Thursday, December 24, 2009

Thank you Santa!

We got what we consider an early Christmas present yesterday during our neurology appt...let me start from the beginning though.

Whatever Olivia is dealing with in her body can, according to the neurologist and other specialists he conferenced with last week, only be one of two things. The first is a disease. This means it is foreign to her make-up genetically and the cause of her loss of skills could be attributed to the fact that the disease is progressing. Usually this is a bad prognosis, as you could probably imagine. Secondly, it could be the way she is made up, probably meaning there is a hiccup somewhere in her genetic material (though they have already done a in-depth study on this) and the loss of skills is attributed to the increased seizure activity of the past few months. I would imagine (though I did not ask directly) that if this were so then the ground she lost would be recoverable by stopping the seizures and continuing therapy as before. This prognosis is not bad. Our neurologist thinks, though he cannot prove it, that the possibility that these problems Livi has is a disease is 10% and the possibility of them being a direct result of seizure activity is 90%.

The weight of that is incredible. For example, if we are talking about possibility number 1 (disease) and it is progressing, they usually don't stop, which would mean that she would probably die from whatever disease they attributed it to. If this were the case, then they would also question the ethics of the heart surgery because at that point, is it the most effective treatment if you are just treating for comfort?
Possibility number 2 still says something is wrong (syndrome) but that is a part of her make-up and with curative treatments or therapy she could learn to live, at least on some level, with the syndrome.

So, could he be wrong? Sure, but he doesn't think he is. Does this mean everything will be ok? No, of course not. But it also probably will not be as bad as if she had a progressing disease eating her body. Do we still need to find out what it is? Yes.

So the plan of action is to double one of her seizure meds to see if we can get control of those by her surgery date (Jan 7) so we don't have to push that back since she is not currently ill and we have made plans around the date. Could we push it back? Sure. As long as we get it in within 6 mo. but we would rather do it now if its in her best interest.

Does this make sense to everyone? Sorry to be so full of confusing material. If you have questions either call me or post them.

I am also beginning to consider (with the encouragement of several people) the possibility of getting a home nurse for a few hours a week to rest, sleep, clean, etc... I imagine to some people this seems frivolous as it did to me for the previous months. Isn't that just a glorified babysitter? But Olivia needs constant attention and supervision, even asleep, and this makes normal household chores difficult for me to finish during the day. It is a big step for me to accept this kind of help as I used to feel it challenged my ability to care for my daughter, but friends have questioned my motives (pride) and allowed me to consider the benefits for my life with this help. We shall see...

Looks as if we will be snowed in for Christmas. Shucks. :) We, of course, will be posting pictures of Livi's first Christmas. One more milestone. Thanks be to God!


  1. What a blessing to receive an update on Christmas Eve. We are prayerful that the doctors treating Livi continue to discover, question, and move forward with treatment.
    We are thankful that you are open to help. It certainly isn't a sign of weakness but a realization of the many tasks you have to accomplish in a day that most of us don't. Merry Christmas to you all. We think of you daily.
    Dean & Nancy

  2. Loving you all this Christmas! Have a wonderful day and enjoy everything about your white Christmas! Much love, Courtney

  3. Kelly -- hope you had a wonderful Christmas day. You are doing a service for Olivia and for yourself by getting some respite. Go for it. Love, Jane