What a week!

The above is Grace in the ER...from the previous post.

My last post was about seizures. Little did I know, what was yet to come.

The day after my last post...she seized again.

It was *we assume* like Sunday's event.

She immediately felt like she was falling.

 She was in a panic, rigid and yelling.

*the above can look like she's being naughty if you don't know her well*

We laid her on her side and grabbed the video camera.

She had another seizure, this one included lip smacking and blinking.

Got it all on video *yay!* and afterward she was not recovering well...like before.

Full of panic and unable to sit, movements jerky and abnormal.

We called Neuro and they had us head to the office.

He didn't like what he was seeing.

She was sleeping off and on but when she was awake, her movements were "baby like", is the only way I can think to describe it. Like her body was not cooperating.

He watched our video and said that the seizure looked typical, but what we are seeing afterward is not.

He admitted her to the hospital.

Another 24 hr. EEG.

This one actually showed seizure activity, which is good...in respect to the meds she is on.

  He did some thinking and wanted to rule out some things while we were there.

 He couldn't help but wonder if what we are seeing is connected to her deletion.

He felt it was important to do a lumbar puncture to get spinal fluid on her.

 So, she was taken off of the EEG and prepped for sedation.

They also wanted a current MRI, this meant 2 different types of sedation in one day.

No...we didn't feel great about it, but we also don't like seeing her that way.

It was presented to us that the fear is, she may have these events and one day not recover from them.

Meaning loss of her physical abilities. :0(

 Reading her Kate's Kart book. *I think we have a small library of Kate's books now. ;0)*

 The nurse was kind enough to do an EKG on her baby as well. ;0)

We didn't learn much while in the hospital.

MRI is unchanged...she did have seizure activity on her EEG...spinal fluid is clear.

We were released after sedation and testing the next day.

We took home a pretty ouchy and tired girl.

Not having experience with spinal taps/lumbar punctures...I didn't realize what was happening when our girl could not lift her head without vomiting...it meant she was leaking spinal fluid.

After 26 hours of no urine...we returned to the hospital for fluids.

 She is always such a good sport.

After WAY too many pokes...she would still thank them afterward.

Through tears of course.

She perked up enough to return home a few hours later.

Where she proceeded to lay on her back for days.

Unable to eat and drinking only when we gave it in a syringe like medicine.

We were thankful to be home though...where she could be loved on and rest.

 We prayed for healing.

We did not want to have get a blood patch.

It couldn't be done locally...it's painful and invasive.

Nothing would happen over the weekend anyway...so we kept her comfortable with codeine and zofran.

She was supposed to start Kindergarten on Monday. *can you believe it?!?*

So as a family, we asked that God would touch her.

Sunday morning...we prayed as a community for healing.

Her teacher gave us a purple sparkle pencil for her at the open house she couldn't attend.

She LOVED it.

Obviously. ;0)

By Sunday evening...I was standing in the kitchen and turned around to see Grace standing behind me!

She had not been able to sit, let alone stand or walk.

She was VERY unsteady but insisted on staying up for a bit.

Monday she was a little better...Tuesday, even more progress!

By Thursday...she was off the pain meds and ready to go to school!

We definitely count this as a miracle.

She is doing awesome!

We are changing her seizure meds...this is never an easy process.

She is doing well though...in light of everything her body and brain have been through...she is remarkable.

Now for my momma's heart to accept that her classmates won't understand all of this, or that she is so very special! Thankfully, until we get the meds worked out and the staff get to know her better...she will have a full time aid with her. We feel good about this plan. :0)