lots of appointments

Dear friends,

Bram has had a busy couple of weeks with 5 visits to Great Ormond Street Hospital. He is settling in at school and currently attends 3 days a week. We hope that he will be able to attend 5 days a week from June onwards. So far school has been good for him. Bram shows more interest in his surroundings and now crawls though the house. Mainly between his iPad and our television! He is now able to show us when he wants to go to his own bedroom to play, and some nights he gets into his own bed ready to go to sleep.

Medically things have been a bit of hit and miss. Winter is a tough time for Bram. He has had a few colds and that results in him breathing not as good as normal. His latest sleep study showed that he had increased CO2 levels and decreased oxygen saturation levels. His ventilator settings have been changed to aid his breathing and to make sure he is coping well.

Bram also had investigative surgery on his airway to determine its condition. It showed that although the airway is in a good condition it is rather small, and partly obscured by his vocal chords. Another look is scheduled for in a years time. For at least another year Bram will have his tracheostomy.

Bram’s eyesight has been checked, he still has a squint in both eyes, but we are starting to see some minor improvements. As Bram is coping well with his eyesight no treatment is planned for the foreseeable future.

As a result of the radiotherapy on his brain it has now been determined that Bram is hormone deficient and over the next couple of months he will most likely start growth hormone treatment. This will aid his growth, bone density and hopefully his have a positive impact on his neurological health as well.

The positive thing on his health is the most important one of all. His latest MRI scan shows Bram is still in remission. That is him now cancer free for 40 months! A huge relief for all of us.

We have no planned hospital appointments for Bram for a few months now. Actually, Bram’s next hospital visit is a very special one we hope. To meet his new brother/sister when he/she is born in a couple of weeks from now!

Jeroen, Laura, Max and Bram

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