Monday, 28 February 2011

Touching base.

Checking in to say we are all fine. Had a busy week so hence the lack of blog posts. I also work full time but squeeze it all to 3 or 4 days so I do disappear from time to time :)

Half term week didn't go to plan. Both Ian and I ended up with a vomiting bug at the beginning of the week but some how Sophie managed to avoid it. Huge blessing due to her not being able to be sick!

She did manage to have some fun with her nan and I was able to take her for a good run around in her favourite indoor play centre as the weather was shockingly cold and wet. Her green eye boogers have gone and her eyes are back to their normal sparkly selves.

I have several things to discuss including the results of the Vertex drug trials and a load of blog awards to dish out. Thank you to everyone who has given them to us.

We have CF Clinic tomorrow so will let you all know how that goes and please keep us in your thoughts for a non eventful appointment, and nothing too troublesome from the culture result.

Sophie was back at school today but having to miss tomorrow due to clinic.
This is a highly disjointed post but I promise normal service will resume tomorrow.

Will leave you with a few pictures of Soph having fun last week.

I'll leave it here as Ian and I are about to change Sophs Mic-key button, it appears to have sprung a leak and is about to fall out at any given moment. Wish us luck as Soph is usually sedated for this due to her traumatised brain.

Best case scenario, we'll be in bed for about 10.30.

Worse case scenario, we'll be at the hospital until the early hours of tomorrow.

Take care all.

Monday, 21 February 2011

It's all about the eyes.

So it is officially half term here now, Sophie has one whole week off school. The plan is to get up to as much mischief as possible but the weather isn't playing ball, and it's poured with rain today.

I picked Sophie up on her last day of 'big nursery' on Friday ready for the fun of her week off. As she ran over to hand me her work of art (two bits of cardboard glued together-a masterpiece!)I happened to clock something in the corner of her eye that probably shouldn't have been there.

On closer inspection I noticed that she had a green eye booger. Lovely.

Once home, I gave her eye a good clean and was pleased to see that her eye wasn't red and maybe she just had some funky coloured sleep gunk.

Well an hour later, the white of her eye was bright red/pink and more green eye boogers were practically crawling down onto her cheek. Lovely.

Last day of school and Sophie managed to catch conjunctivitis, infective. It's been doing the rounds at school and we thought we were in the clear with half term upon us. Nope.

So I went a little into panic mode briefly. What on earth do I do?

All sense of logic left my brain, the fact I was a nurse left my brain. I came to the conclusion I had no idea what to do with a non CF problem.

I promptly contacted a friend of mine for a wee bit of advice and she put my mind at ease :)

Seriously strange, Soph hasn't had any typical childhood issues, only ever CF or TOF related and as hard as they can be, at least my common sense doesn't fail me.
Has anyone else ever experienced this or am I truly unique?

The infection is still going strong but has started to settle in the left eye, unfortunately, it has also spread to the right eye and she kind of looks like we've poked her in the eye now.


We had to go to an eye appointment today (oh the irony) for her pre-school mandatory check. Soph was under an eye specialist a year ago as there was a query that she may have a squint, but she was in the full swing of her medical stress induced state then and they had to discharge her due to 'lack of participation and cooperation', AKA violence, high pitched screaming and the ability to sprint away from anyone who came within a few feet of her.

So today could have gone really bad but Sophie stepped up and behaved, allowing the lady to do all of her tests. The bonus being, Sophie's eye sight is absolutely fine and she doesn't have a squint, just a wide bridged nose, which her face should grow around :)

In other news, Soph ate a pile of spaghetti and jelly (not in the same dish!) over the weekend and today has eaten half a can of soup, some more jelly and a little bit of a boiled egg.

Due to her green eye boogers Soph hasn't been able to go to her weekly picnic group today but Ann has kindly sent us the plan so we can recreate it here at home.

Last week Sophie wanted to go on a bus with her nan, here's a few pictures she managed to snap.

Very pleased and excited to be on the bus! (Sophs hair looks really red here, don't know what that is all about as she's blonde, phone camera maybe?)

Oh my goodness, it actually moves too!!

Feeding the ducks in the park...

That's all for now folks, take care and I have three blog awards to accept and then dish out. If anybody prefers not to receive one would you let me know here, just in case I decide to send one your way of course.


Thursday, 17 February 2011

Bertie's drink, Tuesday update.

Today was met with a little apprehension.

Not because we were about to experience something totally uncharted, but it was to be an experience without the rose tinted spectacles AKA the funky haze AKA the good stuff, the drugs...

Today was to be the first ever attempt at flushing Bertie (Sophie's port) without any form of sedation. She would be going completely cold turkey and relying solely on her own fight or flight mechanism to determine the conclusion.

We had decided she was ready, by 'we' I mean Ian, myself and her poor CF nurse who always gets to be bad cop when it comes to Sophie.

Knowing how hard we had worked to get her desensitised to all of her negative hospital experiences, we all had a little dread in the backs of our minds. Would she just accept it like a trooper or would she kick off in spectacular style like she has in the past, finding strength The Incredible Hulk would be proud of?

