When it rains, it pours. Well, I can see clearly now the rain is gone! Cheesy, I know.

Christmas pic 2011

I was really having a terrible time with myself this past month, month and a half. Just going in and out of pity parties and feeling bad about my situation. I think I was slowing down in my daily routine and I was scared to feel my hurt. I realized that I had been keeping myself super busy so I wouldn't feel the absolute heartbreak that I feel from time to time. (Just writing that makes me cry.) When I have time to think about the reality of my situation, my heart hurts, kinda like a bad breakup times a million. Then, Harv was watching a Veggie Tales movie and I had walked into the room during the 'lesson' part. Bob the Tomato was telling Larry the Cucumber that a thankful heart is a happy heart. hahaha That did it. Snapped me out of it! I have my days and my heart still severely hurts but with time it will heal. God is good and I am very thankful for my beautiful family.
So I have been obsessed with couponing lately. I have become an addict who needs to get stuff on the freap. It keeps me busy.

love this one!

Get this. Just yesterday, I was seriously obsessing over how to get Edward an ipad. I was calling, asking around if anybody had any good ideas on how to get one on the cheap. That morning, I was reading Edward a daily devotion entitled "Grace-filled waiting." Trust God through your struggles and have faith that He will provide. My favorite verse was, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17 Sidetracked, anyway, so while I was at physical therapy, asking my pt about the ipad, Adam calls me and says that his boss just bought him an ipad for Christmas! Are you kidding me?! Unreal how the Lord worked right before my eyes. What an absolute blessing! Adam was telling his boss how we were saving for an ipad because we thought that Edward would really benefit from some special needs apps on it. Then he went out on his lunch break and Adam finished with a patient and it was sitting on his desk! Isn't that crazy nice?!

Blows

The blows just keep on coming. We had a bunch of appointments in Seattle the past three days and each one seemed to be pretty depressing. Edward had xray's of his hips and feet. We met with a new orthopedic doctor, Dr. Mosca, who is a foot expert, and he talked with us about his opinion on his feet and hips. In short, Edward's feet have kinda broken down and the bones are not in the right place and are not formed correctly. He also said that surgery on his hips might not be an option because they are extremely tight. Then we had an appointment with our cranio-facial doc and he was concerned Edward's weight. He is still only 9.12 lbs. Of course we had pt and ot appointments, then our last appointment was with Dr. Song. He thinks that Edward needs an mri done of his spine and hips. (tentatively scheduled for the end of December.) The story with his hips are that we need to make sure that he has an adequate socket or even a socket to begin with. (They formed out of socket at 9 weeks gestation.) So, if his hips were able to move down, they would have a place to go. Does that make sense? And as you know, his spine is progressively getting worse. If it continues like this, then we will need to do bracing right away. SUCK. All this is SUCK. I am seriously trying to truck along with all of these blows. I just want Edward to be ok. I just want him to not have to deal with this stuff. Lord, just let one thing be perfect for Edward. I know God's will is perfect, but I just want to suggest a couple things He could fix that could make His will even MORE perfect. :)

he makes me feel better

In the end, if you would like to pray, which would be wonderful, you could pray that his spine gets better, his feet surgery goes perfectly, that his hips will be able to go into his sockets that are, Lord willingly, there, and that I am able to keep my fake "everything is great" smile plastered on. 

It could be worse. I have tons to be thankful for. No really, I got this.

Need I say more?!

 

They are a little big, but couldn't you just love him to pieces? I can't get enough of him.

Life?

