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

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