Triumph

I have really enjoyed 2013. I feel like after life beating us up for a few years we are finally getting somewhere. For all of 2013 both boys had ports. This means that when things go wrong (bleeds happen) we are able to take care of it at home, for most things. I love this freedom. I hate, absolutely hate, taking the boys to the emergency room and justifying why we're there and just praying that the doctor will understand the situation because the sooner they get factor in their system the better. The only emergency room visits we had this year were just because the boys had fevers and we needed to make sure that they don't have port infections. So much better!! We have some super busy boys. Evan is aiming to be the first child to break a bone, so without prophy and the port we would be regulars at the emergency room. 

We were also able to experience something awesome about having hemophilia. Being part of the bleeding disorders community. It is really cool to know that we aren't alone and that there are so many willing to share their experiences in hopes to help us on our journey with our boys.

We were able to buy a house. We had been living in a 2 bedroom apartment since Ezra was around 4 months old. It was feeling increasingly small. I dreamed and dreamed of getting into a place with just one more bedroom. Sometimes when you think one little thing will make a difference and when you get it you realize that was just a dream. This was not the case. Having 3 bedrooms is so much better. Let me tell you. There is so much more peace in our house this way. We are so thankful for all the people that helped make it possible for us to buy our house. 

Another highlight for us was our first non-hospital vacation since Ezra was diagnosed. It was awesome! It was nice and warm and so much fun hanging out with Ian's parents and siblings up north. I didn't realize how much we needed the break but it was so good. 

This year has been good to us. We have been pretty normal and boring and I am so thankful for that!! Just hoping that we can have a relatively calm 2014.

Christmas

Sometime around Thanksgiving Eve made a Christmas list. She was really dreaming with all of those things that were on her list. I think she ended up getting pretty much everything that was on her list. How does that happen? Lots of amazingly generous family members, that's how!! Thinking of highlights of Christmas for each of the kids. When I asked Eve what her favorite Christmas gift was she said that she loved them all and couldn't choose. Love that girl. The best part about her is every time she plays with a gift she remembers exactly who gave it to her and gives them credit. I don't know how she learned that but I think it is really sweet. I think Ezra loves all the "wegos" that he received. He loves to build and now he has more legos than he knows what to do with. Evan was a typical 2 year-old and couldn't get past the first gift he opened. It will probably take him days to actually discover all of his gifts. They have been opened thanks to some super helpful siblings. I think the best part of the day for me was the popper fight with Grandpa Al... love being with family.

Vampires

Every time we get a factor order I look at the big box labeled with Puget Sound Blood Center... that says refrigerate upon arrival and I laugh. After reading or watching Twilight which person doesn't at least for a second think vampire. We are happy to have them keep on guessing, add a little mystery to the world.

Happy Birthday x 2

Eve and Ian love counting down the days until their shared birthday. I think that it is pretty sweet that they share a birthday. Poor Ian got a cake with pink sprinkles on it... but he's not complaining. We had a fun time with the birthday people! Now we have a 6 year old in the the house and someone else turned 30.

Thankful

There are so many things that I could say I am thankful for today. We really are very blessed. I am thankful that we haven't been to the emergency room in a few months (knock on wood). I am thankful for my amazing family members. As much as I wouldn't choose the challenges our family has had in the past few years I am so glad to see the way that we have all stepped up to the challenges life has brought us and grown. The other morning when it was time for prophy Eve decided she would get the boys band-aids, Evan got out the tic-tacs, and Ezra grabbed the t.v. remote to get Octonauts on for infusion time. These kids are amazing. They are growing up being so empathetic and loving.

Winter Wonderland

 

On Saturday we got a little bit of snow. The kids were pretty excited. Ezra brought the littlest snowballs I have ever seen into the house to hit everyone with a snowball. It was pretty adorable. Eve wanted to make snow angels in the driveway. There wasn't enough snow to make a really good one though. She made the angel and you could see the gravel of our driveway. Last night it actually snowed a few inches and the kids were so excited. They wanted to go outside and play in the snow as soon as they woke up. I was able to keep them in long enough for them to eat breakfast and then they were outside. Evan cracks me up because he refused to wear gloves but then he started crying because his little hands were frozen. I couldn't even get him to put on gloves then. Ezra and Eve were just happily playing in the snow with the proper snow gear while Evan was being stubborn and crying. He wouldn't even move. Just stood there frozen and crying waiting for someone to come save him.

Our crew

Here is our band of pirates with the tick-tock croc on Halloween. They are just too hilarious.

NHF Annual Conference in Anaheim!!

