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.

Looks who's one!!

A year ago today I met this sweet boy.

When they first pulled him out of me they commented on how big he was.... Ian and I didn't think he was that big... we still thought of Ezra as our baby. That quickly changed. Those first days were so sweet. I loved cuddling this little guy and how nice and calm he was. He was saving up all of his crazy for later. He is still quite the handsome little man and my heart melts just thinking about him. I can't imagine my life without him. I am so grateful he completed our family.

 Currently he loves rocking out to music. He also loves clapping for anything... probably something that started when we were potty training Ezra. He eats like a teenaged boy, at least one of our kids will eat anything we put in front of them. One of his favorite things to eat are those applesauce pouches... he can down those in under a minute.  He loves pushing cars around the house... but also loves stealing whatever toy his siblings currently are playing with. He finally has teeth. He has two that have really broken through and another two on their way. He will walk about five steps right now.... but thinks he can run.
A year.... so much has happened in this past year. At a few days old his blood tests came back that he had hemophilia. At somewhere around 8 months he had his first joint bleed. At just shy of 9 months he had surgery to get a port. How many times has he split his frenulum? I know I have lost count. This boy is trouble!  I spend most of my time trying to balance keeping him safe(ish) and letting him have a normal childhood.

Evan has been having a tough couple days... we thought it was this nasty cold. But after a while we thought maybe it was a bleed. Pretty sure it was a bleed because after a bleed dose of factor he acted much more like his normal self. Hooray!! That meant that he really enjoyed his birthday instead of just whining all day. He enjoyed a nice messy dinner, then a bath, then cake, then a bath.... then presents. What more could a one year old ask. Eve and Ezra selected special presents for him yesterday. They wrapped them in paper towels and were so excited about them. Ezra was so excited that he opened it for him. How adorable! Sometimes siblings are just amazing. Evan closed out the night with kisses... for everybody.

Double Prophy day...

My least favorite day of the week is the one day a week when we have to infuse both boys. Ezra's prophy schedule is every other day... Evan's is twice a week. So depending on the week their prophy schedules align on a Tuesday or a Friday. For some reason in my mind it just seemed like that would be easy; line them up and get it done. I think maybe it wouldn't be so bad if we could do it at our own pace... but there is a rush to at least get Evan infused before Ian goes out the door to work... and usually we try to get set up for both boys while we are at it. Try is the important word... looking at my records Evan usually happens at 8... so Ian is late for work and Ezra has to wait until after Eve goes to school and Evan goes down for a nap. That just makes me feel like I spend half of the day dealing with prophy.... but that is way better than spending half the day in the emergency room... or even the doctor's office.

It's the Protocol

It's been a long night.

I know it is a terrible picture but we are waiting to be released from the hospital and he was sleeping on my arm..  Since Ezra had his port placed we have not been able to give Tylenol for fevers.  Fever is a sign of a possible infection in his port.  So, when he has a fever we wait to see if it will go over 101.  Sunday was the first time Ezra had a fever that broke that barrier, 103.3.  A quick call to a hemo nurse and we were off to the ER.  I walk in and tell the receptionist Roskam, Ezra like we were there for an appointment.  I get a blank stare and the doctor behind the counter says "we've been expecting you" and we get walked right to a room.  Now that is what I call service.  The whole reason for this visit is to determine what is causing his fever.  One blood culture from his port, one from an arm, 4 additional vials from his arm for other tests, some unexpected chest xrays, and a fight for a urine sample and we were both exhausted.  Then we had to wait almost an hour for the prophylactic IV antibiotics. Tylenol kept his fever down for the night and he didn't need it the next day.  Now he is nearly back to normal.  Tomorrow we should find out what the cause was but it is pretty clear it was bacterial.  The real question is where the infection was.  During the follow-up appointment Ashley asked what we should do if Evan developed the same fever.  The answer?  The same thing, it is the protocol.  Feels strange to say this but I am looking forward to when the boys infuse IV.  Of course that has it's own set of problems but at least a fever doesn't mean a trip to the ER and blood tests.