So she wants us to do another scan in 6 months and make sure it's continuing to improve. She seemed confident that it would be, but also cautioned that persistent dilation could start to impact how his kidneys grown & develop. It doesn't seem to be doing that now as they grew appropriately for the 3 months between scans.
We also met with our Craniofacial Pediatrician who is also a geneticist. The last time we were up there, he had blood drawn and we began genetic testing to look for any indication of what may have caused his craniosynostosis, kidney problems, respiratory infections, ptosis, or blepharophymosis. She had our results back & everything was normal! PTL! Granted, this was a fairly limited test, but it was good news regardless.
The Children's Hospital in Philadelphia is doing a research study that allows us to get additional testing without trying to fight our insurance company for approval, which they almost never give for this type of testing. So we figured we might as well go for it since they can use his previously banked DNA & we feel that in this instance, knowledge is power. It generally takes about 6 months to get those results back so we will see her the same time as Dr. Hanevold.
She did say that she is very pleased with Arron's development. While he is slightly behind in motor skills, it generally doesn't mean anything in the long run. His cognitive development is right on track & is a much better indicator of his future development. So that was also encouraging. As a first time mom, you worry about everything your baby does (or doesn't do) and if it's on time or not. So her bringing that up unprompted really did a lot for me. :-)
We appreciate your continued prayers for improvement in his kidneys & happy follow up appointments. Craniofacial still has a few things they're following related to his skull shape to make sure it doesn't interfere with his hearing or swallowing.