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Sunday, July 26, 2009

Blackbird

It was like a calm before the storm today. The calm being Sunday in the hospital = slow and quiet. The storm being the coming week! We have back to school shopping, Gabe's birthday, the ultrasound appointment, and moving to Phoenix for a month! I'm already exhausted. Then the finale...Christian's 1st birthday is August 1st! I'm so happy he is here to celebrate it. Even if he can't have cake, I don't care. I'm so glad he's here.

Christian is still making strides and thank you to everyone who is following his journey and sending thoughts and prayers.

Christian makes little baby steps every day. Today I saw him move his mouth, which he rarely does and when he does, he only moves a little tiny bit. But he opened it a few times. He also made some sucking motions. I noticed the skin between his chin and his throat was moving up and down. I looked in his mouth and his tongue was at the roof of his mouth. He would only do it for a couple seconds at a time but he was doing it! I don't even call the doctors or nurses over when he practices new tricks because 1) they'll brush it off as something else or 2) Christian won't perform for them and then I'm the crazy mother who is seeing things. So I'm only mentioning these little victories. He'll perform for them when he's good and ready.

We had more Mommy and Christian time. I can pretty much pick him up and hold him any time I want at this point and it's great! He's stiff at first but then he loosens up and relaxes his joints. And he almost always falls asleep. He just stares up at me. Sometimes I feel like Christian is far deep inside himself and confused wondering what is going on. I hope he's not scared. When I kiss him on his cheek on his right side, sometimes he'll turn toward my lips - I'm pretty sure this is his rooting reflex. There are also orders for him not to be messed with at night so he can get a good sleep cycle down. It's not imperative that he sleep through the night. He didn't before we got here so I'm used to being up a couple times a night. But I want him to get rest and I can't stand when the nurses and respiratory therapists wake him up. He needs his beauty sleep!

I'm really just starting to realize the magnitude of the miracle that Christian is. Manny went to church today and saw the EEG tech that ran Christian's EEG the first night he arrived. The tech approached Manny and said that he had prayed for Christian that night. The EEG showed almost no brain activity. This is brain death. He told Manny he was unable to tell him that at the time and he had tested a little boy just a week prior with a similar EEG who didn't make it. Manny said the guy was almost in tears and was so happy to hear that Christian was doing well. Just on a side note...Christian's EEG was almost flat lined the night he came. They ran another one on him the next morning from a different tech who knew nothing of the one from the night before. That EEG showed brain waves and brain activity not even 12 hours later! I told that tech about the EEG the night before and said, "I thought I heard it was mostly flat."

The tech said, "Nah! See there's activity right here. They must have been mistaken."

Miracle.

I'm just trying to wrap my brain around this. Christian was literally gone and he came back to us! So it is with gratefulness and awe that I stand by what I said the night he got here... I don't care how God gives him back to us, as long as He gives him back. Everyday after He gave him back to us has been a miracle and more than I asked. It will be a long road but we'll get there with each other and sometimes just on faith alone.

I keep singing Christian a song. Now I'm no singer by any stretch but I sing little lullabies and nursery rhyme like any other Mama. But there is a song that is constantly in my head and it's Blackbird by the Beatles. Now I've done some research on the song and I know it's about the Civil Rights Movement but the lyrics in it are so meant for Christian right now and I can't stop thinking about it every time I get near him. It may sound dark but I feel like Christian is stuck way down, inside himself and he's trying to fight out of the darkness back into the light. Sorry to get all "Topics in Lyric Analysis: 101."

Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise.
Blackbird singing in the dead of night
Take these sunken eyes and learn to see
All your life
You were only waiting for this moment to be free.
Blackbird fly
blackbird fly
Into the light of the dark black night.

12 comments:

Shelley said...

I am so happy for you guys to start the next phase in Christian's recovery. I know he is going to do so well! You all sound like such strong, amazing people and although we don't know each other Christian's story has really touched my heart. I will continue to pray for God to heal your sweet boy.

lilmojo said...

One of my favorite songs from the Beatles and so fitting! He is definitely beating the odds. You go Christian! Shauna, my thoughts and prayers are with you guys every day. Good luck in Phoenix.

ferfischer said...

Busy busy! I'm so glad they don't mess with him at night, that used to tick me off when they used to wake Cici at night! Hello! They need sleep to heal! And, if I know anything, I know that Christian knows you are there to help him. He may be confused and overwhelmed and scared and tired, but he knows his family is there, it's obvious when you hold him and he relaxes. It will get better every day - slow but steady!
Jenny

kiera said...

As I read this I just got the chills. I cant even say anything to express my feelings.....just how incredible Christian really is! I love this song and will forever think of you guys every time I hear it!!

Jendioguardi said...

Every day I check on Christian's progress and everyday he amazes me. I feel like this little man has changed my life, opened my eyes, and has made me appreciate the finer things in life, my family, and God more then ever. He is a true miracle and I think and pray for you all every day (sometimes several times a day). I am always with you in spirit and right there with you cheering him on. He's amazing! Keep it goin buddy!! We all <3 you!!!

Brooke said...

Awesome!! That is SO awesome that he is improving SO much and that the tests are proving it!!! He is TRULY your little miracle!! Hooray for the mouth movements too!! I can only imagine how cool it must be to see him do new things!! The EEG changes....WOW...that's all I can say....WOW!!! Miracles happen and prayers are answered!!!

Stacey (Luke's Mom) said...

I have been following your son's journey the last week or so! Wow!!! Amazing! Amazing! My son suffered a traumatic brain injury two years ago. I know you were researching Hyperbaric Oxygen...we took Luke to Scottsdale Hyperbaric Medicine and saw amazing results. It woke Luke up from a coma. Feel free to email me if you have any questions, I am in Phoenix area...cmcsmg@aol.com. My son's web site is www.ourgladiator.blogpsot.com God Bless you as you embark on this journey!

gavman306 said...

Everyday I check here and everyday I am so amazed reading your stories, Christian really is such a miracle!! I am looking forward to ready about your next journey you are about to go on, I just know Christian is going to keep amazing us! You are all so strong, and I will continue to pray for little Christian!
God Bless!

Shirley said...

I am in tears. There is absolutely no doubt in my mind that God makes miracles happen. Christian's progress is, to me, proof of that. And the fact that Christian continues to recover tells me that God has something special in store for your little boy! I just know it!

Eliisa said...

This post made me cry. He WILL fly again, your little blackbird. He has so many people pulling for him...love will show him the way out.

GnJand Hailey said...

I check here everyday Shauna. I love to hear the little miracles that you see and the Dr's and rest of the staff would say would be something else or a crazy Mama. I know you are not a crazy Mama, a Mama knows what is real and what is reflex in their babies!!! I love the "blackbird" song you are singing to him, so fitting. I am keeping you all in my prayers.

Jeanine from c/s

Ann said...

Hi, I live in Phoenix and my son is trach/vent dependent. I found your website from the Tracheostomy.com website. If you are interested email me regarding the supposed requirement that you spend 30 days in a residential facility to qualify for services from the State. I don't believe that is true. I never had to do that, I know of another mom whose daughter was trached about 6 months ago and she went straight from the hospital to home. I'm curious as to who is telling you that you have to go to a step-down facility first. You can find my email on my profile. Your son is adorable and I hope he continues to make progress.

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