Friday, 16 December 2011

Feeding therapy - Day 11

Yay! A happy day and the end of week two. One more to go then back to Blighty. Actually we're coming back late afternoon on Christmas Eve. We've done zero shopping and have no pressies for anyone. Even our own kids. Maybe I should buy a job lot of the RyanAir calendars on the plane? I know my Dad would like a copy as he found it difficult to check flight details on their website earlier tonight as he kept getting distracted!

We kicked off today with some speech and language. Really concentrating on the finger syringes now. Next was some music therapy which was pretty nice. Then some physio before the play picnic at noon. Phew. Busy day and not much difference to report from earlier in the week but we're getting there/somewhere I'm sure.

A big difference mentally to make us happy though. We were never quite sure where Lilian was going with her therapy and felt a bit lost and confused. Even though we're at the end of week two we weren't sure of the current goal. Yesterday was pretty hard and I think we both felt very depressed and upset. Today, during physio, we had another great chat with Eva and got some good clear answers on where we're going. The goal is to migrate Lilian from feeding via her tube to feeding via the finger syringe. Then we move onto spoon feeding and lastly normal every day feeding. We've got to keep with the same flavour each time so she remembers the taste. The milk and water need to drop some more to make sure Lilian associates hunger and being fed. This will happen early next week and we're going to stop feeding Lilian on the strict schedule we've become accustomed to.

One thing to bear in mind with our care for Lilian is that she is a pretty complex little thing with 21 different medical departments currently looking after her. Back in the UK Mette has pretty much daily appointments which are all medical in nature. A majority of her care has been dictated to us by Doctors and not by nature. We're learning so much new stuff from Oskar which we've never done with Lilian. Different feeding cues and behavioural aspects are just the start. As we're so busy with the medical stuff we tend to become blind to the child. We need to step back from the medical and look at what Lilian is telling us. If she is hungry we'll try the syringe or some sugar water. If she's not then we won't. Before we'd just pump milk in regardless of how Lilian felt about it according to out strictly controlled schedule. Living by a schedule is probably okay if you're still tube feeding or have issues with weight but we're trying to get rid of the tube here so living by the clock and scales isn't going to work. It's not easy to let go of this (not the tube you understand!) as it's been our life since Lilian was born nearly two years ago but we know it's for the best and we have great support from the excellent professionals here in Graz. Lets just hope we can stick with it.

One last thing. As I knew I wasn't going to be in the office for a while I took the opportunity to let my face get hairy and not shave. I ended up a bit like this so have taken the razor out tonight to bring back my youthful good looks. A colleague at work goes for this look but my facial hair is a mix of blond and auburn. Almost a strawberry blond you might say. Some other work colleagues might differ and claim ginger but they are misguided ;-)


Ida said...

Lilian is a lucky girl having such great parents! You both are doing a great job. No matter what happens with this trip I'm sure she will gain a skill or two or three! Even if its not sure the goal you are hoping for will be reached.. but then you have at least tried. Big hugs!

shoshana said...

I love reading your blog.
Our Austria blogs are almost identical. It is great to read and feel exactly what you are going through and to know that we are not alone.
Eva was our rock too. She held us together 100%.
Since Austria we too have taken a step back from listening to the 'medical world'. We are stronger (husband and I) when it comes to decision making for our daughter. We love having many different opinions about one topic when it comes to her care, as we can then select the one we like best (or none) and we know we are doing the right thing.
We couldn't do that before Austria. They gave us the strength to be parents for our daughter. It is a great place to be!