Feeding therapy - Day 7

A good start to the week ahead. We were on time for our first appointment (ever).

A view from the hospital.

Some OT to start the day then. Lilian first did her trick of emptying a box of dried beans into a smaller box. Sometimes back again, sometimes across the floor and sometimes into our hands. She loves it and is sooo getting a box of beans for Christmas. Next up was the indoor swing. She just loves being swung about and is getting pretty good at maintaining her balance. The OT is very pleased with Lilian; high five!

Next some physio. Lilian hates physio. She is like her Mum in this respect. I'm sure Mette has told Lilian that if you start to sweat then it's your body telling you to stop! However, Lilian has made massive steps forward compared to last week. For example, she no longer cries all the time, she spends most of her time on her tummy and she wasn't sick everywhere. She also tries her hardest to get toys herself instead of asking Mum/Dad to do it for her. In one week such progress is fantastic.

The play picnic as usual was at noon. Oskar had some potato/carrot/meat purée on his tummy and Lilian licked at a mixture of custard, mashed potato and chocolate. No real difference to the last session on Friday but then again the next step is for Lilian to eat/chew/swallow so it's quite a big step she has to take.

A quick nap before speech and language.

A quick visit to the pharmacy and a sleep and then the last session of the day; some mid afternoon speech and language. Again nothing much new here but we did try drinking from a big girls bottle and enjoyed emptying a big packet of crisps into everyone's hand apart from Daddies; an enforced diet for Daddy then.

We managed to speak to some of the medical staff to discuss our concerns and answer some of our questions. We had a really good conversation with Eva who takes Lilian for Physio and also runs the play picnics. Our main query was based around what we're actually doing day in and day out. When we started the course last week we didn't really have a sit down meet outlining how it'd all work. We sort of jumped straight in. We were right to ask the question as all parents feel like this. We both came away feeling much more reassured and confident in what we're doing. Plus Eva really praised Lilian for the progress she has made. Maybe Eva sees it more as she can spot the cues better than us. We know Lilian was doing well but hadn't realised quite how good she really is. Double high five. Make it ten!

This is how I understand it. Essentially Lilian is the boss. We're going to help her with some physio and OT sessions and also try to "show" her how to eat at the play picnic. But the big point is Lilian is having her daily milk reduced to get her to start to feel hunger for the first time. Tube fed kids are essentially always full up. They stay topped up day and night on heavy milk. They never feel hungry and don't have to work for food hence they become "lazy" with eating. Who can blame them?!? By slowly reducing the milk and emphasising eating through play picnics you try to bring the child around to wanting to eat for themselves to satisfy that hungry tummy. I don't think you can expect to leave after three weeks with a tube free child but you can certainly work towards leaving with a child who might take bite size chunks of some food and maybe drink from a cup. You then build on this from home and over time wean them over to feeding themselves. Then you book in the day to have to tube removed for good! Some kids take longer than others but this programme gets them onto the right road.

One thing that we were worried about was Lilian's weight and her getting too tired to take part in the sessions properly. The weight has gone down but not too much. You have to expect this as she's getting less milk, almost half her normal amount. We weigh her daily to keep it in check and the dietitian and other medical staff monitor the figures. The tiredness thing is actually the reverse. Lilian normally wakes up at about 5:30 plays by herself for a bit then wakes us up 5 minutes later. A mid morning nap at 10 and then she's good until late afternoon. Here she sleeps in until about 7 and goes through to the afternoon without a nap. Eva explained that tube fed kids are more lethargic as they are always full. Do you feel sleepy after a big meal? Fancy running on the spot for 10 minutes? Thought not. Reducing the milk actually brings the kids around a bit and they become more active and less sleepy. Anyway, Lilian has and we love it. Another thing to consider is that as the overnight feed has reduced Lilian can now sleep better. When on the pump she'll not sleep for more than an hour at a time due to reflux etc. This ruins her sleep (and ours) and makes her tired in the day. Now she sleeps through from when the pump is switched off at about 2am. Mette hasn't slept through the night for nearly two years. I wake up too, just in case you were wondering :-)