Tuesday, 5 August 2014

Annual Review.




We were a little late sorting Sophies annual review as I had to reschedule her appointment.

All in all things are looking great!

Height and weight are steadily increasing and her chest sounds good.

Lung function left a little to the imagination because Sophie appears to have forgotten how to actually blow into the machine lol

We've worked so hard on getting her to take a big deep breath before actually blowing, that today, she took a huge breath and held it-bless her haha!

By the time she remembered to blow out it was really affecting her FEV1 result (the amount of air she can blow out in a second)

Consequently her FEV1 was 88%

Now this is still within normal range but we know it's a lot less for Sophie but aren't concerned as we know why it was down.

Her FVC (the amount of air her lungs hold) has gone up to 121%! Super happy with that!!!!

Cough swab and a tiny bit of sputum have been sent for culture so we will wait and hope nothing grows.
Interestingly, Sophie hasn't grown pseudomonas since last October. I fear I may have jinxed that now but I had to mention it.

All her bloods are normal except her vitamin D which is a little on the low side. Partly due to diet, partly due to her being fair skinned and having to wear loads of sun cream. We are gonna add a vitamin D supplement in to see if that helps.

We ran round to X-ray for her to have a quick chest X-ray done. She wasn't best pleased at having to wear a gown today!
But she was a star having the X-ray done.

She had a physio session and learnt a few techniques and we now have a new regime to try. So we will see how that goes and if it help her.

Only other things to note are a CT scan and a bronchoscopy in the near future.
CT scan because her last wasn't a great result as it was done under GA and the pics were rubbish & the bronch is to get a true picture of her current lung gunk and what delights are living down there.

I assume these may be done near her next IVs which will probably be done before the cold and virus season arrive. Watch this space.

It's currently the summer holidays so we have been busy on my days off having lots of fun and getting lots of exercise in.

Swimming continues and Sophie is starting her iceskating lessons in September-exciting!

We had a small bit of drama while Sophie was riding a roller coaster. We were just coming down a huge hill as a wasp flew in front of Sophie and stung her on the forehead! What are the chances eh?! Luckily she didn't react and a lovely first aid lady stuck something on it and covered it with a plaster. Didn't stop soph feeling sorry for herself for a little while though!





She was soon back smiling once the plaster came off. Couldn't even see the sting after a couple of hours thankfully.




I will leave things here for now. Just an small update today.

Take care

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