Kids enjoy another amazing starlight day.

I've been working, but the kids have had a ball. Thank you again Starlight (to support this fabulous charity, read stories about the work they do for seriously ill children, and read about Isaac's granted wish, visit here.)

Have a great day all, proper health update soon I promise! X

More excitement in Merry Moly World....

OK, so this one is for the more geeky CF parents like me! I read this tonight. As ever, my belief is that there will be no 'One Cure' for CF (although very happy to be wrong on that front, such as gene therapy) but that a thousand small advances will, in affect, be a cure for CF as we know it. This might be one of those.

Good night all x

Who knows where the time goes...

All is well in Merry Moly World. The latest lab results are good! Today my gorgeous boy started Secondary school. This is quite incomprehensible to us, as it's surely not been 11+ years?! Here are some pictures of our amazing boy. Have a great day x 

First of Primary school. And yes, we let him go with that hair do. 

 

When Isaac and Anouk got on.... 

Laughing at my attempt at a cake (head previously fell on floor and was later reattached). 

Mummy love. Before I shrunk the lovely hat Ju made (nightmares still). 

Our little star. 

He no longer permits pictures being taken, so for now you'll forever be shown old ones! 

There were your eyes in the dark of the room...

Today has been a good day.

The kids are well. My head is well. Work is manic in a kind of 1001 things to do but I actually want to do them kind of way. And I am working with the loveliest people, and that means a huge amount to me. I am all about the people. My head may be less well soon as I am heading into 8 days of programme management training. Last time I had to do that amount of solid learning was way back for my degree (Psychology, if you're wondering. I am still wondering how I managed to pass). I'm not sure I can sit for that long, let alone listen, and understand, and retain any actual information! But I badly need to well in this. 

Isaac is well enough to postpone clinic this week, while we await his next lab results. If the PseudoA has not cleared, we'll need a new plan, but for today, I will think positively. I will post soon about his attitude and compliance with treatments, as we head into these teenage years. It's been emotional shall we say. We badly need him well for holidays and the start of secondary school in September. 

In the meantime, interesting article here on the use of inhaled Ibuprofen. Considering the widespread use and benefits of Hypertonic Saline (to us lay people, salty water) in CF now, when these already developed drugs come to light as a new therapeutic option, this is very welcome news in a world where NICE are refusing to fund precision drugs like Orkambi. For now at least. Which reminds me, if this petition can reach 100,000 signatures (...so about 80,000 more) it will be raised for debate in the commons. Any ideas on how to highlight this issue and gain that kind of support? Please message me with ideas! 

Have a great day. Listen to this or anything from the Epic album . It always cheers me up x 

Powerless.

No electricity today (don't ask, let's just say, old house/over enthusiastic builder/not a trained electrician). So rescue plan by Super-Ran (love you Dad) followed by lecy and very late food; An emergency visit to Sam's kebab van. But check out how many meds Isey will need to digest that amount of kebaby fat.... makes me glad to be veggie! 

 

Good night x 

You put your hands into your head. And your smiles cover your heart.

Rosa is well again, and loving life in a leotard it seems. Day and night... 

I am excited about new travels, and so thankful for a supportive husband. 

Anouk is a beautiful soul. She is not so excited about my travels. 

I am almost crying listening to Daughter (who I can't wait to see at Latitude very soon). 

Isaac is kicking some serious chest infection butt. My soldier. 

With GiftAid we are well over £6000 for our Trekfest. Amazing! 

I am thinking of a friend in pain from loss today also. Susan, my love and thoughts are with you x 

The lovely Bonny found this and sent it to me earlier. Had forgotten all about it. Never do local news now, since they always make CF sound like a sob story rather than a life so enriched, where we dance everyday, we laugh, we have the best fun. And that's because we have the best family and friends. It's all about the people! Always. Love, love, love x