31 October 2009

What do they know?

Liam had his 6 month check up with his neurologist yesterday. We should have gone a couple of months back but September and October were very crazy months for me due to school starting and coaching volleyball. I kept having to reschedule it and finally was able to get in yesterday. I was anxious to talk to Dr. Brain because we leave tomorrow morning for Liam's first round of HBOT (Hyperbaric Oxygen Treatments) and I was excited to get her take on things let alone the questions I had for her concerning Liam's development.
When she came in, her first question was the obvious, "How is Liam doing?"
So, I told her how he is doing.

I told her how my therapists are amazed at some of the things Liam can do, like eat, and discouraged and frustrated by what he can't do; hold his head up! I told her that Liam propels himself forward when he is sitting or when he is being held. He will get his head up and then sometimes it drops, but for the most part he jerks it forward. I talked about how uncoordinated he is with his arms and how he does not use them for effective play. How he has great range of motion and is flexible but still doesn't use his body effectively. How Liam doesn't fit the average mold of a child with CP.

I asked Dr. Brain what she thought Liam was doing.

She said he might have some dystonia and coupled with lower tone in his upper body it is causing him to do what he is doing.
So I asked her if there were any medications that he could be put on to help with all of this.
She said no.
Um, Ok.
Because I know a few people who are treating their kids with meds because they have dystonia!
I then asked her if she has seen kids like Liam before. She said she had.
I asked what they were like as they got older.
And she wouldn't answer.

She said I shouldn't dwell on the future and just see what Liam does.
Well, I'm pretty positive I already do that! It would have been nice, though, for her to give me a positive example of this situation, but no, Dr. Brain wouldn't say. If I'm supposed to focus on the present and continue to work with Liam, it would be nice to know that in the end there are examples of this all working out.
Then, I asked her the big question that I was dying to talk to her about.
I asked what she thought of HBOT.
Oh, boy.
"HBOT is just a big load of phooey."
"They think preemies receive their injuries from so much oxygen in the NICU so why would you put them through HBOT?"
"It's so expensive."
"There are no studies showing it even works."
"You sit in a small chamber for up to hours at a time and it's so boring."
Those were her responses!
I couldn't believe it.
I just sat there, stunned and quiet, and absorbed what she said. All the while thinking that Dr. Brain had no idea about what she was talking about. That I just wasted my time and money.

First of all, preemies have injuries from the oxygen? How did she come to that conclusion? I'm pretty sure the injuries come from lack of oxygen! And although Liam was never without oxygen from the moment of his birth, he had a wide open PDA that allowed too much blood to flow to his lungs and shunted it from the rest of his body, including his brain. His brain did not receive enough blood flow. It wasn't a lack of oxygen that caused his injuries.

Second, there are numerous studies! My nutritionist just sent me a study done on mice showing HOW HBOT works. It showed that the high levels of oxygen and higher pressure allow stem cells to migrate to the injured areas and heal them. There are studies showing rate of increase in development following HBOT. No, HBOT isn't a cure. There isn't one. But the studies show that it helps!
Third, it's boring? Oh ok. I better not try a treatment for my son because I might get bored. I wouldn't want to do that! Sheeez. I would do the most boring thing you could imagine for years on end if it would help my son!
Fourth, it is expensive. But, Miracle Mountain helps make it affordable and they give you the ability to do fund raising. But most important about all of this is that if you have heard of a treatment that might help your child, I don't care what it costs, you will try everything in your ability to make it happen. And that is why Miracle Mountain operates at cost. So everyone child with CP has the opportunity to receive HBOT!

Shawn and I closed the door to HBOT because we didn't think we could do it. We didn't think it was an option for us. But I saw God open all the doors to making this a reality for us. And I was sorely disappointed to hear what Dr. Brain had to say. I didn't even bother to tell her that we leave tomorrow. I didn't care what she had to say at that point. It didn't even matter anymore.
Her final words as we left were, "We don't need to see you back for another year."
A year?

I pray Liam comes into that room next year and blows her away.

And that would be the ONLY reason I would step foot in her office again.

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