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Sunday, August 16, 2009

More of my Superman

I'm coming off of a wonderful weekend with Manny and Gabe. They stayed all weekend and we had a lot of family time. Manny brought enchiladas for Friday night (Yum). On Saturday, two of my girlies came up to visit us and they brought more enchiladas (Yum x 2), fruit and candy. It was so nice to see them and I can't wait to go back home! We used to meet weekly, my girlfriends and I, sometimes a few times a week, and gossip, drink coffee, eat, b.s....I miss it.

We also went out to eat on Saturday night - Manny, Gabe, and I. It was nice going out to eat as a family, although we were missing Christian who had to stay behind. Before, we would always bring Christian and end up with a mountain of food underneath the highchair he was sitting in. He was loud and would scream at anyone who passed by, but it was a happy scream. More like a greeting. I can't wait until we can eat as a family again - all four (soon to be five) of us.

On Friday I took Christian to hyperbarics all by myself with no assistance. No RT and no driver. I felt really independent and Christian seemed to tolerate the trip while sitting in his big boy car seat. He promptly threw up while in that new big boy car seat, but we're used to it so it's not a big deal for either one of us anymore.

I have to mention that I've noticed a bit of a change in Christian over the last few days. He seems like he's more present lately. He seems a lot more energetic and he's been moving around a lot more with his arms to the point of knocking his pacifier out of his mouth and practically punching himself in the face. His whole goal, especially after a nap, is to get his fist to his mouth, and if he has to sacrifice his pacifier, his cheek, and now his trach (yikes!), he's willing to go the distance. It seems to lessen when he's at least got his pacifier in his mouth because then he's sucking on something. He's doing great with the PMV, in fact, he was coughing up a storm tonight. Not in an excessive way, but in a normal cough sounding way. Like he knew how to take care of business and then he was going to get on with life.

Christian also favors his right side so he tends to want to always look to the right or turn to the right. Well, he's started comfortably looking to the left. When I say comfortably I mean I don't have to aim his face to the left to get him to look there.

I've also been working with his head stability. A lot of it is for purposes of muscle memory and it's constant pulling his head up, letting it drop (gently), pulling it up again, and so on and so forth. I had him on my tummy doing this exercise and I actually got a few seconds of stability. You can see that he's trying, he's working, he's like the little engine that could. I tried to take a picture of him holding his head up (kind of) but, like I said, it was only a few seconds and the picture I snapped ended up being the wall and the back of his head. Exciting stuff.

On Tuesday I have Christian's "Care Plan Meeting" with the facility. What does this entail? No clue, but I'm hoping to get some answers. The first answer I'd like to have is who is holding us here? I don't mind being here. Christian is getting some good therapy and I'm learning a lot and I'm at peace with staying the 30-45 days I was told. But I've heard rumblings about having to stay longer because the insurance process is backed up. Excuse me? I won't go into the details quite yet, especially because I'm hoping to fill in the info gaps on Tuesday, but some people have had to stay months. Months?!?! As in plural? What do I need to do for that not to happen?

The reason I need to know who or what is holding us here is because I spoke with the long term insurance company - the one they told me that to qualify for coverage we had to come here - and they said they have no such requirement. Great. So who's requiring this? I just want to know who and I want to know why. Not all kids with trachs come here. If so, this place would be packed and it's not. It just doesn't make sense.

I am by no means trying to leave tomorrow, although if they said I could, I'd be tempted. There are things that are on order for Christian, things that need to be lined up, HBOT, etc. But I'd like to get to the bottom of things so that come the end of our stay, we can leave with no issues.

And when we get home we will be having the biggest, baddest, welcome home Superman birthday party we have ever thrown!

We have decided that the theme will be Superman (hence, the mention above). It is the most appropriate character we can think of that fits our little Christian.

He is our Superman. God has given him some super powers to live up to that name, but I know He's not done with those super powers yet.


gavman306 said...

Your Superman is on his way!! Great to hear you had an awesome weekend with ALL your boys!!

Eliisa said...

Yay for Christian! You keep fighting for him and he'll keep impressing you. Definitely don't let them keep you there any longer than absolutely necessary! Christian needs to be home with his family, and so do you! You are an amazing mom, and I'm SO proud of you.

Lisa said...

All I can say is WOW!! I came across your blog from another blog (gwendolyn strong) and I wanted to let you know that you are Amazing! Your strength, determination and faith are leading your little Christian back to himself! You are the true spirit of what being a mother means. I will pray for you daily knowing that God will provide you, Manny, Gabe and Christian with the strength you all need. I truly believe that Christian will be laughing and running around in his future, he is a miracle!
God bless and I look forward to following you and Christian!
Be well,
Lisa :)

sunflourchic said...

hey shauna, so glad you had a great weekend. i've been MIA for the weekend so i was looking forward to catching up on christian when i got back. everything sound GREAT. can't wait for him to have his superman party!

maz said...

Sounds like you had a good weekend with the whole fam together and your friends too. Sounds like a delicious slice of 'normality' for you. Hope that you can sort out the insurance/staying issue and get home really quick. I *loved* his Superman pics too....absolutely perfect! A Superman party sounds like a blast too! I'm sooo thrilled too that he's been more 'there'. He's just doing so well...little star! ((((Shauna))))) and big XXX for Christian...

Brooke said...

I wish all his Internet Aunties would be able to be there for his bash!! And all his August buddies!!! We'll all be there in spirit! Good luck with the meeting- you make sure you get your questions answered!! You have one strong boy and you are one awesome mommy!! XOXO

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