Update!

Stress mania. Seriously. The weekend before Edward's surgery, my husband was gone for three nights. Figure no sleep. He comes back Monday night and the boys and I take off Tuesday morning. I met my sweet friend at Ikea. Wait, driving to Seattle with a potty trained boy is, well, exhausting. I had to stop on the side of the road because he yelled, "Pee!!! Momma, pee!!!" Freak. Of course. Trip took a good 5 hours. Back to my sweet friend. She took Harvey for two nights, three days. Jen, thank you sooo very much! The next day was surgery day. I felt very emotional the day of. No sleep and stress will do that. It was just me and Edward. We do all the mumbo-jumbo pre-surgery stuff and they finally took him around 3. I was paged for updates and they told me that nothing is straight forward with Edward and that they will only be able to do his right side hernia and testes drop, because of anesthesia problems. (They were supposed to do his left and right side hernia, testes, and circumcision.) They also had to go through his belly button with a camera to find some stuff tangled in his hernia. I was all alone in the hospital crying. Not cool.
Finally, around eight or nine, I was able to see my baby. I was soo happy and soo enraged all at the same time. You guys should have seen my poor baby. He was poked no less then 15 times. He had bruises all up and down his arms and hands. I was infuriated! I thought I had learned my lesson from Shriner's but I guess not. I told them were they could place the iv. They tried there and many other places. My heart was broken for him. At least he is ok. There are a bag of issues that goes into anesthesia for Edward and I understand, but seeing all those pokes hurt me. After I vented to anesthesia for like 10 minutes, I was in happy bliss just holding him and feeding him. Edward and I stayed the night in the hospital. I have to tell you about the dream I had that night. It was terrible.
This was my dream...When I finally got to see Edward after surgery, the nurses were huddled around him. He was having trouble breathing and he was turning red from lack of oxygen. I start freaking out because I felt like they weren't working fast enough to help him. One nurse had pushed the ambulance button but I ran outside our room to scream for help. I tried screaming with all my might but nothing was coming out. I kept trying and trying to scream for help. No sound was coming out of my mouth. Freak. I hate those dreams. I felt helpless and I woke up thinking/wondering if my dream was real. Bla. Terrible. Thank the Lord that didn't actually happen!

6 pokes one hand..he is totally out of it

In other news, Edward is so cute. He is so smart. He is reaching for his bottle and can hold his bottle and he tries to put it back in his mouth when it goes out. And in pt he is showing signs of rolling! Everybody loves him. But I love him most. And he loves me most! Yaaahahhaahahha!
The other night we watched Soul Surfer. Good movie. Bad acting but good. I cried. You should watch it, and think of Edward. 

Thank you all for your prayers!

holding his bottle 5 months

More surgery

I need to blog more often so I don't have to work my memory. More crazy weeks to tell you about.
Well, as you know, Edward's last tendon release surgery went well. We had that done at Shriner's and the doc was able to get a good stretch of his right foot. It has almost caught up to his left. However, we had gone up with Edward to meet anesthesiologist in the prep room and I specifically told them where they could easily put an iv in. They didn't listen and Edward had pretty good bruises on the inside of both his elbows. They eventually placed it where I had told them. I was furious. It made me realize that I cannot trust anybody with my baby. It made me glad that God made me opinionated, loud, and a bit controlling. I have to be for Edward's sake.
The next day, Edward would not eat or sleep. He cried in pain. I noticed that his hernia had gotten bigger so I took him to the ER. Waste of my time. They didn't do anything. So I called Seattle Children's and they decided that we should move his surgery date up. So surgery is this Wednesday the 21st. They will be fixing his hernia, dropping his testes, and giving him a circumcision. This will be his first major surgery, so please pray he can recover easily and not have any post-op pain.
Wanna hear a funny story? Last March, before I had Edward, after one of my many ultrasounds, a social worker came in to talk to me. She gave me a birth plan and told me to think about my answers and fill it out. 'Yeah, Yeah,' I thought to myself. 'I have seen these before,' so I stuck it in my bag. That weekend, Adam was on spring-break so we decided to drive down to Portland. On the way, I decided look through the birth plan. I started bawling. I didn't realize the doctors wanted answers to questions like: "How long do you want to be with your baby while he/she is dying or has died," "What kind of after-death care would you like," Would you like us to resuscitate your baby," "What kind of breathing assistance and/or ventilation would you like your baby to have." I was devastated. It was supposed to be natural vs. medicine, caesarean vs. vaginal, family vs. no family in the room. (I tell this story for my memory's sake.) I truly forget, towards the final days of my pregnancy, how dire the situation was. The doctors really did tell me that they didn't think Edward would make it. I do have a miracle baby.  I seriously can't believe I endured all that.
Last week was birthday week. Harv's one day, the next, mine. Crazy, busy, fun times.
So, the other day I went to a Mom's group at my church and they wanted to introduce new babies. I introduce Edward as 'my miracle baby' and they wanted an explanation. So I give my short, modified, quick version and in doing so, I am holding Edward up so he is looking at me. The WHOLE entire time I told my story he just stared at me and then smiled at some parts of the story. It was the most precious thing. I could have died in that moment and all the mom's melted. 

