Jackson is tube free!

Hi Sally,

Thanks SO much for thinking of us!

To be honest, things really aren't going well. We had some improvement for a week or so when we came off the tube, but for some reason we went the other way again.

At the moment we are working hard to get about 500ml per day into Jackson... by working hard I mean we just have to have bottle/sippy cup available constantly and he snacks on it only. Drinks about 40ml at a time - it's terribly frustrating! I don't know why he's changed... he used to do 120 - 150ml at a time, with a 200ml feed in the morning. We've tried not letting him snack but it doesn't work.

As for solids, he still won't open his mouth for the spoon so we give him finger food, which he chews and spits out. We still have a terrible problem with his gag reflex... not sure if it is because he has never had enough practice, or there really is a problem. But every time he has a gag/vomit he is put off swallowing for several more days. Tonight it was a pea... one pea... that he tried to swallow with disastrous effect. Immediately he stopped trying to swallow. It's so frustrating! I am actually going to just do a post shortly about that. I just don't know what to do.

At the moment, Jackson is holding his weight. He's lost heaps (about 700g) but for the last few weeks he's stayed static. So, all the extra calories being added to the milk is doing something, thankfully. But, he needs to pick up on the food to start gaining, which is not happening at the moment. :-( He's eating even less at Day Care too... we had hoped that seeing lots of kids eating would help. The carers find him very, very perplexing.

The most annoying thing is that we just can't keep him well. I don't know if it's poor nutrition, or just being a baby in winter, but he's been constantly sick for months. He's had a rattly cough for about 8 weeks. And then there is the teething too - he's cutting his two upper molars and his two second front teeth. And I am sure some bottom ones must be coming too. None of this helps. It makes it incredibly hard. He's just started day care, and at the end of the first week he's woken up with a temperature... today it spiked at 39.7 degrees! (I was very freaked out!).

There's lots more I could tell you! We're being coached by email by the directing professor at Graz (the Austrian tube weaning clinic featured on 20/20), and she's given some amazing support, but we still haven't cracked Jackson's code. I wish I had $40k to travel there. The specialist help would be amazing.

The threat of the tube going back in looms very large. I am having a rough time and feel sick in my stomach any time I think too hard about things. I cry a lot!! Going back to work has helped somewhat - I miss Jackson like crazy, but we did need a break from each other and I needed a break from the relentless worrying.

So, that's the short version! I continue to have hope that things will improve soon, but sometimes it's hard to see the light at the end of the tunnel.

Thanks for your concern!

Aww hun Im thinking of you. Fingers crossed Jackson wont need to go back to tube feeding

Thanks for your update Laurie but I'm sorry to hear things aren't going as well as you'd like.

I'm sure being back at work is a good thing for both of you, as you mention.

I really hope things improve with a bit more time