Hi,
Does anyone know whether you can apply for the taxi voucher scheme if you have a child under the age of 1 with a trachy? I know that you can apply for a blue badge due to the heavy equipment that you need to carry around with you, however does the same reasoning apply for the taxi voucher scheme?
Thanks
Sarah x
Tuesday 31 March 2009
Saturday 28 March 2009
Increased Secretions
Can anyone advise if they noticed a dramatic increase in secretions when their child was teething? Billy is really drolling with his teeth and the hyocine patch doesn't make a scrap of difference. The amount of suction he is having has increased dramatically or at least I think it is down to his teething? I was wondering if anyone who uses the trachphone noses has noticed that they have caused more secretions? Billy does seem to prefer them as they are much smaller for a little toddler with a short neck! Just not sure if they are doing him any good. He requires suctioning about every 10-15 minutes during the day but is really really dry at night. If his nose comes off at night he gets sticky plugs and he has had to have a few emergency tube changes. When he isn't teething suction is normally a couple of times an hour.
Many thanks
Denise
Many thanks
Denise
Thursday 12 March 2009
Moving to North Hertfordshire (Hitchin)
Hello everyone
We are hopefully moving to Hitchin in Hertfordshire this year so that Billy (21 months, he has a twin sister too) can be treated at GOSH. He has Apert Syndrome (and a trachy since 16 weeks old) and can only be treated at one of the four Craniofacial hospitals in the UK. I have a few questions:
Does anyone live or have lived in the area with a kid with a trachy and if so what is it like in terms of CNN's, respite, supplies.
What are social services like in the area?
We currently live in Stoke on Trent, where social services (children's services) are one of the worst in the country. It is a constant battle to get anything and has taken us 15 months without respite to get just 16 hrs a month which can only be used during the day. No night time cover at all. And like all babies with trachy's Billy has suffered numerous chest infections with lots and lots of overnight suctioning and far too many weeks in hospital. We use on average 200 catheters a week which again can be double that when he has an infection. We've never had a problem with them not supplying us catheters, so we are hoping that remains the same when we move.
Many thanks
Denise
We are hopefully moving to Hitchin in Hertfordshire this year so that Billy (21 months, he has a twin sister too) can be treated at GOSH. He has Apert Syndrome (and a trachy since 16 weeks old) and can only be treated at one of the four Craniofacial hospitals in the UK. I have a few questions:
Does anyone live or have lived in the area with a kid with a trachy and if so what is it like in terms of CNN's, respite, supplies.
What are social services like in the area?
We currently live in Stoke on Trent, where social services (children's services) are one of the worst in the country. It is a constant battle to get anything and has taken us 15 months without respite to get just 16 hrs a month which can only be used during the day. No night time cover at all. And like all babies with trachy's Billy has suffered numerous chest infections with lots and lots of overnight suctioning and far too many weeks in hospital. We use on average 200 catheters a week which again can be double that when he has an infection. We've never had a problem with them not supplying us catheters, so we are hoping that remains the same when we move.
Many thanks
Denise
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