Post by kimnz on Mar 24, 2005 16:27:03 GMT -5
Hi everyone,
this is Kim from New Zealand. Just an update that we are finally back from hospital. Jordan (aged 6, almost 7) went to Auckland starship children's hospital. He was VERY lately diagnosed (about 6 years old) with Hirschsprung's and the operation was for full removal of rectum and part of his colon.
My little boy had an awful time in hospital with very unpleasant proceedures. It sure was a traumatic time for us all. Unfortunately he got a few high temperatures and the surgeron could not do the full operation. He did a colostomy which we are having lots of problems with leakage with and will perform the rest of the operation in 4-8 weeks time and closeure of the colostomy.
I was so hoping for everything to go according to plan.
Our school is not happy about having a child with a colostomy at school (not that we could send Jordan at present anyway with the colostomy problems) so at present I am schooling him at home, I was hoping for a teacher's aide to help me as Jordan is funded with one, I was told yesterday that it is only for the school. So I am at this stage providing my own materials (apart from a couple of readers and a tape which the school gave me to borrow). I am hoping that we may be able to get on to "hospital schools" at least that way I would have some support.
Despite the above, our Jordan is still a happy little boy, and still eager to learn and be involved with everyone, we love him so much and at times like this you wonder what life would be without him.....is sure wouldn't be easy.
They seem to think he also has something (just picked upon xray) called hemi hypertrophy. I noticed that he has one palmer crease on one hand and a normal crease on the other, same with his foot. This has an association to renal tumours....they scanned him and he hasn't got them but I believe it is something that has to be kept an eye on.
Jordan started off with a hiss, bang and roar, walking at 15 months old, tryint to talk early on and very interested in learning. We seemed to have got away with some of the other problems that little ones with ds have. Then it was like we were hit with the rarities....Perthes, Hirschsprungs, hemiypertrophy etc.
We now have to have "markers" done for coeliac disease. I know we have had this before and it came back negative so I am unsure why they would be doing it again.
Still smiling.........Jordan and Kim NZ
this is Kim from New Zealand. Just an update that we are finally back from hospital. Jordan (aged 6, almost 7) went to Auckland starship children's hospital. He was VERY lately diagnosed (about 6 years old) with Hirschsprung's and the operation was for full removal of rectum and part of his colon.
My little boy had an awful time in hospital with very unpleasant proceedures. It sure was a traumatic time for us all. Unfortunately he got a few high temperatures and the surgeron could not do the full operation. He did a colostomy which we are having lots of problems with leakage with and will perform the rest of the operation in 4-8 weeks time and closeure of the colostomy.
I was so hoping for everything to go according to plan.
Our school is not happy about having a child with a colostomy at school (not that we could send Jordan at present anyway with the colostomy problems) so at present I am schooling him at home, I was hoping for a teacher's aide to help me as Jordan is funded with one, I was told yesterday that it is only for the school. So I am at this stage providing my own materials (apart from a couple of readers and a tape which the school gave me to borrow). I am hoping that we may be able to get on to "hospital schools" at least that way I would have some support.
Despite the above, our Jordan is still a happy little boy, and still eager to learn and be involved with everyone, we love him so much and at times like this you wonder what life would be without him.....is sure wouldn't be easy.
They seem to think he also has something (just picked upon xray) called hemi hypertrophy. I noticed that he has one palmer crease on one hand and a normal crease on the other, same with his foot. This has an association to renal tumours....they scanned him and he hasn't got them but I believe it is something that has to be kept an eye on.
Jordan started off with a hiss, bang and roar, walking at 15 months old, tryint to talk early on and very interested in learning. We seemed to have got away with some of the other problems that little ones with ds have. Then it was like we were hit with the rarities....Perthes, Hirschsprungs, hemiypertrophy etc.
We now have to have "markers" done for coeliac disease. I know we have had this before and it came back negative so I am unsure why they would be doing it again.
Still smiling.........Jordan and Kim NZ
If there are any resources here we can help you with, let us know. Do you have a lending library for specialized needs in your school area? We have those here and they are a great resource.
&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
