God is Good!

God is great
God is good
Let us thank him
for our food.
Amen.

This is a prayer I learned when I was little and every time I think, "God is good!" this prayer pops into my head.

In all seriousness GOD IS GOOD! I have to raise a chunk of money and fast to get Christian started back on hard chamber hyperbaric treatments. This is what he was doing in Phoenix and I've found a great place in Tucson where I want to get him started again. We do have the soft chamber but it's not as strong as what he needs, just using it alone. I want Christian to get the hard chamber treatments and the soft chamber at home so he'll get the maximum benefits. Then he can also use the soft chamber in between sessions, as well. But...you need money to this because insurance no likey the alternative medicine. Not yet.

Anyway, we can do fundraisers and we will do fundraisers, probably a whole mess of them. But in order to get Christian to start as soon as possible I'm trying to come up with a plan. Well yesterday after Christian threw up three times in a row (more on that later) I was almost at my breaking point. I got a letter in the mail for an organization called The Prayer Child Foundation. I remembered I had applied to this organization last month. They choose a child or a few children a month to donate funds to for medical expenses. I started to open the letter thinking it was a "Thanks for your story, but..." letter and it was a check for $1000! Praise God!!! Now with the money we've already saved up, a few other donations and this check, we are over half way there...and in just a week! This just goes to prove that where there is a will there is a way. So cliche, but so true!

I take this as a sign that we're doing the right thing. I've struggled with this a lot because at times I just want to try everything out there. But what I struggle with is whether I'm getting in God's way. If He has a plan for Christian, am I'm getting in there and trying to control the situation? Or am I really trusting God and what He has in store for Christian. At times I'm almost excited (weird?) to see what God has planned for Christian because I KNOW it has to be something big. But other times I feel like I'm raising against a clock to find treatments for Christian as soon as possible. But in the end will it matter? With or without the treatments will it still be the same progress because God is in control? How will we ever know?

So I've come to the conclusion (and I'll probably have to remind myself of this over and over again) that if God brings us the opportunity, we have to take it. If it's right, it will happen with very little effort. If it's not right, we'll know it because it just won't fit. When I got the donation in the mail, I figured that was my nod that we're doing the right thing for Christian.

As for the throwing up, the vomit, the spewage. I'm so over vomit! Christian was doing so well when we left Phoenix and now he's throwing up after or even during every feed. At this point I'm having to plan appointments around when I think Christian will have his routine hurl. He doesn't seem bothered by it or effected. He goes on about being Christian. But my head is swimming thinking what possibly could be the culprit. I don't want to take this up with a physician because they will immediately suggest a fundoplication without even seeing him, which I don't even want to entertain because if they were going to do it they should have done it with the initial g-tube surgery. And that's all he needs is another surgery. I'm not even convinced it's acid reflux! So, no, I'm not entertaining that option right now.

There a forum that's supposed to be really good for these issues and I've been dying to get on it (Parent 2 Parent) but the link is down or my internet doesn't like it so that's a dead end. We could change formulas I guess, but now I feel like we're just shooting in the dark. It is just so frustrating.

And I've decided I hate our home health care equipment company. And I'll name names - it's called Preferred Home Health Care. I'll spare you the boring details, but long story short, they're holding up our ability to downsize Christian's trach. They need a prescription. Fine, I had the pulmonologist send one over. Meanwhile, we're almost completely out of suction catheters of which I ordered before we were out but the genius put the order in for one catheter instead of one box (100 catheters). I called and asked for more and the snotty lady said we're only authorized 100 a month. I said, "Well, my son doesn't need that much suctioning anyway but what about the kids who need suctioning like 20 times a day."

"Well, that's too much. Anyone suctioned over 3 times a day is too much. It will cause damage." - Snotty Lady.

Okay, lady, I didn't realize I called a Respiratory Therapist. I thought I was calling for supplies. My bad. Didn't know you doubled as an RT. Do the RN's at the hospital know this because they sure don't follow the 3 times a day rule. Oh yeah, and I found out they called the Pulm office to see WHY we needed smaller trachs. Umm, aren't you a supply company?! My insurance is paying so send the damn supplies!!! What does it matter why we're doing it? Now I'm being snotty. There's that lack of patience thing again. So now we wait. Didn't I say I would spare you the boring details? Sorry, I don't know what happened to that.

Positives...Christian seems to be gaining strength somewhere and I can't tell if it's his back, neck, or shoulders. He's not slumping over in his carseat anymore. We used to position the heck out of him with props and rolled up towels and I'd have him perfectly seated, look back 10 minutes later, and his head had fallen forward and there was no fixing it. That hasn't happened in about a week. He's actually been "holding" himself in a seated position without slumping forward. His little hands are opening, too! First the right and now the left. And we just got him fitted for hand braces, which he promptly threw up on. Nice. I don't know if it's intentional, but let's just say it is, he's been batting at things or almost trying to feel things. And his focus...that's been the biggest improvement, I think. He really locks down on things and has started to follow with his eyes more. It's not just a stare, it's really turning into active looking. But his curve...he curves to the right. We need to get rid of that and it will happen as his tone decreases. Curve, curve go away!

Anyway, I'm exhausted and spent from this day filled with vomit. I bet you're glad you came to visit this blog today. At least it's only Vanilla flavored formula vomit and not real food vomit. Then I'd be in tears.

Off to unwind and watch me some Dancing With the Stars.