New Diagnosis

After well over a thousand miles on the road, too many pit stops to count and eight episodes of Mickey Mouse Clubhouse played over and over---we have returned to Minot with a new diagnosis for Natalie's seizures. It was all worth it.

What it comes down to is that Natalie has something called tonic seizures. She DOES NOT have infantile spasm seizures or continuous spikewave of sleep, as previously diagnosed.

Monday was a very long day, as I previously wrote about. It started with a short EEG, and we ended the day with a very long and productive consultation with Dr. Nickels and her resident doctor, Dr. Broomall. We are incredibly happy with Dr. Nickels -- she is fabulous and so friendly.

Natalie and Dr. Nickels, post-EEG.

Becoming an advocate for your child's health is sometimes frustrating; sometimes you explain things that are happening and the doctor acts like it's nothing big, when you know it is. I don't think we know more than any doctor, but we DO know what is happening in Natalie's life better than anyone -- so having a doctor listen to those concerns and understand where we are coming from is refreshing. This is not to say that Dr. El-Zind doesn't listen to us, but I feel like the doctors at Mayo spend more time listening to us. Oh, how important that is!

On Tuesday, we checked Natalie into the hospital affiliated with Mayo Clinic -- St. Marys. Yes, that's St. Marys without an apostrophe. It really bugged me...I don't know why they do it that way. Apparently there's more than one St. Mary. If you know me at all, you know I have issues with improper usage of apostrophes. :)

The view from Natalie's room at St. Marys. It was beautiful!

Anyway, Natalie was first scheduled for an MRI so the doctors could get a complete look at her brain. This was terribly troubling to me because she had to undergo general anesthesia with a breathing tube. I don't know why I was so worried--she was at Mayo Clinic with the best of the best! Regardless, it was terribly frightening for me to watch her go to sleep; it brought back bad memories from the NICU of begging her to stay awake. The MRI took about an hour and we spent the same amount of time with her in recovery.

Soon after, she was hooked up once again for her 24-hour EEG. Four sets of hands worked very quickly and efficiently and got the electrodes, or leads, placed on Natalie's head. I think there are about 35 leads in all. They wrapped her head up to keep them in place---which is something they didn't do at MeritCare, and the nurses spent the whole night fixing the leads. This time, they stayed secure!

All wrapped up!

Daddy spent the night with Natalie in a very uncomfortable bed. (Sorry, Daddy!)

When it was all over with, Dr. Nickels learned all she needed to know about Natalie---at least for now. Natalie has very erratic brain waves all of the time because of the injury to her brain. That was not surprising to Dr. Nickels at all. Viewing the MRI is quite difficult. You realize that she has very little of her brain left, as the pseudomonas and sepsis made her so sick, she got very little oxygen to her brain at a critical time in her development. I know that's hard to hear---it is for me at least. The fact is, though, that Natalie is a bright, happy girl despite the fact that she has so very little brain. She shows us she is happy, sad, excited, etc. She has a big personality for a little girl.

The tonic seizures are just part of her development. We can treat the seizures---and we will continue to do so. We know when she is having tonic seizures because she throws her arms up in the air and her eyes flutter. These don't last for long, so that's a very good sign.

So, once again we are changing her medication regimen. Instead of giving her medicine two times a day, she will get her seizure medication three times a day. A plan has been laid out for changing that regimen if it doesn't work. In fact, we have a plan A, B and C. Natalie will continue to see Dr. El-Zind in Fargo as we work through these plans to find the right one. If none of the plans work, we will go back to Mayo Clinic to reevalute things.

In the meantime, Natalie is getting ready for another year of school! This Thursday will be her first REAL first day of school. Last year, she joined her classmates after she turned three. We're so excited--and we'll share pictures of that day with you later.