Last week we had Isaac’s annual review, and lots of good news. Lung function, chest x-ray, ultrasound all looking reassuring. He did great on the exercise tolerance test (looking at his heart rate and blood o2 sats as he runs up and down a zillion times). In his words he ‘bossed’ it. Whatever that means. Other results (blood work etc) are to follow, but we’re feeling good. It's a whole day at the hospital, but he is the best company, it's great to spend that time with him without the distractions of home. We are both as silly as each other and it's a great people watching place.
This week we met with the gastro specialist team about his tummy issues. They are not keen to label his problem, as the management of it would be the same regardless. Bottom line was he is already taking everything they can offer. The full arsenal. The anti-sickness meds are working so well right now, they are happy for us to continue, although we can't rule out future bouts. Surgery to stop his vomiting is a possibility, but even if he has one day a week where is not sick, this proves mechanically things must be working, so for now, we continue as we are, tentatively hoping that he continues to improve.
We see his Immunology team again in May, but have sent in bloods ahead of that to avoid another stabbing.
So, all in all, reason to celebrate – another glass of wine me thinks! Although I have come to the conclusion that alcohol is just a way of borrowing the next day’s happiness… but I'll feel sad about that tomorrow.
Talking of sadness, Jayne's passing creeps up on me when I least expect it. Usually when I laugh, and I think ohh, Jayne would like that and I think to text her. A good reason to think of someone I think, laughter. If I miss her this much, how can her family be managing?
I’m trying to focus on the things that we have to look forward to. This year feels like a BIG year –
We have a proper holiday planned. Two whole weeks!
But first I am joining Isaac on school camp.... Not because I am a stalky Mum, but because of his nebulisers, physio and meds. Bit much on how own yet.
Jo, Sarah, Jane, Erika, Lemon, Jess and I will 'boss' our 50km in the Brecon Beacons and raise loads of dosh for CF (please please sponsor us here!)
Isaac and Rosa both start new schools (Secondary and Primary). I'm not sure this one can be true, but I'm told it is.
We have more plans for the house renovations (we never stop, can't help ourselves).
....But work have announced redundancies – so we might have to put those renovation plans on hold.
.... At the very least, the redundancy risk is making me think about my options. That might not be a bad thing. 13 great years at the Press, I have been lucky.
We are going to have a new baby in the family for me to squeeze (not mine before you ask, huge congrats to my lovelies, you know who you are!).
And Isaac will be well. He will, he will.... he must.
Have a great day all. Tell the people you care for how much you love them. X
