16 September 2006
I cannot believe that it has been so long since my last update, my dad is really slacking.
How am I? Well to be honest I am okay at the moment, the last couple of months have been good, the medical side of things has been quiet except for an appointment with the renal consultant who increased my medication for my Neuropathic bladder. I saw a joint Plastic/orthopaedic team of consultants on 12 Sept to see what can be done with my right arm, as I have no elbow my bones rub together and ache at times. They said that there is nothing that they can do to improve my arm and that to straighten my hand would reduce any use that I currently have, so that is out of the question as well. I think my mum and dad are fairly happy with the outcome but are a little worried about how my arm will cause me trouble in the future.
I had a really good holiday last month, I went to South Holland for two weeks with my mum, dad and Grandma. We stayed in the caravan which was great, the only down side was that it rained every single day bar one. Luckily the rain didn't stop us from doing much. We went to Dusseldorf and while we were here, mum bought me a Steiff teddy, I have called him Dusty from Dusseldorf. Mum took a liking to one particular shop, they sold lots of jewelry the only problem for mum was that there was a security man on one side of the door and another on the other side. It turned out to be a Cartier shop so no wonder mum took a liking to it, I think dad went a bit wobbly at the sight of some of the prices.
I made a message in a bottle before the summer holidays so while I was on the ferry from Calais to Dover I threw it over the side of the ship, So if you see a green bottle with a message inside please let me know......thanks. I started back to pre-school last week and I am really enjoying it. The teachers are great and I get to play with all sorts of toys. It was my birthday on the first of September and I am now three years old, I had a great birthday, with lots of great presents including a Power Ranger costume which I really love. Thanks to everyone that sent me a card and gifts. Anyway thats it for now, I will try and keep the site a bit more up to date.
All my love
Aled
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21 June 2006
Hello everyone, thank you for taking the time to visit my website. Well what have I been up to? Well, quite a lot actually. here is a medical update:-
I saw the second Opthalmist who has said that my eye sight is okay and that if I do have a squint then it is of no worry. That was good news, I see her again in about 4 months to be re-tested.
About 6 weeks ago I saw a Renal Consultant from Bristol childrens hospital because mum and dad have been concerned over my ability pass urine. He has diagnosed me as having a Neuropathic bladder which is obviously bad news but at the same time it is good because at least we know where the trouble is.
The Neuropathic bladder is caused by an interuption of the messages going to the brain from the bladder and vice versa, because I have spinal issues it is more than likely that they are to blame for the bladder side of it.
I was put on some medicine which would help me control the bladder a bit more and after a month I had some tests to see if I was retaining any fluid in my bladder. (This fluid retention is bad news and if it happens you need to be catheterised every 3 to 4 hours during the day to ensure that the bladder empties).
As the tests progressed it looked quite bleak for my mum and dad, the nurse doing the tests told my them that they would more than likely have to catheterise me. They decided to have one more go of sitting me on the potty and this time I had a big wee, they scanned my bladder and found that it was empty...........Brilliant news.
So the outcome of that was.....I will remain on medication and not need catheterising, at least not at the moment. At the moment I am on holiday with my Nan and Granddad, so mum and dad are having a quiet time at home. No doubt missing me. Anyway, I will update again after my holiday, hopefully with some photos.
Take care speak soon.
All my love
Aled
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26 May 2006
Todays appointment was with the surgeon who carried out my pull thru. She is happy with my progress and hopes to start bowel management in about a years time.
05 May 2006
Today I saw a renal consultant from Bristol Childrens hospital, He diagnosed me as having a Neuropathic bladder which is bad news, but at least we know why I have been having trouble.
23 April 2006
for a while but we went on holiday just before the last update was due. We got back the other night after two good weeks. We went to Paris for a week and while we were there paid a visit to Disneyland. That was brilliant as I saw Buzz Lightyear who is my hero, I had a photo taken with him and it looks really good.I also had a go on the new Buzz lightyear ride which was cool, I managed to shoot loads of aliens and even had a higher score that dad.
If you need to know about toilets in France then the wicked witch of wallasey can tell you all about them. Poor Grandma was really poorly for a few days so she didn't get to see much of Paris. After 5 days of France we packed up the caravan and moved to Almere in Holland. The campsite was nice but a bit water logged which caused a bit of a panic when they couldn't move the car or caravan due to the mud.
