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Monday, August 3, 2009

A Blessing of Sorts

Oh, baby Christian...you impress me everyday. Mommy is so proud of you!

Today was BUSY! Gabe started school today and needed an extra two shots! Yikes! And they hurt him really bad but he was able to suck it up to look cool for his first day.

Christian was such a superstar today. He was so loose and able to move. The occupational therapist worked with his arms and said he was coming right out of his locking up. His back wasn't as arched and with support to his head and neck, he's able to sit straight up. He really loves that position, too. His little eyes look around and his heart rate drops so I know he's comfortable. I even caught him moving his foot up and down and not in response to his tensing up. He was just moving it back and forth and following it with his toes. These little things that his body does I always took for granted before, but now they're little celebrations. I celebrate every twitch and move he makes, whether on purpose or by accident because it means the brain is waking up and making connections no matter how small.

I've also been working on Christian's oral stimulation. He's been making sucking motions more and more frequently and some are so strong, you can here him smacking away in there. So, I think I've mentioned that the speech therapist said to work on his oral stimulation with a pacifier. This is important because those muscles in his mouth will help him speak one day. The sucking and swallowing will help him learn to eat by mouth again. And he doesn't want to miss Daddy's cooking, absolutely not. So this is something I wanted to jump on. He didn't respond to the pacifier they had here so I brought one from home. The one from home seemed more conducive to his sucking reflex just by it's shape - it's narrow and then bubbles out like a ball at the end rather than just a straight nipple.

Well, I was able to maneuver the pacifier past his teeth and into his mouth and wouldn't you know it he sucked on it! And quite a few times! He did take a pacifier when he was about 2 months to about 6 months. Then he spit it out. But the point is that pacifiers are not foreign to him. Was it a coincidence - the pacifier was in his mouth while he was practicing his sucking reflex? Who cares?! He was stimulated and responded, whether by accident or on purpose, he responded. And I tried to take the pacifier out of his mouth slowly to see what he would do and responded to that by sucking again! Daddy better start cooking, because we are on our way!

I'm finally comfortable here at our new digs. Would I take Christian and leave if they told me we could? In a heartbeat. Honestly, I couldn't stand this place and I could write a whole separate blog about it. But I won't. I've decided to accept and embrace this place. I've made our little corner of our room into a miniature apartment. We decorated the heck out of Christian's crib, we have food, entertainment, and we've made it ours. I've taken over all of his care, accept at night so I can sleep. And that's only for his feedings, which are every two hours. I administer his medication, bathe him, and I do his trach care. I change his positions, do range of motion exercises, mouth care, suction, and calm him if he's agitated, which isn't as much anymore. I also put him to sleep, which is a great joy of mine because I know he's responding to something I'm doing, whether it's rocking him, putting him in a position he's comfortable in, or turning on the mobile he likes. So now I look at this place as a blessing. It's a blessing because I've relearned how to take care of Christian and I know him again.

I was also thinking that if I am weepy and upset about this place, who will be strong for Christian? He already has such a struggle, I need to be his strength. I need to be strong for him so he can fly. And I can't very well be strong if I'm waking up thinking about how much it sucks to be here.

So I have a new perspective. We're here for Christian. We will make the best of it and because of this place I have become a better mother and a stronger mother. God will see us through...I know He's not done with us. These situations really show you what you're made of and you have to reach down into the depths of your soul for strength and faith you didn't even know you had. I'm not special. I'm not stronger than anybody else. I'm just doing what I have to do and at times that's meant relying on faith and faith alone when nobody else believed.

I haven't met Christian's new "doctor." I put doctor in quotes because I'm not sure what kind of doctor he is. Pediatric? Special needs? What? I just know that I looked over his notes and I already don't like him. Just scribbles of severe anoxic brain injury...blah blah blah. I don't want to know your opinion, I don't want to hear the text book term, I don't care what your drive by assessment is. Know why? Because I see his progress with my own eyes and you don't even know him. Get away. Why does opposition make me so feisty? But keep opposing us because it just makes me have even more faith in my boy, "Doctor." I'm really on a mission to find professionals that BELIEVE Christian will recover and succeed. Otherwise, I don't have time for you.

