Updated: Dec 10, 2018
Thank you, everyone for your prayers for us this week! We are definitely still adjusting. We've had some great moments and some really difficult ones, particularly with trying to understand Kai. Communication continues to be a significant challenge. He has a difficult time regulating his emotions-- like a typical two year old-- compounded by all of his loss, communication deficit and developmental delays. The past couple days have been particularly draining.
We had some good doctors appointments. Here's the great news. Both the CHOP team and our pediatrician don't see any major neurological red flags. We won't know anything until we have the imaging done, but even if there is a tumor of some kind, it is likely not very aggressive. He will need an MRI with sedation, which takes some time to get scheduled. He will need bloodwork drawn every two weeks for 6 more weeks.
The team at CHOP said that his developmental age is around 18 months, meaning he has pretty significant developmental delays related to communication, motor skills and emotional skills. This is a little bit more of a delay than we anticipated, but we will have a much better sense of his growth when he is seen again in October. He was afraid of the interpreter, so there was a significant communication barrier. (The team indicated that some toddlers will be afraid of people who speak their native language because they interpret that the native speaker may take them away.)
Please pray for him as he has been waking up from naps very emotionally upset. He often rejects me when he wakes up, so we think it may be related to missing his foster mother. Please pray for restful sleep for him and that he would be open to comfort from me, especially as Paul is now back to work!
We are so grateful for your continued love and support for our family. I am so sorry if I haven't responded to any emails or texts. It still feels like I'm struggling to stay on top of things right now! Some moments are exhausting. Some moments are riddled with question and anxiety. Some moments show us new life and joy emerging from this beautiful life. Some moments show us the utter brokenness of this world in the deep loss, weeping and grief of this little one. But we face it all moment by moment with confident Hope in the Lord. Our Hope is not in a clean MRI, making up developmental delays or even bonding as a family. Our Hope is that God is working even the smallest detail out for His glory and for our good. The Gospel is at work. Redemption is happening in the groaning and in the joy. Thanks for being with us.