10 December 2004
Saw the Neurosurgeon today about my problems connected with my spinal cord. The N/S has said that he will do the operation to untether my cord sometime in February or March.
15 November 2004
Today I saw the Orthopaedic consultant who had an xray of my hips done. He said that they looked in real good condition. We mentioned that I have one leg shorter than the other but because it was only by 10 mm then they would just keep an eye on it.
24 September 2004
Had a renal ultrasound today to rule out bladder problems, everything seems fine so I need to get another MRI to check for spinal cord tethering.
18 August 2004
Today I had the operation to reverse my Colostomy (second stage of the Pull-thru). This is going to drastically change my life as I have had a colostomy bag since birth.
14 July 2004
I went to see the Audiologist today for another test which I can say I passed with flying colours. So that finally puts that one to bed ......Yippppppeeee
9 July 2004
Saw the Neurosurgeon from Frenchay hospital in Bristol about my MRI results. He said that I have a fatty Filum which could point to a tethered spinal cord. He doesn't want to operate until I have another MRI in twelve months time, this is because it could put me at risk of infection etc and considering I have another two operations before Christmas we can understand. He also told us that I have got some abnormal vertebrae but we aren't sure how this will affect me. He mentioned the Scoliosis but said that this should be a matter for the orthopaedic team (even though a tethered cord might result in curvature of the spine).
17 June 2004
Had an appointment in Bristol Childrens hospital today for a review of my first stage pull-thru. All went well and surgery is looking good for the middle of August.
9 June 2004
I had yet another hearing test today, it wasn't conclusive so I have another one in July but things look fairly good for both my ears. The only real problem appears to be that I am slow in responding to sounds on my left side.
21 May 2004
Today I saw the Paediatrician who coordinates my care and generally looks after me. He said that the results of the MRI show no signs of spinal cord tethering but does show signs of Scoliosis.
14 May 2004
Saw the Surgeon who carried out the first stage of the pul thru today, she is also really pleased with my progress and has increased the size of the dilators. All is looking good for my second stage operation on the 17 August.
13 May 2004
Saw the Cardiac team for a review today, they are really pleased with my progress. There is still a small hole above my patch but it is really, really small. They don't want to see me now for another year which is really good news.
11 May 2004
Saw the Plastics Consultant at Birmingham childrens hospital about my right arm. She explained that because I do not have an elbow it would be pointless straightening my right arm because it would leave me with reduced movement which would mean I would get less use from it. They did however decide that they would make my first finger into a thumb on my left hand, all going well it will be done in December which hopefully means a thumb for Christmas.
30 April 2004
Went for a hearing test but because I have had a cold my ears are a bit blocked so they couldn't do the test, I now have to go to another hospital for another test in June.
20 April 2004
I had meeting with a lady from Plymouth portage which is a home visiting service which helps parents/carers to teach children who are developmentally delayed. Because I have problems with my hands and right arm I will inevitably be delayed in some aspects of my development. The service is for a maximum of two years normally from the first birthday. Hopefully my sessions will start at home in September this year. The sessions are play based which should be good.
15 April 2004
Today I had a review at Bristol Childrens hospital to enure that all was well with my bottom. Today also means the start of dilation of my bottom.
5 April 2004
Had an MRI of my back to see if my spinal cord is tethered or not. I won't get the results until I see my Paediatrician in a few weeks.
30 March 2004
Today I had the first stage operation of my Pul-thru. This went well and the second part
of the operation takes place around july or August 2004. Apparently that is a more stressfull because I won't be able to eat until I have dirtied my first nappy which may be a few days after the operation.
22 March 2004
Went to see Mr Jeffrey (Orthopaedic consultant) at Derriford hospital about all my orthopaedic problems. He says that my Sacral sementation appears to be of no real concern just yet but it may prove a little awkward later on with possible bladder problems and trouble with the nerves in my feet due to the spinal cord being pinched within the spine.
Mr Jeffrey is also acting as a go between for organising my appointments at Birmingham and Exeter, that way the amount of travelling may be reduced or at least kept to a minimum.
11 March 2004
I received a letter from Bristol Childrens hospital today saying my operation had been changed and actually brought forward a week. So I go in to have the first stage of my Pull-thru on the 29 March and have the operation on the 30 March.
05 March 2004
Had the results from the scan of my kidneys in January, They where as expected.....The right one doesn't function but the left is working as normal.
4 Feb 2004
Today I went to a cardiac clinic in Southampton where I had a scan of my heart to see how it was mending after my operation. I saw a few of the nurses who looked after me while I was there during my first few months, They couldn't believe how much I had changed since they last saw me.
The consultant was really pleased with my progress, I still have a hole in the heart but it's only a small one now which shouldn't make any difference to me. My next appointment with them will be in Plymouth in about 3 months which will be easier than going back and to to Southampton.
29 Jan 2004
Had an appointment at Bristol childrens hospital about my bowel and bottom. They have booked me a bed for the 6 April so that I can have the first part of my bowel resighted and then in another 3 months or so I can have my Stoma reversed and i will be able to make dirty nappies for the first time.
28 Jan 2004
Had an appointment at the Royal Devon and Exeter hospital about my right arm and hand as well as my left hand. They are going to refer me to another hospital (possibly Birmingham or Liverpool) where hopefully there is a specialist who can make me an elbow. This will then allow my hand to be straightened into a more normal looking position, and more so to make my arm a lot more useful than it is at the moment. Hopefullythis will happen before I am 18 months old.
My left hand will have my first finger altered and made into a thumb which will be brilliant.
27 Jan 2004
Back to Derriford hospital again today for a check on my hearing, My right ear is good but my left has to be retested in a few months because the results where marginally under the pass mark, hopefully that will be because I was a little snuffly which doesn't help
26 Jan 2004
Went to Derriford hospital for a scan of my kidneys to see how they are doing. They put a cannula into my foot because they couldn't manage anywhere else. Then they put some radioactive dye into my blood to see how my kidneys cope.
I don't get the results until March