Sunday, April 16, 2006


I wasn't ready to talk about this last week...but many of you have asked and so I thought I should provide an update.

The "nodding" that I noticed last week did in fact concern my PCP. As soon as he witnessed one of the episodes, he immediately said we needed to get neurology involved and have an EEG on Maxwell.

This is probably the only test Max has not yet required...and trust me, he has had a zillion! This is one that I was hoping he would never require because that would mean there are no neurological concerns. But I am quickly learning in CHARGEland that just about anything and everything can be "quirky" with our kiddos. It is a very, very, very, very (did I mention VERY???) challenging genetic disorder. Every day I learn more and more about what can go is quite intense and scary. Once he overcomes the medical issues, he faces many developmental and behavioral issues. It just doesn't seem "fair" that one disorder can impact nearly every component of one's body and mind.

I am doing my best to focus on the here and now and applaud and celebrate Max's achievements each day. However, it is difficult at times to look into the future. Fortunately, Max's smile has the magical power of melting away worries...and he seems to know just when to use that power! :)

So anyway, Max has an EEG scheduled for this Tuesday, and then I will meet with the neurologist to discuss the results and treatment. This could be seizures, tics, or just another random "quirk" of CHARGE. It certainly is worrisome, but I am trying to keep my cool until the results are in.


elle said...

hope theres a good outcome or an outcome at least and update us in chargellan d on the results scoz i know the all would love to know:)

Drew said...

I'll be thinking and sending positive thoughts about the tests your way. Let us know what the results are.

I think whenever you are feeling down about things, you could probably just look at that pic of Max in the bunny ears to feel better. I'm pretty sure that would (will) help me!! ;-)

Steph said...

Thinking of you both, Amy and Max. Sorry that the test is necessary...hoping and praying that the best possible outcome comes from it. Please let us know as soon as you can.

Love you,

Kirstin said...

I know this is hard for you and wish this test wasn't necessary. I will be thinking about you and will keep postive thoughts about you both going...Love you both...Let me know when you know...