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.