This was going to go either way.

I've recycled an old port flush picture here as you really only need one to show what was going to be done don't you?

Sophie allowed me to put the Emla cream on easily after school and we made our way to the hospital. Sophie chose to take her favourite teddy Leeber (the Lemar), which she never normally would. Was this an omen?

To cut a very long build up short, we arrived, we removed the dressing that was holding the emla cream on, Sophie grumbled, squirmed, said ouch a few times and before you had time to say 'Holy smokes Batman', the needle was in and the port had been accessed and the flush went in.


The tears were rolling but more so because Sophie wanted her top back on, but as soon as the needle was out, she was absolutely fine and the only person she wanted to cuddle was her CF nurse who had done the flush!

Sophie asked for toast and then took her nurse on a tour of the ward and was completely back to her usual self. In fact, I couldn't get her to leave and the only thing that worked was for some of the ward staff to do this...

This bag contained her toast :)

We left after Sophie had hugged and snuggled every single member of staff.

However, once we had completed the huge trek back to the car (we couldn't have found a space further away) we realised someone was missing, Leeber.

Sophie cannot and will not sleep without him, so I phoned the ward and asked them to look for him. They phoned me back to say they couldn't find him. As panic set in we ran back to the ward, the whole time I was questioning Sophie as to what she had done with him, knowing full well she had hidden him on purpose so we could go back. I knew this because she wasn't too concerned he was missing and kept saying "It's okay mummy, we will just go back and get him".

When we arrived back on the ward he was still missing and about 5 members of staff had joined the missing persons hunt.

Eventually (after a good half an hour or so) Leeber was found, buried under a pile of bricks and train track. Sophie decided to say then "That's where I put him, I knew he'd be safe there".

Oh the joys of manipulative kiddos :D

So today was awesome and Sophie has been an absolute angel (if you erase the Leeber incident from your memory) and we can now drop sedation, which will make everything much easier for all involved.

Someone was very tired after her adventures today and yes, that is a Thomas the tank engine quilt on my daughters bed, she loves it.
Sleeping with Leeber and in the background is 'angry bird' who in Sophie's words "Scares the spookies away". Gotta love imagination!

Take care.


Tuesday, 15 February 2011

Update from Monday.

Well Monday was super busy this week.

I joined the meeting at Sophie's school along with her CF team, her school nurse, the deputy head, her feeding psychologist, one of her teachers and a nursery nurse.

The idea was to get everyone in one room and formulate Sophie's care plan ready for September. It went well, the school are happy to have Sophie in class if she is having home IVs and her port is accessed.

This is a huge weight off my shoulders as I was concerned they may be reluctant to have her there when she is just having a 'service'.
During a tune up, Soph isn't unwell as such, she just needs the extra boost to flatten Mr Pseudo when he is getting a little frisky in her lungs.

I'm also totally impressed with the CF team who are willing to come out at any time to speak to the school or as Sophie gets older, her class mates too should the need arise.

Her feeding psychologist was also amazing, she gave them Sophie's story and all of her needs in very understandable terms. Basically what they should and shouldn't be doing regarding meal times at school. The school really seemed to grasp why Sophie doesn't eat but also understood how much ground work we had already done and how far she has already progressed.

Basically they now know what to avoid to prevent any undoing of all of our hard work, which pleases me greatly.

Her nursery class are going to incorporate more 'food days' into class and have a vast array of characters who help explain eating etc

I was so very impressed with everyone, we have struck gold with the entourage Sophie has to help her over come her issues but also allow her to have a smooth School experience and not stand out like a man with a vacuum cleaner.

After this meeting, I picked Soph up from class and we headed over to the picnic group. We had a lot of fun. This weeks theme was 'smells'. Sophie had the opportunity to smell a lot of different foods and also taste them if she wanted.

We all had a lot of fun playing with different foods and almost having a full blown food fight at one point (all in the aid of therapy!).

Sophie made some progress this week and actually chewed on some leek, ate some garlic bread, licked some mint and sucked on some orange. She wasn't particularly impressed with a sugar doughnut though, she didn't like the feel of the sugar all over her hands.

So all in all, the sessions seem to be working, it's quite exciting.

Just before we left, Sophie was given a biscuit and a juice drink. She licked all of the creamy bit out of the middle of the biscuit and actually drank quite a bit of juice.

Looking rather pleased with herself...

and in case you didn't notice, look how much juice she drank!

It may not look like a lot but this is a significant amount for Sophie. She hasn't drank anywhere near that much in one sitting since she was 4 months old.

Progress I tells ya!

To finish the day off, Ian and I went out for a meal to celebrate being together 13 years and how could we have left Sophie behind?
She managed to do well during the meal, she tried some garlic bread, chewed on a carrot stick and dipped it in various sauces, drank some lemonade and ate a small amount of ice cream. What a star.

I will let you all know how the port flush went in my next blog post. Hope you are all okay?

Take care.

Friday, 11 February 2011

All is brighter.

Because someone is feeling better...

Antibiotics have completed and Sophie is 100% back to her usual self. Just look at the colour in those cheeks!

