Friday, January 27, 2012

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!

Monday, January 23, 2012


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

Thursday, January 12, 2012

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?

This is was interestingly sad/inspiring.  Makes me rethink my sorrows.

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??