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

6th Surgery in 17 months

Ok. So. Edward has his G-tube surgery on Friday. Thursday we have to make a trip up to Seattle for a spine appointment and his endocrine appointment. Last Thursday we had three appointments; pulmonary, upper GI scope, and pre-op. His upper GI seems to be well. Pulmonary/Lungs said that he needs a sleep study ASAP. That is scheduled for Nov. 7. We all don't think he is getting enough oxygen at night. And she recommended we go see an E.N.T for his nasal anatomy. (One side of his airway is pretty closed.)

not the best picture 17 months

BUT here is a video of Edward rolling over. I do love him very much. Even though the weight of the constant problems overwhelm me, I wouldn't trade it for the world. Even though I have to remind myself that, yes! Jesus does love me, I wouldn't trade him for the world. Even though the thought of the pain from the past 22 months (from the moment they told us he had Trisomy 18 and wouldn't make it, to his G-tube surgery) could send me to instant tears, I wouldn't trade him for 1000 "healthy" babies. He is God's LOVE given to me in a not so 'normal' package. I wouldn't trade God's tangible love for anything.

my love                                                                                                                                                                                                        

https://vimeo.com/50644953

Yay! It was my son's birthday! He is three. I can't believe it.

Oh My Gosh. I really want to be Peppy Peggy right now. However, there are so many appointments and new concerns swirling around in my head that I can't think straight. Honestly, these past couple months have been super, super hard.

There has been a lot of changes in my life. A lot of revelations. I don't know how to process everything. I am kinda at a loss of where to go from here, in relation to this blog and in general, i guess. I don't know. I am extremely overwhelmed and that is an understatement.  I am having trouble focusing. I am dealing with a whole new round of Edward issues. The first of them being his attitude towards me. (it is awful) Sickness adds to worry when he is unable to gain weight. He currently last weighed 11.11 pounds. We have therapy three times a week on top of new round of Seattle children's appointments; GI, Nutrition, spine, lungs, upper extremity orthopedics, eyes. I am just tired. I need to get away.

Bare with me, I need to just jot down everything involving Edward. So, his last surgery went well...Hernia repair and circumcision. We were in and out within a day so that was wonderful. We have started receiving therapy three times a week. We have a special education teacher come over on Monday's and Edward LOVES her. She is great! They play and sing songs. Edward adores it! On Wednesday, now changed to Tuesday, we have feeding therapy. Edward was lucky, in that we got to be evaluated by the top feeding therapist. She was great. It was her that got the ball rolling on a swallow study. Then Fridays we have pt. So back to feeding, last week we had a swallow study done. It showed that when Edward swallows his food he holds it in the bottom of his throat, right where his airway is. It takes him on average 3-5 swallows to clear the food but doesn't actually clear it all the way. There is residue he leaves because he fatigues from all the swallowing. So, those are two major risk factors for aspiration. End of story, G-tube will be put in within the next couple weeks. (he most likely has aspirated which would explain some respiratory issues) That leads to our recent gastroenterology appointment. E has been throwing up a lot lately and not pooping as well as he should. He is on miralax which seems to be helping. He probably has reflux which should be figured out with the upper gI ultrasound next week. The GI nurse practitioner gave us another laxative which we will not be using because it is habit forming, I need to do more research on that. She also ordered us a upper GI ultrasound to make sure his anatomy is right before surgery of his Gtube. He had his blood drawn to check for thyroid issues and any gluten allergies (to cover our bases.) She called yesterday and said he has elevated thyroid hormones. Will be scheduling an endocrine appointment shortly. Next week is insanely crazy. We have a pulmonary appointment to figure out his lungs. Hopefully schedule a sleep study and more tests. At our last regular doc appt, his oxygen was a little low. Nutrition will be involved here shortly with the coming gtube. Can't think past all of this.

loving the sun

remember last years pic?

has actual pants on!

my boys acting crazy!

pretty appropriate

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

lovely

Here is a quick list of the current happenings:
-spine is getting worse by about 7 degrees in past four months
-surgery has been delayed for six weeks due to his RSV and double ear infection he had three weeks ago and another more recent cold on top of it
-Edward had his first tooth that surfaced yesterday
-he is ten months old
-he weighs 9.9lbs
-he cries/whines whenever he sees me so he can get what he wants

Yup. What do you do? I wish his surgery wasn't so far out. I feel like life can begin after this surgery. In my mind (fictional thinking) I feel like Edward will magically become a "normal" ten month old. Not true. It will always be the next surgery, the next brace, the next cast, the next "thing." Such is our wonderfully blessed life.:)
So I have to tell you about my little struggle that I recently went through. A couple weeks ago I went to a moms group at church and the speaker spoke about depression. (haha I just remembered that I had walked into the church that day with TWO different shoes on!!!! I couldn't believe it! That should have been everybodys first clue that something was off! But they just laughed at me.) I had been emotionally struggling for awhile but I held it together while listening to the speaker. The thing that hit me was when she spoke about her pride and thinking she was mentally strong enough to fight the battle herself. Ok. So whatever, I went home and went on with life. The next week, last week, we had to go to Seattle for preop appointments. At the same time my friend was having her baby, and side note, I know about eight or nine friends who are pregnant around me. The day we traveled to Seattle was probably my lowest day. Adam was seriously worried about me. I had gotten myself into such a pity party that I couldn't see the light. I have this problem of comparing my life to others and I couldn't see the blessings in front of me. It just seemed like everybody else was getting their 'fairytale' life. Here I am traveling across state to deal with one of many surgery appointments for my baby boy. What parent wants that? And it could be soo much worse and I know that, but I couldn't accept that, my situation was the worst in the frame of mind I was in. I didn't really talk the whole trip as I was battling in my mind with no avail. Then I remembered that I couldn't get myself out of my mind myself. Words from the depression talk come back to me. I started to pray hard. I realized the devil was attacking me and I asked Jesus to fight the battle for me, I couldn't do it myself. And He did! I kinda snapped out of it. I think as Christians we have to be mindful that the enemy is actively trying to bring us down and that we desperately need the Lord to help us fight the battle. Romans 12:2 "Do not conform any longer to the pattern of this world, but be transformed by the renewing or your mind. Then you will be able to test and approve what God's will is-his good, pleasing, and perfect will."
So, I am doing well. I have to do my do diligence and keep my eyes fixed on the important things. Enjoy the present and read my Bible everyday. Edward is God's perfect will and I get to be his mom. I love my life.

funny big brother

sweetness

he loves his finger! (all my awesome pics are on instagram but can't figure out how to get them on here yet)