HemiHelp: How We Arrived Here... - HemiHelp

Hmmm, where to start...

We had Jed, then had Imogen and when Imogen was 5 months and Jed 19 months, we moved to Kyrgyzstan. We loved it, was all going well and we were very settled there until Imogen's arm stopped working....

In December 07 we were coming back to the UK for a 6 month visit and rest with flights booked to return to Kg in May 08. Just before we left for the UK I had noticed that Imogen's speech was a little different, but she was hearing 3 languages every day adn I just figured that she was a little confused. Then her toiletting went backwards and she wet adn soiled herelf a few times, but again when a child is 3 you think it is just a phase. Then one day we were walking along the road and I was telling her to hold my hand. She said "I can't Mummy" and when I looked her index fingure and thumb on the right were not working properly and wouldn't bend. As soon as we were in the UK again we saw the GP who was just going to send us to the plastic surgery dept! A friend of ours who is an opthamologist consultant was the one who said, very strongly, that we had to go back and ask for a neuro consult. We did and within 2 weeks we were at the John Radcliffe having an MRI. It was very worrying to meet the doctors up the levels and for each one to be more concerned than the last!
After the MRI the consultant told us that he had thought that she had a brain tumour but was glad to find that she didn't!! On the first MRI they saw nothing, so then followed a whole range of tests; lumbar punctures, bloods, endoscopies.... After the 3rd MRI they finally saw some damage which, with hindsight they think they could see on the first too.
During this year and a half we kept thinking that we were going back overseas. My husband had to go back a few times to take care of work there and Easter 09 we all went back to see what medical provision we could find there. We had a great trip and felt that we could return in August. However, shortly after we got back to the UK Imogen started having seizures. The time since then has been taken up trying to find the right medication and we finally came to the conclusion Aug 09 that we had to settle here in the UK again.
So we had yet another move as we changed job and moved to Derby adn started new schools, but we cna finally know we are in one place for a while.

In some ways schooling and statementing has been easier for us because we worked from the top down rather than climbing up from the bottom. By the time we got to the point of putting the kids in school in the UK we already had been in the medical system for a while and I knew that Imogen was going to need a statement. The school was very supportive and I applied for the statement with the support of the school. I sent in every report from every health professional I could muster plus a evidence from the school and ed psychologist and a very detailed report from us as parents. The school were fantastic as far as us working on the same side to get what Imogen needed. Imogen's reception and Year one teacher were both amazing and she had the best possible start to school despite still finding it hard. She has been through a lot of transition; moving country, home, leaving animals, changing dominant side on her body (she was dominant right before the hemiplegia hit), changing school.....and I am so proud of both her and Jed and all they have managed in their young lives.