Monday, February 09, 2009

What to do....

It's that time again. Time to think about whether we want to make another trip to repeat another round of testing with Dr. Chugani in Detroit. I hate thinking about it. But I have to. Especially since I haven't been thinking about things at all lately. I took a little hiatus from thinking. From our reality. Only problem is...Sophie's seizures haven't. They did once. For a month. But that was over a year ago.

So I e-mailed Dr. Chugani at 10:44am this morning...

...and he responded at 11:58am today.

Wow! Talk about a quick response.

He believes we should come up to repeat testing. The only problem is...I don't know if I really want to put Sophie through all that again. I have to believe that there is a chance that things have changed and she might be a surgical candidate. But I don't know if I believe that. Not even a tiny bit. But what else do I do? I am out of ideas. Sophie's local neuro is out of ideas. Dr. Chugani is out of ideas (as to trying another treatment option besides surgery). She still remains med free except for the neurontin at night. Her seizures still remain around 40 a day. Her development seems to have slowed.

I am so torn.


JSmith5780 said...

What about the new meds on the market?? Rufinamide, Banzel... I think there is another. There are new meds coming to market every year. I don't know Sophie's whole history but I am assuming the VNS has been discussed? How about modified atkins?

I wish there was more I could offer.

Jen mom to Austin

baby trevor's mommy said...

I'm sorry sweetie. Thinking sucks. But we have to.

I always hate when people say I'll do the right thing. I don't want them to believe in me. I want them to tell me what to do! *smile* The trouble is...they can't.

Neither can you.

I can only tell you that I'm praying alongside you. And that I really do believe that God has given us our children for a specific reason. You're supposed to be Sophie's mommy. You're supposed to be thinking about this. And you will do the right thing! Because the right thing is loving your girl to pieces!



Heather said...

Sometimes, I think the only way I can make a difficult decision is to say,will I have regrets?Will I be able to say,in the end,I did everything within my power?Everything?Try,as hard as you can,to not second guess yourself,once you make that decision.Trust in God to give you the peace and the clarity that you need to make the best decision for Sophie.In the end,you always do Elaine,this will be no different.

Lori said...

I am so sorry you have such a hard decision to make. We'll be thinking of Sophie. I hope you are feeling healthy. Thanks for the birthday comment for Nora! Good luck.