Cf clinic

Alan had clinic today. He is very productive of sputum at the moment so his physio session this morning before we went got a very good sample to sent to the lab, hopefully the results will be back on Thursday.
The dr was pleased with his height and weight, he has grown 2cm since last visit. His chest is a bit wheezy so we have to up his physio sessions. He also discovered a polyp up his nose and said his airways were very red and inflamed, so they prescribed a new medicine called naxonex which is a steroid spray that goes up his nose he's to have it for a few weeks to see if it makes a difference, if not then the ent will see him to arrange a operation to remove the polyp. He's had them before, one of the rubbishy things that go with cf. The dr also looked at his tummy which looks really bad with bruises and needle marks, she said he is doing really well and although his tummy looks bad there are no lumps or bumps with the needles going in which is good, she encouraged him to try other parts of his tummy to stop the same part being used all the time. The dietician was delighted with him and his appetite so no changes made. The physio was a little concerned with the colour and amount of his sputum but until the results are back we wont know.
We have to go back on Friday as alan needs to go into the lung Lab every month now as his Lung function has been down by over 10% and we don't know why.
When we picked him up today from school, he had a picture of him holding the olympic torch here it is, he looks so proud to be holding it.

MRI scan

Alan had a MRI scan on Saturday of which we get the results of on the 30th july. He was very brave and lay very still, it took about a hour to scan his head and neck. After the clinic we went to the kelvingrove museum to have a look around and to have a bite of lunch. We saw a dinosaur footprint.
He also has started insulin at lunch time too, it's 5 injections a day and 10 finger pricks. He's my very brave special boy .
He has the cf clinic tomorrow so
Will update tomorrow x

Alan

Wanted to update you on Alan.
He's having a really difficult time at the moment. He had a sensor in his tummy monitoring his glucose levels for a week as they discovered his sugars were spiking. So the hospital has now put him on insulin with every meal, and a long acting insulin so he injects 5 times a day and pricks his fingers 10 times a day, before and after meals. His fingers and tummy are in a awful mess with pin pricks.
They also discovered his lung function Is Down so they started him on a new inhaler and has to go to the lung lab every month. His portacath, here he gets his iv antibiotics through has stopped working so he requires an operation for it to be removed which is done at the specialist hospital in Glasgow.

Clinic Visit

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

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

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

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

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

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

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

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.

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

Insulin

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

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

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

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

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.