So Thankful!!

Happy Thanksgiving Everyone!!
This morning I was thinking of things I was thankful for and the list was never ending. I am so grateful for my husband, he pretty much rocks! He is so patient and such a rock in my life. I am so happy I can always rely on him to be there. I am so thankful for my children. They are always amazing me and bringing so much joy into my life. One toothy smile after a day of cleaning up poop and listening to screaming makes it all worthwhile. I am so thankful for all of our family. They have supported us in numerous ways this past year and without them I don't know where they would be. I know all the things they have done have really kept me from totally breaking down from the stress, they have really carried my burdens and I am so happy that they are willing to do that for us. I am thankful for good doctors! I am so glad that we have them and that we don't have to live our lives in constant fear of what is next for Ezra. I am so thankful for so many things but those are some big ones I wanted to share with everyone.

Life

I think this is a nice blood booger that any boy would be proud of... just another war wound. This actually just happened when he was pushing around something and bonked his nose on it. Am I bad mom for grabbing the camera when the blood booger came out (many hours after the bloody nose) instead of just cleaning his face off?

How come no one told me just how much trouble boys could be? Okay I know it just isn't boys but man I was so lucky that Eve was not a super wild child. It seems every time I turn around Ezra is up to some other type of monkey business or just when I think I have the house "childproofed" he goes and does something new to prove to me just how impossible it is to childproof. His latest thing is climbing.... climbing everything. Why couldn't my child that doesn't have hemophilia be the climber??? I guess that extra dose of wild comes right along with the hemophilia gene. Or maybe he sees his older sister climbing up things and thinks he should be doing it. I think that MAY have more to do with it than anything. So now my time is spent at trying to keep Ezra from climbing everything in sight.
Other things going on around here... the kids are loving the baby in my tummy. Ezra comes running anytime he sees my belly (which happens more than I would like to admit... darn gigantic belly of mine) and Eve has to give the baby a hug and a kiss every night. I am surprised the difference 17 months makes with Eve. When I was pregnant with Ezra she just noticed the belly getting bigger and had no interest whatsoever. Now she is so excited. She loves to feel him move and sing him songs and tonight when I was cuddling with her before bed she was just rubbing my tummy and said she was rubbing his back to help him sleep. I am so happy to have those beautiful moments. Especially now that they are nice quiet moments... who knows what our house will be like 3 months from now.... I am sure our world will just be rocked... but isn't that a good thing?

Our little doctor....

Today we infused Ez for the first time at home!! YAY! I am so excited to not have to drive to town and wait at the doctor's office and make the whole process draw out to take up about half of my day with the driving and dropping Eve off somewhere. It was so nice to just do it and be done with it and still be home going about our day.
Eve hasn't seen Ez's port accessed before. I was worried about how she would handle it but she decided she wanted to do things to help. I thought it was hilarious. It was interesting to add a "helpful" sister to the mix in the infusion process. She decided that all of the pretend stuff in her doctor's kit was crap and that she needed real stuff like mommy and daddy use on Ezra. I let her put gauze on after I pulled the needle and she was so excited!!

Halloween

It felt like Halloween celebrations lasted for two entire weeks. There were lots of opportunities to dress up for the kids and plenty of activities for them to do. By the time Halloween rolled around Eve's bee costume was in the wash and of course she decided her many princess dresses would not make a good costume so she decided to dress up as a nurse... to match Ian's scrubs. She used Ez's hospital gown from his surgery for her shirt. It was so hilarious. Ez really loves the candy. I still have a bowl of Halloween candy in the kitchen and it is going to have to go out of sight because when he sees that he doesn't want to eat anything but candy.
I added some pictures of Ezra dressed up like a beautiful princess. Sometimes he does it himself and sometimes Eve helps him dress up.

What we have been up to...

I know the blog hasn't been updated lately. Believe it or not it has just been busy around here. We are learning how to access Ezra's port. This means going to town twice a week to the doctor's office while the nurse observes us poking Ezra. So far Ian and I have both successfully poked Ezra once. Hopefully by the end of the month we will be infusing at home and then life won't feel quite so crazy.

So my favorite picture is the bottom right one... I call this Ezra's hospital clubbing look. The little tank was made out of mesh to keep him off his tubing. He ran around in a diaper and clubbing tank with his bunny slippers pretty much the entire time we were in the hospital... it just makes me laugh.
We did have a little drama Tuesday night. The little cap on the line for needles to insert into the line popped off... notice on the picture above that this is before the clamp... so blood started pouring out. Of course we weren't even at the hotel we were in Old Navy. Ian figured the best solution was to put the cap back on even though it wasn't sterile because otherwise he would be bleeding like crazy. I thought it was a pretty good solution... I am sure someone else would have done something else but it sure worked for us. We had to bring him to the ER because we knew there was a chance of infection. They drew blood to try to see if they could grow anything. They took out that line and put a new line in and flushed the blood out of his port. What craziness!!
After that on Wednesday morning we were totally off our game. We forgot to bring factor to his appointment... luckily the hospital pharmacy had some in stock. Ezra was so good during that infusion and when they pulled the line. He was happy to be able to bathe... and man I was happy he could because he stunk so bad!! Little sponge baths just don't to the trick on a messy toddler.
We are so happy to be home. Ezra was so happy to see Eve and Eve was so happy to see Ezra. It was just too sweet!

Pictures later...

We have survived the port surgery!! I think it was harder on the parents than it was on Ezra. He did so well. They took him back for surgery and it wasn't even crying about it. Then we didn't get to see him until about 2 hours later... the surgery didn't take that long but getting an IV before surgery and the time in the recovery room added onto that. After his surgery the surgeon talked to us. She said it went well... it took a few pokes to get an IV in his veins even after giving him a little gas to put him out. Sadly that was a little relief because it meant that we were really getting the port for a good reason and it made me feel like it wasn't just because we live in the middle of nowhere and doesn't mean that the nurses are horrible in Ketchikan.
He came to his room snuggled up on some male nurse looking so adorable. After a little rest he was up and running around. We couldn't keep him in the room, he was flirting with the nurses and running around the halls.
We got released from the hospital Friday with his port accessed. They taught us how to infuse and we are just hanging around Seattle waiting until Wednesday when they pull the needle out and he will have no strings to worry about. I am so happy about the infusion... it was so much nicer than a hospital visit... and it was so great to do it and then go on with our day. I am excited to learn how to access his port and move to always being able to do it at home... I mean it is scary to think about poking my squirmy toddler... but way better to have some freedom.