When it rains it pours. The day after Edward's eye appointment we had some xray's of Edward's spine. Unfortunately, his spine is worse then the doc had expected. Boo. Then I was told that Dr. Song from Seattle Children's', who was going to do Edward's hips and feet, is leaving and going to LA. That was a tough week. Such is life.
One year ago tomorrow was when I found out about Edward. It has been one frickin hard year. I will never forget how oblivious I was to the ultrasound tech coming back and forth needing more pictures. I just thought she was doing it for me so I could know the sex. Finally, she had said, "you probably know by now that something is not right." Lol....NOPE! I instantly burst into tears. I tried to gather my emotions so I could make it to the elevator and Adam. Went home, cried. Came back for the meeting with my OB. Cried some more. My OB told me that she believed it was Trisomy 18. I didn't know what that was. Adam's reaction to that was so profound that I instantly lost it. The rest was a blur. The next day, Harv and I went shopping and I remember just walking around wondering if people knew that I was carrying a 'sick' baby.  I also remember driving and coming to a conclusion with the Lord that I could handle this...I got this I told Him. I told Him that no matter what happens with my baby that I would always love Him and that He has me. The next day we met with our geneticist and made the tough decision to have an amnio. When we sat down with our geneticist the first thing I told her was, "do not even mention abortion." But, stupidly, I asked her if it were her, what would she do. She said terminate. This was a Thursday. Friday, the results came back and they couldn't find anything! No Trisomy 18, aka Edward's syndrome! Then the next Monday, I got some sorta food poisoning and spent the night in the ER. I never vomited so hard in my life. I can't believe that that was only one year ago. Such is life.
In the spirit of Thanksgiving, I just want to say that I am so thankful for God's grace. I know that it is grace and grace alone that I am saved. There is NOTHING I can do, no amount of niceness that I can exude that will get me to heaven. If I thought that being 'nice' would get me to heaven, then Lord have mercy. It is God's gift through faith so that I can't take credit. It is so simple. I don't understand why people have to muddy it up.

Edward's spine

sweet thing

Guess what! Edward says momma! I have proof!

http://vimeo.com/32811933

Can I hate life? I feel like I do, right now. Just had a fricking eye appointment for Edward. I was sooooo hoping/praying that we would be spared eye problems. NOPE. Turns out, Edward needs glasses, a mri, and maybe surgery. I really don't want to talk about the details for some reason. Nothing terrible but just don't feel like it. I am fighting off the anger that I am feeling and don't want to stir the pot, so to speak. Man, I hate the world. I guess I shouldn't have expected anything different. Edward does have Freeman Sheldon Syndrome. It's funny. I never see or even think/remember that he has FSS. He is just Edward to me and I LOVE him soooooo much. Last Sunday, I was looking up more info on FSS and I just got sooooooo freaking depressed. It reminded me how much I f*ing dislike/hate that my sweet boy has it or anything for that matter. So, I called on some people to help 'set me straight.' I guess it helped for like a minute or two but it really didn't get the job done. I need a slap/hard hit from the 'humble stick...branch...more like LOG'. I have soo much to be thankful for but can't seem to crawl my way out of this. This eye thing didn't help any. Plus, I feel all alone in all of this. Adam is great and loves Edward to pieces, don't get me wrong!, but we are not on the same page. He is not quite where I am at. So, I feel all alone. (I can say this because he doesn't read this anyways. haha) I will probably regret writing all this bologna but right now I don't care. Whatever. Don't worry, I will get over this. My stupid hormones are just getting the best of me. Next post I will be happy as can be....promise.

love of my life

cookie monster

little skeleton...thought it was appropriate 

Regression/broken

Well, you will never guess what. Edward has a hairline fracture in his knee. He was super-duper crabby yesterday and whenever I picked him up or moved him, he screamed. When I taped his feet, I knew something was wrong. Then I noticed that he wouldn't move his leg. And...I think I remember what happened...Harvey threw the controllers or a toy, I can't remember which one, and it hit Edward. Unreal. If it's not one thing, it's the other. Dear Lord, help me help Edward.

splint up to his waist for fractured knee

Month one, broken arm. Month six, broken knee. Month ten?...hip and feet surgery. Oh joy. Poor baby. I will remember, "in all things give thanks." The devil will not defeat us and we will count our blessings. No biggie...we got this...what is a fractured knee, anyway!?

