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 

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 furious...it was a grand mal or tonic-clonic seizure! 

• A grand mal (or tonic-clonic) seizure 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. ~KidsHealth.org 

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"...as 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...

Unexpected Happenings...One Year Later!

Spring Break is here once again.  This year on the Monday of the break, we were at home.  No scheduled appointments to Children's Hospital to see a neurologist, or to have a swallow study done.  That's exactly what we were doing this day last year.  

March 25, 2013 a day/date I will not forget for a long time.  
That is the day I was told that it was no longer safe to feed my child the only way we had used for 11 years.  We could not leave the hospital.  I still cannot describe the shock, the hurt and the fear I felt that day.  That week she spent in Children's is chronicled here.  

Kerstin at Children's Hospital-Neurology--March 25, 2013

A year later, Kerstin's weight has doubled.  She has outgrown pretty much all of her clothes.  We are in a slow process of building a new wardrobe for her.

Kerstin-both taken March 28, 2013 

I will say this about our feeding tube journey;  I never thought that I would have to learn to feed my daughter via a g-tube.  I was always scared of them.  The unknown, the horror stories I had heard just had me completely afraid and unwilling to consider it until I had NO choice at all.  Now, my daughter is thriving!  As previously stated, her weight has doubled.  She is still easy to get sick with viruses and things from "germy" school, but not as often.  

Kerstin--taken March 11, 2014

I'm learning about the g-tube everyday, a year later.  I have become more comfortable with using it, just not changing it, I'll leave that to my sister for now.  As with everything, it is a learning process.  We are always growing and learning!!

More to come...

A Little Determination...

These pictures are the proof that a little advocacy and determination goes a really long way!!!

It is also a reminder to MYSELF to never give up, stay visible, vocal and focused!  I am an advocate for my child and others living with disabilities!

April 27, 2013

March 18, 2014

Comparative photo

More to come...

Vote for Kerstin Sanders - Hayneville, AL in the 2014 National Mobility Awareness Month Local Hero contest!

HEY GUYS...if you in the orange box before you submit your vote, please click on the "Get an extra vote" button, answer a simple question, usually caregiver/accessibility related...your vote will count as TWO....THANK YOU!!! Vote daily and share often!!!!

THANK YOU FOR YOUR SUPPORT!!!

Vote for Kerstin Sanders - Hayneville, AL in the 2014 National Mobility Awareness Month Local Hero contest!


 

Wordless Wednesday March 12, 2014

=)

G-tube journey

March 28 will be one year since my little one has had her gastrostomy tube or G-tube placed.  Since that time, Kerstin has double her weight (pics will come in an anniversary post)!!

When I say that it has been a journey, that is an understatement.  I must say that I have yet to change her port/g-tube.  I am too queasy!  I always get my sister (who is a nurse, thankful mom here).  I don't know if I'll ever have the nerve to ever change it.  Seeing that little "unnatural hole" on her belly.  I know it's there for health reasons but, I don't know...

Since we've become g-tube aware...I think just about everything imaginable has happened when it has come to g-tube boluses and the continuous feedings overnight.

Here we go:

I'm doing a bolus, Kerstin starts to laugh at something on TV...Pediasure is everywhere!  That happens with sneezing, coughing even gas, contents come back like an erupting volcano!!

I start a bolus, the extension line is open and nothing is moving!  WHY?!?  The cap is on the tip of the syringe!!!

How about a newly changed port yet, the bolus is moving really slow, what is wrong?  I panic and call the doctor!  The nurse calmly tells me to give her a little room temperature Coke and let it stay in the line for about 30 minutes then flush.  That simple?  Yes, the boluses moved much better.

Getting all set for continuous feeds, meds are given the pump is started...ten minutes later it's beeping!!  The line is NOT opened!!!

Or, the next morning after the continuous has ended, she's given her morning meds...I can not for the life of me get her extension to disconnect from the feeding bag!!  I had the strength of Wonder Woman and twisted it on really tight.  Come morning, it wouldn't budge.  I had to throw it away.  Thanks to the collection of medical supplies we have on hand, she has a stash of them.

I've left home before and left her water bottle...quick stop at the nearest store to buy her a non-refrigerated bottle!

I can not forget in the beginning, we are not home, once at school and once on a day we were just out and about, no extension set to feed her!!! Thankfully we weren't far from home.

I know I'm forgetting something.  All that to say, I was originally afraid and completely devastated that MY daughter may need a feeding tube, then getting to the point of not a maybe but, she has to have it!  I am thankful for the journey, she has gained weight, and she hasn't been as sick as often as she used to be.

The tube/ port and the extensions HAVE to be kept cleaned.  There's no getting around that!

Resource

More to come...