Another update

Dear friends,

It has been a while since I have updated you on Bram’s progress. And i am delighted to say he is doing well. In the last couple of weeks we have had appointments with respiratory, endocrinology and opthalmology, and all were happy with Bram’s progress.

Bram is working hard on learning to stand. To help him he is now wearing a lycra suit most of the day as well as leg gators to give him extra support. We can already see the difference. He is able to stand up straighter and longer but still needs to hold on to something. It has given him the confidence that standing up is fun and he does it more often now. We are hoping to see him stand unsupported for a short time maybe by year end. Fingers crossed.

More surgery happened to us, but for a change it was not Bram, but Max. Earlier this month he had surgery to remove some of his baby teeth. Max is just as fearsome as Bram is. He has so often visited Bram in hospital that a hospital is a friendly environment for him. He had no nerves, was proud to have surgery and did not shed a single tear. We are very proud of him.

Some of you might know that over the last couple of years Laura struggled a little bit with her mental health. After Bram fell ill and we went from emergency to emergency she struggled. We both realised this and she took the courageous step to deal with it. It was the first day she left Bram’s bedside to visit her own GP. Our GP was amazing and completely understanding and he prescribed her a high dose of antidepressants and sleeping tablets. When a few months later Bram’s tumour had returned she got prescribed the highest dose our GP had ever prescribed….

These antidepressants, sleeping tablets, counselling, all your support and Bram’s incredible fight helped her deal with struggle. After Bram got home and with him improving all the time, so did Laura. And just over a year ago she started the journey to get rid off her medication. It was hard for her at times, the body gets used to antidepressants and sleeping pills, but Laura was determined. She quite quickly was able to sleep without sleeping pills and reduced her antidepressants. And for the last two months she has been completely off her medication. I am pleased to say this is going really well.

Laura is an amazing mother to Bram and Max. She is Bram’s main carer and with everything that has happened in our lives over the last couple of years, all the emergencies, all the worry about Bram’s uncertain future, she has managed to achieve this. She is incredible and i absolutely adore her. Laura Sengers I love you!

I just wanted to share this with you, mental health is often forgotten about. Help is available, medication does help and with good support over time these battles can be won.

Love,
Jeroen, Laura, Max and Bram

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