11 Months

This boy makes me happy. I love the way he smiles so big that he scrunches up his nose. I also love his happy big belly laugh. When he is playing he frequently makes this sound that I like to call his evil dolphin sound... and it is totally adorable. I know it doesn't sound adorable but it is, believe me. He took a few steps the other day... but mostly seems insistent that crawling is THE way to get around... that or whining to mom to be carried. He continues to be a wild boy. He has a bruise that is now fading on his cheek from wild shenanigans with his siblings. He tries to climb EVERYTHING. He loves following his siblings around and he fits into our family perfectly... what more could we ask for?

CHRISTMAS!!!

 

Christmas has come and gone once again.  Now, I get to share the pictures of happy children that are excited that Santa ate all the cookies, drank the milk, and left a note on the plate.  They are excited about every gift and brighten up the entire room with their laughter and happiness.  Seeing my kids so happy is one of the greatest things about Christmas.  Having family over is very nice also.  My sister came down from Wasilla to visit and be the cool auntie during her break.  Eve has seen Anica more than I have in the last few years.  It is good to see her.  Trevor is living in Ketchikan and came over with grandpa and grandma.  It is wonderful to be able to share with everybody.  For all of the gifts that made the kids happy I have to say, thank you to everybody that gave them.  You have all brightened our holidays.

Double trouble!!

The 20th of December is a pretty important day around our house. Today Eve turned 5 and Ian turned 29. Hooray! It was a fun day. Eve spent a lot of her birthday acting very much like a 5 year old girl... lots of tears. But it's her party and she can cry if she wants too... right? Luckily there were no tears from Ian... even after the kids stole one of his presents and kept on blinding us with the headlamp. Overall a fun day and man I am tired.

Same old stuff

Well last night Evan split his frenulum AGAIN. Of course his big brother helped him out pushing his face right into a kitchen chair. Then not even a half hour later his big brother helped his head into the corner of a dresser. These kids.... We thought the biggest culprit of splitting his frenulum was the pacifier... so we have only let him have it in bed. If the real culprit is Ezra I don't know how to restrict that. Yes he got a time out...  but he is two, and for the most part doesn't think he is trying to hurt him... he thinks he is playing. So we try to be patient and just correct play that is a little too rough. Obviously we fail. Maybe I should just give in and get Evan a big ol' plastic bubble.

Oh the change...

Yesterday on our way out of church somehow Ezra managed to get a pretty good head bump. I guess playing with a bunch of 5 year-old girls is wilder than I imagined... pretty dangerous business. I heard him hit. I didn't go running. I was calm, I was collected... man am I proud of myself. My mom was right next to him and I slowly finished gathering my stuff together to head home to infuse... no panic. I am calming down about this whole thing...

My Princess

I am so glad that I have a girl with beautiful hair and lots of patience! I have been having so much fun doing her hair this school year. Last night she was watching tutorials with me and got all excited about the different hair styles. I think she has the next week planned out. I love doing something somewhat creative that she enjoys so much too.

10 months

And still no teeth. Evan is a wild man... the other night he climbed/fell out of the tub while Ian was running towards him. He has taken 2 steps on his own and then falls down or gets down and speed crawls. He is a happy guy lately. I feel like we have unlocked some special code on his sleeping.... he is FINALLY taking regular naps and sleeping pretty well at night (maybe not through the night but a huge improvement).

I had to include his bloody mouth picture from the other day. That is Evan... grouchy. Who can blame him? I wouldn't be too happy tasting blood all day. I can only imagine what people thought when they saw me toting around my bloody mouthed child. Life goes on though right... we can't stop life because of a little blood. Don't worry we treated him... but momma was not going to spend another day in the house with all 3 kids!

I can't wait to see how he reacts to Christmas. I think he is going to love the boxes and the wrapping paper. I also suspect he will like stealing his siblings presents just to get a reaction out of them. 

Frenulum

So we had a bleed free Thanksgiving... but Evan doesn't like us to get too complacent. He decided to crawl off of a tub of Legos and dive face first into the floor. This kid doesn't even put up his hands while he going towards the floor just takes the entire impact on his face. Of course I pick him up and yes there is blood coming from his mouth. Since he still doesn't have teeth there wasn't much question about where the blood was coming from. AHHHH! 

