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 furious...it 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. ~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...

Monday, March 24, 2014

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 "germy" schools, 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...

Tuesday, March 18, 2014

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...

Monday, March 17, 2014

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!!!!


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


Thursday, March 6, 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 an 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!


More to come...

Friday, February 28, 2014

All clear!

So, even after we started February off in the hospital for a few days, Kerstin's lungs and chest were clear when she had her follow up appointment.  Her pediatrician was pleased with her progress on the 17th, which was also her granny's birthday.  He was also happy with how well her back has heeled from the November spinal fusion.  At the end of her check-up, her doctor stood at the table and told me that he just wanted to say that he was impressed and had to commend for the care I take with Kerstin.  He seemed to get a bit choked up and said that Kerstin looks good and appears to be a healthy child and that he knew it couldn't be easy.  I told him that it gets hard at times but, I wouldn't trade it because I love Kerstin and she's changed my life!

No, it is not easy.  But, what about life is?  I know people say that it gets hard, it gets rough and I say I understand.  Until you've walked a mile in the shoes of another, you never know what they are truly dealing with.

Now, yesterday, Kerstin had her orthopedic follow up!  More x-rays!  Her doctor enters, and looks happy!  We live for these moments!  He said that Kerstin is in a growth spurt (YES, indeed).  He said her x-rays look great, her fusion is coming along nicely, all the rods and screws are in place and there is NO arthritis in her hip!!!! HALLELUJAH!!!

He asked how was handling her since the fusion?  I told him she's getting heavier since her g-tube, but I'm handling her.  He had to clarify the question.  Was she more difficult to lift, change, bathe, dress, etc...  NO, not at all.  For the first time in forever, I have been able to put her in her bath chair and step away without the worry of her falling into the tub.  She sits on the sofa or in bed without flopping over.  She sits up straight in her wheelchair now (it either needs major adjustments or a new chair needs to be ordered).   Kerstin still gets some congestion but its not like before surgery, her breathing seems more stable.

It amazes me how much posture and the the breath affects the entire body.  My daughter seems happier since the spinal fusion.  At first, I was completely devastated when he told us that she would need the surgery.  I started my own research and got overwhelmed at what was found.  All I could think was, my daughter has to have her back cut open.  It really got to me at first.  Now, I'm glad it's behind her.

Dr. Killian, asked Kerstin's mommy, ME, if I could be a resource for other parents who may be preparing their child for the spinal fusion?!  I happily agreed!  There may be another family out there about to approach this surgery and their child can NOT do the required walking as therapy after the surgery.  Their child may be like my child, dependent upon family, nurses, and other therapists for every moment they make!  It's hard and it may seem like a long road is ahead of you, it whizzes by and in not time you will get the all clear for your angel to return to school!

For the first time in 4 months my daughter will return to school next week!!  This stay wasn't only because of the fusion, she had complications after surgery and an extended stay, then another hospital stay 3 months after surgery.  We made it through it all!  We will start slow and do partial days for a while but, she's able to go back to school!

More to come...