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!