I think we should be able to order these kids without the frenulum... but I guess if I was picking options for kids I wouldn't necessarily choose hemophilia either. It would be nice if the kid at least put up his hands so his face didn't bang right into the floor when he was doing normal baby things. I mean I am not going to stop him from exploring things... I guess I would rather deal with the split frenulum than keep him from doing the things that a normal kid wants to do.

Thankful

Five things the Roskam Family is thankful for this year:
1. Our family (says Eve)
2. Lion (says Ezra)
3. That the power didn't go out. (says Ian) There was a high wind warning for today which called for some pretty strong winds so the power going out was a very real possibility.
4. A bleed-free day. I am sure both of the boys appreciated this but I will say this is from Evan since he can't talk.
5. Ian... he is a good provider for our family and makes it possible for me to stay home with our crazy crew. Plus he spoils me... what more could I want?

Super Evan!!

Yesterday Eve decided that Evan would make a pretty cool superhero "like Superman, you know mom?" With a backwards bib as his cape. Pretty cute.

I think (knock on wood) we are finally getting to a normal place with this tiny little trouble maker. His cultures came back that his port wasn't infected... it was just the outside skin that got infected. I am so relieved. Then he started to get hives as a reaction to his antibiotic... what can I say this boy really likes to make sure we worry about him. Doesn't want to be forgotten being our third kid. Today we just got the word to stop the antibiotic!! So hopefully his hives will go away super quick and he won't be quite so fussy. Now the only thing we need to do at the doctor's office is get the flu shot for him. I nominate Ian for that chore.

Seriously?

So this morning when Evan woke up I went to change his diaper... and saw a spot of dried blood on his onesie. Once his clothes came off it looked like this.

It shouldn't be bloody at all what was his body thinking bleeding like that? Probably that he's a hemophiliac or something crazy like that. So we had to call to find out exactly what the plan was... big problem. I guess our pediatricians office hadn't been in contact with our hematologist about Evan's suspected infection and the hematologist wasn't too happy about it. So I spent the morning on the phone with the hemophilia nurse and our pediatrician's office. 

Then I spent the afternoon at the pediatrician's office and the hospital. They drew blood out of his port to check to see what exactly was going on in there with the infection. Then they infused some antibiotics into his port, then they pulled out his huber needle and sent us home. Yay home!! I immediately went to wash off the hospital grime. There is a message on the answering machine reminding me of Evan's follow-up appointment tomorrow. This kid is trouble. Anyone want him dropped off on their doorstep?

Lots of stuff

Today the Fedex lady got quite the workout! She had to carry all of these boxes up our stairs. Factor and supplies for two boys with ports really adds up. The kids think it is like Christmas. They play with bubble wrap, make forts out of the boxes... mom on the other hand doesn't want to think about where to put it all. At least that is the biggest worry about factor for the boys... we know that if we need it we can have it and insurance will cover it. That is a luxury that I am SO thankful for especially since according to Ian (I don't do math) the cost of just the factor for this two month supply for both of the boys is somewhere around 40,000 dollars. Ouch! Our insurance has to cringe every time they see a claim going through with our name on it.
I have to say I know we are so blessed to live where we live and when we do. We never have to question whether or not we can afford to give the boys the factor that they need. This makes it so much easier to treat them as normal as possible.

Keeping me on my toes

Today we went in to pull out the huber needle that was in Evan's port and put in a new one. Pretty routine stuff. When they pulled out the needle I looked down and knew it wasn't looking right. It had pus and was leaking fluid. I said a few swear words in my head... it didn't make me feel any better. So now Evan is on a super strong antibiotic and we will see what that does. I think I will go outside and scream as loud as I can for as long as I can... maybe that will get rid of my frustration. We just can't win... these boys like to keep us on our toes. It seems just when we feel we can relax into some type of normal they like to shake it up for us.

Halloween

I really have no idea how my mom did it. We have pictures of us all dressed up for Halloween in costumes, usually costumes that she made for us. Then she had so much patience taking us from house to house collecting the goods.

Halloween started with Eve not liking how I did her hair... not pretty enough. Then when I took the boys to Eve's class I showed up just in time for her to throw up after she had gorged herself on Halloween treats.... AWESOME!! So then there were tears because her witch costume was in the wash when trick or treating time came along. I told her we have a giant chest of dress up clothes she could come up with something... so she decided on a ballerina.

Ezra decided he liked a horse costume we had... but I think he just liked the idea of a costume. He had Ian carrying it around while he was in his normal street clothes. So we filled up the buckets... Eve was allowed one piece of candy after she finished her dinner. Ezra turned into a giant candy monster that will never be satisfied... and Evan had a fun time tagging along.

