FAMILY FUND

I would like to suggest that our members take a look at the Family Fund website and the Family Fund extra pages.

In the present financial climate you may want to apply for some money towards a family holiday with your trachy child, or perhaps the washing machine has just decided to give up the ghost and there is no money for another one, and washing machines are an essential when you are home nursing.

Take a look. Give it a try. You will find they are very helpful and very accomodating.

I will be putting a full article about the Fund in the next newsletter, but thought some people may like to use the benefits before then.

THERE IS ALSO AN ADDITIONAL DISCOUNT SCHEME FOR STORES LIKE ARGOS ETC.
this is on Family Fund extra.

Best wishes

June.

Weight gain and feeding advice

Hello everyone,

I'm afraid that I'm after more of your fantastic advice. My lo is struggling to put on weight. At 7 months (4mths corrected) she's still only 4.5kg. Although she is steadily gaining weight (120-150g per week) and developing well, with lots of energy, we saw the consultant on Friday and she said it wasn't enough and she wants to give Nadia an NG tube.

She's currently on Infatrini formula milk but is showing signs of wanting to be weaned so I'm seeing a dietican in the next couple of weeks to get advice on how to go about this. I'm hoping that once she starts to take solids in addition to her milk she might start to put on more weight. This really is my last chance. If she is still failing to put on 40g a day the NG tube will definitely be forced upon us.

I know that a lot of trachy babies/children have NG tubes but have heard a lot of negative things about it creating an aversion to taking anything orally, even if the NG tube is just used for top up only.

Has anyone out there managed to avoid the NG tube, despite their lo failing to put on weight quickly? If so would love to hear how you did it!!

Thanks

Sarah x

Humidification

Hi there,

Am looking for advice in terms of room humidifiers. My 7 month old has had her trachy since October and evern since she has come home she seems to suffer from really thick secretions and is permanently wheezy. I use a saline neb on a regular basis but I'm convinced it is the flat that we live in as whenever we go elsewhere she is sooo much better.

I bought a nursery air ioniser a couple of weeks ago but not convinced that it is doing anything so wondered if anyone could make a recommendation.

Hope you can help

Sarah

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