Our world here in Ketchikan is small. Unless you want to fly or take a long ferry ride out of here there is really no where to go but Ketchikan. In some ways this is nice. I don't know if I have ever gone to the grocery store without running into a least one person I know. In some ways this is isolating. Add to the mix a bleeding disorder and some times we feel so very alone. I know there are others out there but we don't get to go to any NHF chapter meetings (it is just too darn expensive to get off the island). Other than the blogs I regularly stalk, prior to our trip to Anaheim, we had talked to two people with boys who have hemophilia.

When we got to the NHF meeting it was great to sit around and have an opportunity to talk to other families who were new to the world of bleeding disorders. I enjoyed hearing the stories of how their sons were diagnosed and how they dealt with it. It was great to be able to share and receive advice from others who truly understand what we are going through.

There were a lot of sessions to choose from to attend and at times it could get overwhelming. There are a few sessions that really stand out to me. I loved hearing about how gene therapy trials are going. From that session I learned that they are further along in gene therapy than I thought. I know it still has a long way to go... but the hope that brings is amazing. I also was excited to hear about the genotyping project because it just makes sense to me. I can't wait until they have it set up so that we can get the boys' genotype in there for research purposes.

A not so medical session that I really enjoyed was one about the sibling situation. It is tough being a sibling of someone with a bleeding disorder. So much of  Eve's life is focused around infusions and medical appointments that I feel like she gets robbed of the attention I would like to give her. I was curious to hear what the siblings would say. There were two women that had brothers with bleeding disorders and a boy who had hemophilia and also has a brother with hemophilia. Overall I got the message that there really isn't any resentment of the sibling with a bleeding disorder, they just resent the parents (awesome huh). Other than that I think the best we can do is keep lines of communication open. The boy who spoke just made me cry. The way that he talked about his brother was just amazing. I have felt so guilty having these two boys with hemophilia. Hearing his story makes me feel so much more hopeful. The picture he painted of his relationship with his brother is exactly what I want for my boys. I want them to be able to talk to each other about anything and have such empathy for what the other one is going through.

We ended out the conference with a night at Disneyland. It was awesome to have that opportunity. Disneyland was super crowded but the kids enjoyed it. So I am not going to complain any more than saying it was crowded.

I think we went away from the NHF conference feeling a little sad that we don't really have the opportunity to be involved with any NHF chapter. The reality is we aren't moving from where we live now. We have an amazing support system here, a great job, and an amazing community. We will try our best to do something. I know when our kids are old enough to go to hemophilia camp (starting at age 7) they are going!!!

My dad was able to come to Anaheim to. It was fun for the kids to get to spend time with their Grandpa Lynn. He took us to California Adventure one night and was even suckered into riding a super wet ride with Eve. The kids loved having him to walk around with and it was great having another adult there. I am glad he was able to come. 

This is Eve in Disneyland. You may notice the bruise on her eye. The night before we got on the plane to Anaheim Ezra threw a book at Eve's face. Awesome huh? Evan didn't want her to be alone on being bruised and fell off the bed at the hotel when we was jumping and hit his head on the nightstand.... good stuff.

We got to see the Halloween fireworks show and played until the boys dropped.  Overall, the conference and the trip in general were worth the 4(2 down, 2 back) plane rides with a grumpy Evan.

Kindergartener!

So Eve started kindergarten last week. She was so excited about it. So far she loves her teacher and lucky for her most of her friends from preschool are in her class. It is a tough transition to full day school. If she rides the bus she gets on the bus a little after 8 and doesn't get off the bus until 4. Poor Ezra cried when she got on the bus the first day. "My miss Evey-roo." Luckily he and Evan are adjusting to her being gone so long pretty well. They are loving being able to break into her room and play with her toys. 

My little Ez

Sometime yesterday I remembered that Ezra's birthday was today. At least I didn't forget it completely right? Luckily I had purchased his birthday present last month and miraculously it wasn't lost in the move. I hadn't planned his birthday like I wanted to, didn't have his present wrapped, and hadn't invited anyone over. A 3 year old doesn't care about these things. We pulled off a lovely last minute birthday party and he wasn't feeling like he was missing anything. My friend Kristi made him a birthday cake, my mom brought over balloons, and Kristi brought her kids... a real party was pulled off last minute.

Ezra is pretty awesome. He loves to wear his pajamas all of the time. He is totally loves being home. I am amazed how well he is doing with the new house... he wants to be home here. His main request for his birthday was chickens... what kind of kid wants chickens for their birthday? We didn't get him chickens... but he seemed to forget about them when he opened his presents and got to eat his cake. Ezra is such a companionable person. And lets talk about his mad style... t-shirt tucked into boxer briefs as party wear is a must!

