Thanks for taking time to ask me more questions!! I love talking about my little boy and family.
1) Did you know about Gideon’s condition when you were pregnant?
No. I opted out for all prenatal testing. My pregnancy with Laynie was completely healthy, so I saw no need to test when we were expecting Gideon. When he was finally diagnosed at 7 months, we were told prenatal genetic testing would not have done us any good because his disorder is so rare. A more specific test would have needed to be done.
2) Which parent is responsible for Gideon’s genetic mutation?
Both. There are so many different kinds of mutations within the peroxisomal disorder umbrella. Sometimes it could be one parent’s mutation passed on; however, in our case, Kevin and I are both carriers of a mutated recessive gene. If you remember 7th grade science, you’ll know that means Kevin and I have a 1 in 4 chance of having a child born with PBD with every pregnancy.
3) Is Laynie affected by PBD?
Maybe. She could be a carrier of the mutated gene. She has not been tested yet because she was 3 when we got G’s diagnosis. Since she’s not directly affected, we didn’t think Laynie needed her blood taken/tested right now. This will be something that she (and her future husband) may want to be tested for before having children of their own.
4) If you were to get pregnant again, what would you do?
If/when that happens, then I’d be a mom to three blessings instead of just two.
5) How should I interact/play with Gideon?
Just treat him like you would any other kid- talk to him, touch him, love him. If you have facial hair you’re already a shoe-in for his favorites list. I always tell people to place their hand under his so he knows for sure you’re there. Chances are, he’ll reach out and try to touch your face. (If he sticks his finger up your nose, just go with it. Lol)
6) Why does he rub his eyes all the time? Is he sleepy?
If he’s actually rubbing his eyes then yes, he’s tired. However 90% of the time he’s just putting pressure on his eyes. Apparently kids with multiple sensory impairment do this. I like to joke that he’s just blocking me out so he can concentrate. 🙂 It also could be that the light is too
7) Which grandparents carry the mutation?
We don’t know, they have not been tested. And to be honest, we don’t think they need to be tested. This mutation is no ones fault.
I really enjoy answering your questions. Please don’t be afraid to ask. All parents (special needs or not) would rather you ask than assume.