Day 13 - Delayed Intensification

My day started at 3:30 with Caitlyn waking up and wanting a bottle. Lately she has been sleeping through the night usually until 6:00 or 6:30 in the morning, so it was a bit of a shock to the system. Then at 4:00 I stumbled back to bed. Then at 5:50 Caitlyn woke up again and at first decided that I would just leave her a little to see whether she would be happy to amuse herself for a while, but then I got Bianca waking me up "Caitlyn is awake, she needs you".

Then Bianca wanted breakfast "I want a hotdog with bread please" (meaning I want cheerio sausages [little cocktail ones] on a slice of bread and the bread folded in half with some tomato sauce in the middle), then "now I want a triangle sandwich with marmite, please" (a slice of bread with vegemite and then cut into small triangles). Next it was "now I would like a ball of cheese please" (basically she likes grated cheese squashed into a ball - I wasn't very successful so it was mostly just grated cheese on her plate).

Having been through 4 nose tube insertions, moments like these make you very happy because if she is interested in eating, then she is more likely to maintain and again weight and less likely to go through another nose tube insertion - which is totally horrible and traumatic to experience. I think we have now reached the bigger appetite stage of the steroids, although her mood is pretty much the same.

Today we went to the Polyhigh Christmas Party. It was her old day care and they held it at Aotea Lagoon, close to where we live. At first the weather was pretty cold and windy and I thought they would cancel, but by the time we got to the venue it was a nice sunny and warm day.


Bianca saw two of her friends, but wasn't too much in the mood for playing. So she ended up sitting with me most of the time. Father Christmas arrived and the two girls each got a little something. Of course Caitlyn had no idea what was happening, but it was quite exciting for Bianca to get something.
It is moments like these that you realise just what Bianca is missing out on. She isn't as close to some of these friends as she used to be and nowadays it takes her a while to get comfortable with her environment and the people before she will feel confident enough. So it has pretty much become isolated to some extent with less risk of infections and hospital stays vs social interaction the way it used to be but with really high risks of infections and extended hospital stays. Either way, the end result is usually isolation. I am hoping that as soon as we are through with the intensive phase and once we are on maintenance that we can start incorporating normal things again like ballet lessons and school when she turns 5 and so on.

Bianca was a bit tired and not too long after this we left for home. Arrived home and Bianca was back on the couch with her pillow and blanket and watching Winnie the Pooh. Eventually she fell asleep and had a bit of a nap.
When she woke up she asked to taste some honey (having seen Winnie the Pooh eat honey), but she didn't want it on a slice of bread so I just put a bit in a teaspoon for her. She then said, "I want a whole pot of honey" and we eventually settled on another teaspoon.

Medicines today:

• Dexamethasone - 3.5 tablets in the morning and 4 tablets at night
• Fluconozole - 10ml at night