This is may be scrappy and a bit nonsensical, or at least, disjointed, apologies. It’s been a while. Things have been busy, but for mostly good reasons. I wrote this first part in April…
Isaac’s good stretch after our intense time in hospital in January/February lasted well, but he is back on IV antibiotics now. All going well, although lots of nausea. Anti-sickness drugs (Ondansetron) help, but sometimes it’s simply the physicality of coughing so hard and the accidental consumption of mucous overnight.
He never, ever complains.
This time he is on IV drugs that mess a little less with his kidney/liver function - a much needed organ break. We are hopeful that a two week course, following a week of extra oral abx, will be enough to knock the pseudo party on the head for now.
His health has been up and down these last weeks, but when well, he’s been able to work on the house extension we are building - an addition to our garden/office (previously a garage, renovated into a kids games room a few years ago). This extension will give Isaac his own space and a little more independence while his health holds him back from full time work and the reasonable possibility of leaving home. This limited life won’t be forever, but for now, this is a positive way of making the most of what we do have (If I had my own way? My kids would stay home with me forever). This extension is only possible because building is Dan’s trade, Isaac’s own savings, and wonderful friends that help. Bonus is that Isaac is learning on the job.
I have been recovering from a small injury (broken wrist and a wound to the same arm that needed operating on). Once the pain was managed, it was fine, but weeks later, it’s just a little frustrating. I have never been one to rest and relax for long, and maybe I’m not quite ready to accept that you bounce less at my age when galloping horses around the fen and falling off. Partly as a result of this, but also many other reasons, we had to say goodbye to our Lottie. She has now returned to her old owners who will bring her on and continue to grow the confidence that I hope she has gained with us. I bawled my eyes out for days, but we know this is the right decision. As lovely as she was, she was too inexperienced for a child Rosa’s age. Our focus now will be on helping bring on some very special Icelandic horses that our good friend is kind enough to share with us.
If you are local, a wonderful, long time friend of mine from work, James Dingle, who plays in an awesome band, Sugarbeat, have super kindly chosen to donate proceeds from their forthcoming big birthday gig to the CF Trust. To purchase tickets, please follow this link. It is impossible not to like this band; if you want to find me, I’ll be on the dance floor, and mines a gin and ginger thank you. Please come dance with me! July 13th at the Portland Arms.
July update: Having just enjoyed a family round of COVID once again, Isaac and I are both still feeling beaten and bruised. Post viral symptoms are lingering longer than my impatience can take. We got out for our daily dog walk yesterday, to the river, and talked awhile about how he must never just accept feeling shitty as his fate, or his new norm. His reluctance to tell his CF team when he’s going downhill is understandable - inevitably it ends up with another course of IVs - and summer is the worst time for this (no swimming, limited showering, massive sun sensitivity…), but avoiding clinical review is clearly risky. There are different options, there are new things we can try, and ultimately, treatment decisions are his. I urged him to make those informed decisions, rather than denial ones as extra treatment is a pain.
I love his optimistic outlook (‘I’ll be fine Mum’…) but as we play this long slow dance with the hope (of better treatments round the corner), now more than ever we need to battle the bugs and keep his lungs well.
We will be lifted from certain non-disclosure agreements soon and be able to tell you more about clinical trials and next steps. Thanks for still reading. Love, love, love x
