Alans Dream come true

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

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

 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

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

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 .