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Sunday, September 27, 2009

Progress? Yes, progress.

We went to church today. But it wasn't without frustration. Christian threw up 3 times in the morning and I thought for sure it was out of his system. Nope. He was all dressed for church, ten minutes down the street and he and his carseat are covered in vomit. Ugh! We had such a good 2 days before today. I think I literally yelled out, "When is this going to stop?!" But reading up on feeding tube message boards, it seems that some people have it about 5 times worse than I do. So I'll try to count my blessings and figure out a way to stop this vomiting.

Anyway, we pulled into the parking lot of a Chinese restaurant and the reason I'm even mentioning it was because it smelled so good! I changed Christian, cleaned up what I could, and headed off to church. This isn't a church I normally go to, but I went looking for some kind of inspiration. It's actually the first time I'd been to church since Christian's accident, besides the hospital chapel. I didn't feel like I was quite ready because if the message hits a nerve I don't want to cry in front of an entire congregation of people. But, no worries. This wasn't an inspirational message today, it was actually kind of a disappointing service. Ah well...there's always next Sunday.

I'm developing my fundraising letter and I was going over all of Christian's progresses he's made. Honestly, it's been harder to track since other things - like day to day occurrences - take some of my attention. And then when you have the vomiting issue that's been overwhelming everything else, it's difficult to pull out the positives. But as I sat down to write about his progress, he really has had some progress! For example, his right hand is almost completely open. He even "feels." This means that when he's stimulated by something soft under his hand or something with texture, he will open his hand and go for it again. His arms can get completely straight voluntarily as he moves them around, whereas before they were bent. I've also noticed his feet have been flexing more instead of pointing downward. And, to our pleasure, Christian is becoming more vocal. It's mostly whining and crying but that's fine by me. He's even started to get more consistent with his cries. He will start to whine and cry if he needs to take a nap or is growing tired. He almost always cries when he's picked up and moved. So there has been progress, I'm happy to report.

Capping trials have commenced...again. The home health care company finally got with it and sent the trach tubes and catheters we needed to REALLY get started. I capped Christian for a few bouts of 15 minutes at a time and one time for 30 minutes. It's all positional right now. Meaning, he tends to freak out while capped if he's on his back or lying down in any way, shape, or form. The capping is most tolerated when he's sitting straight up and even leaning forward. I know he'll get there. It's just weird for him right now, using airway functions he's normally not used to using. If you remember, the valve he uses allows air in through the trach but not out. So he's breathing in air through his natural airway for the first time in 2 months!

Something else I want to mention is an online auction happening right now for a very good cause. If you remember Cici, her link is on my sidebar, she also has the same brain injury as Christian does. There is an online auction to help benefit Cici and the medical treatments she'll need for her recovery. You can bid on really cool items by visiting Happy bidding!


Kathy said...

OKay I know you don't know me. I've been following your blog since the beginning because I am friends with one of your birth month group moms. I have been dreaming about your Christian which is what leads me to leave a comment. I have been praying for your little fighter and initially thought it was just because I was thinking about him that I was dreaming about him. And then I talked to my partner about it and she felt that I needed to share the concern in my dream. Is Christian facing forward in his carseat? I know that he's old enough and heavy enough to face forward but does he have the headcontrol? That's the biggest reason children are injured in accidents...that they are facing forward without enough head control (even though they are heavy enough and old enough). I just wanted to ask (not because I think you're doing something wrong! You are an amazing mom that is providing a beacon of light and strength for other moms around the world). We will continue to pray for your family and for Christian.

maz said...

You've such a lot going on. Sometimes you have to really think to see the wood for the trees with regard to progress. But sounds like tremendous progress...still coming along nicely, still battling away, little man! Sorry about the vomiting though...must be terribly draining and upsetting, on top of everything else. Praying and sending lots of calming, non-chucky vibes to Christian's tummy...

Brooke said...

The capping trials will get better every time you do them.....Poor little guy sounds like it's definitely some work for him but he is a true little fighter and he still proves that every day with his improvements in therapy!!

Glad you made it to church. It's something I haven't done but one time since Christian has been born......I think about it all the time but just haven't gone......There is NO excuse I know......GOOD FOR YOU for taking your family and going!! Vomit or no vomit!! You're just so awesome and your friends and family are so blessed to have you in their lives Shauna!!! XOXOXOX

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