We've had a fun afternoon of running around, climbing, laughing and generally just fun exercise.

She loved rolling these giant balls around and throwing them..

Busy week coming up after the weekend, including the meeting at the school with her CF team and feeding psychologist, picnic group and port flush. Will update about all.

For now, I'm just relieved to have my little girl back :)

Have a great weekend all, I'm working!

Take care


Tuesday, 8 February 2011


"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.

You are able to say to yourself 'I lived through this horror. I can take the next thing that comes along

~Eleanor Roosevelt.

I love this quote, it is so fitting for the situation we find ourselves in regularly, living alongside CF. Please pop over to Jenelle's blog, if you'd like to find some more inspiring quotes like this one.

Well again, thank you all for your love, support and prayers, something has helped. The antibiotics appear to be doing a fine job of getting little missy back to her bouncy self.
Her cough is still present but it has calmed down so much, she's stopped coughing at night, which is a major achievement.

We managed to get out and about and have some well needed exercise to help clear out those wind bags of hers. The weather is still cold here so we ventured off to an indoor play centre again, this is the best picture I could get as Sophie just wouldn't stay still for more than a second, she had energy to burn and I wasn't going to complain!!
It's taken at the bottom of a huge slide which dumps you in a deep ball pit, tons of fun!

Sophie's daddy also took her to one of her new school friends birthday party at the weekend. She had an absolute blast. It's so great to see how well she has settled into pre-school and how well she is adapting into her little social circle.

She's growing up fast.

We had to miss this weeks play picnic for reasons beyond our control, but hope to be there again next week as part of our journey to get Sophie to eat.

On Monday morning we have yet another meeting at the school. This time with the school nurse who will be writing Sophie's full care plan. The CF team and her psychology team from her eating side will also be present. I cannot get over how proactive the school are, I'm astounded by the detail and effort they are contributing to allow Sophie's school time to run fluently for all.

I'm one impressed Momma!

On Tuesday we have the port flush.

Bertie's drink wont be given the usual way though, this time we all feel that Sophie may be ready to try without any sedation. It could go either way so any positivity you have, please send our way. If it doesn't go to plan, Soph will have to have sedation and we will try again in the future.

We are doing really well with sponsorship for Ians skydive in June, we are up to £800 in donations now. I'm only updating the justgiving page when we actually receive the money from offline donations or unless someone donates online. So the total you see is alot less than we have. We are SO CLOSE to our target of £1000 so if any of you have any spare change, here is the link to donate :)...

I'll leave you with one last picture. It is Sophie's homework.

Yes you heard right, homework, she's still only 3 and has HOMEWORK!

She had to get creative with different textures, I think she did really well, I only helped her with a few bits as I'm awful when it comes to anything art related.

How do you think she did??

Take care all


Tuesday, 1 February 2011

I need more space.

No. Not alone time, but actual space.

Don't think I have ever posted a picture of Sophie's monthly feed delivery and medication. For the first time, the two have crossed paths so here you go.

Most of what keeps Sophie alive every month.

Our recycling has tripled since we had Sophie..

Breathing treatments, laxatives and in the large boxes are her bolus giving sets, which are used to feed her via her Mic-key button..

Spare Mic-key button and a selection of syringes used for medication and Mic-key button maintenance. Also the milk that has kept Sophie alive for the last 3 and a half years..

As some of you are aware, we monitored Sophie's cough but have had to start oral antibiotics for two weeks. The cough started to change to a wet cough and I wasn't prepared to take any chances so the orals have started...

I just wanted to say a huge THANK YOU for the overwhelming support you gave us in relation to our last post. You are all simply awesome and I am feeling much more 'stable' now. I seem to have these wobbles every now and again, I guess it's the frustration and fear that CF has bestowed on our lives. Most of the time I can handle it well and fight it head on, but sometimes it hits when you least expect and this knocks me totally off balance and I need to get my feelings out.

Sophie is doing okay, she's still coughing away and clearing lots of clear mucus during treatments but her energy levels are improving now. She has her port flush coming up in the next week or two so she'll have a once over then anyway. She's turned a corner for the better so I'm hopeful that this will pass with just orals this time. I say hope, as I thought this last time and it certainly wasn't the case.

Will keep you posted.

In other news, Sophie attended the Picnic group on Monday, which has been created to help children like Sophie who have issues with eating. It is a very innovative project and we are very excited to be part of it. We are the FIRST group in the country to have a group led by parents for parents. We are currently contributing towards the literature and ultimately, to find out if we as parents can do a better job than the dieticians to help our children over come their eating issues.

We are being closely guided by a team of expert psychologists and have a very interesting model to follow.

You can read more over on our other blog which I co-write with Ann who is running the sessions. Sophie will attend the sessions every Monday for five weeks and we even get homework!

I'll do a more detailed blog on the whole experience in the near future.

Sophie is continuing to make more steps in her journey to become an 'eater'



It's going in..

Cheese and cucumber sandwiches are overtaking beans and toast in the popularity stakes at the moment..

Take care all and thank you for all your comments and support.

You all rock.

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