9 months

What a busy 9 months it's been. When Evan was just a little newborn I thought he would be this nice calm kid... HAHAHA. I don't think I could have handled knowing that he was going to be wilder than Ezra. This kid really enjoys being a part of life and I don't stop him. I am glad that we are able to let him be as active as he is and not feel like he is going to kill himself... modern medicine rocks!!

Evan pulls himself up and cruises the furniture now. He also will just stand... and there is nothing he loves more than pushing things around the house thinking he is walking. My favorite thing about him right now? His hair... it is so fluffy!!

We have a port!!

 

Port surgery doesn't take very long... but it felt like FOREVER!! I know we had done it for Ezra but it didn't make it any easier. Once we got him back I did a quick count on the number of IV attempts I could see. First off I have to tell you the anesthesiologist had given me this talk prior to surgery then looked at Evan's hands and said this is going to be no problem. Yeah right.  They gave Evan gas before they attempted his IV so they didn't have to fight him, so I thought maybe they would really be successful right away. There were 4 pokes in one hand, two in the other... and the IV ended up being in his foot. Good thing we were there to get a port huh?

Evan has done pretty well since the surgery... he is a little fussy (who wouldn't be) and his pain meds make him sleepy (I am not complaining about my baby sleeping). We actually flew home yesterday... the day after his surgery. We flew in on the late flight so mom has the other kids still... I can't wait to see them!

We have fun too...

 So we don't spend all of our time in the emergency room. I swear! Most of the time life looks a lot more like this kind of craziness than the other. Actually yesterday was wildness of kids just having a blast together. Too often it seems like they don't get along and then once in a while a day comes along where they really just enjoy each other and have fun without fighting. Yesterday was one of those days. Someone called me and I really couldn't hear what they were saying on the other end because of how loud it was... I am sure they were thinking I was outta my mind but they were happy noises so we were fine. Look at these goofy kids... how fun are they. This is what makes all the work worth it.

Round 2 FIGHT!

It hasn't even been a week and we were back in the ER.  Evan was munching on a Barbie table and toppled forward breaking his frenulum open again.  This time the bleeding would not stop.  I called the blood center knowing what the answer would be. So, we packed up the family and headed to grandma Mil's to drop off Eve and Ezra before heading to the ER to get the infusion of Benefix that Evan needs.  We had a doctor that was telling us what the options were for a split frenulum and it was obvious that he had not been informed of Evan's special lack of clotting skills.  We pulled out the factor and pretty much told him this is what he needs then kindly asked what other things we could do to help that little tab of skin heal.  After he recovered from his surprise he was very helpful.  Ultimately, he said he was going to sign off on the infusion and get the nurses in to administer factor.  Our favorite nurse from the night shift happened to be on duty this morning too.  One of the other nurses gave Evan a poke then let Bethany have a stab at it.  Success in his foot again.  So now Bethany is 3 for 5, yes we keep score.  It took nearly 30 minutes after his infusion before the bleeding stopped.  Now, that is what we expected when he broke it in the first place.  Only 12 more days till Evan gets his port.

We're back!

My mother used to tell me there is nothing good that happens after midnight.  Well, for Ashley and I it seems like nothing good happens after 6.  While we were waiting for Eve to finish her swimming lessons Evan split his frenulum.  Well it is a little unfair to say that he did it all on his own.  He had a lot of help when his brother pushed his face to the floor.  The paci pushed his lip up and ripped that darn frenulum.  We have been warned that those things bleed profusely.  René the hemo nurse said when she split her frenulum as a kid you could have followed her blood trail for two blocks.  We must have lucked out.  Not more that two drops of blood came out of that boy.  But, we knew that a split frenulum meant a visit to the ER for a dose of factor.  You see that's the great thing about hemophilia and humans being carnivores.  The weak clot that Evan makes is dissolved by the enzymes in his saliva that break down meat and other proteins.  So, the frenulum keeps bleeding.  After a quick stop to pick up uncle Andrew to watch the older two we ran home to get factor and headed back to town.  The ER was crazy.  The lack of close parking should have been a giveaway.  Every room was full with a couple requiring security to stay posted.  We got our room and started the wait.  An hour later Dr. Meloche took a quick peek and said one of the most wonderful things I have heard a doctor say.  "In my years I have learned that when a hemophiliac or parents of a hemophiliac come in they know more than I do about the disease.  I am going to let Bethany give him the medicine he needs."  Then he was gone.  Ten minutes later Bethany poked Evan and got the IV in on the first poke.  AMAZING!  That was the best ER visit we have ever had.  I never thought I would use the word wonderful to describe an ER visit but that's what it was.

