More progress

Abigail has been home for over three weeks now, and is obviously enjoying being out! The main problem has been getting her to sleep of an evening on her own, not surprising after spending most of the last 6 months sleeping next to one of us. We have ended up buying a new single bed for her to help with this, as when all else fails Mum can lay down next to her for the night. This just wasn't possible in the converted cot. (note that this is not slack parenting on Dad's part, she simply will only tolerate Mum once the sun goes down). Most nights she is still up at 830 of an evening, some nights we end up giving up well before her. This is slowly improving, hopefully every one will be getting more sleep soon.

Some pretty big milestones in the last week. You might just notice it on the photo, but her hair has begun to return, just as the last few strands that survived chemo finally feel out. This has been coming over the last fortnight, with a 2-3mm 'fuzz' all over now. It seems a lot lighter in colour than the deep red she had pre-chemo, but we'll have to wait and see if this persists once it is longer. Both of the girls are fascinated by the process, and can often be seen rubbing the top of Abi's head.

You will also notice that her nasal-gastric tube is out. This was an unplanned consequence of a bout of vomiting over the weekend. We elected to see what happened without it, rather than risk a prolonged visit to the Emergency department to fit another. Luckily, she really picked up her appetite and has been eating enough that her weight has thus far held more or less constant. So far the doctor are happy for the tube to remain out, though she is borderline with the level of fluid she drinks each day. Her kidneys have copped a bit of a hammering over the journey, so they would ideally like her to be having somewhere in the vicinity of 1200mLs a day. This is a big ask, but her tests on Wednesday were all good, so she is taking enough on board at present. Abigail has also bulked up a little, especially in the face, assuming more or less the proportions she had earlier in the year. All together these are really good signs.

The next round of tests will be the first bone marrow aspirate post-BMT on Wednesday. This will allow more analysis of the chimerism levels between her and the donor cells, as well as test for signs of the leukaemia returning. These will likely take some time to come back, so don't expect any news on this for a while.

Still home

Abigail has been home from hospital for over a week now and has finally started settling into her own bed. There have been a few hairy moments, most notably when she has lost her nasal gastric tube while vomiting. This has happened twice now, though thankfully she is becoming more accustomed to having them re-inserted and calms down much faster now after the process finishes.

More worryingly Abi also picked up a bit of a runny nose and cough, but thankfully seems to have gotten over this without a fever or any additional medication. Not unsurprisingly this has coincided with the period where Emily and Dad have gone back to daycare/work and thus we are bumping into a lot more people now. Highlights how careful we're going to have to be I suppose.

Apart from that things have changed little, she is still having supplemental feeds via the NG tube (when it is in) as her appetite is still fairly low. She does eat lots of pasta, so as a result I think we'll be eating spag bol and garlic bread 4 nights a week from now on. She is putting some weight on, so that is the main thing. Her kidney's have improved and there has not been a need for an electrolyte infusion since being discharged, and the rest of her blood work remains pretty good. A slight drop in haemoglobin levels means she might need some more blood soon, though we hope that this will pick up (hence the red meat diet). Other than that she has also had a few issues with apparent muscle wastage in her legs, something not unexpected given the length of time she was confined to a bed. This appears to be easing so we're hopeful that the only treatment for this will be lots of running around after her sister.

I shall try to keep updating the blog as regularly as I can, but in the interests of saving you from lots of 'nothing new posts', you can safely assume that no news is good news.