Stupid

I am not even kidding, at my house, when it rains it pours stupidness. First off, I had to go to the doctor, uninsursured, the other night because my ear was hurting pretty bad. Both my husband and I thought it was an ear infection. Turns out I have a swollen jaw joint. (TMD) I bite my nails allllll the time and 90% of the time unconsciously clench my jaw all day and night. So the stress of my life has finally caught up with me. I realized two things about that trip to the doc. First, I have even more compassion for my sweet baby boy. You do feel really vulnerable sitting up on that bed. Second, I am not handling my life as well as I thought I was. Then our Mac hard drive sucked it up. Of course we didn't have it backed up. Pray I can recover our pictures from it. Tomorrow is/was surgery for Edward. Middle of the fricking summer and he is SICK. Are you kidding me? Nope. I DON'T want to reschedule!!!!!!!!!!!!!!!!! I am soo annoyed. Everyone in my house is sick. Not a terrible sick just an annoying sick, you know? Can't decide if I should cancel. Pray, anyways, that surgery goes well. In ten minutes we have a lady coming to do an evaluation on Edge. We have to go through bologna again to get good pt/ot/speech therapies for him. Don't get me started on this. Stupid moving. Can't post a pic.

changes

It has been ages since I last blogged!
Well, in fourteen months we have moved twice and been through four (coming up on five) surgeries, and countless trips back and forth to Seattle along with countless casting. That is crazy/tiring to even think about!
We moved. It was definitely an adventure. We were sad to leave but excited to start a real job. After seven hours in the car and a flat tire, we finally made it to our house and did a walk-thru. My pants were soaking wet and the house was filthy dirty. We were sooo upset! I guess the carpets had JUST been cleaned minutes before we pulled up. So we stayed at a hotel that night. After some text messages to the leasing agent, we decided to pull up our sleeves and do some hard labor ourselves. Ugh. It was soo freaking nasty. The leasing agency has been a nightmare. BUT, we love the house.
The Fourth of July was nice. After an ER visit with Edward, he had bloody vomit, I got back home to have fireworks literally in our front yard. I have never been in a city where fireworks are legal.
I feel like so much has happened that I can't even remember.
Recently I have been on a freezer meal kick.
Edward has lost weight and weighs in, WITH his AFO's on, at 11.8 lbs.

tiny shoes

loved his sucker

all his casting glory

love love love

hair cut makes him look older

Edwards has had massively hard poops which was the underline cause for the ER trip. The X-ray showed his backup. So he has been on miralax and will most likely be seeing a GI doc in the near future.b
Edward is talking more. Copying more. Has more attitude.
He waves hi.
He seriously thinks he is hilarious.
His spine brace is making weight gain a challenge. That needs to change.

I am busy! My husband got an awesome job on the other side of the state, thank the Lord! So we are moving again! We have yet to find a house and I am a little stressed about that. We move in two weeks. Monday we fly in to look and find a place and then Edward has a series of appointments at Children's. Edward was cast for his spine on Tuesday. His last X-ray showed that his spine hadn't gotten much worse! Praise the Lord! So we decided that a brace would be the best option to hold his spine from getting worse. We will get his brace this Wednesday.
So, I just listened to an amazing sermon! "Joy in suffering"
http://marshill.com/media/rebels-guide-to-joy/the-rebels-guide-to-joy-in-suffering
Everybody suffers. In some way shape or form and I want to suffer well. You know, sometimes I like to play the victim. Sometimes I like people to feel sorry for me and what I have been through. I think, "don't people understand what I have been through? If they knew they would be nicer to me." That sucks to admit, but it is true. That is not suffering well. I don't want to use my hurt as a crutch to gain attention or even praise for my own ego. I don't want Edward to be in vain. He is so precious and God's true work in form that I want his story/life to be for God's glory. I know it will be. I want to be humble enough so God can use me, too. I want my 'suffering' to be purposeful not purposeless! I believe that joy is a choice. I can decide to be happy in all circumstances. 2 Corinthians 12:10 "That is why, for Christ's sake, I delight in weaknesses, insults, in hardships, in persecutions, in difficulites. For when I am weak, then I am strong." James 1:2 "Consider it pure joy, my brothers, whenever you face trials of many kinds.." Romans 5:3 "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance.." I loved this quote by a Romanian pastor who suffered under Communist rule, "Christians are like nails, the harder you hit them, the deeper they go." I want to know God better through my trials. That is why I want to suffer well.
My boys be crazy. Seriously! Harvey likes to annoy Edward. Edward, in turn, likes to make awful sounds when he is annoyed! Most the time, Edward adores Harv. Harvey will jump or sing or do whatever to make him laugh or smile. Every morning when he wakes up, he tells me to go get Edward. I love seeing their relationship get stronger! Harv is very protective of his baby brother!
At Edward's last cast appointment he weighed 11.9 lbs! That is pretty good...I would like to see 13, but I will take it! He gets his AFO's on Monday! Yay! I will post more pictures when he gets his brace and afo's!

awesome

"I was born awesome"