It's scheduled!!

So the 25th of this month is the day... can you believe it? It is crazy how quick it all happens. I know it was the same with Ezra but it still amazes me. We go from the talk to two hours later the scheduler calling with a surgery date. It is scary to think about my little baby having surgery but I will be so relieved to have two boys with ports. I will feel like we have more control of our lives, not that at any minute we will have to put our lives on hold and hang out at the hospital for however long it takes to get Evan his factor. Luckily we are already trained to access a port so once Evan is released from the hospital they are fine with us flying home. So we will only be away from home for around 5 days.

Darn joints...

Why do we need them? They are pesky little suckers! We thought Ezra was early for a joint bleed at a year old... I think there must have been a friendly competition between brothers for the earliest... well Evan wins. Yesterday we were eating dinner at mom's house after a busy day and I was holding Evan in my lap and when I moved him a little he started to scream so bad!! I thought weird... and that was the end of that. Then Ian had him and it was obvious something was wrong he was screaming in pain. So we did the joint check and when we attempted to straighten his right knee he screamed and screamed and screamed. It kinda explained this crazy bear walk he had been doing all afternoon. I had commented on how silly of a crawl it was not even thinking he was having a joint bleed.
Luckily we were at mom's so instead of just one of us going in or having to take time out to figure out what to do with our other kidlets mom just took care of them.
Let me tell you I don't know what the difference was this time with the emergency room but it was so much better. I think part of it is that it seems so much more serious when your kid won't stop screaming in pain. He would stop and then if he even moved that knee a little bit he would start right back up. The staff acted so much more informed about hemophilia this time and man were they serious about holding down our little guy while they poked him. It took 3 pokes... not too shabby. The nurse said she felt so sorry about that but we were geared up to be there all night so 3 pokes felt like such a relief.
So where now? I don't know. We will see what the plan is from here. We know that once the joint bleeds start we go straight to prophy. I anticipate a call from my favorite hemophilia nurse tomorrow talking about the possibility of a port; but we will see what everyone decides is best for Evan.

8 Months

Man time is flying by with this little trouble maker!! He is crawling like crazy now. He started with the carpet butterfly stroke... it was a relief when he started true crawling. He does do this funny crawl with one leg up which makes us check for a joint bleed but it doesn't appear to be a joint problem... just how he likes to crawl. That is what is so crazy about kids... sometimes they just do things like that and it doesn't mean anything and sometimes that is the first sign of a serious problem. He loves pulling up on stuff... of course and now cries because he hasn't figured out how to get down.

We have been exhausted for months because he hasn't been sleeping well. I think we are finally seeing some progress in the sleep department. I am so relieved!! It is so hard to have the energy needed to keep up with 3 kids on no sleep.

Hating the ER

Yesterday morning Evan crawled right off of the bed. He didn't have a big bump on his head but he cried for 5-10 minutes before he calmed down. So we called our trusty hemophilia nurse and after she consulted with the hematologist she recommended that we bring him into the emergency room and administer factor just to be safe. Well... easier said than done is all I can say. There was a real emergency that came in just after we arrived so we waited for a few hours... then they attempted to poke him 5 times with no luck. After that the ER doctor told me to just go on home. WHAT?? I said I would leave if the hematologist gave me the clear but big warning lights were flashing in my head because the hemophilia nurse has drilled in my head that once they start poking they can't stop until they are successful. Well Evan ended up with a CT scan. Luckily it was clear. Now we are just icing his poor little spots where they attempted to access his veins hoping that they don't swell... worrying that they might and then we might need factor again.
Sometimes it is just so discouraging. What is the point of taking him in when no one is going to help us? They did more damage than good. I hope that the continual icing works... the hemophilia nurse talked to me about compartment syndrome. Scary stuff that we just shouldn't have to deal with. I am not a medical professional. I am just a mom and I want someone to take care of my kid. I don't have a problem holding him down for... lets see Ezra was 12 attempts the worst time but I really hate this attitude that there is nothing they can do for my child. So hopefully we don't have to take him in for a long while... and if we do... well I think I would rather hop on the next plane to Seattle than go into our emergency room again.

I'm so glad you're my family...

