I can never fully relax with this kid....never.

I don't have a bunch of time but wanted to update real quick.

Monday Makily had an EEG w/Neuro. She's had one every six months since the seizure.

The last visit with the Neuro he explained that she was on a very low dose of meds, had good EEG's and CT's since the seizure and he wanted one more good EEG. As long as that was okay he suggested we start weaning the meds.

Well it wasn't okay.

sigh

I had a message from the doctor himself on my phone yesterday.

I knew it couldn't be good because all her other EEG's I just got a thing in the mail saying "normal EEG".

I called back today and spoke to the doctor. He said that Makily's EEG was abnormal. They didn't see a seizure but her brain is mis-firing. He asked if we had noticed a difference in Makily lately and I said she has been sleepier. He said those mis-fires could cause seizures..possibly (and I have questioned if she had these type in the past) absence seizures...which could in turn cause the excessive sleepiness.

sigh

He upped her medication and is working with the insurance company now to set up a 24 hour video EEG. He said he wants to catch the mis-fires and see if they also see a seizure. She'll need to be in the hospital for 48 hours but hooked up to the EEG for 24 (that is going to be a load of fun by the way).

When we hung up, I cried. I have told myself time and time again to not get too relaxed about ANYTHING when it comes to Doodles but I guess when things are good for so long....I trick myself into believing that Makily is just fine.

Harsh reality is that she will never be "just fine".

I hate HATE the extra chromosome she has.

One tiny piece of genetic material can really mess up your body.

It can really wreak havoc on so many lives.

I wish I could give her back every single thing this stupid gene has taken from her.