I am much better now. Life gets overwhelming, at times, but nothing worth having is easy. Jesus loves me and won't give me more then I can handle. Even though, many times last week I told God enough!

oh boy

sweetest thing

sweet boys

The book I am reading is pretty good. It makes me realize how important prayer is and how it can make a difference. I was going through a stage, weeks back, about not knowing the purpose of prayer. My rationale was, since God is omnipotent then what is the point? My prayers don't matter. For example, I prayed and prayed and prayed when I was pregnant with Edward and God didn't change the outcome. God has His will and knows what is best for us, right? So, no matter how hard I prayed, He still did what He wanted. I don't know. Prayer is confusing. So many pastors tell you how to pray. Is there a specific way to pray that I am not getting? But, also, in the Bible it says that sometimes we don't know how to pray and that the Holy Spirit will intervene for us and ask what we cannot. "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans." Romans 8:26   This is a verse that helped me when pregnant. This is why I prayed and prayed. "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" Philippians 4:6-7.  Don't get me wrong here. I believe in prayer. It says in the Bible that prayers are powerful and effective and that God hears all prayers. "And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it" John 14:13-14. I believe that the words in the Bible are true. I guess my thing was, if God's will be done and He knows what is best for us, then why should I ask for the things that I think I want?

P.s. Happy SIX months to my sweet Edward! (seems like years ago..)

Falling fast

I am the mom I never wanted to be. I have the child I never wanted to have. I just got home from a long morning. It started with an eight a.m. pt appointment for Edward and ended at Barnes and Noble, searching for the Strong Willed Child by Dr. James Dobson. Laugh it up. I just feel like I am losing control of my son/life. He is 25 months and he is in the stage where he likes to run away from me while laughing. He thinks he is soooo freaking funny. I find myself chasing him, half laughing myself, in disbelief/embarrassment that I am chasing my freaking 2 year old. Yuck. Everybody tells me that it is just 'his age.' No it is not. I suck. I need my mom to show me how it is done. Be with us the whole day and tell me what to do and how to do it. I always thought I would be a good mom. Seriously, I need to high-five my mom and my grandma! Harvey is seriously awesome an hour before bed and during his nap-time. It is hard.
We have pt three times this week and next week. I think that the whole Edward situation sits in the back of my mind and weighs me down. Whenever I start to feel sad or feel sorry for myself, I immediately push it away. I mean, Edward is awesome and I am so blessed. But it sucks. It really does. I mean, in the grand scheme of things is really doesn't, but. There is just so much. I now have to tape his feet every day. So instead of him being cast every friday, he is in braces and his little feet don't stay in them very well. I have to tape them so they will stay in a good flexed position. I am pretty much 'casting' him everyday. Bla. Yet one more thing to add. I seriously wish he didn't have scoliosis either. I just feel sooooooooo bad for the little guy. Yeah I secretly love that he is sooo small, selfishly, but I really don't like it. It is not right. He should be crawling and moving and eating like any 6 month old. He should weigh 15 lbs instead of 9.
Am I getting what I deserve? I am at the very end of my rope here. I don't even know how to pray in this situation. "In all things give thanks," "all things work together for good to those who love God," "I can do do all things through Christ who strengthens me." Yes, yes, I know. I know, I know. But what am I missing? I can't even go to church without bawling the second the music starts to play. What does it all mean? hahahaha, I sound ridiculous. Time for me to find my 'happy place.' Off to sew.

Good

Yay for my sweet Edward! He is out of casts for awhile! This morning they put splints on him! Poor guy was soo tired and mad that they were messing with his feet like that. Then he had three shots. Poor baby. I am so excited! I get to put pants on him! I love it! (That was last Friday.) Here is a video of Edward's sweet ability! It is short, sorry.

http://vimeo.com/29861975

look at that face

sweet smile, evidence of him eating some food!

drool monster

With the new found freedom from casts, I have decided to move Edward along. Treat him like the soon-to-be six month old he is. So, we have started him on some rice cereal. I have been putting him in his little bouncy chair so he can work on his head control and trunk control. Even though he is still in newborn clothes, which I secretly love, I need to start treating him like a six month old. Freak, I love him. He is just a rock star.

I want to show off my quilt. I just finished it and am sooo happy with it! Well, that's all for now.