So Eve's preschool teacher emailed us letting us know they are learning about families next week and they need a family picture for each student. Well imagine my surprise to find out that we did not have a single picture just our family of five. So we took care of that today... here we are. 

I had to add in these pictures of these boys wrestling. You would never believe who instigated it and who won... that is right... what a crazy baby brother.

Bruising

I took Evan to the pediatrician's office because he had nasty sores in his mouth... poor boy! There was a new medical assistant there and you should have seen her face after I took off his clothes so that we could weigh him. It totally cracked me up!! The whole time she was in the room she was just staring at all his bruises; I don't think she could believe I was bringing in a baby so bruised up. Sometimes I forget... this is just normal for our crawling little boy.

Cute kids

Here are our kids on a normal day just hanging...

First day of school!!

Eve started Point Higgins Preschool on Thursday. She was so excited to ride the school bus. She was up and dressed before I knew it (can't you tell?). I think preschool didn't live up to her huge expectations on the first day she kept on comparing it to Clover Pass Preschool and didn't like the things that were different. Today she came home much happier about preschool. 

Ezra is doing fine having her gone... he does get on his backpack when she does and is sad when he can't get on the school bus. The best thing was when she was at school he was playing with her Barbies and putting on her lipstick... hahaha. Walk Barbie along the floor, put her down, reapply lipstick, repeat. 

After school she had fun in with her brothers and the water table... maybe we should just put out the kiddy pool huh?

Seattle

We flew to Seattle on Thursday night, went to appointments at Seattle Children's on Friday, then flew home Saturday. Man it was exhausting!! Ezra crashed on the ride home and slept a few hours on the couch... how cute is he?

What happened at the appointments... sounds like we suck as parents of hemophiliacs. Okay not really but they really don't want Ezra to have all these joint bleeds... so we should contact them if he has more so they can adjust his dose of factor. So now we are upping his dose of factor and increasing the frequency. We also need to do a better job of keeping track of his infusions... what am I going to do when I have two boys with different infusion logs?? I need to get myself organized I guess which is a whole lot easier said than done.

Evan looks good... no problems with his hemophilia yet so what else did we expect? Ezra is a little bit trickier... but now we have a plan of action and a better idea of what to expect. So maybe next time we will have a much better report card... my guess is next appointment we will look awesome for Ezra and Evan will be the troublemaker... maybe I am too realistic.

7 months old

Has it really been seven months since this guy was born? I feel like it was just yesterday!! 

The past month has been a tough one with him... he has just been fussy and we have had a hard time figuring it out... but the past few days we have given him lots of gas drops and it is back to happy easy Evan. I guess his little body had a hard time with gas once he started solids. Once you have things figured out kids like to throw you for a loop I guess.

He is going through a mommy only phase... I love it and hate it at the same time. It really is awesome to be the best thing in the world to someone... but it is exhausting... especially when that little one is having a really hard time sleeping. 

In these pictures you can't really tell his eye color. We aren't entirely sure that it is settled but they are hazel right now... how crazy is that? 3 kids each with a different eye color... what are the odds of that? Probably a lot higher than having a kid with hemophilia.

Evan loves his siblings right now. He spends a lot of his time laughing at every thing they do. If Ezra is throwing blocks across the room Evan is laughing. If Eve is playing dress up Evan is laughing at her. That is the best part of siblings. Ezra likes to attempt to ride Evan as he scoots around on the floor. Eve likes to carry him... all 17 plus pounds of him... It is enough to give the adults seeing this a heart attack.

Evan is getting around but not classic crawling yet. I think this is because he thinks that he can get up on his feet and walk... he spends hours getting up on his toes... please don't be an early walker. He can get up from his tummy to sitting position no problem right now. He also thinks he is a big boy now and doesn't want pureed foods any more.

Friday Evan gets to go to Seattle for his hemophilia check-up. So far we haven't had to treat him so I think we are pretty good. He has had some good bruises... but I was noticing tonight when I bathed him that he doesn't have a single bruise on his body right now... what are the odds of that? You would think I have been wrapping him in bubble wrap or something. Nope just that lucky. With Ezra I don't think we had a bruise-free time once the bruises started so it is nice that at least for today Evan looks like a normal baby.

Ez's big day

Yesterday was Ezra's 2nd birthday. We had so much fun having a lasagna dinner and cake with Grandma Helen, Grandpa Syne, and Grandma Mil. It was so fun watching Ezra open his presents because he loved them all... it wasn't like he was so focused on one that he didn't pay attention to the others. Ian, Eve and I worked on a special construction themed birthday cake for him... and though it wasn't perfect it was just fine with Ezra. 