We had a good week travelling around Holland, I had my photo taken dressed in traditional Dutch costume, mum says that I look really good. My health seems to be okay at the moment, I have had a few asthma attacks which have worried mum and dad but otherwise things have been good. I had an appointment with the orthopaedic team in Plymouth on Monday, he was pleased with my pelvis and said my scoliosis didn't seem to be progressing (good news).
I had an eye test on Tuesday and they weren't sure if I had a squint or not so I will be retested soon. Mum and Dad are selling some trolley coins to raise some money for the VACTERL association support group. If any one would like some please contact my mum or dad....thanks Anyway thats it for now, take care, speak soon.
All my love
Aled
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26 March 2006
seem to be in the grips of a cold at the moment so lots of sneezes and runny noses around the house. My check-up with the plastic surgeon went well. I had an infection in the skin graft site on my hand so I was given some antibiotics by the gp which cleared it up, but we went to see the surgeon earlier than planned in case it had been affected in some way. She had a good look at my hand and was pleased with the results. She also talked about the elbow (or lack of one) on my right arm, we are seeing her again in September with an orthopaedic surgeon to see if there is some way of making me an elbow. We wait and see.
Grandma (aka Wicked Witch of Wallasey) has been staying with us for a long time (well a few weeks) and has been tracing her family history. This has proved to be very informative and caused the occasional stir because of the results. She went back home last week but is due here again in a little over a week as we are going on holiday with her to Holland.
We had an interview with our local newspaper last week who did an article on me and the support group that mum and dad have set up in the UK. We also had a radio interview a few days later which mum did. She was a bit embarrassed about it but did a very good job.
This week I had another bad asthma attack, we think it was caused by the onset of the cold. It proved to be a right nuisance as mum was minutes away from leaving for work when I vomited all over my bed. That is a great sign of me having an asthma attack. It took a few days to get over it but now I am fine, except for the cold that is.
Mum and Dad are selling some trolley coins to raise some money for the VACTERL association support group. If any one would like some please contact my mum or dad....thanks, anyway thats it for now, take care, speak soon.
All my love
Aled
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4 March 2006
I went back to have the dressings removed from my fingers last week, it went really well as I didn't have any anaesthetic (the surgeon normally takes the dressings off under a general anaesthetic) because of a hospital mistake. The skin graft seems to have taken okay and the fingers look okay, just a bit red and swollen. I have to go for another check up in about 3 weeks, hopefully they should be all sorted by then.
I had a session with my Ot and PT this week, the physio seems to think my ankles need to be seen a Peadiatrist to get an experts opinion. I have also been diagnosed as aneamic so I am now on iron supplements. Mum and Dad are selling some trolley coins to raise some money for the VACTERL association support group. If anyone would like some please contact my mum or dad....thanks, anyway thats it for now, take care, speak soon.
All my love
Aled
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24 February 2006
I had the dressings removed from my right hand today, they look a little sore but the surgeon seems happy with my fingers.
10 February 2006
Had the Syndactyly split on my right arm today so I have my arm strapped to my body for the next couple of weeks.
21 January 2006
I have had the date of my next operation, it's on the 10 Feb. So not long away at all. This one is to split the syndactyly or should I say my two webbed fingers. This will involve a skin graft but hopefully it will improve the function in my right hand. Since my last update I have had another chronic asthma attack, luckily I stayed out of hospital but only just. I have had a small attack since then but luckily mum and dad are starting to recognise the symptoms and seem to be treating it right.
I went to a christening last weekend and had a great time because they had a party afterwards and I love parties. I got to see all the family again which was cool as I don't get to see them that much.
On saturday mum and dad celebrated (well mum called it celebrating, dad said something else) their wedding anniversary, 17 years......well done to you both.
On thursday it's mums birthday, 21 (+19) again. Hope you have a lovely day mum, anyway thats it for now, take care, speak soon.
All my love
Aled
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16 January 2006
Visited my new Paediatrician again today. He increased my Becotide today after having an attack a few days ago. Mum and dad also voiced their concerns about my ability (or lack of) to wee.