similar to life

Kesi is better today.  I still don’t feel that she’s 100% and I’m positive that she has lost some of her speaking abilities.

Big Z is coming tonight to spend several days with his Momma.  He has a way of making me smile and I really need that right now.

Kesi had a seizure after her occupational therapy this afternoon.  I guess technically it was yesterday since it’s now 3:40 a.m.

Let’s review:  Children with CACH may regress after head trauma, physical stress or fevers.  Kesi had a fever recently.

When she woke up yesterday, I noticed that she wasn’t her usual chipper self.  She cried a lot and wouldn’t eat even a bite of food.

I took her to the occupational therapy center for her regular appointment.  I didn’t mention any of my concerns to the OT.  I’ve learned not to mention concerns until after treatment.  I don’t want her care to revolve around pre-conceived notions.

After therapy, the OT sat down beside me and told me that Kesi couldn’t even hold a spoon when she was eating in the treatment area.  At this point, Kesi had to lean over onto the seat of a chair to even stand.

On the way home from the center, I couldn’t understand a word that Kesi was saying.  She became suddenly quiet and when I turned around to check on her, she was having seizure activity.  Once it passed, she spoke normally (what’s normal for her anyway).

I think that was my breaking point and I just lost it.  I yelled various obscenities to God right before I lost the ability to breathe.

It’s not easy to drive while your in the midst of a full blown panic attack.  At least I had enough sense to pull over.  I called M and, believe it or not, the minute he heard me he said “I’m coming home” and hung up the phone.

I pulled it together long enough to drive home.  I brought Kesi in, sat down with her in the middle of the living room floor and sobbed.  I just looked at my precious little girl and sobbed.

Kesi is so much stronger than her cry baby mother.  She wrapped her little arms around me, patted me on the back and said “Mommy, don’t cry”.  As she pulled back, she took her little hands and wiped away my tears and told me that “it be okay, Mommy”.

We spent the remainder of the day at Scottish Rite.  All we can do now is hope that this is just another incidence of Kesi catching a little virus, having a bad few days, then going back to business as usual.  I don’t know why I thought the doctor could help me today.  I’m learning each and every day that the only person I can depend on is myself.

I was able to get the digital images of all of Kesi’s Radiology studies.  I’ve been poring over the thousands of images for the past three hours.  Her MRIs are so abnormal, I honestly don’t know how the hell the child is able to blink, let alone walk and talk.

I’ve put a sleeping bag on the floor right beside Kesi’s bed.  I don’t think I’ll be able to sleep unless I’m near her.

I’ve held it together for three years now.  I’ve only had one real breakdown before today.  I don’t know how it happened, but I’m a goddamn wreck.

It’s going to cost us $30,000 for stem cell treatment.  $30,000 that isn’t covered by medical insurance.  Even if I sold every single thing that I own, I wouldn’t be able to come up with $30,000.

My kid may die because of the fucking FDA.