Edward's quilt

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

It is what it is

I am a serious Debbie Downer, Negative Nancy today. I don't want to move. I feel like throwing a massive Harvey-esque type tantrum and refuse to go. I don't know why I feel like this either. I am the kind of girl who loves change and needs it, to a point. I move my furniture around all the time just to change it up. BUT I DON'T WANT TO GO. Frickity-frack.
Yesterday we went to the arthrogryposis clinic lunch-in and met families and their kids. Talk about a slap of reality across the face. (Negative Nancy won't leave me alone.) (I really should not be blogging today.) (But I should because we are freaking moving and who knows when the internet will be back in my life.) *sigh* I mean, it was good. It just sucked. For the first time, I saw what my Edward is going to be like, kinda. All the kids were super sweet and just nonchalant, you know. It was great to see their demeanor. But to actually see the challenges they are faced with, just freaking sucks. I hate it. I HATE that my baby has this stupid FSS. I hate it so bad. Buuuuuuuuuuuuuut, it is what it is.
On a positive note, Edward is the sweetest. We had some friends over the other night and before they left, I let her hold Edward. She just looked at him and she started to cry, which in turn, made me cry. (This had happened on another occasion.) It made me feel really good. Edward has this for a reason. God knows what He is doing. (You are probably thinking that I am super redic because I just got done saying how much I hate that he has FSS. And I do. I really hate it. It is soo hard to explain. Ultimately, though, I know God has it under control. But I still hate the challenges Edward will be faced with.)
Yesterday, Edward had his first cast change post surgery. My Doc said that Edward will probably need feet surgery. His muscles are just so freaking tight. His right side is worse then his left, too. Which is bizarre because his left foot was more severe then his right. Whatever. All I can do is pray that Jesus heals him.

I am so blessed. I know this. I am having a hormonal day. Please forgive me. After all, tomorrow is another day!

June 29, feet post cast/surgery

A morning downtown. The cutest ever!

Surgery

First off, I want to apologize for not letting everybody know that Edward's surgery was postponed for today. I got lost in my mind decorating my new house and lost track of time. The docs wanted us to have an appointment with anesthesia before surgery so we had to delay. 

sweet little toes! 

BUT!!! Surgery today went Ahhh-maz-ing! It was a super quick procedure and recovery went great! We checked in at 7:15 a.m. and Edward was released at about 5:30 p.m. this evening! Our surgeon said that the release of his tendon made his feet spring up more then he expected! So, Lord willing, his feet will continue this course and he won't need foot surgery! Thank you all for your prayers! Jesus is soo good and it is sooo awesome to see how much He loves Edward! Seriously, if you held Edward, you would fall in love with him and Jesus. How could you not?!

Back to the drama awesomeness that is Bentley on the Bachelorette! 

MFEO

To quote a great movie, French Kiss, "When people tell me they are happy, my a** begins to twitch." I always, always think of that line when I think that I am happy. It seriously cracks me up. But, it is true. I feel really happy lately. I am soo thankful for my family. Edward is a doll and Harvey is nothing but a boy. One of the reasons why I think I feel so full and satisfied is because I am finally able to open my Bible. Previously, whenever I would think about opening my Bible, I would get super emotional and have a twinge of bitterness roll through my body. It would just bring me back to when I was pregnant and the pain of all the emotion I felt. I never really realized how hard that time was. It has taken me a good two months to let go of all my hurt feelings towards my situation and toward Jesus. I know that sounds terrible.
Another reason I feel so good is because Edward has been eating like freakin Kobayashi! Just this past Saturday, Edward has decided that he will eat 60-70 ml every three hours! Prior to Saturday, it was a struggle to get 60ml in him at every feeding and I would feed him ALL day long. In a two week period he only gained 2 oz. I told him I was going to have to put the feeding tube back in and that was when he straightened up his act! What a good boy. (We are seriously blessed that he doesn't have any real feeding issues!)
And we were able to secure a house! I am so excited. I get to play house for real. It has a huge backyard and lots of square-footage!  Praise the Lord, seriously.
Today was the start of a stressful week. I had a cranial facial appointment for Edward, which was the start of many appointments for the week. My doc said that Edward does have scoliosis. Which seriously sucks. We know he has kyphosis, which would make him hunch forward, and lordosis, which is an increased lower back curve. It just sucks hearing that. It is just something else we have to monitor.
I don't know, I feel like I am where I was meant to be. I was made to be a mom to a baby with...FSS. I think Jesus has prepared me all my life for this. As hard as that has been for me to accept, I feel good about it and am ready to take it on with a good attitude. (Long time coming, right!) I have been able to hold my head high with pride when I look into Edward's eyes, knowing we were made for each other. MFEO. It is not to say that my heart doesn't hurt for him when I think about all the suckiness that is arthrogryposis. I just love him to death.
I am so blessed to have such great family and friends who have helped us and have prayed for us. I have really felt the love. Seriously, I know Jesus has answered prayers. Thank you.
Keep praying for him, as surgery is bearing its ugly head on Thursday. 

