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. 

Brotherly Love

Every day while Eve is at school these boys get to play together. Sometimes it is a little bit hairy. Yesterday was one of those days. I figure if the day starts out with a costco sized bag of craisins all over the floor it probably isn't going to be the greatest day. Ezra is obsessed with turning every straight thing he finds into a sword... as I am sure most boys do. Then he likes to stab Evan with his swords. Lots of fun around here with that one. But then there are days where they just enjoy playing with each other and I think wow... this is amazing.

Ezra and Evan both love this toy.... they fight over it... or they share it. We like to encourage sharing... but that doesn't always happen. 

I've got you babe...

The other day someone asked me how long Ian and I have been together. That question is a lot harder to answer than some people would think. Ian and I started dating all the way back during my freshman year of high school. Can you believe that? Every time someone asks me how long we have been together I don't know when to start counting. We dated, we broke up, we dated, we were friends... and then somewhere along the way we got married. Wait! How did that happen?!
Sometimes I feel so guilty about all this craziness that comes with my genes. I wonder if Ian sometimes dreams of the life he would have had if he had married some non mutant. Of course I've asked him this and his response just kills me... "No, because I would rather be helping you deal with this."  I love him for that. And he is a huge help through all this wildness. There is no one I would rather be going through this with than him. I am glad that he stuck around. 

All I can think of in honor of Valentine's Day is the lyrics of I've got you babe.... 

[Sonny] I got flowers in the spring I got you to wear my ring
[Cher:] And when I'm sad, you're a clown
And if I get scared, you're always around
[Cher:] So let them say your hair's too long
'Cause I don't care, with you I can't go wrong
[Sonny:] Then put your little hand in mine
There ain't no hill or mountain we can't climb
 

Yet another ER visit...

How did we go over a year with Ezra having a port before we had to take him in because of a fever? I think it is probably because I was pregnant and had a new baby and we never went anywhere to pick up germs. Yesterday we went to gymnastics.... the breeding ground of all good germs in Ketchikan. Ezra sure loves it there... my nerves don't love it there so much. One time he fell and magically cut his head open while at the very padded gym. If I remember right this was before Evan was born. Can you imagine watching two little boys going in different directions while other kids run wildly around them... this is what I decide to do for fun on a Wednesday? Anyways...

Evan woke up from his nap yesterday afternoon feeling a little warm. I thought I better keep track of this fever. Easier said than done. I spent an hour cleaning the house looking for the darn thermometer that actually works. The one that doesn't really work said his temp at 99... not much to worry about. Then I had to 

torture my one year hold by making him hold still enough for the thermometer to read. Is it just me or do they take forever? Well it didn't finish reading but it got up to 101.7 before he decided he just wasn't having it.

 I thought the earlier we got to the emergency room to have his blood drawn out of his port the better. But I was also in the middle of making dinner and making our bread for the week. So I called my mom to come watch the kids and my bread while we went to the ER and we set down to eat dinner. Then we called the hemophilia nurse to give her a heads up about what was going on.

At the ER the doctor was not on top of his game... I think that is a nice way to put it. Doesn't anyone read a chart? So he said Evan had an ear infection and was ready to send us on our way with antibiotics... I said so  don't we need to have blood drawn out of his port to check for infection. He was like oh he is the one with the hemophilia.... A real gem of a doc. I know he was probably tired. It was the end of his shift but come on! Then the lab came to draw blood out of Evan's vein. Ian said what about his port... they had to check to see if that was okay. It better be okay because that is where it needs to come from. So they had us access his port and they drew the blood out. Then we flushed his port and they sent us home with antibiotics.

So today I had to go follow up with our pediatrician. Evan doesn't have an ear infection. Just as I suspected. He does have a cold... just as I thought. We have to keep an eye on him and wait to see what happens while they grow the cultures (takes 5 days). I wish these things would happen when our clinic was open. Our doctor is really amazing... can't she just be there 24/7? At least we have a hemo nurse on call at all times.

The little things

Last night Ezra was having a hard time going to sleep, nothing new there. One of the many times he yelled for me I went in and his medic alert had broken (again). I can't count the number of repairs we have done on that darn thing. I was so frustrated. I hate when the links start coming open and scratch his skin. I hate when he gets them stuck in the carpet and is trapped. Evan's is lost who knows where.... So I ordered new ones. We are going to try out the silicone band ones. They may not work... who knows. If they don't I will willingly go back to our old ones and the problems that go with them... but here's hoping that this will be more comfortable and still functional for the boys.