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Our Family Stories

Ewan




 
Ewan is 3 and a half and has Full Trisomy 13 (Patau’s syndrome). He has had an eventful year, so we thought it was time for an update.
 
In early December 2017, Ewan crawled for the first time!  The excitement wasn’t to last though as a terrible Christmas delayed his progress. We went on our first week’s holiday to a holiday park in the UK and all came down with the rota virus one by one. I ended up bringing Ewan home after 2 days and went straight to A&E as he wasn't able to keep anything down! 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
It took Ewan 3 months to get over it and he lost over a kilo in weight. He stopped crawling entirely and went back to rolling around on the floor to get around. Through the summer we have been trying to build Ewan up with extra feed and calories. I've tried to keep him away from anyone that was poorly and any public soft play areas. 
 
 
 
Almost exactly a year later, Ewan has started crawling properly again! He's been pulling himself up on the safety gate through the summer and now does it at least 20 times a day. He's always climbing on to the sofa or up at the bubble machine throughout the day. He has never been interested in the TV until recently, but now pulls himself up to reach for the TV all the time too.He's also making fantastic progress in his walker! Beyond proud of our boy! 
 
 
 
Ewan goes to a charity based class, called "small steps "once a week and also sees his fabulous physio once a week. Both have been trying to build on his core strength, which has definitely helped his progress!
 
 
 
 
 
 
Ewan has had numerous hearing tests and all have come back that he is either severely hearing impaired or completely deaf. He has had a few assessments and scans recently and may be able to have cochlear implants early this year!  So excited for Ewan to be able to hear for the first time!
  
Despite trying to always focus on the positives, there have been hard times for Ewan this year too. After recovering from the rota virus, he got pneumonia in March and had his first seizure / febrile convulsion.  He stopped breathing for about 40 seconds! I thought I was going to lose our boy. It was the scariest moment of my life. He slowly began to breathe again and was rushed to hospital. Episodes like this make it feel hard to leave Ewan with others, you just never know when something is going to happen.
 
 
 
  
 
But Ewan continues to amaze us daily with his determination and to be the Superstar that he is.
 
 
  
Ewan's little sister Keira encourages him and they make each other laugh, which is so lovely to watch. She's so loving towards him and covers him up with a blanket when he falls asleep.
 
 

Wishing everyone a very happy and healthy new year!
Ewan and family xxxx
 
 

To follow Ewan’s progress, LIKE his Facebook Page https://www.facebook.com/EwanoursuperstarT13/


Created: 28/01/2019 19:23

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