Crazy busy life

On Tuesday we got home from a 10 day vacation up to Wasilla to see Ian's family. The kids loved being up there pretending they were farmers... the weather was great and they were able to spend a lot of time outside. Eve loved waking up in the morning and going to feed the chickens. Ezra was all about the chicken eggs... boy does that boy love collecting chicken eggs. Evan just loved so much outside. He never wanted to be inside. 

In usual Roskam style we just had to check out the emergency room up in Wasilla. Ezra got a fever so we (really Ian) had to take him in for the usual blood work that goes with that. Poor boy had an ear infection.

We got home Tuesday and had our final walk through. Wednesday we signed all our documents. Thursday we got keys to the house. We started painting last night. All this business is why there have been no blog updates. Soon we will get out the camera and take pictures of our new house.

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.

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.

Hippity Hop Hop Easter's on it's way...

When we got home from church yesterday we discovered that the Easter Bunny had hid a ridiculous amount of eggs outside. Eve and I got home before my mom and Ezra and she could not wait for them to get out there so she could start collecting. As soon as she saw my mom's car driving down the road she was out the door and collecting eggs. It was adorable. Ezra had fallen asleep on the drive home but Eve made sure he woke up to collect eggs... no way was she going to wait any longer than she already had. Eve quickily decided her little bucket did not hold enough so she carried around a big box to put her eggs in. Maybe next year she will get a box that has been decorated. It is so fun to have so many eggs... they don't get possessive with the eggs. Each of them were happy to help each other out, and they know that they would only get a few pieces of candy anyways and the rest would go out for rewards/bribes/treats until the next holiday. Evan slept through most of the Easter egg hunt. He was fine with that because what he was really interested in was the candy when we brought them all inside. Oh that boy and his candy addiction. He is so messy when he eats it too. 

Then we had dinner with my mom and Andrew, Grandpa Syne, Grandma Helen, Uncle Todd and Trevor. It was a good time. 

March

Spring is here!! Someone forgot to tell the weather that... but oh well at least the we have more daylight. This past week was spring break. I don't know how I survived. It is a tough age difference right now with some kids (and mom) needing naps and a certain preschooler being unable to keep quiet. There were some sweet moments of sibling play in there somewhere... but my ears are still ringing from all the screaming and fighting. 

We are doing just fine. Nothing exciting going on. Evan is walking all over the place and is up to his usual shenanigans. Ezra is busy telling me "me do it" pretty much about everything. And Eve is loving school and trying to be helpful.

The human body is AMAZING!!

 The other night I was looking at hemophilia blogs and came across a picture of a boy that has hemophilia and has inhibitors. Inhibitors are tricky little devils and a word I fear hearing from our doctors. When you have inhibitors your body attacks the factor you administer... making it much trickier to treat bleeds. Well anyways this boy has a lot of bruising... and some of the bruises are not from anything you would expect to cause a bruise... one of his bruises was from the belt on his five point car seat harness. Not from a wreck in it but just from being in it on a normal car ride.
All I could think of when I saw that picture was how fragile our bodies are and how busy our bodies are activating the clotting cascade every day. This is not something I thought about EVER before our little journey into the world where clotting cascades simply aren't able to do what they need to do. Seeing all these bruises on my little boys, especially the bruising they got prior to prophy, just makes me realize just how often that cascade is working. And this is just one tiny part of how our bodies take care of us... don't even get me started on what I learned about our bodies from talking to a mom who has a daughter with cystic fibrosis. I am just amazed and thankful for our bodies and the amazing things they can do...

Comprehensive Clinic

We got back last night from our trip to Seattle for a comprehensive clinic for the boys. Good news is they look good. Both boys have full range of motion in their joints. Hooray!! They also think since we haven't had any breakthrough bleeding on Ezra we can try to back off to 3 times a week and see if that works for him. The fewer pokes the better for that guy... as long as he doesn't have any bleeding. So now both boys will be on the same prophy schedule. Hopefully that is easier to keep track of. Otherwise I guess we are doing the best we can and the boys are doing really well so a big pat on the back for the parents.

We had the worst time getting our travel approved to go to Seattle. It was just the weirdest combination of things that made it horrible. First off getting the appointment scheduled early was easier said than done. This month was the first comprehensive clinic that our clinic has done so it took them longer than normal to get it all set up. Then insurance thought that one parent was plenty for both boys... after all the only time they were scheduled to be in two places at the same time was when they were being infused... no need for a second parent then. Even though they were in the same place at the same time we had two providers in the room at once each asking questions... so one parent handled one provider while one parent took the other one. It was super wild and crazy!! Anyways back to the craziness of getting our travel approved... Ian did some major work to get it all together. He spent a ton of time on the phone finding out what the hold up was and making sure the right people got all of their stuff. In the end a letter of medical necessity was what got both of us approved to travel. It was an anxious couple of days around our house leading up to our visit not knowing if we would even be able to go to our appointment. Luckily Ian is persistent and patient.

