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.

Siblings

Sometimes these kids are such awesome siblings. The other night Eve decided that Ezra could "huggle" with her at bedtime. She sang him songs and snuggled him until he was fast asleep. It was absolutely adorable!!

Evan and Ezra are being the typical brothers lately. It cracks me up. The picture where Evan has something pink is the tote for Eve's beads... a no no for the boys. They got their paws on that real quick and spread it all over the floor. I laughed because it was such a classic sibling moment.

We are feeling a little frustrated over our communication with our health care providers lately. We thought Ezra's bleed was done and then Monday morning a stiff legged pirate hobbled out of bed... 

So this meant we needed a new plan for Ezra. After a few days trying to get a hold of the right people who were on vacation Ian got a call from our hemo nurse. There was a lot of confusion and miscommunication which frustrates me. In the end we now know that for some reason Ezra's dose of factor doesn't push his levels as high as it should. Luckily they haven't discovered an inhibitor so it is just one of those things. So we are increasing his dose and going back to prophy every other day.

On the funny side of our lovely world we got a delivery of factor and supplies today. While I was cooking dinner Ezra ripped into the boxes are starting wasting saline syringes like crazy. By the time I figured out why Eve was screaming about Ezra getting her wet he had burned through 10 syringes of saline.

Back to the same old crazy

Today was not a normal infusion day for either boy... but sure enough we infused both of them. Evan was because Ian accidently gave him the wrong dose yesterday. He was entering the infusion into our infusion log and was wondering why he had a 250 sticker instead of 500.... oops. These things happen.

Ezra got his first joint bleed in a long while. Oh how I didn't miss them. Yesterday before we infused I thought he was walking a little off but when we did a joint check he seemed to be fine. This morning there was no question. Crazy how those things happen. Poor guy. The worst part is when he hurts if other people bug him he just takes care of that real quick by biting them. Awesome huh?

Eve added to our wild craziness yesterday but getting sick. In one of those hilarious moments. She projectile vomitted all over Ezra. Like it was plastered to his face. Poor boy. 

So we have had a nice day hanging around the house watching cartoons being lazy. It has been awesome!

Ferry ride

This year is the 50th anniversary of the Alaska Marine Highway. We love the ferries around our house... and only partly because that is who Ian works for. Part of the celebration was offering a cruise around the island. Ian had wanted to do that with me back when we dated in high school... so we were totally in. We brought our entire crazy crew on the 12 hour adventure. Eve and Ezra got temporary tattoos, played a lot with ropes, purchased something from the gift shop, and took lots of crazy pictures with the camera. The weather wasn't perfect but it wasn't horrible either. We were able to walk around outside for a while before being soaked totally through and for the most part we were able to see all the cool things that were out there. We didn't get many pictures of them though because Eve and Ezra were in love with the camera and often the picture was of their finger instead of the awesome stuff that they were seeing... but who cares? Luckily we had family on the ferry with us and they helped entertain the kids. Ezra actually fell asleep with a fry in his hand in the cafeteria!! So I would say it was a success!!

Infusion baby

On Thursday after I did Ezra's prophy he told me "baby's turn." So we poked a water baby. This all happened while Eve was at school and when we talked about it I could see she was interested. She asked me if the water baby was leaking water (a concern I had but I thought oh well) which it wasn't. I thought that would be the end of that. Then this morning when we started putting the numbing cream on the boys Eve and Ezra both wanted to infuse their babies. Don't worry we did not push real factor into the babies... Ian was thrifty and recycled the syringes from the boy's infusion so we could use them on the babies. The kids were thrilled... and there were Dora the Explorer band-aids to go around.