Friday, February 25, 2011

State of the Hacketts

We feel a little more together after today. Having a plan always helps with that.
We've moved from, 'We don't even know what's up with your kid's brain' to 'We will do A,B and C to find out what's up with your kid's brain.'

The eye exam went well. No evidence of ICP (inter cranial pressure) to the point that it is affecting his vision or the optic nerve. This time they used a sticky patch to cover each eye and he did great! Stephen and I were amazed he didn't fight it.

We got to talk to Dr. Abraham this afternoon. Since the eye exam didn't show any immediate issues, we're going to work on finding out what those swollen veins in his head are doing. His tumor is very vascular so there have always been a lot of veins back in that area. They're just more exaggerated for some reason. They don't know if the vein issue is related to the shrunken ventricles.

Monday he will get an ultrasound done of his neck and chest. The results of this test should show
if there is some type of venous blockage. Josiah hasn't shown any symptoms of this, but they have to rule it out before moving to the next thing.

So there are two issues in his brain that cannot be explained at the moment. BUT none of this is related to the tumor! The tumor is stable and that is helping to keep us fairly calm. Brain surgery is, well, brain surgery. That is much more 'possible' in my mind than going back on treatment is. I feel like we've just settled into living outside hospital mode, and this week was a quick jerk back to eight months ago (sans being hugely pregnant).

Other news: Allison has been running a fever since Thursday morning. She got her turn at the doctor's office this afternoon and is now on antibiotics for an ear infection on top of her little sinus infection. She's just too sweet not to kiss on so now I've got a sinus infections as well. Stephen is spending extra time with us which Josiah is loving. So glad we're a local St. Jude family so I don't have to be at appointments like this by myself. Another reason to <3>

I have a lot of other things rolling around in my head, but along with it is a lot of lovely drainage. Thus, I will wait til my thoughts are more collectable to write more. Sorry for the typos and half-written sentences.

We're thankful for our many doctors we've seen this week-- thankful that they are in just as much hurry to figure this out as we are (close to it, anyway). Selfishly pray for them to study Josiah's case diligently and to arrive at some sort of conclusion.

Thank you, God, for another 3+ months with no tumor growth. (!)

Isaiah we've been thinking about you and praying for your MRI results today. Hope you sleep well tonight!

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