Yesterday: that fork in the road...

Yesterday Cody and I headed down to Little Rock - ACH. It's a common trip for us. We enjoy the ride down, Cody LOVES the glass elevators at ACH. We stop before every appointment and watch and wave at the people going up and down. Cody even typically gets nurses and doctors to ride up just so he can watch them. Finally, at our last appointment, I got him to ride....
Cody LOVES flashing peace signs to passing cars on our drive and gets truly offended when you don't PEACE back at him. :) Although YESTERDAY....this boy flashed another sign - a single middle finger. He was SO proud - UNTIL he saw the look on my face and realized this sign wasn't going to be one he could continue to use. It was cute. And even though I had a LONG talk with his daddy on that one, I still had a small sense of joy that he is becomming more and more, a 'normal' 8 year old boy...
Oh man, such a different drive then what it used to be.
As I'm driving down I was thinking about the last 8 years and how this drive has changed. It used to be weekly drives to St. Louis, pull over, feed and change the baby and get back to it. Now, it's Little Rock....now it's flashing peace signs to cars. Rocking out with my favorite 8 year old to good music! The drive with Cody is a reflective drive. Reflection on all the changes I've watched him go through. I just watch him...in such awe. Once again, I get emotional. You see the pattern? :)
Yesterday's appointment is the fork in the road. One direction opens the door to answers and direction. The other direction sends us back to square one. New hospital, new specialists, starting over from the beginning of Cody to see what and where something was missed. Cody's pulmonologist ordered an MRI of the brain - mostly the brainstem. Apparently, your brainstem houses these tonsil looking things and this is the area of the brain the controls breathing, CO2 retention, etc. So, since Cody's genetic testing for Congential Central Hypoventilation Syndrome came back normal, his doctor wanted to look at his brainstem to see if there were any malformations, tumors, etc. We're looking for some sort of indication - some sort of reason for this retention/seizures so we can decide on a course of action.
ACTION. I desperately need action for my little buddy. The nurse and anesthesiologist gave me the usual run down of the procedure. It was time to put him under. I've done this with Cody a million times - it never gets easier. His face, he was being so brave, but clearly still nervous, he still doesn't understand what all this is. Doc Charlie let Cody have root beer flavored gas to put him to sleep (Cody's favorite flavor!) and I'm holding his hand until it is limp, I kiss his cheek and whisper in his ear how much I love him. They say, "We'll take real good care of him mom." and I go about waiting. I keep my very best brave face on until I get into the hallway. Then, I let it out. There is something about how good tears feel against your cheeks after you've been holding them in. My tears and worry are not about Cody coming out of anesthesia - it's more the waiting, the stress, the wanting to take the fear from Cody. I get my tears out, I feel better, back up and ready to fight again. They said it would only take 45 minutes max - I mean, hell, it's only an MRI. Well, 1 hour and 21 minutes later....I realize my leg is shaking the entire chair and I stand up, ready to start shouting and they call me back. Whew. Cody had been throwing up before they had woken him up - my poor sweetie was so sick. But still, at 8 years old was wanting to be so brave that he never once complained. Never once shed a tear. Oh to feel the need to be that brave. So much so, that every doctor on his team that brought him stickers, bubbles, a stuffed animal - he asked for one for his brother. That's my sweet boy.
Ms. Angie - our amazing nurse got us all fixed up and sent us on our way. Cody slept the whole way home, which is so not like him. Along about Ft. Smith he sat up, looked around and said, "Mom! Where did the sunshine go?!" I told him it went to bed and he goes, "UGGGGGH!" and passed right back out. He is such a funny thing. He had wanted desperately to stop by my office and see his friends at my work and was mad because if the sunshine was in bed, he knew my office was closed.... He just loves everyone. Everyone is his friend. He doesn't know hate and I love that about him. A friend asked me yesterday if I ever asked, Why... Sure, I've spent some time asking why....but what I've learned is that Cody is the greatest gift ever given. I know I say that a lot, but it's true. Children are the absolute greatest gift. I am forever grateful that I was trusted to be his mother. As far as why - Cody is going to change many lives. He is going to change the lives of people he never even meets, possibly not even in his lifetime. These amazing doctors are going to unlock the mystery that is Cody and it is going to help so many other people. The question is how on Earth did I get so lucky to be his mother?

I sincerly thank each and every person that has said a prayer for my sweet Cody. Thank you to each of you that post sweet and encouraging thoughts on my facebook. Thank you to every teacher, therapist, doctor, friend that has been there for my family. I feel like each of you are there, helping us push on and that....that is the best feeling in the world! Now, let's pray for definitive answers with this MRI!

Emotions and Patience

I have a lot of one and not enough of the other.

I am an extremely emotional person. I wear my heart on my sleeve. I care - about everything. I want to fix everything for everyone. Then, bring my kiddos into the equation and there are even more emotions and even less patience.

Eight years of searching. Pushing. Eight years of more questions and a lot less answers. I knew Cody was one in a million before I had even given birth to him. But, I guess God is showing me just what that really means. I'm learning how to channel my emotions, my need to fix things and lack of patience - channeling it into action, change. I'm quick to say that Cody teaches me so much. But it seems like that statement doesn't do my feelings justice. I look at him and he doesn't even know what effect he is having on the world. The effect he is having on his momma. I hate that Cody has endured physical and emotional pain. If I could have put myself in his place anytime there was hurt involved, I would. Especially the emotional hurt. Of course, any parent would. But, I wouldn't trade this journey for anything and I wouldn't trade my pint sized partner. Cody made me stronger. He and I are a team.

He has come a loooong way in the last year. Mostly in part to the AMAZING people in his life. Ya know, it takes a tribe to raise a child and lemme tell ya, we have a ROCKIN' tribe! His teachers, therapists, doctors, friends and his sweet, fun and FUNNY little brother - wow - I couldn't be more thankful for a more loving and loyal tribe. I mean, he is doing so great in school....so great and he is SO PROUD of himself and that makes my heart swell. Seeing him get so excited about homework and reading....that genuine smile....I still get emotional and tear up when I see that because in the beginning so many doctors (that I've since kicked to the curb!) doubted his abilities - doubted he would make it period. So to each milestone we make with Cody, after I dry my tears, I think IN YOUR FACE to those doctors....and high-five my sweet C1.

So, we are now trying to figure out his hypoventilation and seizures. We will be having an MRI at the end of the month to see if there is a tumor, malformation, or....who knows....in his brainstem. If that checks out to be normal, I'll be knocking on the Mayo Clinic doors.