It's been quite a week!

Since I last posted, the abscess has fully resolved and the scabbing is also now mostly gone. Very relieved about that! The other wounds are also still looking better, although she is starting to go at them again when she can. She has started the "new" antihistamine (new as in one which was recommended by Dr A in NY as worth trying, not new in the sense of it being a newly developed drug) last week also, and we reduced/removed some of the other ones so she wasn't just being floored by sedation! I misunderstood the paediatrician and thought I was to completely wean her off the sedatory drug which Alyssa gets to help the antihistamines work better - she actually just meant to wean her off the day doses ... so I had a few sleeplesness nights (because Alyssa did too) because I reduced them a bit too quickly, considering she also had the other antihistamine removed around the same time. Thought I'd done it gradually too, lol!

She was complaining about her "sore bum," that she needed her nose cleaned, that she needed water, that her tummy hurt ......! And everything in between, she just could not seem to settle at all, so we were both pretty tired. Spoke to the paed again and realised I was still meant to be giving Alyssa the evening dose of sedation, to see if that was enough to get her through night-time - and allow us both to get a good nights' sleep. It appears to be doing just that again, thankfully!

Her gut pain is sadly still much the same, despite her being noticeably stronger (her suit has not returned yet) and being helped by the OT exercises we're doing. She also sees the OT here once a week, and she gives Alyssa completely different things to do than those we are doing - so at least she's not getting bored with any of it. She really likes the OT stuff because it's just like playing games to her, even when some of the things are on her "no like" status ... she usually accepts whatever is being asked of /done to her. She managed to put her feet (the most sensitive area in her whole body) into a big tub full of dried peas last week - with her socks on obviously - and that's a major step for her, she's so paranoid about her feet touching anything!

We've also just started Alyssa on a propulsant laxative, in the hopes that it will help her to pass stools more easily - and she won't have to strain for hours on end like she does without the help of drugs etc. It's a bit too early to tell if it's helping yet, but I hope so. It's certainly not making her worse at this very low dosage so that's my main concern passed over (she's so sensitive to anything which makes her gut muscles contract, and that causes her even more excruciating pain!). She's been fighting yet another cold this week and seemed today to be going downhill, but she looked and felt better after her long nap, temperature was going back down towards normal when I last took it.

The dentists were very pleased to see/hear that the crowns over her molars are still protecting her tongue and inner cheeks from damage, and they will continue to monitor her every 3 months. The dental consultant said that the crowns can wear through after a bit so they will keep an eye on them for signs of wear and tear, and do more crowning as necessary.

I've started this update twice now and my laptop's crashed both times, so some of this is now a bit out of date (and also why it's taken me so long to update things this week!). Will update the rest again in a bit, so I can make sure this actually posts before I lose it.