We are a happy family...

I love Wednesday nights. We have this crazy schedule during the week and Wednesdays seem to be the night when we can just hang around and not have to be anywhere. That means plenty of time pretending to be trolls, knights, dragons, princesses, and princes. I love being home because even though the kids are still crazy it doesn't freak me out as much as when we are out. So the boys climb the furniture and go all crazy just being kids. 

Brotherly Love

Every day while Eve is at school these boys get to play together. Sometimes it is a little bit hairy. Yesterday was one of those days. I figure if the day starts out with a costco sized bag of craisins all over the floor it probably isn't going to be the greatest day. Ezra is obsessed with turning every straight thing he finds into a sword... as I am sure most boys do. Then he likes to stab Evan with his swords. Lots of fun around here with that one. But then there are days where they just enjoy playing with each other and I think wow... this is amazing.

Ezra and Evan both love this toy.... they fight over it... or they share it. We like to encourage sharing... but that doesn't always happen. 

I've got you babe...

The other day someone asked me how long Ian and I have been together. That question is a lot harder to answer than some people would think. Ian and I started dating all the way back during my freshman year of high school. Can you believe that? Every time someone asks me how long we have been together I don't know when to start counting. We dated, we broke up, we dated, we were friends... and then somewhere along the way we got married. Wait! How did that happen?!
Sometimes I feel so guilty about all this craziness that comes with my genes. I wonder if Ian sometimes dreams of the life he would have had if he had married some non mutant. Of course I've asked him this and his response just kills me... "No, because I would rather be helping you deal with this."  I love him for that. And he is a huge help through all this wildness. There is no one I would rather be going through this with than him. I am glad that he stuck around. 

All I can think of in honor of Valentine's Day is the lyrics of I've got you babe.... 

[Sonny] I got flowers in the spring I got you to wear my ring
[Cher:] And when I'm sad, you're a clown
And if I get scared, you're always around
[Cher:] So let them say your hair's too long
'Cause I don't care, with you I can't go wrong
[Sonny:] Then put your little hand in mine
There ain't no hill or mountain we can't climb
 

Yet another ER visit...

How did we go over a year with Ezra having a port before we had to take him in because of a fever? I think it is probably because I was pregnant and had a new baby and we never went anywhere to pick up germs. Yesterday we went to gymnastics.... the breeding ground of all good germs in Ketchikan. Ezra sure loves it there... my nerves don't love it there so much. One time he fell and magically cut his head open while at the very padded gym. If I remember right this was before Evan was born. Can you imagine watching two little boys going in different directions while other kids run wildly around them... this is what I decide to do for fun on a Wednesday? Anyways...

Evan woke up from his nap yesterday afternoon feeling a little warm. I thought I better keep track of this fever. Easier said than done. I spent an hour cleaning the house looking for the darn thermometer that actually works. The one that doesn't really work said his temp at 99... not much to worry about. Then I had to 

torture my one year hold by making him hold still enough for the thermometer to read. Is it just me or do they take forever? Well it didn't finish reading but it got up to 101.7 before he decided he just wasn't having it.

 I thought the earlier we got to the emergency room to have his blood drawn out of his port the better. But I was also in the middle of making dinner and making our bread for the week. So I called my mom to come watch the kids and my bread while we went to the ER and we set down to eat dinner. Then we called the hemophilia nurse to give her a heads up about what was going on.

At the ER the doctor was not on top of his game... I think that is a nice way to put it. Doesn't anyone read a chart? So he said Evan had an ear infection and was ready to send us on our way with antibiotics... I said so  don't we need to have blood drawn out of his port to check for infection. He was like oh he is the one with the hemophilia.... A real gem of a doc. I know he was probably tired. It was the end of his shift but come on! Then the lab came to draw blood out of Evan's vein. Ian said what about his port... they had to check to see if that was okay. It better be okay because that is where it needs to come from. So they had us access his port and they drew the blood out. Then we flushed his port and they sent us home with antibiotics.

So today I had to go follow up with our pediatrician. Evan doesn't have an ear infection. Just as I suspected. He does have a cold... just as I thought. We have to keep an eye on him and wait to see what happens while they grow the cultures (takes 5 days). I wish these things would happen when our clinic was open. Our doctor is really amazing... can't she just be there 24/7? At least we have a hemo nurse on call at all times.

