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Tuesday, August 11, 2009

Best Sound Ever.

Where did this day go? All of the sudden we are ready to go to bed. Well, Christian is already in bed. Figures...the little boy had a restless night last night. And when Christian's not happy...ain't nobody happy. He woke up in the middle of the night and threw up and then had a higher than normal heart rate. I think his tummy just hurt because he calmed down with a dose of Tylenol. But I hardly got any sleep and he hardly got any sleep so today, we were both zombies.


Christian had over an hour straight of physical therapy. He was so relaxed. They had him laying on his tummy with his arms stretched over his head. And tomorrow....the day has come! Christian is going swimming!!! I will be attending this event with my camera in tow. I hope it awakens some of those little senses. We'll see how it goes.


Christian also had his PMV on for 8 hours today. He did really well with it except that he threw up while doing hyperbarics. Two weeks ago I would have freaked out about this but now it's a daily routine occurrence. And the people at HBOT were pretty cool about it, too. The whole throw up incidence was unrelated to his PMV, though. After he got out of the chamber, he was all alert and looking around. And I heard it...his voice! Not a squeal, his voice. It was a low sigh but it was his voice and it was the best sound ever.


He is resting from the PMV right now. It's hard work for him! But the RT's say he's doing great with it! And they were even surprised he went 8 hours with it on only his 2nd day because some babies can't even tolerate it for 2 minutes. Well, I had to explain that Christian is just an overachiever and they better get used to it because he's a superstar. No, I didn't say that, but I often feel like saying it.

I do have to say that taking Christian to HBOT is starting to feel like taking Christian to family. The manager is...intense, but she knows her stuff. Listening to her talk about hyperbarics, her charity, and other public functions she's been apart of is fascinating.

I also keep getting questions about Christian's brain and whether we've received an MRI. We did while we were in the PICU and it showed global damage, grey matter and the like. But his EEG showed close to brain death the night he was brought into the PICU and 12 hours later he had activity. Things change. But I'm not really interested in what an MRI has to say. It will say one of three things...1) Brain has improved. 2) Brain is still damaged. 3) Somewhere in between choices 1 and 2, mostly likely still closer to choice 2.

It's weird but I'd rather not know. I can see what Christian is doing, and what he's capable of with my own eyes. We don't need another MRI to tell us his brain is injured. We know this. And I'd rather see what Christian is capable of rather than try to guess at what the future holds from an MRI.

Another specialist will be visiting Christian soon and that will be someone to test his vision. I believe Christian can see and can focus but his little brain is trying to make sense out of what he sees. So I think he has the ability to see but has trouble making sense out of what he's seeing, which may cause his vision to be impaired for a while. It's just a guess so we'll see if I'm right.

And the feeding issue...don't even get me started.

So everyone remember to kiss your babies tonight. If they wake up in the middle of the night crying out for you, please say a prayer thanking God for their little cry, and another prayer for Christian, too.

11 comments:

Kyles said...

You will hear Christians in no time at all, that I am sure of!
Every day I read your blog, and every day I am amazed, thrilled, and so proud of how Christian is going... :))
I hope he has a blast swimming tomorrow and I can't wait to see the pics!
Way to go Christian!!
Shauna, your strenghth is truly inspirational, they say God only gives you what you can handle and He gave you this because He knows that you are the best mum for it!

The Crabtree Family said...

We can't wait to hear how the water therapy goes. And you are absolutely right, Christian is a SUPERSTAR!!!! We pray for him every night. GO CHRISTIAN!

manuel said...

I pray every night and know we will be woken up in the middle of the night with his crying soon. Then we wil both have tears of joy. Hang in there Honey.

Jackie Veuleman said...

Shauna,
I'm Nat's friend from MI. I gave her a website for you to check out that I think you'll really like. I'll give it to you here as well hugs4ndc.com They seem to be a great foundation and have links to other helpful sites. They are out of CA but I'm sure you can find something useful in it. Take care and I'm so happy Christian is such a little fighter!

Eliisa said...

Hooray for hearing his voice! That gave me chills. Your last paragraph, too, really puts it in perspective. Sebastian is teething and has been a MAJOR crankypants lately, but I find I have more patience for him if I think of you and Christian, and how lucky I am that he can whine and throw fits and demand constant attention from me. Christian will get back there, too...I just know it. LOVE to you both!

pajrnjam said...

You don't know me, I saw a prayer request on Fertility Friend website. I just want you to know that I have been praying for your family and especially your little boy. I am an RN and am amazed how quickly Christian is progressing. I check your blog everyday and am thrilled for you with all his and your hard work. Your are doing an amazing job, being an awesome advocate for your son. Many, many prayers coming your way.

Alicia said...

Not sure how I came across your blog (I think someone posted about it on tracheostomy.com) but you and Christian are a real inspiration.

My little girl Marissa (who is almost 2 1/2) has had a trach since she was two months old. I remember the hardest thing for me to accept about the trach was not being able to hear her voice. We were so thrilled that she started tolerating the PMV when she was about 9 months old. She got better at it over time and is now saying actual words! I have had people ask me (joking, I think) if I am ever tempted to just take her cap/PMV off when she is being loud or throwing a temper tantrum and I always say "No way! Her voice, whether laughing or crying or screaming, is the greatest gift ever! Just because my kid comes with a mute button doesn't mean it is right to use it!"

Anyway, I check on you and Christian all the time and I am so pleased to see the progress he is making.

God bless you!

Jendioguardi said...

We are always thinking about you guys and praying for Chrisitan. His story has completely changed my life and the ways that I view the world. I used to stress out over the small things...but now I've learned to appreciate them and with your insiration, I've striving to be a better mother. Shauna, you are amazing!!

Yay for Christian's sigh! What a beautiful sound that must have been. He's doing so well and I'm so proud of all of his accomplishments!! Keep it up lil' man!! HUGS!

maz said...

What an over-achiever....and hurrah for hearing his voice! Good Luck for tomorrow's water session - be thinking of you! Hope you and big C get a good night's rest tonight....(((Shauna)))

Tracy said...

I knew it! While praying last night for Christian, I knew in my heart that he would be making sounds very soon. I have so many people praying for Christian. God has lots in store for him.

hugs,
Tracy

sunflourchic said...

What great news Shauna! Love you heard his voice, i bet it sounded like music. Good luck at tomorrow's water session, will be thinking of you.

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