, Alan quickly switched it off to play with Nathan, they played Army and then power rangers they really get on well together.Nathan is 5 and Alan likes being the big cousin!

When my sister went away Alan said we would get a take away tonight to save me cooking so we decided on a Indian we had chicken patia it was delicious such a change from cooking. We are just having a night relaxing tonight and i am looking forward to doing nothing!!

Alan's Teeth

2009-03-06T12:52:00.000-08:00

I got a call from school today to ask me if i could go in to school and see Alan, his helper said on the phone he was very upset and she couldn't get him calmed down, i said i would be right there. I drove to the school with butterflies in my tummy and when i got to the door i saw him sitting and he was crying. His helper was waiting to let me in and he ran to me cuddling in to me.Mrs Cooper said he had had a apple and when he bit into it it had made his top tooth very wobbly, i had a look at it and it was hanging by a thread so i said to him be brave and mum will get it out, he really wasn't keen but i knew two seconds and id have it, it was hanging so i got a bit of tissue and got it out. He was so relieved it was out. He then said he felt better and i could go, i kissed and cuddled him and he went back to his class.

I was picking him and his friend up today, so the two of them came running out and Alan shouted to me, mum i got 10 out of 10 in my spelling his teacher was standing and said he had done really well this week and had got them all right, my heart was bursting with pride i was so happy so i promised him when he got them all right he could have a PlayStation game so I'm taking him tomorrow.

His wee friend stayed for dinner and they really played well together today no fighting or anything so i was happy, i had said he could come back another day soon to play.

Here is a pic of Alan without his tooth!

Alans Day

2009-03-05T15:07:00.000-08:00

Alan's friend from school asked me yesterday if Alan could go there for tea today so i had said yes it would be ok and his mum asked if he could go to tae kwan do with him so i spoke to Alan and he was ever so excited and said he really wanted to go he had always wanted to try it, so i packed a bag this morning for him and off we went to school. Michelle had texted to say he had done really well with his dinner and that she was staying with them tonight at the tae kwan do so i went up to watch them doing their moves i was so proud of Alan he absolutely loved it and did really well keeping up, he was a bit out of breath but never gave up, he is my little champ.
Callum, Alan's friend asked if he could come to our house tomorrow so i am entertaining the two of them tomorrow i hope it all goes well.

Amy

2009-03-04T14:49:00.000-08:00

Amy rang me today from school, i could here it in her voice she was upset and that alarmed me because Amy is a very easy going person and to here her like that frightened me. She said to me Did you here about the accident outside school at lunch? My heard was beating so fast, i said No whats happened she then went on to tell me that a girl in first year so she is 12 was running across the road at lunchtime and she got hit by a bus and is in a critical condition in hospital, it caught her foot and threw her on to the windscreen and she had to be resuscitated at the road side. Amy got such a shock. I'm praying she pulls through, i feel for her poor mum and dad, i don't know them but i can imagine getting a call like that it would be your worse nightmare.

Amy is ok now she got a real fright and was really concerned for the girl.

Snow!

2009-03-03T14:33:00.000-08:00

It has started snowing here, its been on since about 8 o'clock and it is quite heavy, wee Alan is in bed and has not seen that it is snowing or that it has left a heavy dusting i just hope its still here in the morning he loves it when it snows. We had snow a few weeks ago and he made a snow man he had such fun with Amy making it, Although we are in Scotland and you would think we get a lot of snow because we stay on the coast we really don't get it too often so when we do Alan loves it, actually i love it too i like sitting inside watching it fall but i hate driving when its like this. Here is a pic of Alan's snow man from the last snowfall we had.

Busy Weekend

2009-03-01T09:40:00.000-08:00

Our weekend has been really busy, Alan,Amy and i were at out nephews yesterday for his birthday he was 22, we went with his cards and we had a bit of cake. At night Alan went out for his dinner to Brewster's with his friend from school Callum and his dad i was at Callum's at a body shop party and I've got to say i really enjoyed it, I'm really shy and get worried about meeting new people but i did it and I'm pleased i did because i really enjoyed it and i treated myself which i never do to some make up and a body care kit it is delivered on Thursday i cant wait to have a pamper night.

Today Alan was at his friends birthday party at the ten pin bowling he had a fab time and enjoyed it ,Alan and i just sat through in the bar had a drink and watched him play, i love watching him having fun.

He got a new Ben 10 ultimate omnitrix from Nikki today and 2 figures so he has been pretending to be ben10 and having me standing like a statue, he tells me he has frozen me and i cant move!

I'm going to do my chores that need done before dancing on ice comes on , i like it but need to get a ironing done before it starts oh Joy!

Shower

2009-02-25T06:49:00.000-08:00

We have had workmen in all morning today taking away our bath and fitting a shower to make life a little easier for Alan and me, When his port is accsessed he, well actually we, find it really hard when he is getting washed in the bath not to get it wet, so the occupational therapist suggested a shower to make life easier so it is in! It looks great,Alan is at school just mow so he has not seen it but I'm sure he will love it, he does like showers and it will be so much easier and quicker in the morning to wash him, He sweats so much in the night, his p.j's are always sticking to him if he manages to get through the whole night normally the top has to come off at some point.

I would try anything to make life a bit easier for him so here is hoping this works.

I have had David Cameron and his wife on my mind since i heard about his son passing away its so sad and awful, their pain must be unbearable i don't even want to imagine how they must be feeling, My mum always told me that there is always someone worse off than you are and it is so true, No one would like to be in their shoes, its such a shame.

