Morning in the life...

Of parents with two boys with hemophilia
6:15 Ian activates stealth mode to put emla cream on the boys so they will be numb when it is time for their poke.
6:18 Success! Both boys still sleeping with their cream on.
7:45 drag sleepy Evan out of bed so that we can get him poked before Ian goes to work. (poking him might be a 3 or 4 person job, but we manage with 2).
7:47 Bribe him with tic tacs to take off his shirt.
7:48 Hold down the crazed beast while he gets himself all worked up about that darn needle going in.
7:48 1/2 Seriously question the choice to bribe him with tic tacs because the drool coming out of his mouth during his beastly fight is ridiculous... and dangerously close to dripping on the nice clean port site. 90 percent of the time once the needle goes in everything is fine.
7:49 Actually infuse and pull the needle. Fight Evan to keep the gauze on until he stops bleeding. Choose a band-aid and put the shirt back on. By the time all this is over Ian is usually late for work.
8ish Ian goes to work.
8-8:45 Rush to get Eve to school.
9:00 Tell Ezra it is time for his poke.
9:01 He chooses which cartoon he wants to watch.
9:02 I get his tray ready while Evan snacks on tic tacs.
9:08 Evan attempts to give Ezra tic tacs that he has already tested for quality.
9:09 Ezra rejects the sticky tic tacs.
9:10 I prep Ezra's port site. Maybe once in a blue moon Ezra will yell at me while I poke him because I have manuvered my fat head in way of the tv.
9:11 Right before the poke Ezra says "mom don't you poke my boob." Never have a done this or anyone for that matter but it is a real concern of his.
9:11 1/2 He is calm as we check to see if the red snake wants to come out (if we get a blood return). He happily relaxes.
9:15 Once done he holds the gauze. Usually he holds it while I clean up all the garbage and then I get distracted cleaning other things until he reminds me he needs a band-aid.
Pretty much that is the big part of our day that is any different from anyone else's. This doesn't happen every day either (Evan 3 times a week and Ezra every other day). Otherwise it's icing bumps and bruises, balancing the desire to let them play freely and wanting to helicopter over them, and doing our best to keep them safe and healthy.

Triumph

I have really enjoyed 2013. I feel like after life beating us up for a few years we are finally getting somewhere. For all of 2013 both boys had ports. This means that when things go wrong (bleeds happen) we are able to take care of it at home, for most things. I love this freedom. I hate, absolutely hate, taking the boys to the emergency room and justifying why we're there and just praying that the doctor will understand the situation because the sooner they get factor in their system the better. The only emergency room visits we had this year were just because the boys had fevers and we needed to make sure that they don't have port infections. So much better!! We have some super busy boys. Evan is aiming to be the first child to break a bone, so without prophy and the port we would be regulars at the emergency room. 

We were also able to experience something awesome about having hemophilia. Being part of the bleeding disorders community. It is really cool to know that we aren't alone and that there are so many willing to share their experiences in hopes to help us on our journey with our boys.

We were able to buy a house. We had been living in a 2 bedroom apartment since Ezra was around 4 months old. It was feeling increasingly small. I dreamed and dreamed of getting into a place with just one more bedroom. Sometimes when you think one little thing will make a difference and when you get it you realize that was just a dream. This was not the case. Having 3 bedrooms is so much better. Let me tell you. There is so much more peace in our house this way. We are so thankful for all the people that helped make it possible for us to buy our house. 

Another highlight for us was our first non-hospital vacation since Ezra was diagnosed. It was awesome! It was nice and warm and so much fun hanging out with Ian's parents and siblings up north. I didn't realize how much we needed the break but it was so good. 

This year has been good to us. We have been pretty normal and boring and I am so thankful for that!! Just hoping that we can have a relatively calm 2014.

Christmas

Sometime around Thanksgiving Eve made a Christmas list. She was really dreaming with all of those things that were on her list. I think she ended up getting pretty much everything that was on her list. How does that happen? Lots of amazingly generous family members, that's how!! Thinking of highlights of Christmas for each of the kids. When I asked Eve what her favorite Christmas gift was she said that she loved them all and couldn't choose. Love that girl. The best part about her is every time she plays with a gift she remembers exactly who gave it to her and gives them credit. I don't know how she learned that but I think it is really sweet. I think Ezra loves all the "wegos" that he received. He loves to build and now he has more legos than he knows what to do with. Evan was a typical 2 year-old and couldn't get past the first gift he opened. It will probably take him days to actually discover all of his gifts. They have been opened thanks to some super helpful siblings. I think the best part of the day for me was the popper fight with Grandpa Al... love being with family.

Vampires

Every time we get a factor order I look at the big box labeled with Puget Sound Blood Center... that says refrigerate upon arrival and I laugh. After reading or watching Twilight which person doesn't at least for a second think vampire. We are happy to have them keep on guessing, add a little mystery to the world.

Happy Birthday x 2

Eve and Ian love counting down the days until their shared birthday. I think that it is pretty sweet that they share a birthday. Poor Ian got a cake with pink sprinkles on it... but he's not complaining. We had a fun time with the birthday people! Now we have a 6 year old in the the house and someone else turned 30.

Thankful

There are so many things that I could say I am thankful for today. We really are very blessed. I am thankful that we haven't been to the emergency room in a few months (knock on wood). I am thankful for my amazing family members. As much as I wouldn't choose the challenges our family has had in the past few years I am so glad to see the way that we have all stepped up to the challenges life has brought us and grown. The other morning when it was time for prophy Eve decided she would get the boys band-aids, Evan got out the tic-tacs, and Ezra grabbed the t.v. remote to get Octonauts on for infusion time. These kids are amazing. They are growing up being so empathetic and loving.

Winter Wonderland

 

On Saturday we got a little bit of snow. The kids were pretty excited. Ezra brought the littlest snowballs I have ever seen into the house to hit everyone with a snowball. It was pretty adorable. Eve wanted to make snow angels in the driveway. There wasn't enough snow to make a really good one though. She made the angel and you could see the gravel of our driveway. Last night it actually snowed a few inches and the kids were so excited. They wanted to go outside and play in the snow as soon as they woke up. I was able to keep them in long enough for them to eat breakfast and then they were outside. Evan cracks me up because he refused to wear gloves but then he started crying because his little hands were frozen. I couldn't even get him to put on gloves then. Ezra and Eve were just happily playing in the snow with the proper snow gear while Evan was being stubborn and crying. He wouldn't even move. Just stood there frozen and crying waiting for someone to come save him.