A big day

Years and years have passed.

We do not think much about writing a blogpost and, as you can see, we have not written at all in a very long time.  

For many years, the blog was a way to process our experiences with Loki, his major health issues and the wonderful progress we witnessed. Also, writing was a way to inform our family and friends across the globe about Loki's health and development. We wanted Loki to have his story chronicled so he will always know how powerful and persevering he is. Finally, we wanted to share our story in order to provide courage and hope for others who have similar experiences.  Due to Facebook, where we can keep people informed, due to the decreasing need to process our challenges, and due to a much, much healthier and thriving boy, we do not write anymore.

Yet, we do want to share some major developments from the past few years. 

Loki is 8,5 years old, and on a daily basis we look at him and wonder how he came this far? How did this incredibly tiny preemie, with lingering, severe health issues, become such a big and thriving boy?

Fall 2014 Loki's health was good enough to enrol in a regular school setting. We chose the local Waldorf school. Within a few weeks, we had a completely different boy at home. Whereas his medical needs greatly decreased during his special-ed years, his social-emotional well-being stalled. Loki feels safe when others truly see and understand him. This was not the case his last year in special-ed (his first year there was great). He showed significant behavioural issues, anxiety to be left at school, with screaming and crying. When he started at his new school, we saw a new boy. His extremely experienced teachers new exactly how to make Loki feel safe and seen. Even writing this now, years later, fills me with both profound sadness as well as a deep sense of gratitude for his “new” school.

Still, Loki is doing very well in school. He has an amazing teacher who no doubt has a great impact on how well Loki develops. Although we certainly see some signs of attention deficit, which is a common lingering issue associated with extreme premature birth, academically he is doing just fine. Loki is a curious, inventive, strong-willed, energetic, sweet, sensitive and smart boy. But most of all he is generally a very happy child who skip-hops through his day. What else can we wish for?

With regards to his medical needs, during the Winter of 2015 Loki took a huge step. After not using the feeding tube for six months, Loki took out his own “tubey” at the hospital. He was able to drink enough to keep his one kidney healthy, and with several dietary supplements, he was able to gain weight. Loki was both proud and sad. He only remembered himself as a boy with a feeding tube. We also spoke with gratitude about his “tubey” because it saved his life. Ceremonially we decorated a little treasure box and wrote notes to thank Loki’s tubey for helping him life. His wonderful Dr. Draaisma at UMC Radboud was patient and attentive as ever when Loki, induced with anxiety, was afraid to actually pull his tubey out.

In the years following this major, glorious event, Loki keeps getting healthier. Yes, his kidney still shows hydronephrosis, and yes this will need to be monitored the rest of his life with most likely some major treatment at some point in time. But the proteinuria is no longer detected in his urine and the urine concentration disorder has been stable for several years. He needs to drink plenty, but no longer the large amounts from the past. And although he still does not like this, he can and will do it with reminders and a set schedule. His pulmonary health also shows significant improvement. Where he would catch a pneumonia each time he had a cold, he no longer needs lung medicine during the summer months. Moreover, last fall (2016), Loki had an airway infection which he overcame without antibiotic treatment. This is incredibly good news, as he has had a large amount of antibiotics throughout his life, compromising his sensitivity to some of them.

However, the most recent development with his gastric emptying issues happened just yesterday. As blog readers will remember, Loki suffered from extreme delayed gastric emptying for many years. The combination of this with his kidney issues was rather unfortunate. When Loki received motilium, a medicine to resolve nausea and stimulate the emptying, we entered a new, much more bearable zone.  Slowly, slowly, we moved from throwing up many times a day and feeding tiny bits of homemade tube feeding all day long, to where we are now. And where we are now, we never dared to hope for.

In Fall 2016, Loki seemed to gain weight sufficiently. His dietary food was, one at a time, taken off the schedule. His doctor decided to stop it altogether and see what happened. And Loki did and does well. He still needs a few extra small meals to ensure plenty calorie intake, but he does it all with regular food! In addition, increasingly we look at him and wonder how he finished his plate without us asking to take a bite, and another and another. And then yesterday (April 7^th, 2017) something huge happened: Loki took his last 1 millilitre of motilium. Completely against all odds and expectations, after trying many times before, we were able to phase out that medicine. Somehow, at the age of 8,5, his stomach decided to start doing what it never was able to do: empty without the support of medicine. This moment is the inspiration to write a post. We want to share how in awe we are with this amazing boy.

How hopeful and exciting that even after 8 years, our lives increasingly show signs of normalcy with regards to Loki’s health!