Thursday, April 7, 2011

Clinic Update April 2011

Today we had Craig's parents come with us as we had a genetics appointment after clinic, but more about that later.

Ruby is starting to become more aware of these visits and she seems to know what is about to happen. As normal, she was very happy on arrival, and we are always greeted with cries of "here's Ruby!" The staff there are very friendly and genuine and are always commenting on how well she looks. Of course, Ruby encourages this behaviour by beaming at them all.

She was weighed, and then measured, and that's when she started to get suspicious. She really fought hard about being laid down for a length check and had quite a loud sook about it.

First up was the dietitian, which is the main reason we go monthly. I really like out dietitian Christy. Even if we don't agree on some things, I always feel I can argue my points and we often come to compromises. Ruby got full marks for being a big eater and liking all types of food. Christy was happy about the weight gain, but still wants her on the strongest mix of formula until her weight catches up with her length. She know I'm not happy about this. We talked Creon and fat content, food ideas etc etc.I tentatively mentioned to her that I made a point of giving Ruby Hydralyte to drink everyday, wondering if I would get told off. But she was happy I was doing this and told me I don't have to be so strict on adding salt to her diet now that I am going this. Yay for me!

Then we had a sputum test, which I found out later is pointless when she is on Bactrim (grrr). Obviously, this is never fun, but it was over quickly. I couldn't help but admire how Ruby maintained direct eye contact with the nurse whilst crying very loudly at her...if looks could kill.   (I wanted to take a photo but thought I would look like a bad mum)

Ruby's respiratorist wasn't there today so we saw the fellow instead. She asked all the right questions and listened to her chest. All clear! I also asked her to check Ruby's heart as I had been told previously (when we were admitted to Gosford hospital) that she has a systolic heart murmur. But she said all sounded normal.

By the end of it all, Ruby was crying whenever anyone looked at her for longer than 2 seconds. She even cried when I changed her nappy, I'm sure she was waiting for something unpleasant to happen. This is why I want to try to space these visits out as much as possible. I don't want Ruby to feel unsafe and scared, even if only for a day. 

So we will be going back in 4 weeks. I actually pushed for 2 months and they compromised with 6 weeks, but there were no appointments available, so 4 weeks it is...

So that was Ruby's visit. Now about me! I have a circle of Facebook friends who are CF mums. I surprised myself by becoming close to people I have never met. Is this how Dungeons & Dragons players feel? Anyway, I got to meet one face to face today! Only very briefly as her and her beautiful daughter were in isolation, and it was a bit tricky with my in-laws there also, but it was still exciting!

1 comment:

Anonymous said...

Lovely update and another tonne of achievements Sheehans, good on you all. Ruby IS amazing and so are YOU xxx