New post!

First a couple words.
Shout out to North Dakota for standing up for the unborn! No abortions past six weeks. That is a huge success in these sucky social times. I heard a stat semi recently. Planned Parenthood, last year, killed 996,000 babies and for every murder made $314 from tax paying citizens. Sick.
Marriage is between a man and a women. It is not for homosexuals to tell me how to describe marriage to my children. If you want to make homosexual decisions then obviously you are free to. I am not going to exclude you from my tea party, in fact you would make it fun. I am just sick of people not saying what is right for fear of offending. Well, I don't care. If you think I am a bigot or a intolerant hater for having this opinion, then stop reading. But, in effect wouldn't that make you the intolerant hater?  I can have my truth just like you can have yours. Deal with it. AND I think we should have heterosexual parades. It is time to stick up for God's intelligent design i.e. man and women i.e. procreation.
Back to Edward.
Video One:
http://vimeo.com/62742206

Video Two:
https://vimeo.com/62749942

cheeto monster in his chair

more cheetos 

better idea of chair

PS....he has dropped a pound due a very long lasting cold. throws up every night and sometimes morning. not fun

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Happy New Year! I am very glad to be rid of 2012 and excited for the new year! Edward weighs a fat 14.5 pounds! (down to 14.1 Wednesday) His spine is holding and I don't have any surgeries planned, as of now. (Possible wrist and thumb surgery in a year...maybe) The news on his spine is good. He had a traction xray done and his curve (while being stretched) is 47 degrees. The point of concern is 50, so I need prayers to keep it stable for many years to come! Or at least 6 months.
Edward is talking a lot more and is rather funny. I can't quite tell who he is more like. H acts most  definitely like me. Edward....I can't quite decide. He thinks he is hilarious. He is stubborn and smart as a tack...sounding like me..waaahahaha :) He knows exactly how to work me. My husband thinks it is rather sicking how easily he can get what he wants with me. His feet are holding pretty well. Doc said we have lost about 5 degrees but considering how tight his feet were to begin with, that is pretty good.
Nothing new, really. Wednesday we have another arthrogryposis clinic. (It is Friday now) Allllll. Day. Long. I love my days with my boys. I love watching Downton Abbey and the Bachelor. I am obsessed with fabric and making stuff. I recently started to read again. WHAT?!?? I know. Not a whole lot mind you but enough.
Oh, we have Edward's equipment. Freaking industrial stuff. Unreal how heavy it is. I also can't believe it is in my life but it is. (picture to come)
I can't believe Edward is going to be TWO soon.

bored of the ipad so he napped

rare snow day

attitude with the pants i made him for Christmas

loves of my life!

My mom showed me this video. It is amazing.

This is my Christmas picture of the boys. You don't understand how precious it is. The amount of work it took for Edward to pull himself up and then lean his head on his brother.

Scenario A:
We are at the mall playing in the kid area with slides letting Edward go down the slide all by himself. He is LOVING it! Giggling like crazy. A lady sees him and stops by the wall of the play area and asks if he is special needs. We are like uh, yeah while continuing to play. She loudly tells us that her daughter is special needs and demands, "let me see him." Shocked at the audacity of this lady, I ignore her while shielding Edward. I fought my urge to show her my special bird finger. And my husband almost punched her in the face.

Scenario B:
The boys and I are at Costco scouting the books and toys. A lady walks up to us and tells me that Edward is the cutest baby in the world. I thank her for her kind words and she continues by saying that he is just such a precious blessing from God. I say yes yes he his! She dotes on H for a minute too. Then she tells me her daughter, who is now 24, has cerebral palsy and has seizures and stuff. She tells me that doctors told them that she would never walk but that God was soo good. She said that when her daughter was seven years old she gave her life to the Lord and two days later she started walking. Tears are rolling at Costco.

So! Edward had his sleep study early November and I just found out the results. Not terrible news. But he is borderline for his oxygen intake at night and he stops breathing two times every hour. (apnea) Given his anatomy of his neck, nose and chest they will want to take his tonsils out which means another surgery, of course. They will want to put him on oxygen at night, but very little. So we shall see.

Night of sleep study

Oh. my. goodness. Edward is suuuuch a nut! He is talking lots more. Telling me stories that I can't understand! and he has been in timeout multiple times. I love my boys. They are beyond crazy! H has been such a great brother! He will give Edward his milk when he is crying, get me diapers, make him laugh uncontrollably and get really mad when I put Edward in timeout! They love each other sooo much, it melts my heart! But they are also massive butt-heads.