10 Ezra facts in honor of his birthday

1. He now lays down on the floor so we are able to infuse him with just one of us!!!

2. He calls Ian mommylo.

3. He is in love with swim shorts and wears them all of the time.

4. He thinks he can get dressed on his own, if you see him out with his shirt on inside out and backwards it is all him.

5. All he wants to eat are noodles... morning, noon, night... he had noodles for breakfast this morning.

6. The boy is obsessed with toothpaste! We really need to put it under lock and key.

7. He is so proud that he can fill a cup with water from the fridge door that he does it ALL the time. It is inevitable that he then spills the water on the floor and slips on the wet floor and we then have to ice some part of his body.

8. He is scared of most animals... if he even hears a dog he will run to the closest adult to be picked up.

9. He wears rainboots ALL the time... usually on the wrong feet.

10.  He has just discovered cartoons and his favorite is Little Einsteins. (pat pat pat anyone?)

Swimming movie

So originally I thought I had no pictures to show for the past month... my camera battery needed recharging and that is one step too many for me to do in a timely fashion. Luckily I did have something... there were pictures from the night my camera battery died...so I have several attempts at pictures with my sister and her kids with my mom and grandma... besides missing smiles on the kids faces on this one we are missing Ezra... that boy never want to sit still... such is life. My mom went on vacation and drove back up here with my sister, her kids, and my grandma. My grandma stayed for a little less than a week and my sister has been here for about a month!! How lucky are we. Eve thinks we won the lottery because she actually has cousins to play with. My favorite cousin moment is Eve in the woods with Alex helping him tie up rope. She actually changed into jeans and a baseball hat to have the correct outfit for playing with him... awesome! So we are soaking up cousin time, attending swim lessons, and of course watching the swimming movie (what Eve calls the olympics). Eve says when she is 6 1/2 she will be ready to do the uneven bars.

Evan loves the computer... and all things electronic. Like father like son.

6 Months!!

And getting bigger every day!!

Eating

Sometimes it is hilarious to go to the doctor's office. At his 4 month appointment she asks me when I am going to start solids. I must be a little too laid back, I said whenever he really acts interested. Well he was acting very interested... grabbing at the food on my plate trying to bring it to his mouth so we decided to give it a try. His face says it all... he is so not convinced. He seems to believe we are trying to poison him. And I wasn't even a good mom trying to start him with rice cereal or vegetables... here I was giving him fruit. That's what happens when you have three kids... doing it the "right" way doesn't always seem so important. Now if he is two and only eating grilled cheese and fruit maybe everyone can remind me that it is all my fault.

Evan's first bruise

So it is nothing big and doesn't seem to bother him but Evan did get his first bruise. Actually I noticed one on his ankle last week but it didn't feel all lumpy like this little hemophiliac bruise that showed up on his elbow the other day. He also got one on his hand as well. And so it begins. *sigh*
He is so determined... look at him up on his hands and knees trying to crawl!!

And here is Mr. Smiley!! Yes he has a little scratch on his face. I turned my back for one second and came back to a scratch on his face... I am not sure if he did it to himself with his fingernails... or if Ezra did it but he didn't even cry so however it happened it didn't hurt him.

Enjoying the sunshine...

 So Ezra has an ankle bleed... what's new? This boy just doesn't want to miss out on life at all. He just keeps on going and instead does this crazy walking thing. They tell you to get your kid to rest the joint, ice, elevate... haha. Try telling your almost two year old to stay off of it. It actually seems when Ezra is having a bleed he is less likely to sit still and just gets crazier. It has been extra difficult to keep Ezra rested because the sun has been out... yes that is right, we have sunshine in Southeast Alaska. 

We figured out the best way to have a happy Ezra and keep him off his joint. The backpack!! You should have heard his happy sounds when Ian got down the pack on Saturday... and how mad he was when we put it in the car instead of starting hiking from home. On Saturday we took it up Lunch Creek and found blueberries!! Eve was so happy to pick blueberries and have blueberry pancakes for breakfast on Sunday.

On Monday Alice and Andrew (my brother and sister) had the day off so we went for a hike up Perseverance. Eve walked the entire way (a five mile hike) with only a little bit of complaining at the end. It was so great to have the help... I don't think I could have done that without them... no way would I wear both kids on me. The kids had fun up at the lake searching for salamanders; we didn't find any. We used to be able to find a bunch up there... but it was fun anyways. Best of all Ezra was so happy to be out doing what everyone else was doing and his ankle actually got a rest!!