Pancake Day

2009-02-25T06:36:00.000-08:00

We had such fun making, and of course eating pancakes. Here are a few pics of Alan and Amy eating their creations

On The Mend

2009-02-23T07:48:00.000-08:00

Well finally i am beginning to feel a bit better, its not nice feeling ill and I'm certainly not used to it, which has made me admire Alan all the more i always have been extremely proud of him but boy when i think how he must feel most of the time i really feel for him. Although he really does take things in his stride and doesn't let anything get him down which is great.

Since he has been such a good boy lately he wanted the new Ben 10 Alien Force watch its a projector that takes slides in the side of it, you press a button and it projects it on to the wall.He loves it, we went yesterday afternoon and got it, He never got his spelling test this week so he is still waiting for the game he wants when he gets 10 out of 10, i have to admit I'm finding it really hard sticking to this as i know he is working really hard at it but i also want to reward him when he gets full marks. Hopefully this Friday he will do it:)

Shingles!!!!!

2009-02-20T11:36:00.000-08:00

I was back at the doctors today and its now been confirmed that i have shingles, no wonder i have been feeling so horrible , the doctor has given me new medicine so I'm sure this will help me, i don't feel as bad as i did yesterday so hopefully I'm on the mend,
Its my nephews party tomorrow he is 5 i have been baking for it i just couldn't let him down he is so looking forward to it, so is Alan and it will entertain him.
Alan is going ok just now he is really pale and not eating very well, the school called me at lunch time to say he had hardly eaten any of his lunch and he was the same at dinner time, he is just not back to normal after the virus he had, i get worried when he hasn't got a good appetite i work so hard to get his weight at a good level then this knocks it for 6, I've told him i will make him homemade pancakes with chocolate spread for breakfast so he said yes so we will see if he eats them!

Some Pics of my beautiful boy

2009-02-18T11:49:00.000-08:00

Alan and his Quilt made for him by love Quilts uk

Alan and Amy on the slide at the safari park

This was him in Egypt looking really well

Back to School

2009-02-17T01:38:00.000-08:00

Back to earth with a bump this morning Alan and Amy are back to school and they had been lying in of a morning so it was awful trying to get them up this morning. Alan is awful at breakfast time so we have been given Calshakes if he is not eating, He is glad to be going back to school he really loves it, im going to relax when he is away today my cold i had has got worse and i now have a eye infection and look like ive got a black eye its really sore. I went to the drs yesterday so i got eye drops and antibiotics so hopefully i will feel better soon.

Alan went to Frankie and Bennys yesterday for lunch with Nikki since i was not feeling too well, then they went to the cinema to see Bolt 3d, he loved it he was as high as a kite last night when he came in telling me all about it, i was hoping to take him last week when they were on holiday but the 2 of us being ill put a stop to that!

Im off for a wee cuppa tea in peace and quiet x

Valentine's Day

2009-02-14T12:51:00.000-08:00

Our day has been quiet but nice, im still not feeling that well im really struggling with this cold! Alan got me a great big teddy for valentines with a lovely card too he writes wee lovely things in it not bad for being 20 years married! Nikki got me flowers since i wasnt feeling well and a single red rose, Alan got 4 valentine cards he was ever so happy, he also got a postcard from Finland this morning from Samuel from postpals he feels really special when he gets mail.He also lost a tooth last night he was eating pasta for dinner and he bit into the fork and it started beeding and was hanging thats the second tooth in 3 days, the tooth fairy brought him 10 pounds last night so he will find something to spend it on.

I'm off to have a hot blackcurrant to see if it will help my throat

Friday

2009-02-13T09:40:00.000-08:00

My last post was i wasn't feeling well, i've got no better still feeling under the weather but hopefully i will pick up soon,Wee Alan had this virus and him being so kind has shared it with his mummy! On the brighter side he is feeling a bit better Although coughing really bad still.

Our C.F nurse was out this afternoon flushing Alan's port he does extremely well getting it flushed and is really brave with the needle going in and coming out, his skin gets really red with the emla cream its still red now and will be till later in the evening i wish we could find something that was a little gentler on his skin.

Its a year since his port has been fitted its hard to believe time has went past so quickly but it was one of the best things he has had done it has made his life so much easier.

Valentine's day tommorrow Alans wondering if he'll get a valentine, i wonder ; )

Feeling Yuk

2009-02-11T08:00:00.000-08:00

Woke up this morning feeling really bad, Alan has managed to pass his throat infection on to me! My throat, head and ears are really sore,Alan is beginning to feel a little better he is still coughing really bad and his voice is still a little shakey but i am hopeful he is on the up.

We have had a day in today I have just not felt like anything today Alan(my husband) ran me to the chemist to get something for my throat th try and make me feel better, i also had meds to pick up for Alan and to my anger or Drs had made a mistake and sent ketovite tablets instead of the liquid so i'll need to go back tommorrow to pick it up

Hopefully i'll feel better tommorrow

New to this

2009-02-10T08:38:00.000-08:00

I'm all new to blogging but hopefully this will be a way of updating, rambling and letting everyone know how we are doing, especially Alan.
Our schools are on holiday this week,Although Alan's holiday started a few days early he is suffering from a really bad throat they swabbed him at the hospital and its a parainfluenza bug which they dont treat they gave him a throat spray to help but he has been suffering a bit, He had the dentist today to get a coating on his back teeth to protect them he done really well and got a sticker for being so brave.His big sister Nikki is taking him and Amy to Frankies and Bennys tonight for dinner he is really looking forward to it

Signing off for now update soon