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.

Huggle

Ezra is such a sweet boy. He is really into baby dolls lately. The other day when he put himself down for a nap (yes I realize I am super lucky that he will do this) I went in to check on him and he had tucked one baby into Eve's bed and was snuggled up with one himself. It is totally adorable. He has been taking dolls in the tub with him, to the grocery store, pretty much everywhere. 

Tonight he was having a hard time going to sleep because he really wanted me to "huggle" him. He has called snuggling huggling for a while and I think it is absolutely adorable. So I huggled with him and listened as his breathing changed as he fell asleep and I felt so overwhelmed with love for this sweet boy. I am so glad to have him and his sweet spirit in our home.

World Hemophilia Day

Sometimes I think that Eve doesn't understand what hemophilia is, or maybe she just wants to escape that world when she leaves the house. One of her friends was explaining hemophilia to her teacher... and Eve didn't want to say a word. She is so helpful when we are infusing the boys... trying to entertain or help in any way she can. She is very good at advocating for cartoons during infusions (I can't imagine why that would be). So in honor of World Hemophilia Day I thought maybe we could get a little bit of Eve's perspective on hemophilia.

What is hemophilia?

You have special blood. I think that's all.

What is special about your brothers?

They have special blood and you and me don't.

How do we treat them?

Put a port in their body.

What happens when they get a port in their body?

They get a really hard booby boob. ( I am seriously laughing so hard here. How do I keep a straight face? Their ports are right above their right nipple, so her description comes from that.)

Is it fun to have hemophilia?

No, you have to have a pokey poke.

Oh Shit!

Yes, that is an entire gallon of milk on the floor.  I asked Eve to help by putting the milk in the fridge.  I ran down to the car to get Ezra and come back to Eve screaming "MOM. Help. The milk is spilling on the floor."  Now I was expecting maybe the cap just cracked and I could stand the jug up and stop the spill.  But, noooo.  Eve lifted the milk above her head to get it in the fridge and dropped it.  The little circle on the side of the jug blew out and cracked all the way to the bottom.  When I walk into the kitchen the jug is standing up with milk pouring out the bottom. AHHHH! Milk everywhere.  Time to clean.  Eve was so apologetic. It was very sweet.  Eve is always eager to help.  Sometimes it is hard to remember there are limits to what she can do.  Lifting a jug of milk over her head?  Maybe she needs to pump some iron before next time.