Navigating Little Javen’s Very Best Care

Little Javen Veenstra, son of Alex and Kirsten Veenstra was born on Sunday, Feb. 4. On Thursday, Feb. 15, Javen traveled to the Blank Children’s hospital in Des Moines due to having some seizures symptoms. The medical team diagnosed Javen with an extremely rare diagnosis of Hemimegalencephaly which means his seizures are challenging to control. Since then, Javen was flown to the University of Iowa hospital in Iowa City where they are determining next steps. Thankfully, little Javen will not have to be flown to Washington DC as originally thought. See update below from Kirsten.

There are all kinds of questions and concerns mixed with all kinds of hope and assurance that little Javen is fearfully and wonderfully made and being held in Jesus’ hands and in the prayers of God’s people.

Until we know more, there are unexpected expenses that we can help Alex and Kirsten out with. These include food, lodging, transportation expenses, and parts of his medical care. Little Javen has some insurance so that will help a lot but the unexpected things add up quickly. This goal may be amended if/when we learn more.

Please pray for Javen, Kirsten, Alex and his extended family as they navigate this situation, the unexpected, unanswered questions, anxiety, fears, and unknowns. Helping them out in this way will just help ease a few anxieties even if, admittedly, it is very hard for them to receive help in this way. They realize their friends, families, church communities, and the local community is ready and willing to bless them however they can.

Update from Feb. 22: (per Kirsten)

We spoke to the neurosurgeon team and sounds like we will be proceeding with the endovascular embolization procedure (X-ray catheter surgery). However because of his age they will have to do this procedure 3-4 times and monitor for 1 week in between each surgery. After the surgery he will have left sided weakness for some time and it will take him awhile to relearn how to eat, so we will probably have to stay here until he knows how to do that again. The first surgery should be taking place early next week once they get the anesthesiologist team on board. We should have a date for the first surgery by tomorrow or Friday. Javen has been very spunky for the nurses and is using both sides of his body which is encouraging. Prayers for the doctors and specialists involved in his surgery and for each one to go well without complications. We will keep sending updates as we have them. Thank you for all the support and continued prayers.