You might have noticed that my blog has been quiet for a few weeks and, in time, I will explain a little more about the need…my need… for an extended silence as life has happened around us. However, we’re home after some family time away from home over the Easter holidays and I’m back with a vengeance with just so many reviews, recipes and photos to share from the last month or so.
But, before I get to the fun bits, I thought there was a much-needed health update, which is desperately long overdue. On the medical front, things are still ticking along without much intervention from anyone other than us. We haven’t been seen at GOSH for over a year and I have no idea when or if an appointment will come through the door. The gastro department there are very much working on moving patients back into local care and whilst I have steadfastly refused to let them discharge M from their care fully, they have definitely taken a step back and are in the background in an advisory capacity only should we want or need to call on them.
It also feels a little as if our local hospital has shrugged their shoulders with something of a “…we don’t really know or understand what’s going on with him…” attitude and are touching base with us on a fairly infrequent basis. I don’t really blame them as, for the most part, M is just going along as always and frankly I’m certain that I know far more about managing the ups and downs of his EGID on a day-to-day basis than anyone else. The one biggest change that has hit us has been the confirmation that there is almost definitely a mast cell problem lying alongside the EGID, but as the treatment is more or less the same for both, that diagnosis hasn’t made a difference to him or us in any way.
Food-wise, we’re now tentatively up to around the 9 or 10 food mark, having introduced onion, bacon and bananas on a regular basis and allowing the occasional other food creep in when circumstances call for it and we can be reasonably confident we can manage the outcome. These 3 foods have really added to my repertoire of recipes and make cooking so much more interesting and flavourful for M. Holidays continue to be the time when we really stretch our boundaries and whilst there are always consequences to live with – some of which are easier than others – our approach has led to a much happier M.
Both children are doing well at school with glowing “short” reports and parents’ evenings for them. G has selected her GCSE options with relatively little fuss or argument or discussion and we’re heading with a little trepidation into the wonderful world of humanities combined with dance. She recently took and passed her Grade 3 clarinet exam, a day I wasn’t sure we’d ever see and is also teaching herself to play the keyboard, guitar and ukulele in any spare moments she finds at home. G and M also recently took part in a regional Stagecoach performance celebrating 30 years of Stagecoach and loved every moment of it. It was great to watch them from the wings (I was back in chaperone role once more) as they danced and sang with enthusiasm on stage. As you can see, it’s been a busy few weeks and there’s just so much to share that I’m not entirely certain where I’ll begin!