As much as I want to spill all of my guts, I am just going to share a quick update about Jaylen's health because I know that so many of you are
Our insurance will not cover the center where we were hoping to have him thoroughly evaluated. If we choose to take him there, it would be self-pay and we would have to move into a refrigerator box. Instead, we are opting to go to one specialist after another in order to come up with some diagnosis. If/when special needs are established, Jaylen will qualify for medicaid, and then that center will be covered.
At this point, we have only gotten in to one specialist. I don't know why it takes 1,000 years to get a baby's heart and hearing and vision checked... but, it does. His first appointment yesterday was with a pediatric dermatologist to rule out a genetic condition that presents with cafe au lait spots and hearing loss. I feel like I know in my bones that he had meningitis and that that is what caused his hearing loss, because it wasn't handled properly by the hospital, so it was not surprising when she said that we were not dealing with that genetic condition. She did say that one of his birthmarks was harmless, and the other wasn't a birthmark at all (despite what I was told at the hospital) and would have to be removed for it's risk of melanoma.
So, while I was hoping to check one specialist off the list, I actually have to add a pediatric plastic surgeon to the list... and we are still no closer to clear answers.
I feel like I am beginning a very long road that I am not equipped to handle. I also feel like I love Jaylen more than I could possibly express, and I am thankful that I get to be the one who tries to have what it takes to handle this.
God is teaching me some ridiculously hard life lessons right now, and the biggest one is that I have underestimated the fragility of my life. It is very scary being aware of how breakable everything is. It is terrifying to know that my heart, my marriage, my kids' health, my relationships, everything... is breakable. It is scary, but it is also a good reminder that I have to work hard to be a good steward of what God has entrusted me with, and it helps me long for heaven... where things can no longer break.