10 December 05
Hello everyone, how are you this week?
Sorry I haven't done an update lately but dad has been sorting out a support group website for people affected by VACTERL Association. The site is called www.vacterl-association.org.uk if you get a chance then please take a look at it....thanks.
We have been quite busy lately with allsorts on the go. One minute we are doing stalls at craft fairs, the next we are designing logos for trolley coins. We are trying to raise funds for the support group, with that in mind, if anyone would like some trolley coins they cost £1.50 (plus 50p for P+P).
We put up all the lights on the outside of the house last week and they look really smart.
I have been to hydrotherapy as usual on a wednesday which I enjoy a lot. Its getting to the point where I don't want my floatation jacket on anymore, the trouble is when dad takes it off I keep sinking. I suppose I will get there some time.
Anyway that's it for now as I have another chest infection and I feel really awful so time for bed.
Take care as always
Love
Aled.
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24 November 2005
Saw Dr Gorham today who is my new Paediatrician. He seems to have gotten off to a good start as he diagnosed me as an Asthmatic which my mum has been saying for ages. So I am now on an inhaler whenever I get out of breath.
15 November 2005
Today I saw the Cardiologist at Plymouth, he was pleased with my patch repair of my heart but found that one of my valves his leaking so he wants to keep an eye on that but says that there is nothing to worry about.
13 September 2005
Todays appointment was with the Plastic surgeon at Birmingham children's hospital about my thumb. She was really pleased with the progress and said that she would put me on the waiting list to have my Syndactyly (webbed fingers) split sometime in the new year.
14 July 2005
Today I saw the visiting Cardiac Surgeon from Southampton to check on my heart, they are pleased with it and don't need to see me for a while which is good news.
7 July 2005
Went to Frenchay hospital in Bristol today for an MRI to check my back after the operation, don't find out the results for a while.
16 May 2005
Had an appointment with Dr Allwood today (my main paediatrician) as always he was happy with my progress.
13 May 2005
Today I had an appointment with the bowel surgeon, again she was happy with me but recommended that I use another type of medicine to help things move along instead of lactulose.
12 May 2005
I saw the Urodynamics team today at Southmead hospital in Bristol. The tested my bladder to see if all was working correctly. I wasn't told the full results there but they seemed generally happy with what was going on with it.
24 March 2005
Had an operation today to release my Tethered spinal cord. Apparently it was very tight so if left much longer it might have done some damage.
9 February 2005
Today I had a Pollicization carried out on my left hand. This should enable me to have pincher movement in one hand which will make life a lot easier for me.