When Joshua was born we thought we had a very healthy boy on our hands. Until he continually slept and was constantly sick from his milk. As Joshua grew it was apparent that he wasn’t hitting any milestones. He couldn’t sit, he couldn’t stand, he had managed to say Dadda but then stopped making noises completely.
After over 20 trips to the GP who advised me Joshua was just a lazy boy. We had his one year assement and didn’t hit any of his targets.
After this appointment I thought enough is enough someone will help us and we went to Birmingham children’s hospital. After assessing Joshua they realised after 10 minutes something wasn’t right and admitted him to hospital for over a month. (We was discharged for 3 days in between) They informed us our little boy could potentially have a life threatening, life limiting or life changing illness. After many tests they were still none the wiser why my happy little boy was so floppy. Joshua spent his first birthday in hospital surrounded by hospital staff and his new found friends.
Joshua is now 2. We are still under going tests and are under the umbrella Swan- syndrome without a name. He has achieved some skills like sitting, standing with Intense Physio, special shoes and standing frames. We are on several different studies and projects to rule out what could be causing Joshuas problems. Fingers crossed we will get the answers we need to help out our happy little boy!