World Hemophilia Day

Sometimes I think that Eve doesn't understand what hemophilia is, or maybe she just wants to escape that world when she leaves the house. One of her friends was explaining hemophilia to her teacher... and Eve didn't want to say a word. She is so helpful when we are infusing the boys... trying to entertain or help in any way she can. She is very good at advocating for cartoons during infusions (I can't imagine why that would be). So in honor of World Hemophilia Day I thought maybe we could get a little bit of Eve's perspective on hemophilia.

What is hemophilia?

You have special blood. I think that's all.

What is special about your brothers?

They have special blood and you and me don't.

How do we treat them?

Put a port in their body.

What happens when they get a port in their body?

They get a really hard booby boob. ( I am seriously laughing so hard here. How do I keep a straight face? Their ports are right above their right nipple, so her description comes from that.)

Is it fun to have hemophilia?

No, you have to have a pokey poke.

Oh Shit!

Yes, that is an entire gallon of milk on the floor.  I asked Eve to help by putting the milk in the fridge.  I ran down to the car to get Ezra and come back to Eve screaming "MOM. Help. The milk is spilling on the floor."  Now I was expecting maybe the cap just cracked and I could stand the jug up and stop the spill.  But, noooo.  Eve lifted the milk above her head to get it in the fridge and dropped it.  The little circle on the side of the jug blew out and cracked all the way to the bottom.  When I walk into the kitchen the jug is standing up with milk pouring out the bottom. AHHHH! Milk everywhere.  Time to clean.  Eve was so apologetic. It was very sweet.  Eve is always eager to help.  Sometimes it is hard to remember there are limits to what she can do.  Lifting a jug of milk over her head?  Maybe she needs to pump some iron before next time.

Hippity Hop Hop Easter's on it's way...

When we got home from church yesterday we discovered that the Easter Bunny had hid a ridiculous amount of eggs outside. Eve and I got home before my mom and Ezra and she could not wait for them to get out there so she could start collecting. As soon as she saw my mom's car driving down the road she was out the door and collecting eggs. It was adorable. Ezra had fallen asleep on the drive home but Eve made sure he woke up to collect eggs... no way was she going to wait any longer than she already had. Eve quickily decided her little bucket did not hold enough so she carried around a big box to put her eggs in. Maybe next year she will get a box that has been decorated. It is so fun to have so many eggs... they don't get possessive with the eggs. Each of them were happy to help each other out, and they know that they would only get a few pieces of candy anyways and the rest would go out for rewards/bribes/treats until the next holiday. Evan slept through most of the Easter egg hunt. He was fine with that because what he was really interested in was the candy when we brought them all inside. Oh that boy and his candy addiction. He is so messy when he eats it too. 

Then we had dinner with my mom and Andrew, Grandpa Syne, Grandma Helen, Uncle Todd and Trevor. It was a good time. 

March

Spring is here!! Someone forgot to tell the weather that... but oh well at least the we have more daylight. This past week was spring break. I don't know how I survived. It is a tough age difference right now with some kids (and mom) needing naps and a certain preschooler being unable to keep quiet. There were some sweet moments of sibling play in there somewhere... but my ears are still ringing from all the screaming and fighting. 

We are doing just fine. Nothing exciting going on. Evan is walking all over the place and is up to his usual shenanigans. Ezra is busy telling me "me do it" pretty much about everything. And Eve is loving school and trying to be helpful.

The human body is AMAZING!!

 The other night I was looking at hemophilia blogs and came across a picture of a boy that has hemophilia and has inhibitors. Inhibitors are tricky little devils and a word I fear hearing from our doctors. When you have inhibitors your body attacks the factor you administer... making it much trickier to treat bleeds. Well anyways this boy has a lot of bruising... and some of the bruises are not from anything you would expect to cause a bruise... one of his bruises was from the belt on his five point car seat harness. Not from a wreck in it but just from being in it on a normal car ride.
All I could think of when I saw that picture was how fragile our bodies are and how busy our bodies are activating the clotting cascade every day. This is not something I thought about EVER before our little journey into the world where clotting cascades simply aren't able to do what they need to do. Seeing all these bruises on my little boys, especially the bruising they got prior to prophy, just makes me realize just how often that cascade is working. And this is just one tiny part of how our bodies take care of us... don't even get me started on what I learned about our bodies from talking to a mom who has a daughter with cystic fibrosis. I am just amazed and thankful for our bodies and the amazing things they can do...

Comprehensive Clinic

We got back last night from our trip to Seattle for a comprehensive clinic for the boys. Good news is they look good. Both boys have full range of motion in their joints. Hooray!! They also think since we haven't had any breakthrough bleeding on Ezra we can try to back off to 3 times a week and see if that works for him. The fewer pokes the better for that guy... as long as he doesn't have any bleeding. So now both boys will be on the same prophy schedule. Hopefully that is easier to keep track of. Otherwise I guess we are doing the best we can and the boys are doing really well so a big pat on the back for the parents.

We had the worst time getting our travel approved to go to Seattle. It was just the weirdest combination of things that made it horrible. First off getting the appointment scheduled early was easier said than done. This month was the first comprehensive clinic that our clinic has done so it took them longer than normal to get it all set up. Then insurance thought that one parent was plenty for both boys... after all the only time they were scheduled to be in two places at the same time was when they were being infused... no need for a second parent then. Even though they were in the same place at the same time we had two providers in the room at once each asking questions... so one parent handled one provider while one parent took the other one. It was super wild and crazy!! Anyways back to the craziness of getting our travel approved... Ian did some major work to get it all together. He spent a ton of time on the phone finding out what the hold up was and making sure the right people got all of their stuff. In the end a letter of medical necessity was what got both of us approved to travel. It was an anxious couple of days around our house leading up to our visit not knowing if we would even be able to go to our appointment. Luckily Ian is persistent and patient.

We are a happy family...

I love Wednesday nights. We have this crazy schedule during the week and Wednesdays seem to be the night when we can just hang around and not have to be anywhere. That means plenty of time pretending to be trolls, knights, dragons, princesses, and princes. I love being home because even though the kids are still crazy it doesn't freak me out as much as when we are out. So the boys climb the furniture and go all crazy just being kids.