Abbey was sick this weekend. Super sick. She made it through the wedding and first thing the following morning, she complained of a headache and upset tummy and then spent the next 11 hours throwing up and sleeping. It was not a fun day. I hate it when either of the girls is sick, but I find myself especially panicked when Abbey is sick.
When she says she doesn't feel good I immediately flash to Isabelle and what she might have said, if she could have verbalized her symptoms. Although I know that it would be very unlikely for Abbey to have a bleed, the possibility consumes my thoughts.
She currently has no fewer than 10 bruises on her legs. Several of them are very deep and dark. She has no idea where they came from. A few weeks ago she had a nosebleed at school. She did not get hit, her nose just bled. No one felt the need to tell me about it. I nearly came unglued on the school nurse. She assured me that there was very little blood. I still felt panicky.
I worry that when she's old enough to have her period, we'll have to treat her then. I hope they have a better treatment for her at that time. Factor X is currently not being artificially produced. There are several that are and they are available for individuals to infuse themselves at home. For those of us with a deficiency not being artificially produced, that means receiving a blood product. Which obviously they don't just let you take home and infuse yourself. There is a company that is nearly ready to artificially produce Factor X. Nearly. Britain offers incentives to drug companies to work on diseases and disorders that although affect a small segment of the population can be devastating. Thank God. Factor X deficiency is one of the more rare blood disorders and a deficiency as severe as Izzy's has been documented less than a hundred times (numbers vary between articles). It's hard to make the case to spend millions of dollars on research and development for a disorder that affects so few people. Thank God someone did.
So maybe when Maddy and Abbey grow up and have children, this bleeding disorder will be so easily managed, they won't have to worry and panic when their daughter stubs her toe or falls of the slide. Well, they probably still will, but it'll be a different kind of worry.
When she says she doesn't feel good I immediately flash to Isabelle and what she might have said, if she could have verbalized her symptoms. Although I know that it would be very unlikely for Abbey to have a bleed, the possibility consumes my thoughts.
She currently has no fewer than 10 bruises on her legs. Several of them are very deep and dark. She has no idea where they came from. A few weeks ago she had a nosebleed at school. She did not get hit, her nose just bled. No one felt the need to tell me about it. I nearly came unglued on the school nurse. She assured me that there was very little blood. I still felt panicky.
I worry that when she's old enough to have her period, we'll have to treat her then. I hope they have a better treatment for her at that time. Factor X is currently not being artificially produced. There are several that are and they are available for individuals to infuse themselves at home. For those of us with a deficiency not being artificially produced, that means receiving a blood product. Which obviously they don't just let you take home and infuse yourself. There is a company that is nearly ready to artificially produce Factor X. Nearly. Britain offers incentives to drug companies to work on diseases and disorders that although affect a small segment of the population can be devastating. Thank God. Factor X deficiency is one of the more rare blood disorders and a deficiency as severe as Izzy's has been documented less than a hundred times (numbers vary between articles). It's hard to make the case to spend millions of dollars on research and development for a disorder that affects so few people. Thank God someone did.
So maybe when Maddy and Abbey grow up and have children, this bleeding disorder will be so easily managed, they won't have to worry and panic when their daughter stubs her toe or falls of the slide. Well, they probably still will, but it'll be a different kind of worry.
I'm a little upset on your behalf that no one called you to tell you about the nosebleed. Haven't they been told to immediately contact you? Do they need a doctor's note or something? I realize they deal with nosebleeds every day, but they don't deal with Factor X every day. I think that should be your call as to whether it's "really nothing," or not. It's your prerogative to freak out or not, not theirs.
ReplyDeleteI know the birthday party was a couple weeks away at this point, but they were all playing quite rough in the bounce house. And the next day when she came out her and Aidan were wrestling, too (she showed him a new technique, the "hurting touch." haha). Anyway, I know Mo still has a bit of a bruise left on her thigh that I think is from the party. So, it's possible that the bruises on her legs are from that.
ReplyDeleteBut even so, I understand your worry. I worry about her when she is here. Tim keeps telling me that before we knew we didn't worry. Ummmm. Yeah. That's Tim. He has a point, but it's hard to not worry.
The school should definitely document everything. And maybe you should have people write stuff down anytime they watch her. Just a quick list, like:
Today Abbey and Aidan wrestled.
She bumped her head into Maddie.
She got a small cut on her thumb from the door (that really did happen and we put a bandaid on and she took it off a little bit later and there was no blood. Still, I should have mentioned it to Duffy).
Anyway, it would be good to know what you want me to do. I don't know that you want us to give a verbal run down in front of Abbey, you know? But it's probably good to know that they wrestled enthusiastically in the bounce house.
And I can also say that if she needs blood when she is menstruating and there is a way for me to donate (either here or Peoria) I would do it in a heartbeat. I don't know how that works or whether we'd be compatible or any of that. But I would be willing to find out if it comes to that. Hopefully she won't need anything and if she does I hope that by then some synthetic Factor X will be available.
ReplyDelete