i could eat him up!

me and sweetness

birthday boy

ahhhhh dorable!

I need your suggestions. I struggle with how to handle peoples obnoxious stares. I was at a park the other day and a lady and her friend were clear across the park. I noticed her looking straight at Edward and she nudged her friend to look and she literally strained her body to get a glance. I watched the whole thing go down. Then they gave me the 'pout face,' you know the one where you droop your bottom lip, and I wanted to punch them. (It seems like I want to punch a lot, huh?) I know they meant no harm but come on! I got angry. But I need a better way of handling that kind of situation, aside from wanting to punch everybody because they don't understand how fortunate I am. I need a verse or a thought or a song....

Sappy Love

I am sitting at Shriner's right now waiting for Edward to go into surgery. Today he is having another tendon release done. Lot's has happened the past couple weeks.

major love butt!

couldn't you just die?!

I lost Edward's hand splints a couple weeks ago. They literally vanished. Mainly my fault for not being a better mom and putting them on him every single night, like I should. So, after a phone call to my mom, a fire was lit under me to be better. It is hard though. My day starts moving fast,  and with potty training my other boy, before I know it, the day is gone.
Then, this is terrible, but I was playing with Edward on a pillow and Harvey had just woken up from his nap. I left Edward on his pillow and went up stairs to make Harv some lunch. I came back down and Edward had rolled off his pillow and gone face first onto the couch. I freaked. His eyes were closed and his breathing was slow. I ran upstairs and opened the freezer door to maybe have the cold air stimulate him. He opened his eyes and slowly returned to normal. Ugh...that was terrible. He is fine, thankfully. But you can imagine. I just didn't think he could go anywhere from his pillow because he generally can't. I was horrified and it took me a long while to calm down from that. Nightmares.
This last Wednesday we went back to Seattle for the Arthrogryposis clinic. It went sooo well! My husband and I felt soo encouraged afterwards! We had like eight appointments for him including one with Dr. Hall. Yes, we got to meet the famous Dr. Judith Hall! She was awesome! She loves arthrogryposis kids and what she does! The biggest thing I got from her was to enjoy Edward as much as possible now, then after this year I can study-up to become a muscle expert. She was super sweet. She also said that we should do whatever Dr. Song says in regards to Edward's feet and hips because he is the best. Done. He will have hip surgery and feet surgery at the same time come Jan/Feb. We feel really good about it. It just felt sooooooooooooo good to be back at Children's! We saw Edward's old physical therapist and she was so sweet and she missed Edward! OOhhh..I miss Children's. It was just a good day! We were not as affected by the 'look' of arthrogryposis as we were the first time. I was, yet again, reassured that this is, in all actuality, no big deal. I am sooo lucky to be Edward's mom. Here comes the sappy...
Seriously. I was telling Adam all this. I feel sooo unbelievably privileged to be Edward's mom! Instead of why me in a feel sorry for myself kinda way, I have been asking Jesus why me in a humbled, elated way! Of all the things that could happen to a baby/pregnancy, I lucked out. Edward is such an awesome, awesome little boy! This is the thing, I feel God's love through Edward. It is the honest truth. I know this is all sappy crap but man, Edward was no accident. (That is what my Christian minded physical therapist said! I'm so happy with him!) God specifically gave me Edward and I don't know why me but I can tell you that I feel sooo honored that he did! I would go through all the pain 10 times over just to have him and feel Jesus' grace through him. Not kidding, mark my words, Edward is going to play the piano and have an insatiable love for Jesus! When I look at Edward, I feel like I can see the boy he will become. Man, I love him!!! I am the luckiest and all you guys aren't! haha...humbled, right?! But I literally have a gift from God.

