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Monday, August 10, 2009

The PMV Stays!

Christian tried the PMV and he did great! I believed he'd do just fine, but I said a little prayer after they popped that thing on and he took it away! The RT was so excited because he said this was his favorite part of the job. He also said they had ordered some PMV's for 4 other patients and Christian's the first one to tolerate it. He went for 5 minutes...then 10 minutes...then 15...and did so well we left it on him for the rest of the night. I'm giving him a break, though, while he sleeps so he can rest. It is obviously hard work just by looking at him. It allows air in but not out, so he's constantly wanting to push. But I've heard some good strong coughs!

Another thing I heard was a light squeal. This is so exciting to me even if it's not technically hearing his "voice," it's the closest thing to it that I've heard for a month. And this is my latest struggle - responsiveness. It's difficult. That's what all the professionals want to know - does he respond? I don't know. I feel he responds when I'm talking to him but he doesn't turn his head toward me when I talk to him on his left side (he favors his right side and will turn to the right all the time). If other people are holding him and he hears me he seems like he responds. But I don't know if this is all in my head and I want to BELIEVE that or if he is actually doing it. That's as close as I get to responsiveness right now. I mean I look for responsiveness when I change his positions. I know how he's comfortable and he responds accordingly. He responds to my calming him. And I know how to make him happy.

He squealed. Do you know what that was like for me? I think I almost cried. I miss his voice. I miss him yelling and babbling and crying. The closest I get to his voice are long sighs and that squeal. And right now I'll take it because otherwise it's just silence. I'm really praying that one day, and one day soon, I'm going to hear that loud, boisterous voice again. I'd settle for a soft, little whisper at this point.

All of this longing for responsiveness has overshadowed how exciting the PMV trial was. It really is a big deal. The RT said it's a step toward having the trach removed and that if the doctors see this, they'll look toward removing the trach. This is all wonderful news. And I know that Christian's body is just learning how to work with his brain again. For example, as you've all seen and heard about, he's always trying to get his fist in his mouth. Well, he brings his fist to his mouth and makes sucking motions, but he doesn't know quite how to open his mouth wide enough to get his fist in. He's still trying to connect those dots. I suppose all this connecting takes so much effort, the emotionally responsive part of his brain isn't ready to emerge yet.

I know someday his brain will be ready. I still miss him, nonetheless. Everything in due time. Breathing and moving first, smiles, laughter, and crying will follow. All in God's time.

Praying for patience tonight.


kyliesgamma said...

I have recently found your blog about your precious baby boy, Christian.
We have met before as we are your neighbors that live directly across from your Aunt Wendy & Uncle Alex.
We have been praying for Christian and your family and want you to know we are here
in any capacity to help you, Manny, Gabe and Christian.
God does have His hand on baby Christian and will do "amazing" things for
We are here for you -

Alice & Bob Koob

Eliisa said...

HOORAY for Christian tolerating the PMV! I knew he could do it!

gavman306 said...

Way to go Christian!! What a strong little boy you are!! Praying so hard for all of you!
God Bless!

Rochelle said...

Great news this morning! I'm glad things went well with the PMV. We'll keep praying for responsiveness! Keep up the good work, Christian! :)

ferfischer said...

Great news about the baby steps to remove the trach. I can see he's on his way to losing it! And, I'm so happy for him exploring his "voice" again. Responsiveness is a tricky thing - I hate answering that question too. Sometimes it's hard to tell, and I never really know for sure, but it's ok to BELIEVE that he's responding to you. He probably is, he just doesn't know how to show it. It gets better! Hang in there!

maz said...

Yea, for Christian and his new PMV! Good job little man, tolerating it so well! So proud of you!

Still praying and sending lots of positive thoughts to Christian's wee brain to make those connections for responsiveness. Can't imagine how hard it must be waiting for it to happen...keep the strength, Shauna! If anyone can do it, Christian can - he's come so far and exceeded all the expectations of all those naysayer Dr's. Thinking of you, strong mummy...

Marilyn said...

Yay for squealing! What an amazing little man you have....

lisas said...

yeah christian!!!!
i'm so happy that you are finding your voice.
shauna you're such a great advocate for your little guy. i'm very proud of you both.
love, lisa

Mel said...

Way to go Christian! You continue to be an inspiration to me. Look at all you can do. It is amazing. And Shauna...what a gift for you. I know you must miss his voice terribly. I am so happy you got to hear even a little bit of it today. You deserve it momma!

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