Yesterday I went to the Princess Maxima Center and the WKZ  with Nienke for further testing and to have all the last conversations before her surgery. It was a tough day. We had to go back and forth between the two hospitals a lot. Fortunately they are connected by a beautiful covered bridge with colored glass. At the very last minute we thought of taking Nienke's scooter with us. She had loads of fun scooting to all of the appointments. 

Four years ago a tumor was found in Nienke's abdomen. A ganglioneuroma. Nienke was so ill at the time because of her ROHHAD that we didn't pay much attention to it. The oncologist told us that it is most likely benign and therefore did not have to be removed.

Today we celebrated Nienke's 7th birthday!!! She has been counting down the days. Busy making wish lists, coming up with treats, baking cakes and all the other fun stuff little girls do around their birthday. It was so much fun!!

Although the blog has been quiet lately, a lot has happened "behind the scenes". Nothing serious luckily. On the contrary. Lately, things have been going quite well for Nienke. As every year, she is stable now springtime is here. Of course she continues to need a lot of care, but the symptoms are most severe for her in the colder months. The last time Nienke was admitted with a terrible crisis was at the end of December. This crisis hit me very hard emotionally. I now know that it is impossible for me to see anything like that coming. That makes every day stressfull.