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.