Boy meets door

Ezra slipped in the doorway and his face met the door frame. I couldn't get a good picture of it but you can see the lines on his face in this one. I think this boy needs to get some good stories. He keeps on hurting himself when he is doing the tame things... not the wild things. Don't get me wrong he is wild. If given the chance he would put on a cape and try to fly off our deck... but it is the little things that end up hurting him. 

I was taking our infusion information from the calendar last night and inputting it to our infusion log and I am so happy we have benefix. I read all these stories of how after people start prophy they don't have any breakthrough bleeds. Well good for them!! That is so not Ezra's story. In the month of June there was one week... just one... where all we had to do was prophy. I guess I have to take into account that he is one wild boy and it is summertime. Luckily with his port we can take care of it all at home and it is so nice to not have to go to the emergency room. I think we would really feel the infusion frequency if we had to take him in... but now I don't even remember it being that frequent until I look at the calendar.

What to do when Daddy's gone...

Ian is in Texas at a conference for work. That means that our house is a little wild. Evan has an ear infection... which has meant my usually content boy has been very fussy. It is just an all night party at our house... I am sure Ian is so sad to miss it. We have been having fun too. Luckily Alice came over to have a sleepover at our house last night so I got a little more sleep than I have been getting and a little bit of a break. 

Evan is getting so big... look at his belly hanging out of his rash guard top... too adorable.

Happy Boy

Helper

When Ezra was a baby Eve never thought about carrying him around. It is so funny because we didn't know that he had hemophilia but she didn't really touch him without asking. I wish that she was like that now. The other day she had picked him up and jumped off of her bed with him in her arms. Where does she get ideas like this? Do I leave him lying around for long periods of time? No. He was just on the floor scooting while I was trying to make dinner... I turn my back for one second and next thing I know I hear Evan crying in the kids room. Luckily he wasn't hurt he was just not happy. I wouldn't be happy either. Ezra has been observing this and now is getting ideas about how he should treat his brother. They are going to give me a heart attack. I can't carry the boy around all the time... I don't think he would like it too much. I try to explain but I have some pretty stubborn kids. Some days they just make me want to cry... I feel like I am trying to communicate some vital information to them but we don't speak the same language... they just don't get how important it is that Evan doesn't get thrashed by his siblings....

Playing around

Yesterday Eve's best pal Hannah was over to play... which happens a lot. Usually they play some princess game but yesterday they dressed up like rockstars... it was so hilarious. Ezra loves to dress up too. I am surprised that he didn't get on a tutu though... his favorite one is a rainbow one my sister made for Eve when Ezra was born. He loves the light up princess heels... and can actually walk in them better than the girls. I am sure it is really great for his ankles, but he is happy and sometimes that is all that matters... right? Evan just hung out in the jumperoo happy to have Eve occupied with someone else. Lately she has been obsessed with holding him and trying to get him to sit up and do things... great fun for her, not so much for him.

5 Months!!

This handsome boy is now five months old!! Where did the time go? He is really a super good baby.

I was hoping he would be a late mover... wouldn't that be nice? I am really not looking forward to the bruising and all that goes along with a tiny hemophiliac on the move. I tried holding him a lot and not giving him much tummy time but that darn baby decided he was going to be mobile just as early as his siblings... if not earlier. So now we are embracing it. I love his mode of mobility right now. He rolls around the living room. I think it is better than Ezra's first mode of mobility which was the carpet breast stroke.

boys

Evan is on the move. He rolls and rolls and rolls. This meant I didn't feel safe keeping him in the cosleeper anymore... so it was time to move Evan to a pack and play. The kids turned the cosleeper into a fort and played in there. Ezra was so nice... he wanted Evan to come and chill with him in his fort. 

When Ezra goes to bed at night he likes someone to come snuggle with him until he falls asleep. I can tell when he is really tired because he takes his shirt off and pretty soon after that he is out. It totally cracks me up. He is such a little man.

These Kids...

Ezra has quite the sweet tooth. He has figured out how to open the fridge and today after his nap opened the fridge and got some chocolate frosting out and was digging in... so cute. I love this age. Tonight at bedtime Eve whispered in my ear, Ezra didn't know exactly what she was doing... but had to go and breathe in my ear thinking he was doing the same thing. Eve is loving being a big sister. She thinks that she should be carrying Evan around and is just so happy to help out. Evan is just so happy to be around all this craziness in our house.