ah! my sweet love face!

freakin adorable

Edward has been starting to reach for toys lately. I love this age. He just wants all my attention and he loves people talking to him. He cracks up at the silliest of noises. What a love butt.

out of it...on some meds

sleepy after surgery

P.S. My baby is only 9 pounds 6 ounces today. Also, Edward did great today! His tight foot came right up! Praise the Lord!

Title

I have wanted to tackle my title for quite some time now. A faith like Job. What ‘a faith like Job’ means to me is a steadfast, unfailing, love and trust in God. When I first read through the book of Job, I fell in love with it. I thought Job was the coolest because God tested him and he came through! How awesome is that? I feel like whenever I am ‘tested’ I fail miserably. (I don’t like to think God tests us but maybe He does.) But as I read and reread Job, it becomes more clear to me how funny/human Job is. In the first part of the book, Job handles his disasters with class. Then as the book progresses he get more sassy/sarcastic, like WTF? He questions God and almost challenges God as saying he could do a better job with the world. In Job’s defense he was blameless, upright and very undeserving. Plus!, throughout all his sufferings, Job had “friends’ that kept spewing their righteous thoughts of God and why he was suffering. If I were Job, I would have punched my “friends” in the face and defriended them on facebook. Job seriously became so real to me. Here he is suffering trying to hold his head high and love God through it all, still asking God why him, all the while having stupid friends on his back. Frick, I am annoyed for him right now.
There is so much I don’t understand about God and why things happen. I am not going to lie, I asked God why many times when I was pregnant and even after Edward was born. Sometimes I still find myself asking why. But I always said why not? I just know that God is sooo much greater then what is in my capacity of knowing. I certainly wasn’t there when He was making the world. “Where were you when I laid the foundations of the earth? Tell Me, if you have understanding. Who determined its measurements?” Job 38:4,5. I just know that all my questions will be answered when I get to heaven.
During the worst time of it all for me was during Christmas time. I was super bitter and angry at God. For reals. It was bad. On the way to visit family I read this: “Now as Jesus passed by, He saw a man who was blind from birth. And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him.”” John 9:1-3 I can smile/cry and have an inkling of understanding. I think a child-like faith is needed when searching for understanding.

Edward loving the lake!

Edward still needs a lot of prayers. Please pray every morning, noon or night that the Lord will heal his body. Plead with Jesus to heal every part of him and that he can be the highest functioning boy.

The song..

Here is the song! (I think...I am not confident that I would know it because I was only able to listen to a bit of it. Keep the suggestions coming!) Thank you so much Tiffany!

Busy

Edward is To-Die-For! (I can't figure out how to post to blogger so here is the link.) Watch and smile!

http://vimeo.com/27206602

In other news, check out Edward's progress! Isn't he bomb.com?!! I think so! If we can keep getting progress on his feet then I will wait as many hours at Shriners as I need! Yes, more hours of waiting just to get recast. So not cool.

10th cast

11th cast

terrible pic but you get the jist

Oh! Guess what! Edward won a mamaRoo!!! Isn't that amazing? I told my story when I was about 29 weeks prego and two weeks ago I received an email saying that I/Edward had won the mamaRoo! Yay for Edward! It is awesome and Edward loves it!
I have come to remember why I like our town. I have gone more places then just Winco. We have been to the lake every weekend. Let me tell you, that is the reason we love where we are at. It is gorgeous and amazing to be on a floatation device with no cares in the world, if only for two minutes. Those two minutes are heavenly...

