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)

Bros be bros

Last Friday went well. Edward and I got up super early and drove five hours and rolled into our appointment. They took xrays and Dr. Mosca told us that Edward needs to have a pretty rare surgery called a talectomy...they remove his talus bone. Then we drove home. Sweet long hours in the car.
Surgery, as of now, is scheduled for March 1st. This will be a pretty involved surgery, his biggest yet.
I took this video of my boys....you need to watch it to the end. Pretty typical of brothers/siblings or youngest to oldest behavior. It gave me validation with my siblings. hahaha
http://vimeo.com/36496621

Hurting hearts

This world we live in is so full of pain. This has been a tough week full of heartbreaking news. Sweet baby Kimber, who has Freeman Sheldon Syndrome, has cancer. Rhabdomyosarcoma it is called. There is an 85% success rate, which is good. She has to have six months of chemotherapy. And I got to meet her! Let me tell you, I loved her the INSTANT I laid eyes on her! She is just precious and looks exactly like Edward! Seriously, she is one tough cookie and I can't wait to see her again! Her mom was an inspiration to me!
Today I found out that a high-school classmate of mine lost her baby at 34 weeks. I can't even imagine the pain she is feeling! My heart hurts soo sooo bad for her! UGH!
Please, just pray for these families! Our struggles are nothing compared to others'. I need to always be thankful and pray for others. I get down with my stuff that I am going through, but really, I couldn't be more blessed. Speaking of my stuff...
Thank you all for your prayers! Edward's MRI went well. Let me see...Dr. Mosca, Edward's feet/hip doc, said that his hips/pelvis are pretty board-like (flat). He showed me the MRI pictures of his hips and in one view they are flat, but in another, they show a little curve. So, when Edward has his feet surgery he will do an arthrogram of his hips. (They inject dye into the pelvis to see how much movement there is.) We will know more info then. In regards to his casting, Dr. Mosca doesn't think his feet will improve much more. Next Friday we go back and take xrays and probably schedule his surgery.
To his spine, well, I have to find a spine expert. With Dr. Song gone, I have to figure out who will treat Edward's spine. The good news is, is that his spinal cord is in the right place!
His brain...well, the focal encephalomalicia did not develop correctly. Exactly, I have no idea what that means. So, we have to be referred to a neurologist.

I LOVE this picture..taken the beginning of December.

Thank you guys so much for your prayers and continue to pray for these other families!

Prayers

I woke up this morning to some very upsetting news. A fellow Freeman Sheldon family recently found out that their daughter, Kimber who has FSS, has a tumor behind her right eye. They find out if it is cancerous tomorrow. That has made me soooo emotional all day. I can barely handle it, just too close to home. Please pray that she is ok and that her tumor is NOT cancerous!
Tomorrow we drive to Seattle for Edward's MRI. I have had a terrible feeling about this MRI for a couple weeks now and the news this morning has not helped. Please pray that Edward and I will be safe driving and that his MRI results will be clear of any bad news. He also gets recast. It is all in the Lord's hands.

my baby as i speak

Total randoms

I seriously have the two biggest babies in the world. Unreal. OOO I can't see mommy so let's cry and whine for hours. My word.
So for the next couple months I will be traveling to Seattle every week.  Dr. Mosca wants to cast him before surgery. We don't have the surgery scheduled yet, it all depends on how Edward's feet respond to the casting. He is going to HATE it! I think I will hate it too.
January 24th is when his MRI will be done. We had another eye appointment and the doc thinks he should have his brain scanned as well. Edward's eyes don't move out. So he thinks there is something off in his brain. (For the record, I don't think there is anything wrong aside from the fact that he has FSS, which is causing the lack of outward movement.) I seriously just have to think about today and not think about what is to come.
You guys should see my stockpile, it is freaking awesome! It makes me happy.
I need to clean but I just don't want to.
Proverbs 10:22 says, "The blessing of the Lord makes a person rich, he adds no sorrow with it." I am puzzled by that. I guess I am not thinking in terms of money though.
This was posted on Facebook yesterday and I really kinda like it. What do you think?
http://www.youtube.com/watch?v=1IAhDGYlpqY

This is was interestingly sad/inspiring.  Makes me rethink my sorrows.
http://www.youtube.com/watch?v=rntM7oUeFAc

Speaking of sorrows, it is funny how we measure other people pains by our own.
I just want to eat a large piece of chocolate cake or perhaps the whole thing. Like the one from Costco. Oh my goodness, yummy deliciousness in my mouth. I wish it was in my mouth anyway.

You guys should see his spine. It is getting worse! He can't hold his head straight because of it. Fricking spine.

I love this pic for some reason!!! My sweetie toot.

Seriously?! What the crap do I do with his hair?! Cut or keep growing??

When it rains, it pours. Well, I can see clearly now the rain is gone! Cheesy, I know.

Christmas pic 2011

I was really having a terrible time with myself this past month, month and a half. Just going in and out of pity parties and feeling bad about my situation. I think I was slowing down in my daily routine and I was scared to feel my hurt. I realized that I had been keeping myself super busy so I wouldn't feel the absolute heartbreak that I feel from time to time. (Just writing that makes me cry.) When I have time to think about the reality of my situation, my heart hurts, kinda like a bad breakup times a million. Then, Harv was watching a Veggie Tales movie and I had walked into the room during the 'lesson' part. Bob the Tomato was telling Larry the Cucumber that a thankful heart is a happy heart. hahaha That did it. Snapped me out of it! I have my days and my heart still severely hurts but with time it will heal. God is good and I am very thankful for my beautiful family.
So I have been obsessed with couponing lately. I have become an addict who needs to get stuff on the freap. It keeps me busy.

love this one!

Get this. Just yesterday, I was seriously obsessing over how to get Edward an ipad. I was calling, asking around if anybody had any good ideas on how to get one on the cheap. That morning, I was reading Edward a daily devotion entitled "Grace-filled waiting." Trust God through your struggles and have faith that He will provide. My favorite verse was, "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:17 Sidetracked, anyway, so while I was at physical therapy, asking my pt about the ipad, Adam calls me and says that his boss just bought him an ipad for Christmas! Are you kidding me?! Unreal how the Lord worked right before my eyes. What an absolute blessing! Adam was telling his boss how we were saving for an ipad because we thought that Edward would really benefit from some special needs apps on it. Then he went out on his lunch break and Adam finished with a patient and it was sitting on his desk! Isn't that crazy nice?!