Hi everybody! So Edward is ONE! Can't hardly believe it. He is such an awesome kid! He is a good natured boy and definetly lets me know when he wants/needs something. He loves attention, the mornings, and his brother. I could go on and on.
His feet look pretty good! I can't wait for him to be in his AFO's so we can work on walking!
There is a lot change that is about to happen in our lives. We might be moving again. (Exhausting to even think about.) Lame, but we are excited to see what the Lord has in store for us!
Last weekend I was able to meet my new niece! My husband's brother and his wife had their fourth child and their first girl! She is such a doll! I fell madly in-love with her! I wasn't expecting it but afterwards I was really emotional. After holding Mikayla and cuddling with her, I realized that that's how I should be holding my baby! I mean I have held other babies since Edward but it was the very first time that I have actually felt 'sorry' for Edward. (I hope he forgives me for this.) It was an awful, awful, awful feeling. I felt sorry for the things he won't be ble to do in life...things he should be able to do. I mean, poor Edward, he gets pity stares alllllllllllll the freaking time! The last thing he needs is for his mom to feel that way. So I got it out of my system and am better now. I realized that I need to treat Edge like I do his brother. He will be able to do anything he puts his mind to. And that's that.
Edward is fricking awesome! So is his brother!
It was also brought to my attention that I need to watch the motives of the people I let hang around my kids. The very thought of people befriending my boys so that their kids can learn 'compassion' makes my blood boil! Makes me SICK just thinking of it! How about YOU teach your kids to be kind NO matter the situation. Oh man...
That's about it!

so so so unhappy

the 90 degree looks odd to me!

pins in bottom of feet

Birthday!

Happy Birthday to my Sweet Boy! 

Subdue the emotion of it all

We had a neurology appointment on Monday to explain Edward's soft spot in his brain. He said it was most likely there since birth and could possibly effect his motor developement in his right side. He said it could have happened during the third trimester from me and my blood. That sucked to hear.
After his appointments I went to some thrift stores and I found the most amazing pair of boots for $1.29!! Yup, it was my lucky day! My size and everything!!! I was on a mad high from that amazing score. Then my brother and his wife threw the BEST surprise birthday party for Edward! It was the sweetest thing in the world! I adored it! Thank you guys!
Monday night was tough because I had to follow Edwards surgery feeding schedule. I was up with him at 1:30 am, 3:30, and 5:30 making sure he was full...then we checked in at 6:15. I was strangely calm the whole day! It was weird. Could have been because I was still so thrilled about my boot find...haha. Edward is such an awesome kid. Surgery was faster then expected. Our doctor is a rock star! I was soooooooo excited to see Edward! Our doc said that he was "über" pleased with how Edward's feet turned out and said that the talectomy was nessecary. He said that there was no fluid around the joint and that his tendons and ligaments that were stuck to his bone were like glue. (which is why there was no movement...that is just so crazy to me.) The bad news is that his hip joint is pretty much the same. They formed a sudo-like joint up by the top of his pelvis. He said the joint is like cartilage which is why, again, there is hardly any movement. So he doesn't think reducing his hips will be an option. Instead, he thinks it might be best if we break his femur bones and put them into a better position for hygeine reasons. So he would break the bone and put pins in. Suckage!! I just pray he will walk and sit at a 90 degree angle. And we only got like three degrees from clipping his abductor muscles. Boo.

at home sleeping

my amazing $1.29 boots

look at those feet!

having a reaction to some meds

right before he was taken back

I felt super humbled by the support that we got from family and friends. I literally have the best family and friends anyone could ask for! Even acquaintances texted me with prayers and support. And the prayers that I am not aware of, thank you! I know that through all the prayers I was able to handle everything and that Edward was in the Lord's hands. This is the thing, I don't want to think about it all. I don't want to get emotional. I know that if I let myself go and really feel everything, I would loose it. I have experienced that once before (a year ago) and don't ever want to experience it again. I have to keep everything at bay. Edward's birthday is coming and I don't want to be emotional. I just want to be in the now and not look back at what happened a year ago. I am beyond thankful for my life and my boys and I want to focus on that. Dwelling one the past is not healthy, right? Pictures are bad. This year has been one heck of a freaking year but we made it and we are all better for it! Edward is God's gift to me and my family, for His glory, and I would do it alllll over in a heartbeat! And I would take 10 more FSS babies. I need to focus on the now and Edward's spine and the many more surgeries that are coming in the very near future.
So, with that said, all your prayers and concern for Edward have meant the world to me! God's love is good! Psalm 30:12 "To the end that my glory may sing praise to thee, and not be silent. O Lord my God, I will give thanks unto thee forever." What an awesome verse of joy, gratitude, and thankfulness. I love it.

Surgery is coming...soon

sleeping

cutest face ever!

love edjy's face

big bro needs to be center of attention

new haircut

This will be quick. In one week we visited the urgent care, er, and two visits to our pediatrician. Edward got a CAT scan at the er and he probably caught the flu there. In that same week it was my husbands 30th birthday! It was a very stressful week. The good news out of all that was that Edward now weighs 10.6 lbs! I can't tell you how relieved I was that he has gained weight!
As surgery creeps closer, I am starting to get really nervous about it. Aaahhhh!! This is a big surgery and he will be under for probably five hours. That in itself is scary and the fact that we are removing a bone from his foot is very unsettling. I have done my homework on this surgery and I feel confident in our doctors ability. There is no right or wrong decision so I have to pray that this will have a good outcome for Edward. Ahhhh! I hate this feeling! I have had a lot of outside opinions and that is very hard to deal with. I just have to put my trust in the Lord that He will work it out! Ahhh! Please pray for Edward! I have been house bound for the past two weeks and we are going a little crazy. A lot crazy really. April 3rd is the day.

hand braces

omg the sweetest

poor babes spine

Could you guys also pray for his spine. That is one thing that is one thing that really weighs heavy on me. It can affect his organs and in turn his life span. I pray everyday that the Lord will stop the progression and straighten it out. His curve is large enough for surgery right now. After he heals from his feet, we will start bracing his spine asap, well pending hip status.

my boys running outside...edward loves it

roaming Target making a mess