A Disability does NOT equal clueless!

On Monday, April 21, Kerstin had a follow up appointment with her neurologist.  His office is at Children's Hospital.  I am the kind of mom that always talk to and explain to her what her appointments are all about and where we're going for the appointment. 

So, needless to say, Kerstin knew all weekend that she was going to Children's Hospital!  Monday morning comes and she had much attitude!  No good morning smile, she barely looked at me.  The whole time, I'm talking to her, telling her that we have to get ready to hit the road for her appointment.  She just looked at me!!!  PLEASE do NOT think that just because a person has a disability  they do not have feelings or understand what is going on around them!!!

I had to slow down and talk to my little lady about her visit to Children's... I promised her that it was only an appointment and that she WOULD be coming back home.  Her mood lightened almost immediately!

So, a few hours later when we arrived at the hospital parking garage...she became startled.  I guess the fact that we were actually there, again.  This was our first return since we left Thanksgiving Day 2013.  Kerstin knew exactly where she was, and her mood changed once again.  

APPOINTMENT:

Kerstin has been having seizures, more than her usual.  These "breakthrough seizures" were happening without fevers or sickness.  They are called so because they can happen at anytime, for any reason even when on an anti-epileptic drug.  Missy is getting bigger, she's in a growth sprut and the lower dose had become ineffective for her.  We have an increase in seizure.  


Also, Kerstin's mommy, is about to be in contact with some people about a "Seizure study". (More info later)

Leaving the hospital...Kerstin was a very happy little girl!!!  She got to go to Target and come back HOME!!!

Kerstin with some of her cousins!  Easter 2014

Her cousin's hat..she said Kerstin would look "cute" with it on!

The day was long but, FUN!  Easter 2014

ALWAYS remember!!!

More info: Kid's Health 

"Raising Kerstin"

Maybe I should say "Raising Mattisa", I'm growing each day, learning new things...and yes, I am pulling that title from the movie "Raising Helen".  Not many similarities but I thought it would be a great topic, especially after this past week. 

Kerstin was admitted to the hospital on Tuesday night!  I could not believe what was happening!  Monday night she started sneezing quite a bit, Tuesday was full blown congestion, then around 7 p.m. she's warm, temp was 99...frantically I give her a fever reducer.  I know what comes with her fevers, I wanted to stop that.  It did NOT work, she started having a seizure that came with vomit (hopefully you're not reading this while eating).  The seizure did not last long, it was 3 minutes, which is an eternity when it's your child. 

So, we continue to go through the nightly routine.  I was about to start Kerstin's continuous feedings when she becomes fully involved in yet another seizure and this time, it seemed like there was no stopping this one.  I called my sister for reinforcements on administering the Diastat while she's completely involved, this was 4 minutes into the seizures.  She gave the okay but, before I knew it she was also at my home, to assist, along with other sisters and even my mom!  I'm so thankful for that!  

Twelve minutes after the Diastat was given, Kerstin was still seizing and her temp, taken behind her ear, was reading 106.3, I said, "this can't be right!"  A rectal temp was taken and it read 104.1!!  Kerstin's neurologist was called and the on call doctor said she needed to get to a hospital ASAP since the Diastat was not working and her temp was extremely high.  

We arrive at the ER, vitals were checked and her temp was still a very hot 104.1.  This had never happened, where her temp continued to rise or stayed high, even after a fever reducer was given.  Nor, had she continued to have seizures especially after having the Diastat.  

Making a long ordeal short, Kerstin had a cloudy x-ray, showing early pneumonia, causing her to be put on oxygen.  Her Keppra levels were not at a range her neurologist thought it should be.  In order to control seizures, the meds have to be present in her blood and apparently the level was too low to keep the seizures at bay. So, you guessed it, that was increased, the dosage is now 
doubled. 

Kerstin is home once again, thankfully.  She has quite a few follow up appointments coming up.  The story of our life!

Kerstin must have known she would be going home this day, she slept so peacefully!

It is always good to know that there are so many people that care, one of her former teachers (adoptive grandma and great friend) sent this card to her the day she came home!

More to come...