Monday, December 26, 2011
Saturday, December 24, 2011
Thursday, December 22, 2011
Wednesday, December 21, 2011
Monday, December 19, 2011
Sunday, December 18, 2011
Saturday, December 17, 2011
4th Day of Christmas
Eve was ripping this one open before I even knew what was happening... crazy child. We also got to go see Santa's reindeer today.
Friday, December 16, 2011
3rd Day of Christmas
Eve was so excited to get pajamas. The wrapping paper on today's gift reminded her of her HOHO jammies she had for Christmas last year. Before we started the camera she was talking about how she needed new Christmas jammies... lucky girl got what she wished for.
Thursday, December 15, 2011
Wednesday, December 14, 2011
First Day of Christmas
Thursday, December 8, 2011
Ezra is a little bit of a messy eater. Sometimes it is hilarious. I love the beginning of this pudding face which makes him look like the bad guy in old western movies. Eve had to take part in the picture taking. She loves to take pictures with her camera so as soon as I get out my camera she is frantically searching for hers.
Thursday, December 1, 2011
My wild man
Then on Tuesday he had his 15 month check-up. Don't ask he how much he weighs or any of that I was just trying to get him to stay on the scale long enough to get a weight. We have been a little worried about one of his ankles. I wasn't sure it was really a problem but every once in a while it seemed like it was bothering him. The doctor checked it out and then called Seattle... they said it was probably a subacute bleed and that we should probably increase prophy to 3 times a week. Not really all that surprising with our wild boy. I mean if older children increase prophy when they do sports or more active things why wouldn't my boy who is so active need prophy more often? It is a little bit of a bummer... Wish he would be okay with the standard dose, but glad that we have the ability to be flexible and try to keep the bleeding from happening.
Sunday, November 27, 2011
Sunday Craft
Thursday, November 24, 2011
So Thankful!!
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.
Tuesday, November 15, 2011
Life
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?
Tuesday, November 1, 2011
Our little doctor....
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
I added some pictures of Ezra dressed up like a beautiful princess. Sometimes he does it himself and sometimes Eve helps him dress up.
Sunday, October 9, 2011
What we have been up to...
Thursday, September 22, 2011
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!
Saturday, September 17, 2011
Pictures later...
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.
Friday, September 9, 2011
It's a....
So now we have to think of a boy name. Ezra is going to love having a brother!
When my little sister was born my brother wanted my mom to take her back and trade her for a boy... Eve might feel that way about this one... but at least she gets to be the only princess in our house. I don't know quite how I am going to survive two boys... but I know I will. I just really hope that this boy doesn't have hemophilia.... can't life give me a little break?
Wednesday, August 31, 2011
Wild Ride
We followed up today and they determined that we didn't have to treat again. They thought about keeping the IV in another day but Ezra was already getting at it... and it was a difficult spot to protect... the side of his foot... and he wanted to continue to walk. So they pulled it out and man he is one happy guy.
So now the idea of a port is not a long ways off, but in the very near future. Scary and exciting all at the same time. It will be great for Ezra not have to be poked 12 times again...
Saturday, August 27, 2011
Hospital
The hospital was okay. Ezra was happy right up to the time that the nurse tried to poke him. Then it was all over and he screamed bloody murder. The first poke was unsuccessful, makes me feel so bad for the little guy and also the poor nurse trying to get a good shot and my wiggly man's little veins. By the time it was over we had four nurses in the room. Two of them were holding a little animal show behind my back while I held Ezra; one of them was holding his sippy cup for him since his IV was in his little hand, and the other one was pushing his factor.
Ezra really knows how to put on a show. When they were getting him ready to go after the fact he held out his bandaged hand to the nurse with the most pathetic look on his face. It was like he was saying "look at what you did to me... the least you could do is give me a kiss." One of the nurses brought in this adorable stuffed lion for him. He really had those ladies wrapped around his little finger.
Monday, August 22, 2011
Dance party!!
After dinner tonight we were having family dance time... which was so cute. While we were dancing around I saw Ez try to spin for the first time (Ian said he was doing it all day yesterday) and I was so determined to get video of it because it was just plain adorable. I love the way he lifts his shoulder right before he spins... too cute!! Eve was so happy to have someone to dance around the living room with her.
Wednesday, August 17, 2011
HAPPY BIRTHDAY!!!
Ezra turned 1 today. I took the day off from work so we could celebrate all day. We went and had delicious fish and chips on the pier, hit up the Candy Corner, made a race car out of cupcakes, and had dinner with family. It was a wonderful day. Ezra scored some loot(the wrapping paper is the best) and enjoyed a deliciously blue cupcake the way only a one year old can.
-Ian
Friday, August 5, 2011
Coming Attraction...
Saturday, July 23, 2011
Thursday, July 21, 2011
I am a mutant!!
Ez Walks!!
Saturday, June 25, 2011
Saturday, June 11, 2011
We are in so much trouble
On Sunday I met with this woman who has an adult son with hemophilia. She talked about how her son was naturally quiet and calmer than most kids. I just had to laugh because that does not describe Ez at all... He also does this climbing routine on the piano at mom's. Mom got rid of the bench after his accident but that little man is determined...
Tuesday, May 31, 2011
Fishin
Sunday, May 22, 2011
We did it, and we're okay
Friday, May 20, 2011
Tuesday, May 17, 2011
Big Sister
Sunday, May 8, 2011
Magic
I know a day will come when they grow up and won't believe in the Easter bunny type of magic but I know that there is still something magical about a mom. I remember being in labor with Eve and there was no question that I needed my mom there. There is something magical about her. I know that if she is there; even if she is doing nothing but cheering for me and praying, I can do anything. I am so grateful for my mom and the magic she provides in my life.
