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!!