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).

Happy Father's Day

Eve filled out this hilarious form about Ian for Father's Day. She thinks that Ian is 16 years old, and he really likes to sleep. If she could give her dad anything she would give him more sleep. Can't tell sleep is so very elusive at our house, can you? Today was a beautiful day, the type that we don't have too often here in Ketchikan. We enjoyed the day and splurged on take-out so that no one had to cook. I am glad that my kids had a great Father's Day spending quality time with their dad, nothing can replace that.

Around these parts...

This past Saturday we were out past the kid's bedtime. So of course they fell asleep on the way home. Did we gently change them into pajamas? No! Do I look like a crazy lady? The boys went to their own beds but at five in the morning I finally gave up the good fight to have some space in the bed.

Last Thursday was Eve's last day of preschool. She is so excited that she gets to be a kindergartener (mostly because that means she isn't stuck on the baby playground anymore). She filled out this about me form and she says she wants to be a ballerina/teacher when she grows up. The most hilarious thing on her about me thing was what she answered for something that she loves to do.... cleaning toilets!! She really does love it... she is always begging me to clean them but I didn't think it was that high on her list of fun things to do.

The most hilarious thing I have been doing lately is my mission to spend our health care reimbursement account money. For some reason we thought it would be good to contribute enough to cover our deductible... sounds logical to me. If anything we thought that we would still end up paying some expenses. Instead the way it has worked out with the boys having the secondary insurance that they have means we did not need to contribute as much as we did. So I thought the quickest way to spend it before the end of the month (when it will just disappear) is to order glasses. After all for a month I was stuck with a pair of glasses that were missing one stem... I called them my trendy opera glasses. So I ordered a pair for me and a pair for Ian. Man it felt good to chip away at a big chunk of our hcra account. The next day they call and say that there was a problem with my order but not to worry they are discounting my order to help compensate for the problem. Then again I called today with a problem and sure enough more money came off the bill. I finally said "Listen up, I don't want more discounted I just want my order and my receipt to match!" I know it is a good problem to have but it is very difficult to spend this money when people keep on trying to be nice. So if you see me clearing the shelves of all the colorful bandaids at Walmart, you now know why.