I know that her amazing mom powers have helped me deal with how my world got turned upside down recently. My mom is one of those centering forces of my world, and how she does it I don't know, but it is pretty amazing!
Friday, May 6, 2011
Ezra's bling
Wednesday, May 4, 2011
Looks like hemophilia
Tuesday, May 3, 2011
Moms
Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body. ~Elizabeth Stone
This quote is one of my favorite quotes about motherhood/parenthood. Since Ezra was diagnosed it has really described how I feel most of the time. I know I feel that way about both of my kids but the reality of how much of me is invested in these little people that came from me didn't hit until something happened to one of them.
My heart breaks for Ezra and the struggles he will have to go through because no matter how hard we try he will always be different. I mourn for the carefree boyhood I wanted him to have. I wish I could just take it from him, his hemophilia; this is something grown up that a little one should not have to worry about. I don't want him to grow up worrying... but that is the reality of his life. I feel bad that most likely I gave this to him and I know I shouldn't. When my mom says if you gave it to him then most likely I gave it to you and “I am sorry” I just shake it off because I know that is not something she deliberately “gifted” to me. But then I am hard on myself for unknowingly gifting hemophilia to Ezra. That is what it is to be mothers... we would take all of the pain and hurt away from our kids if we could. I know my mom wishes she could take it away and that I wish I could take it away. Unfortunately nothing can change what is... and I would rather have Ezra here, problems and all, than not have him at all.
Thursday, April 28, 2011
We did end up getting the factor for Ezra. That makes me so relieved. Now I don't feel like I have to helicopter parent him... if/when something happens we have something to treat him with. It was pretty stressful knowing that if something happened we didn't have the factor.
So far he is doing pretty well. He is bruised up from nothing but otherwise doing great and happy as a clam. I am amazed at how happy he is. He is acting like he is teething... which should be a wild ride. Every time I get him out after nap I brace myself for the bloody mess that they told me to expect with teething... but he has yet to cut any teeth. He is just gnawing on the chair legs and other things we wish he wouldn't gnaw on and I keep trying to force teething toys on him... and at some point one of us will give up the fight... I am hoping he gives in first.
Saturday, April 23, 2011
Ezra and hemophilia
Hemophilia is a genetic disorder so it is something that he has had since birth; we just found out about it now. Hemophilia is something that is an x-linked trait. If the genetic mutation did not start with him it came from me. Right now we are doing genetic testing to see if I am a carrier and if I am the next step is to see if my mom is a carrier too. The doctor in Seattle said that hemophilia usually breeds true. So since Ezra is severe that means that if it manifest in another male in the family we should expect it to be severe as well. It would be almost impossible for someone with severe hemophilia to go undiagnosed for years and years... it is pretty obvious that something is wrong. Just looking at Ezra's little bruised up body from crawling around lets you know something isn't right. So it probably is not undiagnosed in any adult males in my family.
The big dangers with hemophilia are not actually the visible cuts that most people think of, those are obvious, you know there is bleeding and if needed you can treat with an infusion of factor. The scary thing is the bleeding that we can't see. There are many types of bleeds. The one that we are hoping to delay as long as possible is a joint bleed. Once Ezra gets a joint bleed he will go on prophylaxis. Prophylaxis is treating with factor usually about twice a week to reduce the chance of him bleeding. I am all for this! I don't want his joints to get destroyed from bleeding! I want him to have as normal of a life as possible.
Seattle Children's was not sure how we are going to get our factor. They are in the process of figuring it out. They are not sure they can send it up to Alaska since they aren't authorized to prescribe in Alaska. So we will see... something will be figured out. It was hilarious because they have no idea about Alaska. I mean Ketchikan is pretty darn close to Seattle I wouldn't expect them to have those wild ideas about Alaska that a lot of people from the lower 48 have. They honestly thought we might be living in the boonies with no electricity and no emergency room anywhere close to us.
It was an informative visit. We met with a great doctor, an experienced mom, and an amazing hemo nurse. Of course we are still in the honeymoon phase. We know what he has but we haven't had anything happen that would need treatment. I am sure the reality of it won't sink in until we are sent to the emergency room after calling the hemo hotline and Ezra has to have an IV to administer factor.
Friday, April 15, 2011
Hooray!
Wednesday, April 13, 2011
I keep bleeding . . . I keep, keep, bleeding...
Tuesday, April 5, 2011
Ouch!
Monday, March 21, 2011
Tuesday, March 1, 2011
Friday, February 25, 2011
So much love
Yesterday it was the morning rush. I am so sick of monitoring her food, can't she just eat her breakfast and that be it? So I had given up and was feeling exasperated with her when I stomped to the shower for my me time while Ezra took his morning nap. Halfway through the shower I hear her opening the bathroom door and I think really? not even a five minute shower to myself? And she just comes in and says "mom this baby alligator really wants to shower with you." And the hilarious thing is it was a beaver bath toy not an alligator and she just dropped it in the tub and left. It was just what I needed. It made me laugh, it made me think about how much I love her... and it put an end to the annoyance with her that had been building all morning.
Today it was nap time. Man can I tell you how much I hate nap time. It has become the worst battle in our house. She is so obviously tired but she doesn't want to sleep. Well by that time I desperately need a break so we have instituted quiet time instead. That went over well for a while and now that is a battle too... I hate it. After our hour battle over quiet time today she sits next to me, brings me this little pink frog and says "Mom, this little frog just wants to be with you." Okay, I get it... she totally thinks I am cool, all of her things want to be with me... I am awesome! Sometimes staying home with the kids feels so much like a job that I really forget just how awesome it is. As you can tell I have really been taking it for granted lately. I blame it on the lack of sleep, really I have no excuse, I should be happy. My three year old is working really hard to remind me how lucky I am.