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.

Our crew

Here is our band of pirates with the tick-tock croc on Halloween. They are just too hilarious.

NHF Annual Conference in Anaheim!!

Our world here in Ketchikan is small. Unless you want to fly or take a long ferry ride out of here there is really no where to go but Ketchikan. In some ways this is nice. I don't know if I have ever gone to the grocery store without running into a least one person I know. In some ways this is isolating. Add to the mix a bleeding disorder and some times we feel so very alone. I know there are others out there but we don't get to go to any NHF chapter meetings (it is just too darn expensive to get off the island). Other than the blogs I regularly stalk, prior to our trip to Anaheim, we had talked to two people with boys who have hemophilia.

When we got to the NHF meeting it was great to sit around and have an opportunity to talk to other families who were new to the world of bleeding disorders. I enjoyed hearing the stories of how their sons were diagnosed and how they dealt with it. It was great to be able to share and receive advice from others who truly understand what we are going through.

There were a lot of sessions to choose from to attend and at times it could get overwhelming. There are a few sessions that really stand out to me. I loved hearing about how gene therapy trials are going. From that session I learned that they are further along in gene therapy than I thought. I know it still has a long way to go... but the hope that brings is amazing. I also was excited to hear about the genotyping project because it just makes sense to me. I can't wait until they have it set up so that we can get the boys' genotype in there for research purposes.

A not so medical session that I really enjoyed was one about the sibling situation. It is tough being a sibling of someone with a bleeding disorder. So much of  Eve's life is focused around infusions and medical appointments that I feel like she gets robbed of the attention I would like to give her. I was curious to hear what the siblings would say. There were two women that had brothers with bleeding disorders and a boy who had hemophilia and also has a brother with hemophilia. Overall I got the message that there really isn't any resentment of the sibling with a bleeding disorder, they just resent the parents (awesome huh). Other than that I think the best we can do is keep lines of communication open. The boy who spoke just made me cry. The way that he talked about his brother was just amazing. I have felt so guilty having these two boys with hemophilia. Hearing his story makes me feel so much more hopeful. The picture he painted of his relationship with his brother is exactly what I want for my boys. I want them to be able to talk to each other about anything and have such empathy for what the other one is going through.

We ended out the conference with a night at Disneyland. It was awesome to have that opportunity. Disneyland was super crowded but the kids enjoyed it. So I am not going to complain any more than saying it was crowded.

I think we went away from the NHF conference feeling a little sad that we don't really have the opportunity to be involved with any NHF chapter. The reality is we aren't moving from where we live now. We have an amazing support system here, a great job, and an amazing community. We will try our best to do something. I know when our kids are old enough to go to hemophilia camp (starting at age 7) they are going!!!

My dad was able to come to Anaheim to. It was fun for the kids to get to spend time with their Grandpa Lynn. He took us to California Adventure one night and was even suckered into riding a super wet ride with Eve. The kids loved having him to walk around with and it was great having another adult there. I am glad he was able to come. 

This is Eve in Disneyland. You may notice the bruise on her eye. The night before we got on the plane to Anaheim Ezra threw a book at Eve's face. Awesome huh? Evan didn't want her to be alone on being bruised and fell off the bed at the hotel when we was jumping and hit his head on the nightstand.... good stuff.

We got to see the Halloween fireworks show and played until the boys dropped.  Overall, the conference and the trip in general were worth the 4(2 down, 2 back) plane rides with a grumpy Evan.