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?!

Blows

The blows just keep on coming. We had a bunch of appointments in Seattle the past three days and each one seemed to be pretty depressing. Edward had xray's of his hips and feet. We met with a new orthopedic doctor, Dr. Mosca, who is a foot expert, and he talked with us about his opinion on his feet and hips. In short, Edward's feet have kinda broken down and the bones are not in the right place and are not formed correctly. He also said that surgery on his hips might not be an option because they are extremely tight. Then we had an appointment with our cranio-facial doc and he was concerned Edward's weight. He is still only 9.12 lbs. Of course we had pt and ot appointments, then our last appointment was with Dr. Song. He thinks that Edward needs an mri done of his spine and hips. (tentatively scheduled for the end of December.) The story with his hips are that we need to make sure that he has an adequate socket or even a socket to begin with. (They formed out of socket at 9 weeks gestation.) So, if his hips were able to move down, they would have a place to go. Does that make sense? And as you know, his spine is progressively getting worse. If it continues like this, then we will need to do bracing right away. SUCK. All this is SUCK. I am seriously trying to truck along with all of these blows. I just want Edward to be ok. I just want him to not have to deal with this stuff. Lord, just let one thing be perfect for Edward. I know God's will is perfect, but I just want to suggest a couple things He could fix that could make His will even MORE perfect. :)

he makes me feel better

In the end, if you would like to pray, which would be wonderful, you could pray that his spine gets better, his feet surgery goes perfectly, that his hips will be able to go into his sockets that are, Lord willingly, there, and that I am able to keep my fake "everything is great" smile plastered on. 

It could be worse. I have tons to be thankful for. No really, I got this.

Need I say more?!

 

They are a little big, but couldn't you just love him to pieces? I can't get enough of him.

Life?

When it rains it pours. The day after Edward's eye appointment we had some xray's of Edward's spine. Unfortunately, his spine is worse then the doc had expected. Boo. Then I was told that Dr. Song from Seattle Children's', who was going to do Edward's hips and feet, is leaving and going to LA. That was a tough week. Such is life.
One year ago tomorrow was when I found out about Edward. It has been one frickin hard year. I will never forget how oblivious I was to the ultrasound tech coming back and forth needing more pictures. I just thought she was doing it for me so I could know the sex. Finally, she had said, "you probably know by now that something is not right." Lol....NOPE! I instantly burst into tears. I tried to gather my emotions so I could make it to the elevator and Adam. Went home, cried. Came back for the meeting with my OB. Cried some more. My OB told me that she believed it was Trisomy 18. I didn't know what that was. Adam's reaction to that was so profound that I instantly lost it. The rest was a blur. The next day, Harv and I went shopping and I remember just walking around wondering if people knew that I was carrying a 'sick' baby.  I also remember driving and coming to a conclusion with the Lord that I could handle this...I got this I told Him. I told Him that no matter what happens with my baby that I would always love Him and that He has me. The next day we met with our geneticist and made the tough decision to have an amnio. When we sat down with our geneticist the first thing I told her was, "do not even mention abortion." But, stupidly, I asked her if it were her, what would she do. She said terminate. This was a Thursday. Friday, the results came back and they couldn't find anything! No Trisomy 18, aka Edward's syndrome! Then the next Monday, I got some sorta food poisoning and spent the night in the ER. I never vomited so hard in my life. I can't believe that that was only one year ago. Such is life.
In the spirit of Thanksgiving, I just want to say that I am so thankful for God's grace. I know that it is grace and grace alone that I am saved. There is NOTHING I can do, no amount of niceness that I can exude that will get me to heaven. If I thought that being 'nice' would get me to heaven, then Lord have mercy. It is God's gift through faith so that I can't take credit. It is so simple. I don't understand why people have to muddy it up.

Edward's spine

sweet thing

Guess what! Edward says momma! I have proof!

http://vimeo.com/32811933