3 Months Old

This boy is so happy! Look at his happy face... and gorgeous eye lashes.

Growing Boy

This is video that Ezra helped me get of Evan. Of course Evan didn't want to perform on command so we didn't get video of him rolling over... but man can he smear spit up all over himself.

Good news, everyone!!

The results are in on Eve's carrier testing!! Her factor activity level is 77% and she is not a carrier! Praise the Lord!

Here I was thinking my mutant genes were trying to make an entire mutant family... epic fail on their part, but us mutants still have the advantage in our household.

It's World Hemophilia Day

Which means we all are wearing red, or as close to red as we could find in our closets. How else are we celebrating? Two infusions in one day (pray that this finally stops this dang muscle bleed), a trip to the doctor's office for Ez (all because of stupid hemophilia), and then the good stuff... ICE CREAM for dessert tonight!

Little Ninjas

So Ian had to go to Juneau for a few days for work. Luckily Andrew was willing to come help me out while Ian was gone because we were on day (I've lost count) of infusing Ezra for a muscle bleed. We really don't know what to think about his bleed. It is better than the first day we started treating but he is still limping around and at this point I am not sure it is going to get any better. It is to the point where I wonder if I am imagining it... maybe Ezra has always walked limping like this and I didn't notice it... okay I know that isn't true but I feel like I am crazy. All I can say is that I am really hating hemophilia right now because I feel like it is totally kicking Ezra's butt and in turn kicking my butt. So we are going to try to figure out what is the next step because this is totally not acceptable. What is hilarious is bringing him in to the doctor saying he is limping and she can't be positive because he is a toddler... toddlers usually walk a little funny, how is she to know what is limping around and what is just toddling. It is just so frustrating. Luckily the doctor listens to me when I say something is wrong. She said go ahead and treat... and I am like duh I am already doing that but for the life of me I can't figure out where in his leg the bleed is. So she thinks the hip joint... then after a talk with the hemophilia nurse they think hip muscle... tricky little bleeds.

Back to what I meant to write about. Last night my kids were practicing their ninja skills. Ezra woke up at midnight because he had peed out of his diaper. So I brought him to my bed (after changing him) and he fell right asleep. Then when I woke up to feed Evan a few hours later there were squinkies in the bed that weren't there before. I had found them while I was cleaning earlier in the day and put them on top of my five drawer dresser. Somehow Ezra had gone all ninja in my few hours of sleep and pulled the drawers out to climb the dresser high enough to get down the squinkies to play with all without waking me. Of course he was fast asleep while I was feeding Evan. So I go back to sleep. The next time I wake up there are squinkies and money from Eve's money jar with a sleeping Ezra in the middle of my bed. Of course getting to the money jar required some climbing... but that is super easy for my little monkey man. So when I get up for the day of course Ezra is busy doing monkey business in my room... but not climbing. Just texting people on my phone, spilling water on my floor, and stripping naked (please let me think that is water and not pee). So I go out to the living room and Eve is asleep in one of our chairs with a couple pacifiers. (Don't get me started on that... she "kicked" the paci habit long ago... or so we thought but she now is a paci vulture.) Of course Andrew slept through all of the wild night... which he totally should I was just surprised he was able to. I was talking to Eve about the pacis tonight and I had to laugh so hard. The pacis she had were ones I don't remember being in Ezra's paci stash. When I told her that she said no they were from the cupboard. I had to laugh so hard. Andrew slept through Eve coming out and going to the kitchen, dragging a chair to get up on top of the counter and reach the highest shelf in the cupboard to get those pacis. Life is great. Good to know those kids a practicing their ninja skills at night.

Next time Ezra has a bleed and I don't know what started it all I will just have to blame it on his nightly ninja practice.

Easter

We actually got sunshine for Easter!! How lucky is that? When we came home from church the Easter bunny had dropped a ton of eggs in the yard. The kids had so much fun running around the yard finding them. The funniest thing that happened was a raven stole on of the eggs and flew off with it in it's beak. Too bad that happened before we all showed up... Ian and Andrew were the only witnesses.
It was a great day!

Would you, could you, on a plane?

or in an airport? While we were in the play area in the Seattle airport I noticed Ezra was limping around like a pirate with a peg leg. Too bad he wasn't pretending. The poor little guy was having a joint bleed. So being the flexible people we were we infused for the first time in a weird place, the family restroom in the play area. It was a reminder why we go through the inconvenience of bringing all of the supplies to infuse through security. Even though it is a pain in the butt at least we were able to start treating the bleed as soon as possible. We are still treating him and his limp is nowhere near as bad as it was on Saturday but it is still there. I am hoping that it will stop soon because I just want to cry when I see him wobbling around the house (when I am trying to keep him off his ankle).

2 Months Old

Wild man

So Ezra started jumping ship from his pack and play... so we broke out Eve's old toddler bed. It has been a difficult adjustment for all of us.

Seattle

Evan needed to go to Seattle for his first hemo appointment. We decided to make it a family trip this time. It was a lot of fun. Andrew flew down with us... which made our maiden voyage as a family of five so much easier. My dad drove to Seattle and spent time with us. It was lots of fun. We got to go to the zoo and even got to feed the penguins. I am glad we were able to make this trip fun because it gets depressing to go to Seattle just to go to appointments and then come home. I think it helped Eve to come along with us and see what it was all about. She came with us to Evan's appointment (Ezra roamed the hospital with my dad and Andrew), and she got her blood drawn so we could find out if she is a carrier. She is so brave!! She didn't even cry. Of course there was the promise of getting to choose a prize at the biggest toy store she has ever seen (doesn't take much to be the biggest toy store she has seen being from Ketchikan).
Evan's appointment went great. We got a plan of care set up and I feel pretty good about what is coming up for him.