Dear friends,
Bram spend another night in Great Ormond Street Hospital last week. This was a planned admission to have a sleep study done. For the first time in more than a year Bram slept the whole night without needing extra oxygen. It shows to the medical team that Bram’s respiratory system (his breathing) is improving.
The decision a couple of months ago to use a ventilator at night is starting to pay off. The medical team has authorised us to start to try to get Bram completely off oxygen when awake over the next couple of weeks! This will be a stepped process, so far we have been able to reduce his oxygen requirement by 50%, from 1 liter to 0,5 liters a minute. Hopefully before the year is over Bram will be able to be without oxygen for parts of the day. Exciting times.
Bram is also very busy trying to work out how to stand up. Sitting alone is not enough for our hero. It is a challenge for him but he is so determined as you can see in the photo. Nothing will stop him.
Love,
Jeroen, Laura, Max and Bram
