Silver lining.

Hugely slacking with updates recently, apologies!

Left you all on a bit of a cliff hanger too. Well the orals did the job and little miss is now fully back to her happy self with little to no cough.

Soph had her port flushed last week which went okay. She's still a little tearful again but it was done and her CF nurse has a great aim :)
Bertie (sophs port) turned one in June also. We know he wont last forever but very pleased he has survived his first year and long may it continue.

We have been to CF clinic today and I have to say it went beautifully. Soph cooperated like an old pro and didn't refuse anything.

- Weight has increased a whopping 1kg, she now weighs in at 16.8kgs.
- Oxygen saturations were 100%
- Height is a bit variable depending on how well Soph stands but I think a small increase was there.
- Chest sounded wonderful, no signs of crackles or pops.
- Temperature fine.
- Stomach nice and soft.
- No signs of clubbing to her fingers.
- Awesome cough swab taken so I'm sure she'll grow something!


The only change to be added is some fibre to her milk. We had a small issue last week where Soph developed a partial blockage again and was complaining of tummy ache and although she passing poop fine, it smelt very stale and old and was very bitty. All classic signs of her being blocked.
We increased her laxatives and she was soon flowing well again but I'm concerned that we cant get her weaned off the laxatives and it has been a very long time. As she is pancreatic sufficient, she shouldn't really be getting too many bowel problems and after talking to her dietician, we discovered her neocate milk doesn't have too much fibre in it.

Worth a shot right? We will add some powdered fibre to her milk in the hope it will give her bowel a more normal action and help it work a little better. Hoping then we can wean the laxatives off.
When we get the prescription and start it will let you know!!

I asked what age PFT's will be introduced and was told around age 5 or 6 if she doesn't cooperate. It'll take her a while to get the technique right but will be a vital tool in knowing how the windbags are behaving.

We also saw her feeding psychologist and dietician last week and basically they are pleased with her eating progress and will re-review once she starts full-time school in September. It was kind of strange not having to speak for Sophie when they asked the usual question of what foods she likes. Sophie interrupted me and reeled off everything she likes to try. My goodness this girl has grown up FAST!

So all in all, everything is looking fairly good again for Soph. I on the other hand have a trapped nerve in my neck and having to take time off work due to the pain currently. Wish I knew what I had done as it just went twang and hasn't been right since. Ian reckons it's the 30 year curse. As soon as you hit 30 your body temporarily falls apart :D

I will leave you with some photos of Sophie's first sports day at school. She LOVED the running races, however it was a very hot day and she doesn't fair well in the heat. She had a very prominent salt line where her hat had sat!


I was limited as to the pictures I could show due to cutting out other children. I have no skill in editing pictures so you will have to make do with what's below :)





Hockey baby!!











Obstacle course...




















The running race where she had to scoop up a bucket and spade...










This was a parent and child race and as I couldn't take part due to my wonky neck, Ian took part with her. I have to say the first attempt he managed to trip her up but the second time went well!











Waiting to throw bean bags into the hoop...










She soon mastered it well...


















And yes, her school are insane letting her loose with a large weapon...







Take care all and it has been lovely receiving emails from parents who have found this blog helpful. I partly started it as we couldn't find anyone who had been through similar to us when really could have done with having someone to talk to. If we can help in anyway, please get in touch :)

Much love!
xxx