No news yet on the 2nd blood test.
Thanks for all your kind words, thoughts and prayers. I can't tell you how much it means to me.
To address a few comments:
areyoukiddingme: Yes, I would let the clinic know. Anyone using this donor should know that this information. It's only an issues if the sperm donor is also a carrier.
amasingk8: I read the false positive rate was high but I didn't know how high.
Ophelia: Thankfully our insurance will cover formula/food/ and other interventions. We are so lucky. Not to get all political but everyone should have health care. It's a human right. Medicaid for all.
Danaly: Thank you! It's helpful to hear of stories where people lead relatively normal lives. To actually know someone who is managing this would be helpful.
Em: Thanks so much. Yes, the medical sites freak me out. The ones that are more family/lifestyle based are much more helpful. My main concerns have been if she could have normal intelligence and is she'd have behavioral problems. I think it has something to do with the severity of the condition and how well you monitor/stay on the diet. Thank you so much for reaching out to a perfect stranger. I can't tell you how much it means to me that you did and that you can manage it well.
Other thoughts/concerns: More kids and Embryo Donation
I have wanted a 3rd child. Mr. Peeveme says we are done. That was not a fight I was going to fight right now but one I was not going to loose. We have 7 embys just waiting. We have had to work so hard to have our children....this one would be an easy FET. How could we not? But they all have a chance of having PKU....kind-of puts a kink into those plans. Also, while Mr. Peeveme and I have not decided what to do with the leftover embys...it would also put a kink in those potential plans as well.
Does PGD test for PKU?