Too Tired

Lately Ezra has been exhausted. He is having a hard time going to sleep at night. He will just go and go and fight sleep like nothing else. He absolutely does not want to give in and go to sleep... he will run until there is nothing left in him. He has been grouchy, I don't know maybe he is getting new teeth, maybe he is getting sick, maybe he is growing, maybe he is having a bleed.... who knows. His life is just exhausting.

All I know is that it sure seems like he inherited his father's ability to sleep about anywhere. 

He is so funny. He hates the church nursery... seriously hates it. If I ask him if he wants to go to nursery he will rest his head on my shoulder and sigh "too tired". It sure is exhausting screaming your lungs out because you hate nursery so much. I am not pushing it... if he wants to be with me the entire time I am fine with it. Or if he wants to stay home and play with dad that is fine with me too.

Cool bruise man...

Did you know ears bruise? You would never guess how Ezra got this one. I like to call it extreme church attendance. We aren't talking about getting wild at nursery this happened during sacrament meeting. He was settling in and banged his head on the side of the pew. He has a pretty nice bruise behind his ear that is hidden by his hair too. Of course the day this happens I am alone at church with the three kids, so it was a little bit tricky to ice Ezra and hold Evan... but I managed. Then Ian got off the ferry from Prince of Wales and picked up my injured boy.

By the way last weekend Ian finished the Prince of Wales marathon. Awesome huh? I think it is pretty cool. He started training for the marathon right around the time that Evan was born. Before that he hadn't been running in a long time!! I think it is awesome that he finished. It hasn't been easy... he is up in the night quite a bit, some times he skipped some of his training because he was helping me with the kids, and he did a lot of running in crappy weather. My husband is one determined man. He finished in 4 hours 9 minutes and change. Of course now he wants to run again next year so that he can beat the 4 hour mark. I think the running bug bit him.

4 Months Old

I can't believe that is has been 4 months since Evan was born... time sure flies when you aren't getting any sleep. He is still a very sweet baby. He had his check up yesterday and weighs 14 pounds 2 ounces. He is happiest when he is the middle of the action... luckily we have plenty of action going on at our house!!

Milestones

Evan is growing up so fast. Today he had his first full belly laugh!! One of those sweet little milestones.

Having Fun

So yesterday the weather was super crappy. The wind was blowing, the rain was pouring down... and my husband ran a half marathon, the Totem to Totem. First time he has ever run a long distance race and he got 3rd place. I think that is pretty impressive. I didn't take a picture at the finish line because I forgot my camera but once we got to my mom's I took a picture just because you have to document something big like that. Memorial weekend he is going to be running the Prince of Wales Marathon.... his goal is to finish. I have total faith that he will finish... and then probably take a break from this running for a while... replace the time that takes with free diving and fishing.

Eve is still gone so you get a picture of me and my boys on Mother's Day. Ezra is such a cheesy dude. As you can tell he really entertains Evan. 

Yesterday our new experience with Ezra was breaking out the Amicar for mouth bleeds. Poor boy bit his tongue pretty bad... looks like almost all the way through, just one of those freak accidents that like to happen to Ezra. We thought the bleeding had stopped but his darn spit was breaking down the clot he had formed and he had blood all over his pillow after nap. I thought he would hate the amicar but he did really well with it. You have to give it every 6 hours round the clock and when he got it in the middle of the night he just rolled over and went right back to sleep... which is awesome!!

Off-kilter

Our family is feeling out of balance lately... amazing the difference Eve's absence makes. I think we all feel it. Ian said it best when he said that Ezra was missing her so much that he was hurting himself a lot more than normal. I didn't realize how much she (safely) entertains him while I am busy doing things that restrict my mobility... like feeding Evan. Without her around it has been one accident after another. I am about to lose my mind. Think sunshine.... last week it was nice enough to get out every day and go on a nice stroller walk.... right now, not so much.
We have two and a half weeks left without Eve and I am just praying we all survive. All I know is it all just feels... off-kilter. I miss her sweet snuggles, singing, giggles... just miss my sweet little girl. I am glad that she gets to spend time with Ian's family but we just feel off.

Stronger than me

http://www.youtube.com/watch?v=ihGCj5mfCk8
You have to check out this video!! From the folks at Seattle Children's Hematology/Oncology.

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.