Thank you everyone for your prayers this week! Kai's appointments have all gone well. He has a fairly significant language delay; however, the therapist was pleased with how much he has grown in the last few months since being exposed to consistent language! We will be adding additional therapies for him as this is such a prime time for him to pick up language skills!
The neurosurgeon we met with was wonderful! He spent time with us providing education regarding his hydrocephalus and shunt. He validated that it is difficult and very unique to jump into all of this without having gone through the initial diagnosis process and surgeries. We feel we have a much better sense of his hydrocephalus, what to look for in terms of complications and just generally how hydrocephalus fits into his other issues and Kai's lifestyle. We don't need to be overly cautious with him-- which is a relief, because he's a pretty typically crazy toddler! The doctor actually said there are two NFL players with brain shunts.
Kai's shunt, placed while in China, is the brand and type of shunt preferred by our neurosurgeon. You all have joined us in prayer regarding this for many months and we are so grateful for this answer to prayer!
We had initially thought that perhaps the hydrocephalus was caused by his brain tumor, but the surgeon's impression is that he has congenital hydrocephalus. He thinks that the brain tumor is unrelated. His initial impression of the brain tumor is that it's benign and not typical of tumors found in that area of the brain. Kai will have a repeat MRI in 6-12 months to monitor for any changes or growth. Neurosurgery will follow him for a period of time to address the tumor. Complications that we would see of a growing tumor would be very similar to complications from his hydrocephalus, so we are thankful to understand well what symptoms we would see if issues would arise!
We will see pediatric neurosurgery at CHOP next Wednesday for a second opinion regarding the tumor, but at this point, we really feel comfortable with all that we heard yesterday!
Thank you to everyone who has checked in with us over the past few days. We so deeply appreciate being remembered by you all in thought and prayer.
We feel God's nearness even more as this journey unfolds. The tumor that we hoped he did not have is another opportunity to push us deeper into the presence of God. It's honestly a concrete reminder to me that the control we think we have in our lives or our children's lives is really just an illusion. God's presence is the best answer to prayer. We praise God for His faithfulness! Thank you for your continued prayers for Kai's health, God's nearness and that others would see more of God's beauty wherever this journey leads.