Wednesday, April 30, 2014

Wordless Wednesday- April 30, 2014

Tuesday, April 22, 2014

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.  


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 

Tuesday, April 15, 2014

Ten Years with Seizures.

Usually most people equate April 15 with taxes!  I did but not any more since April 15, 2004!  That is the day Kerstin had her first visible seizure.  It was one that won't be forgotten!  

I guess you're wondering why I said "visible".  Her neurologist had discussed that because of her diagnosis of Cerebral Palsy, seizures could take any form.  The majority of her seizures have be febrile, she does have clusters, and absence, she has had her share of tonic-clonic.   This night, Kerstin's seizure came on strong and was a grand mal or tonic-clonic seizure! 

  • grand mal (or tonic-clonicseizure is when abnormal electrical activity occurs over both sides of the brain. These seizures can cause whole-body movements and loss of consciousness. After a seizure, kids and teens may be confused, tired, or have a headache. These are managed with medications and, sometimes, a special diet or a device that stimulates a specific nerve. 

Seeing her laying there, it seemed like she was looking through me, like she was there but not totally.  Nothing I could do would stop it and at the time she was not on Diastat.  If you know me, you know what I did...called my sister!  After the seizure didn't stop after a few minutes, we took her to the ER.  She ended up being hospitalized for a few days.  

This lead us on yet another journey...more MRI's, and EEG's.
Kerstin would be placed on seizure medicines, and under frequent visits with her neurologist.  

I think it was the Fall of 2004 when her doctor wanted to do an in office sleep study on Kerstin to check her activity while she slept.  One attempt did NOT work because my daughter is such a sly little girl, she would not fall asleep, even after she was given the "sleep aid" soon as we pulled away from the office she was asleep. 

 So the next attempt was successful.  I got to sit in a huge rocker recliner and hold her while the test was administered.  We had fair warning that the appointment would last about 3 hours.  It really did.  Kerstin also had a seizure during the test, while I was holding her and I didn't even know it!!!  

At times it seems like she is doing really well, then they seem to come almost back to back.  There is always a time I can almost guarantee that she will have at least one seizure and it is around this time of year.  It is so eerie, but since 2004 she has had at least one seizure on or near April 15!

Case and point, she had one on April 14, 2014 at 3a.m. I made a Facebook post to talk about the eeriness of the April seizures.

We will be traveling those two hours one way on Monday to her neurology appointment...another update coming soon.

More to come...