Okay, don't let me get up on my soapbox.

Tomorrow we have our first HBOT treatment! Yipee! The clinical coordinator almost gave me a hard time and had to check to see if they could "accommodate" me. I didn't get crazy with her just yet because I wanted to see if she could make it happen. Well, she did so I didn't have to go all mama bear on her.

It will be a big day tomorrow so please send us positive oxygenated thoughts and prayers!

9 comments:

Sarah and Mitch said...

I'm glad you are making home out of it, and so so so glad you are getting to "know" Christian again!! I really believe that connection and bond is what will carry him further than everything else. He has his biggest cheerleader and caregiver all in one, and you can give him everything he needs.

I am really excited to hear all about the HBOT tomorrow!

gavman306 said...

I got a chill when you said you are getting to "know" him again, I realy believe that is what is carrying Christian all this way YOU! You two have such an amazing connection, that is what's gonna bring him back! I can't wait to hear about his first HBOT tomorrow!! Lots of prayers for you!! You show 'em Christian!
God Bless!

Tracy said...

I'm not surprised. There are so many people all over the world praying for Christian. He will go far. Hugs, mama bear.

Eliisa said...

Shauna, I'm constantly impressed by your optimism and your positive attitude. It must be SO hard, but you're staying positive for your little boy, and that's so amazing.

Keep fighting for him, and he'll keep fighting for you. I hope the HBOT goes GREAT today!

Rochelle said...

I hope all goes great today witht he HBOT! When K was in speech therapy and the therapist told me that her tongue, cheeks and lips didn't have alot of muscle tone or strength, one of the things she suggested doing was spraying a small squirt of that sour spray candy stuff on her tongue and letting her mouth do its "automatic" reaction (it squinches and tightens those muscles). Alternating between the sour and the sweet versisons gives different reactions but still builds those little muscles. There is also an oral device that has a vibrator type nobby thing on the end that you can stroke around the lips and the inside/outside of the mouth and cheeks to help "wake up" those facial muscles. I will try and find the link to a place where you can order one. These tips might help with Christian's muscle tone and waking up, too. Maybe you could spray the candy spray on the end of the pacifier? Just make sure its okay with the medical staff first of course. The therapist told me that exposing K to the sweet, sour, bitter, cold, hot sensations were the best ways to wake up those muscles in the face/mouth area. It just reminded me of this when you mentioned in your blog about the pacifier and sucking response. Glad things are going better for you there - I know its not home (and thankfully its temporary) but glad you're making the best of it. You're Christian's best advocate and supporter and we're all praying for more blessings and miracles. I'll even pray for that "doctor" that he turns out to be a BELIEVER in Christian. Hugs!!

lilmojo said...

I am so amazed by Christian everyday and even more so with your ever positive attitude. It is so inspiring to hear your stories of Christian and how you are such a support for him. I pray for you guys every day and have others praying for you.

I just saw a report on the news about a Irag War veteran receiving HBOT therapy for the damage done to his brain and his miraculous improvement. I'm very excited for you on this next step in your journey and will keep the prayers coming.

maz said...

Hoping today's HBOT treatment went well and Christian liked the heady mountain altitudes! Go oxygen go....help those little brain cells find their feet again!

Happy to hear of his every bit of progress...no matter how big or small, progress is progress - and I hope that the new doctor is on board with that. Surely they can present what they consider realism, as well as optimism...they don't know everything after all.

I'm glad you're feeling more comfortable in the new place...but glad its only temporary. As I say to Jack...only another, what...24 sleeps ? til hopefully you get to go HOME!

Take care of yourself Shauna....thinking of you! Big smooches to Christian!

Maz
x

graphartpcp said...

Shauna, give Christian a hug for me. Glad to hear of all the new things he's doing. Oh BTW, maybe some of that Mama Bear thing comes from your mom (it's a Chlad thing) Just remember that you are the one who knows what's best for baby Christian. I'll be saying prayers for the treatment today. Love, Pam

Tonia said...

Shauna, you are amongst my short list of strong mama hero's! Aeryn and I make a point every night to check for new progress and when she's going to bed we say a special prayer for your entire family.

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