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.