Edward standing at therapy...cutest spongebob butt ever!

   

I want to clear a couple things up. Edward has Freeman-Sheldon Syndrome. What does that mean? Most of the time, I don't know. What will his future look like? I don't know. I would love say that he will be exactly like you and me. Obviously he won't. He is as smart as a tack. Cognitively he is all there and more! He is trapped in his body. Makes me sad. Will he walk? Yes, I do believe he will walk. Every child with FSS is different. There are no two cases the same. What does his life expectancy look like? I don't know. Kinda depends on his spine. I am faithful that the Lord will give him a long and happy life. But what is yours or mines life expectancy? Only the Lord knows. Will Edward talk...normally? Umm...I want to say YES. Is this a muscle or bone thing? All I know is that it is a mutation of the myosin/muscle gene. How big will Edward get? Umm..I am not sure. Maybe 5 feet? These kids are small. Guys...I am living day by day. That is all I can do. Out of all the grandchildren my grandparents have...we are talking 30+...I was blessed with this. I am excited for the day I get to ask Jesus why, what did You see in me, I am nobody but a stubborn loud-mouth!? Jesus has a great and mighty plan. I don't know what it is. Who does? I trust and know that He is good and I am thankful for that. He is always with me and my kids and will never leave me or forsake me. His promises are good. This world is crazy and scary. I am a sinner and fail constantly but I have been redeemed. ONLY by God's grace I am free from this life. So are you and our kids. God loved us enough to send His only son to die for our suckiness. If you have kids that should hit you like a ton of bricks. I couldn't give my kids up to die for anything. All we have to do is believe. Yes. I believe, Lord. I love You with my whole heart and soul. The pain that I feel is only temporary. All my trips to Seattle...the pain and hurt is so deep inside of me. But I choose to take comfort in Your unfailing love because You loved me first. I don't know why but you have knocked on my heart and I am listening, I am yours. "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken." Psalm 62:1-2 "You who live in the shelter of the Most High, who abide in the shadow of the Almighty, I will say of the Lord, "My refuge and my fortress; my God, in whom I trust."" Psalm 91:1-2
Let's lay our troubles down. Humble ourselves. Be free from all of this. God loves us.
http://www.youtube.com/watch?v=3PN-BMHi5L8
http://www.youtube.com/watch?v=VzGAYNKDyIU

Don't waste a second more of this life.
It is not worth it to not believe.

Post Surgery

It has been about three weeks since my baby has his Gtube surgery. That was a TOUGH surgery. They had trouble intibating him...due to his 'difficult' airway. He had massive trouble recovering. Edward spiked a temperature multiple times in recovery and his heart rate rose. They had to do extra tests and we had to stay an extra night. It was beyond stressful. I think I went into this surgery thinking that since we have been through this song and dance SIX times before that it will be just like the others. NOPE. Surgery will only get more difficult as Edward gets older. It is so emotionally exhausting and stressful. But just yesterday we actually started to use his Gtube. It has taken three weeks for him to get comfortable with his hole in his belly. (And me to wrap my brain around the ooze and the leakage from the hole in my babies belly....not an easy concept to be comfortable with.) I mean come on people. There is a hole in my 18 month old's belly. Not. o. k. His stomach was sewn to his already thin/non existent abdominal wall. Bla
Yesterday we had an eye appointment. Transferred care from Spokane to Seattle. Um, yeah, they think Edward won't even have binocular vision. And he needs to wear a patch for hours in the day to make sure his left eye can get back up to par. AND they mentioned that he might have some ear disease due to the way he holds his head and that it has been reported with other babies like Edward. JOY. That is exactly what I wanted to hear. We shall see though.
Next Wednesday Edward and I go to Bellevue to have a sleep study done. We stay over night and he gets hooked up to wires and monitors while he sleeps. Lord willing!, they will tell us that all he needs is  an oxygen mask at night to help him sleep. Lord Willing. After the sleep study we will have yet another round of appointments.

recovery

tired...waiting to see brother from surgery

gtube

hole

edward entertaining himself while waiting for doc at recent appt

my awesome lion

my sweet loves

spongebob boys

Edward will hopefully be getting some specialized equipment to help him sit and walk! I am uber excited for that!

special chair