Pretty much physical therapy over here sucks. We had an OT appointment yesterday and she seriously just sat there. She hardly asked me any questions about Edward and she was so...just sucky. I think she had it in her mind that she could not do anything for him. I was sooooo frustrated with her that I almost started to cry during the appointment. We are going to try and get into the Guild School. Please pray that we can find amazing therapy for Edward. This first year is soo important. I am feeling very overwhelmed about it. *For the arthrogryposis mom's, how effective would another tendon release be? Are multiple releases helpful or a waste?

I really think God has a sense of humor. I laugh with Him anyways. I wanted to get pregnant Right away because I LOVED the newborn stage so much (well Harvey in general). Now, with Edward, he has been a newborn for months. He is only 8.9 lbs and he is almost four months old! Hahaha. Thank you Jesus? Yes, high-five.

seriously...to-die-for

So, I had to have a MRI for Edward when he was still in utero. It was four days before he was born. I was alone and they sat me on the table and wrapped me with blankets. They put ear-plugs in and gave me headphones so I could try and relax. They asked me what station I wanted and I requested a Christian station. The table moves me into the claustrophobic tube and the music starts playing. This song is playing about his wife who is pregnant and the baby was not supposed to make it but does...bla bla bla. I remember I started to cry for like a second but stopped because I was not supposed to move. So I scrambled to fix my mind on something else as this song was playing. I finally had to request another station. I requested a reggae station. hahaa. (If anybody has any idea on what the name of that song could be, please let me know!) I remember driving home and laugh/bawling at the irony of what just happened. Then docs decided that Edward needed to get out now and so I had him four days later.
(Point of the story is that I need help finding the name of the song. I was so focused on not listening to it so I wouldn't cry.)

We're There!

First off, I can't seem to find Edward any good physical therapy. Yesterday we had an appointment at Shriner's and it was a waste of time. I don't think she was comfortable working with babies. So she referred me to a couple places. The Guild School doesn't offer services for my address, freaking stupid, and at Youthful Horizon's there is a wait list. And I said he has arthrogryposis and she said she had never heard of it. OOOO how I miss Seattle, seriously, sooooo bad.
I can't believe it has only been two weeks. It feels like six years ago that we moved. Let me tell you, I don't ever want to move again! We did it all in ONE day, packed and cleaned the apartment, drove over, unpacked and slept in our new home. I am so grateful for all the help we received! Thank you! We love our new home. So much space and it is fun to pretend to be home-owners!
It has been hard to deal with the move, I miss home. It has been super hard on Harvey and I, but Edward has been a champ! He is the greatest! The past couple days have been hard on me. Our cars were broken into (a nice 'welcome home') and our cell phone bill was outa this world large. We also had our first Shriners appointment and we waited THREE hours to be seen. UNREAL. I was sooo annoyed. PLUS, Edward was put into plaster casts which are much more uncomfortable for him and the edges are sharp and go way up to his hips. Redic. Bla. Our orthopedic doctor is nice and seems helpful. It is interesting the different views doctors can have. Our ortho doc in Seattle is more aggressive with treatment then our ortho doc here at Shriners. I think/know I lean with the more aggressive treatment.
A friend of mine just had a baby the other day and she texted me that he was 'absolutely perfect.' That hit me hard and it took me a couple of days to come to terms with my issues. I am super happy for her. Seriously. Edward is perfect, too. I love him so much it is sick. And he loves me too! I feel it from him. He will be crying and I will just talk to him and he calms right down. I will lay him on my arm and he will just stare and coo and smile. I will come in the room and he will look for me and immediately smile. I feel his love. It is a different love. MFEO for reals. Even when random people stare at him and ask me 'what is wrong with your baby' I am ok because he is perfect to me. I have it better then anybody else.

impromptu pic