Sign us up for another surgery & Great Strides 2012

We had Drew's ENT appointment this morning to discuss the results of his sinus CT scan. The doctor said it was a really bad CT, meaning that his sinuses are completely blocked. He said that he can't smell, and he probably can't taste anything (which explains the lack of interest in eating). He said that he hadn't seen sinus disease this bad in a CF kid this small. That was kind of disheartening. The only option we really have is to go in there, clean him out, widen his sinuses, and start fresh. He will go on a nasal steroid after that to help alleviate much of the inflammation caused by CF, but a sinus surgery is likely in our future on a yearly or near yearly basis. The question that I keep asking is "What's the deal with sinus disease?". And the answer I keep getting is that its just a chronic sinus blockage/drainage problem. It's not like lung disease which is progressive and fatal, its just ugly and annoying. If it got really bad it could potentially change the bone structure in his face, but we aren't even in that ballpark yet. Its mostly a discomfort thing for Drew. I'm sure everyone has had sinus pressure at some time or another. Now imagine those sinuses compacted with mucus and chronically swollen. That's that we have going on. Surgery hasn't been scheduled yet, but I'm hoping we can get it done before the new baby comes (7 weeks!). We are waiting to hear from the hospital, as they will also do a bronchoscopy at the same time to get a good culture from his lungs. Its been a whole year since we've been in the OR so I'm definitely not looking forward to it, but it seems pretty straightforward and it should make a significant improvement on the way he feels, so we're going for it.

I am a little worried that I have to much hope for VX-770, the drug coming out in April that will correct the basic defect of CF in patients with a certain mutation. While we don't have the mutation that the drug was tested on, we have a mutation within the same class of mutations, and researchers are hopeful that it would affect all folks within that class similarly. It removes the clinical signs of CF. Sweat chloride is normal (read: he won't taste like salt when you lick him). The mucus in his body would be more like yours and mine, working for the good and not harboring harmful bacteria and clogging organs and sinuses and causing disease. I feel like I'm just waiting for April for our "cure", and I'm afraid I'm giving it to much hope because I don't know if it will work for us or not. The positive thing is that if it does not work, there are so many other drugs in the pipeline, and surely one of them will be able to help us. 2010 was a good year to be born with CF, if you have to be born with it at all. I guess its not bad to have such hope!

So with that all, I am ready to start my 2012 Great Strides Campaign. I've said it once and i've said it 1000 times, Cystic Fibrosis receives no federal funding because not enough people have it for the government to care. It breaks my heart and pisses me off, but the only thing I can do is to raise my own money for the research and the drugs that we need to keep Drew going. Take a moment to watch a little video about what our life with CF is like, and if you can find it in your heart or deep in your pockets to make a donation, I will be forever grateful.

To make a donation, please visit our Great Strides donation page by clicking HERE, or by clicking on the widget on the lefthand side of my blog called Great Strides. I will be forever grateful if you can help to save my sons life.

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