Tuesday, October 28, 2008

Surgery decision...

It is with a heavy heart that I write this...Sophie is not a surgical candidate at this time. I received a message on my answering machine in the 15 minutes I was gone to drop Sophie off at school this morning. I called Brandon on 3-way and then returned the phone call.

The conversation started off good. Ruth (she coordinates every aspect of the surgery and even attends the conferences) said that they all loved the video I sent...especially the part where Sophie was making the tick-tock noise for the clock flashcard. She said they all thought she was just an adorable little girl and was very impressed with her development.

Then she dropped the bad news.

She said that there were about 25 doctors that attended and they had a very long discussion regarding Sophie. They pulled the actual EEG recording and tried to pinpoint exactly where the seizures were originating. The PET scan and MRI were just not enough evidence. The bilateral seizures originating on the EEG was too overwhelming. The video I sent, which I originally thought was going to make her case stronger, had the opposite effect. They were so impressed with her development that they did not want to do anything at this time to have a negative impact on that. Since Sophie appears to show absolutely no preference on using her left or right side of the body, it is quite possible that she is using both her left and right side of the brain...so they do not want to interfere with that.

They want us to come back in six months to do more testing...another 24 hour video EEG, another FDG PET scan and a FMZ PET scan. They say it is quite possible her seizures will lateralize (meaning that the seizures will originate from only one side of the brain). I am suppose to keep them updated once a month as to Sophie's seizure status along with her development. I am also suppose to make note if I start seeing her have one-sided seizures and if she starts preferring one side of her body over the other. In the meantime, I am also going to get her a neuropsych evaluation to help determine if she does have a left or right side preference.

I had come to terms with surgery. I truly believed that this was it. That this was the end to Sophie's persistent daily seizures. That she wasn't going to wake up in the middle of the night anymore...screaming and upset because of the seizures. That we were going to see leaps and bounds in her development. That she could quite possibly be...a typical little girl. I dare dreamed of a life without numerous doctor visits, numerous tests, numerous medications, numerous seizures, numerous tears that roll down her face that is not due to typical reasons a little girl might cry. I know this is all still quite a possibility. But I also know that this might not be the path that God has laid out before her and that I must accept that...as hard as that may be. That He may have other...greater...things planned for her. But for now...my heart is broken. But I will put it back together and move on with the wonderful life that I do have. I am so thankful and grateful for the happiness in my life. Sophie is truly happy. She is a wonderful, beautiful, precious little girl who continues to amaze me.

7 comments:

Lori said...

Elaine- I am so sorry that surgery was not an option. I am thinking of you all.

Lori

Anonymous said...

Many hearts break with yours, but none so much as yours and your family's. Sophie is a beautiful, magical little girl blessed with the love of a family that can't be matched anywhere. I cry and then I smile with you Elaine. I'm certain destiny will prove kind. Patience is a difficult virtue to embrace. Your daughter is in the hands of great doctors and extraordinary family.

Sophie is in many people's prayers, as are you and Brandon.

CB

JSmith5780 said...

To put all your hopes into what you think is "the" answer and then to find out you can take that path to surgery. It's heartbreaking. I am so sorry... for you, for Sophie, for the lost dreams.

As always, I hope that another path will open up, one that won't require her to wait a year to be tested for surgery again.

Big hug to you all.

baby trevor's mommy said...

Now it's my turn to have no words...

other than I'm so sorry...

((((hugs))))))))

...danielle

labonte4 said...

Elaine,

I so sorry for you guys. We recently had a neuro consult & the neuro told us never to give up hope for surgery...many...many..patients become surgical candidates after a bit of time.

Don't give up hope! I'll continue to pray for ALL of you to get through the next 6 months.

((((HUGS))) to everyone!

Rebecca & Ava!

Jackson's Blog said...

Elaine, I am so sorry to hear the news! Surgery is a hard decision to make...and I know you and Brandon had come to terms with it and hoped this would be the "answer." I know it is even harder on you since it was tentatively on the books next month! I will pray that an "answer" comes for Sophie. It sounds like Detroit is directing you in the right direction with the neuro psych eval, more testing in the near future and having you check in each month. It doesn't mean no...not ever...it just may need more time. In the meantime, Sophie could still become seizure free! Don't lose faith...I know Miss Sophie can have the life you have dreamed. I'll be thinking of you all and praying! She is an amazing girl and you are an amazing Mom!...love, meghan

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