P.s. On Saturday, Edward's right leg cast literally fell right off! Silly boy.

foot csat fell off!

Randoms

Congrats to my husband for making it through dental school! Yay for you Dr. Adam, DDS, now get a job! Also, Happy Birthday to my much older sister! Thank you for your awesomeness during this un-awesome time! You are the best second mom to my kiddos! hahaha

Sometimes I think about my life now compared to my much younger years. I used to think that no matter how old I get, I will always feel (mentally) like a 16 year old. I can honestly say, I feel older then I am. I caught up to my age and surpassed it by a couple years. My youthful innocence, or immaturity, that I always thought would have, has gone. That might sound sad, but I see life for what it is now. It sucks. There is pain and suffering everywhere I turn. I didn't want Jesus to come yet because there was all this 'joy' I wanted to experience here on earth. I feel more then ready to experience the pure joy that He has for us in heaven now.

I know this will sound ridiculous, but I have been thinking about Edward in school. (I should just stick with today, right!) He is going to look different and I know, first hand, just how mean kids/people can be! I don't have any 'syndrome' and people were ruthless to me. I burnt my hand when I was one and I remember in third grade, I overheard a boy in my class say to his friend that he didn't like me because of my hand. Then in high-school, the girls on my volleyball team hated me. After our team pictures one year, they thought it would be awesome to put lotion and shampoo all over me, tape me to the locker bench, and put me in the cold shower. I don't want to shelter my kids, but I would like to spare them from some pain. I have been thinking about some cosmetic stuff I could do for Edward. It would not be necessary but maybe he would thank me later. No matter how normal looking or nice he will be, people are still going to be mean. That is a fact of life. 'If it ain't broken don't fix it.' Right? Or no? Mom always told me I could get my hand fixed to look normal. But it has never really bothered me. And it is me. Maybe Edward will think the same about himself. Hummm.....

my hand

Edward had another casting appointment. We scheduled his tendon release surgery for June 16. I need lots of prayers for this one. I am nervous because it will be the first time he goes under general anesthesia. Like I said before, FSS kids have a greater risk of reaction to anesthesia, malignant hyperthermia. Plus, that is the first day of my husband's licensure test, so he won't be there.

i could kiss his sweet face!

Progress

On Tuesday I had some sort of encouraging news. Edward got recast and the doctor seemed pretty impressed by his progress! He said that in a couple of weeks, two more casts, he can do the tendon release in Edward's ankles. He did say that that is a procedure that can be done in office, but because Edward's feet are pretty severe that he will want to do it in the operating room under anesthesia. That scares me because kids with FSS can have a fatal reaction to anesthesia. So, Lord willing he won't have any reaction and his feet will respond perfectly to the tendon release and will go into place. Please pray!

May 18 before casting 

May 31 after 2 casts

I can't help but feel bad whenever I go out in public. It just kills me whenever I see a normal moving baby.

This past week, I have felt very humbled. I have read and have been told of other's story. It could be soo much worse. I couldn't imagine not having Edward and yet there are soo many people who go through pregnancy and then loose their baby. We spent Mothers day at Childrens Hospital because Edward had a bad stomach virus.  During the stay I was talking to our nurse at Children's and asked her what was the worse part of working there. She said the worst was when a family comes in with their child who is seemingly perfectly healthy, but complains of small pain, and then dies months later from cancer. I could not imagine. I often think of that when I start to get emotional. I actually came across a quote the other day that really struck a chord with me. "Be kind, for everyone you meet is fighting a harder battle." -Plato

So, my husband graduates from dental school this weekend and we are moving in June. I should be super excited about all of this but I am kinda not. I feel unsettled by it all. I feel like my life is in shambles. I need to organize and pack, but I don't know where to start. I like being here where I know my baby will be well taken care of. I will love being near family, but, I don't know, I just worry about my baby. Plus, we can't seem to find a place to live.