Monday, 30 May 2011

Big brother is watching?



Missed us?

I guess now is a good time to explain our two week absence and for once it isn't because Soph has been poorly.
First things first, Sophie had her four year annual review a few weeks back and it went great.

- Weight has increased from 15.1kgs to 15.8kgs, so the milk increase was what she needed.
- All her bloods were normal and apparently she has great Vit D levels.
- She allowed her Dr to listen to her chest, which was clear and also examine her tummy which was soft.
- Chest Xray was great, only the smallest of change to her lower right lung but that is normal with anyone with CF, and her Dr concluded that the Xray was normal unless he was being super picky.
- Soph finally allowed her oxygen sats to be taken and they were 100%.
- Cough swab was done well.

So all in all a fantastic annual review and her team are very happy with her. We just need to get a stool specimen to send for faecal elastase to check that her pancreas is still functioning as it should.

Back to the cough swab.
I phoned for the results and was a little shocked to hear that she hadn't grown anything other than normal flora type substances. No Mr P.

Before we all get excited, Soph is colonised with Pseudo, we don't ever expect her to not culture it and just because it doesn't grow, doesn't mean it isn't there. However, this is the first culture in nearly two years that Pseudo hasn't shown and I'm happy.

I have no doubt that the sample was good so I'm just hoping it means that Mr P's numbers have reduced a little and that I WILL take. Maybe explains why Soph has been so well lately?

We are going to re-culture when she has her port flush tomorrow though so my happiness may be short lived!

Right, on to why I haven't blogged in two weeks..
At the annual review Lung Behaving Badly was mentioned.

This blog.

Sophs dietician had been googling something and our blog kept appearing in the search and when she clicked the link she realised it was us.
It was brought up when they had their MDT meeting before seeing us and Sophs consultant talked to me about it when he saw us. Nothing negative was said and they actually praised it especially my post on the vertex drugs but obviously more of the blog has been read.
Fortunately for us, we think Sophs team are excellent and they know this otherwise it may have become a rather uncomfortable conversation but still, I needed some time to decide whether I was going to make the blog private with invitation only.

This blog is not only a journal or a point of reference for us, it is also my outlet to get my feelings out when I need to and occasionally that means a good vent too.
I have decided though, that the positives out weigh the negatives for us to keep the blog public. Without it, we wouldn't have the support from you all, support that without this blog we just wouldn't have. It's the only way in which we can really interact with other CF families and also people with CF and I refuse to let that go.

I doubt the team will be avid readers but I'm sure they may pop round from time to time, human nature?
I reassured them that no names were ever mentioned and I don't think I have ever mentioned which hospital she attends either. Her consultant actually joked that he'd have to consider getting a super injunction out :D (seeing as they are so popular at the moment).

What would you guys do? Luckily our blog doesn't revolve around her team, it's just an area that has to be mentioned from time to time, but a small part of me feels like we have been rumbled and I don't know why I feel like this?
Are other bloggers open with their/their child's team about their blogs?

Interested to know your thoughts on this.


I took this picture of a rainbow whilst driving home from Sophs annual review, it's camera phone quality though and I was driving at he time! You cant tell from the picture but it was a full rainbow and very beautiful.






PS Second lot of Thomas pictures to follow and we have also been to Cornwall for a weeks holiday so more to come on that too. Port flush tomorrow also.

Hope everyone is well and will be catching up on you all throughout the week.

xxxx

**For anyone struggling to leave comments due to blogger having a hissy fit, when it asks you to sign in, un-tick the keep me signed in box and it should allow you to post comments. It's working for me after writing out huge comments for people and then it not allowing me to post them! Grrrr. Hope that helps!**

Tuesday, 10 May 2011

Birthday fun part 1.




Well Sophie is now four years old :)
We gave her the choice of how she would like to spend her birthday and knowing she isn't the girliest of girls, we guessed she would choose Thomas Land again(at Drayton Manor park) in favour of a party.

So Thomas Land we went!








I had to include a couple of pictures of her birthday as we went to Thomas Land a few days before the actual day as she had school. She had the HUGEST balloon going which amused her immensely. She is also wearing her gift from Gem which she absolutely loves so thank you again hun!

Sophie did end up having a party at her school as her birthday was the day before the royal wedding, they were already celebrating so we sent lots of food up and her cake and they had a great time.


















My dad and step mum came with us this year and between us all we took over 200 photos, but relax people, I wont inflict them all on you. However, I will post a few blog posts to get across some of what we got up to.
Any Thomas fan would love this place it's so much fun and the rest of Drayton manor has plenty to occupy the big kids too!








Life size Thomas!!







Here is Rosie who is Sophs favourite at the moment, you can see some of the characters performing on the balcony, which was interesting!!









The fat controller!!







and the thin controller (non of us knew he existed and I'm convinced he was made up and he sang...alot)








Sophie on board Rosie, her face says it all.

















Percy, who used to be Sophs favourite character, he was out of action or as Soph put it, having a rest.







We had a blast and look out for the next installment, lots more to show you all!
Thank you to everyone for Sophie's cards, presents and birthday wishes. You all contributed to making her birthday awesome this year.

To be continued...

Monday, 9 May 2011

VX770 first hand amazing experience.

Just saw this on our CF forums and had to share for those that may have not seen this. It made me cry!

Amazing


Enjoy! Let me know what you think and if it affected you like me :)

(birthday photos coming this week!)

X
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