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.

Kindergartener!

So Eve started kindergarten last week. She was so excited about it. So far she loves her teacher and lucky for her most of her friends from preschool are in her class. It is a tough transition to full day school. If she rides the bus she gets on the bus a little after 8 and doesn't get off the bus until 4. Poor Ezra cried when she got on the bus the first day. "My miss Evey-roo." Luckily he and Evan are adjusting to her being gone so long pretty well. They are loving being able to break into her room and play with her toys. 

My little Ez

Sometime yesterday I remembered that Ezra's birthday was today. At least I didn't forget it completely right? Luckily I had purchased his birthday present last month and miraculously it wasn't lost in the move. I hadn't planned his birthday like I wanted to, didn't have his present wrapped, and hadn't invited anyone over. A 3 year old doesn't care about these things. We pulled off a lovely last minute birthday party and he wasn't feeling like he was missing anything. My friend Kristi made him a birthday cake, my mom brought over balloons, and Kristi brought her kids... a real party was pulled off last minute.

Ezra is pretty awesome. He loves to wear his pajamas all of the time. He is totally loves being home. I am amazed how well he is doing with the new house... he wants to be home here. His main request for his birthday was chickens... what kind of kid wants chickens for their birthday? We didn't get him chickens... but he seemed to forget about them when he opened his presents and got to eat his cake. Ezra is such a companionable person. And lets talk about his mad style... t-shirt tucked into boxer briefs as party wear is a must!

Crazy busy life

On Tuesday we got home from a 10 day vacation up to Wasilla to see Ian's family. The kids loved being up there pretending they were farmers... the weather was great and they were able to spend a lot of time outside. Eve loved waking up in the morning and going to feed the chickens. Ezra was all about the chicken eggs... boy does that boy love collecting chicken eggs. Evan just loved so much outside. He never wanted to be inside. 

In usual Roskam style we just had to check out the emergency room up in Wasilla. Ezra got a fever so we (really Ian) had to take him in for the usual blood work that goes with that. Poor boy had an ear infection.

We got home Tuesday and had our final walk through. Wednesday we signed all our documents. Thursday we got keys to the house. We started painting last night. All this business is why there have been no blog updates. Soon we will get out the camera and take pictures of our new house.

Blessed

For the past few years I have felt like life has really crapped all over us. I know that is not true. We have a ton of blessings... but I have felt like we have really been buried in challenges that have seemed overwhelming. Right now I feel like so many good things are on the horizon for us and life feels awesome! We are hopefully closing on a house this month. Woohoo! A place of our own, a place where there are as many bedrooms as we need. We are so excited about it!! Yesterday we got a call from the National Hemophilia Foundation and we told we were awarded a grant to attend the NHF annual conference in... Anaheim, CA. All day today I have just felt so overwhelmed with all the great things happening in our lives.  I am sure tomorrow life will give me a nice correction to let me know it's boss (bird will totally poop on my head, I know it).