Looking back

Dear friends,

With only a few hours left this year it is time to look back. Bram is continuing his good progress. He is still practicing every day to learn to stand. With the aid of his standing frame or something to hold on to he is now able to stand up by himself as well as able to sit up himself now. We are practicing learning to stand unaided and learning to walk every day and we hope that 2018 will be the year we can celebrate these achievements.

He is less dependant on his ventilator, and has completely lost the supportive oxygen he needed for such a long time.

He had surgery 4 times this year, twice emergency surgery to fix a broken vp shunt and once to change his fixed feeding line to a removable feeding line. And only last week his Botox surgery to hopefully stop him drooling so much. It is probably a bit early to say if the botox has worked, we keep our fingers crossed.

Bram got a completely updated bedroom, with a new big boys (floor)bed! as well as his own chair and standing frame for in the living room. And early in 2018 we will get a stair lift installed in our house to help us save our backs while carrying him upstairs. Also we are currently finalising plans for Bram to start school in September 2018. How exciting!

But by far the most important thing about 2017 were the 2 clean scans he has had. He remains in remission and we can continue dreaming that one day Bram will be considered cured of this horrible disease.

We would like to thank everyone for their ongoing support. It makes Bram’s battle a little bit easier for us! And a big thank you to Bram for always fighting, for never giving up, for inspring us every day and for making us believe you will overcome everything that has been thrown at you. We are so proud of you!

Happy new year! Have a wonderful and healthy 2018!

Jeroen, Laura, Max and Bram

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