The little things

Last night Ezra was having a hard time going to sleep, nothing new there. One of the many times he yelled for me I went in and his medic alert had broken (again). I can't count the number of repairs we have done on that darn thing. I was so frustrated. I hate when the links start coming open and scratch his skin. I hate when he gets them stuck in the carpet and is trapped. Evan's is lost who knows where.... So I ordered new ones. We are going to try out the silicone band ones. They may not work... who knows. If they don't I will willingly go back to our old ones and the problems that go with them... but here's hoping that this will be more comfortable and still functional for the boys.

Looks who's one!!

A year ago today I met this sweet boy.

When they first pulled him out of me they commented on how big he was.... Ian and I didn't think he was that big... we still thought of Ezra as our baby. That quickly changed. Those first days were so sweet. I loved cuddling this little guy and how nice and calm he was. He was saving up all of his crazy for later. He is still quite the handsome little man and my heart melts just thinking about him. I can't imagine my life without him. I am so grateful he completed our family.

 Currently he loves rocking out to music. He also loves clapping for anything... probably something that started when we were potty training Ezra. He eats like a teenaged boy, at least one of our kids will eat anything we put in front of them. One of his favorite things to eat are those applesauce pouches... he can down those in under a minute.  He loves pushing cars around the house... but also loves stealing whatever toy his siblings currently are playing with. He finally has teeth. He has two that have really broken through and another two on their way. He will walk about five steps right now.... but thinks he can run.
A year.... so much has happened in this past year. At a few days old his blood tests came back that he had hemophilia. At somewhere around 8 months he had his first joint bleed. At just shy of 9 months he had surgery to get a port. How many times has he split his frenulum? I know I have lost count. This boy is trouble!  I spend most of my time trying to balance keeping him safe(ish) and letting him have a normal childhood.

Evan has been having a tough couple days... we thought it was this nasty cold. But after a while we thought maybe it was a bleed. Pretty sure it was a bleed because after a bleed dose of factor he acted much more like his normal self. Hooray!! That meant that he really enjoyed his birthday instead of just whining all day. He enjoyed a nice messy dinner, then a bath, then cake, then a bath.... then presents. What more could a one year old ask. Eve and Ezra selected special presents for him yesterday. They wrapped them in paper towels and were so excited about them. Ezra was so excited that he opened it for him. How adorable! Sometimes siblings are just amazing. Evan closed out the night with kisses... for everybody.

Double Prophy day...

My least favorite day of the week is the one day a week when we have to infuse both boys. Ezra's prophy schedule is every other day... Evan's is twice a week. So depending on the week their prophy schedules align on a Tuesday or a Friday. For some reason in my mind it just seemed like that would be easy; line them up and get it done. I think maybe it wouldn't be so bad if we could do it at our own pace... but there is a rush to at least get Evan infused before Ian goes out the door to work... and usually we try to get set up for both boys while we are at it. Try is the important word... looking at my records Evan usually happens at 8... so Ian is late for work and Ezra has to wait until after Eve goes to school and Evan goes down for a nap. That just makes me feel like I spend half of the day dealing with prophy.... but that is way better than spending half the day in the emergency room... or even the doctor's office.

It's the Protocol

It's been a long night.

I know it is a terrible picture but we are waiting to be released from the hospital and he was sleeping on my arm..  Since Ezra had his port placed we have not been able to give Tylenol for fevers.  Fever is a sign of a possible infection in his port.  So, when he has a fever we wait to see if it will go over 101.  Sunday was the first time Ezra had a fever that broke that barrier, 103.3.  A quick call to a hemo nurse and we were off to the ER.  I walk in and tell the receptionist Roskam, Ezra like we were there for an appointment.  I get a blank stare and the doctor behind the counter says "we've been expecting you" and we get walked right to a room.  Now that is what I call service.  The whole reason for this visit is to determine what is causing his fever.  One blood culture from his port, one from an arm, 4 additional vials from his arm for other tests, some unexpected chest xrays, and a fight for a urine sample and we were both exhausted.  Then we had to wait almost an hour for the prophylactic IV antibiotics. Tylenol kept his fever down for the night and he didn't need it the next day.  Now he is nearly back to normal.  Tomorrow we should find out what the cause was but it is pretty clear it was bacterial.  The real question is where the infection was.  During the follow-up appointment Ashley asked what we should do if Evan developed the same fever.  The answer?  The same thing, it is the protocol.  Feels strange to say this but I am looking forward to when the boys infuse IV.  Of course that has it's own set of problems but at least a fever doesn't mean a trip to the ER and blood tests.