Seeing as I haven’t gone into much detail regarding hemophilia up until this point, here is a link to find out more. One thing that differs from the information given is that it states that hemophilia is inherited from the mother. While that is true, 1/3 of hemophiliacs result from a new and spontaneous mutation. At this point, we still do not know if I am a carrier or not (we have no family history) and we are awaiting DNA results. So the mutation occurred in either myself or Blondie, but that is still to be determined.
As for Blondie, he is doing great. He is still on twice a week prophylaxis, but he has no qualms about it. It’s become normal and much less of a stress to deal with. What a blessing that is to my heart that he is relaxed about it. We are now learning how to give him his infusions at home. I get quite the responses when my husband and I joke that while we might not get out on dates much, for ‘fun’ we now sit at home and take turns practicing our venipunture techniques (we take what we can get). Blondie thinks it’s great. Not only is he not getting the pokes, mom is poking dad.
Just last week he got a custom brace for his left leg to try to protect from another knee bleed. Next month he is having an MRI of his knee. While we still hope that after his MRI we might not have to continue with prophylaxis, we want to be prepared to do it at home, and so far things are looking good.
As for the rest of us, we have been doing our best not make a huge deal out of Blondie’s situation, but to include everyone as much as possible. This certainly can be a challenge sometimes as we want to avoid extra trips to the hospital, yet don’t want to become overprotective (we’re still working on this). And in the name of our new ‘normal’ (not to mention making things easier by not having to arrange childcare), this month the rest of the kids began coming along to Blondie’s infusions. The kids handled it well, and their responses to seeing their brother get his injection were really neat. They have a new appreciation and respect for what he has to go through, and it certainly feels like we are in this together.
Though we still have many questions (the biggest of which seems to be to what degree to attempt to bubble wrap the little goofball) and we don’t know what circumstances we will have to deal with in the future; we know we serve a God who will never forsake us, is our strength when we are weak, and gives peace beyond understanding.