Brag? Maybe

     I can proudly say that I am not one to brag...or at least I try my best not to brag.  When it comes to Kerstin and a milestone or achievement she has made, or something she's involved in, that all goes out the window!   It is with so much happiness that I can honestly and very proudly say that this post is nothing less than a brag post.  *insert a happy smile*

     So, I'm sitting with Kerstin, giving her a bolus and like always, I casually talk with her about what's on TV or the day we've had.  I notice that her little hands are growing, as is the rest of my little lady.  So, I take her hand and kiss it, telling that it's so soft and that is why my little one year old niece always kisses her hand.  I continued holding it as were bonding and I'm feeding her.  Suddenly there is a strong grip on my hand!! I looked at Kerstin and she's looking directly into my  eyes with a big smile on her face.  I said to her, "You're squeezing my hand!"   Without any hesitation, she squeezes it again!  Four times in a row and at my command of "Can you squeeze my hand again?"  She did so!!

My sweet girl is strong and a very determined little girl.  No matter how tired I may become, which happens every single day, no matter how often I feel like I want to give it all it...those times have hit me.  I know that if all that Kerstin has been through in her 13 years of life, I can and should be able to continue on!    And continue on is what I will do! 

She squeezed her momma's hand... 

     

Scars of Strength

     As November approaches, I can't help but think of the year that was 2013!  This was a year filled with what seemed like surgery after surgery, hospital stay after hospital stay; three in one year.  No matter how hard it seemed to me and for us, I am aware of the families we came across that were dealing with a little more than we were.  However, Kerstin was dealing with a great deal.  At times, I felt like she was dealing with more than any little girl should have to deal with.

     I've said it before, Kerstin's will and strength gives me the strength to go forth each day.  There are times that I have had absolutely no idea where the strength has come from to continue doing the things I do for her each day.  I know that if my sweet pea can smile through the things she's endured in her 12 years, I can keep fighting!  

     "Scars of Strength", came to mind when giving Kerstin a massage after a bath one day.  I was looking at the scars on both her feet, so long and almost around the entire foot, looking as if it was sown back on, with pins/screws to boot.   The bilateral triple arthodesis, was done because her feet had started to turn in  at the ankles and had gotten to the point that she could no longer wear her AFO's and the bone was starting to cause callouses on her feet.  We were even told that if her ankles continued turning, she would not be able to wear shoes.   Now, she is able to wear her AFO's and shoes, comfortably. 

Day of surgery 02/28/2013

     Then, there's the g-tube, an everyday reminder that there is an unnatural hole in her stomach.  Yet, this "scar" is there because she was no longer able to eat the way she had been most of her life.  It was unhealthy not to mention unsafe.  She aspirated, silently, during a swallow study at Children's Hospital.  

Kerstin's new belly button...

     Kerstin's biggest "scar" is over 17 inches long and directly down the middle of her back.  She endured over 7 hours of surgery to have a spinal fusion.  The incision is a few inches from her neck down to her tailbone.  Underneath the scar, rods and more screws to correct a 50 degree curve that had started to cause problems with her lower right lung. 

One month after spinal fusion. 

Before and after spinal fusion

Continuing to heal...

     Kerstin even has scars from central and PICC lines that had to be placed during her spinal fusion.  Still visible are scars on her neck and her left bicep area. 

PICC line scar

Central line scar...and scopolamine patch

     So, Kerstin's "Scars of Strength" are just that, signs that she is a tough little girl.  She has more strength than many.  I've looked at her, watching her in hospital beds, at times with so many tubes, lines, and wraps covering her little body and have wondered; "How much of this can one child endure?"  "How does she manage to smile when in so much pain?"  Faith!  Strength!  No one in her life telling her to give up!  No one with negative vibes surrounding her!  
     Her scars, are reminders for me.  Don't give up fighting.  Be strong and have strength...



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...

Coming to terms? Not really!

     Well, I thought I was "coming to terms" with the idea of Kerstin's upcoming surgery...now 25 days away.  This is not exactly the case.  It seems the closer it gets the more stressed I become.  I'm feeding her and fighting back the tears because all I can think about is, "How will they have her laying while they perform the surgery on her back?"  "How out of it will she be once the surgery is over?"  "Will she be in much pain?"  So many questions, that I don't have the answers to.  I do know that her surgery will be no less than three hours, meaning it will be some time before I will be able to see her once they take her back. She will be given anesthesia, it has to kick in before they can start, she will be in surgery for a few hours, then in recovery before I can see her.  After that she will be in the pediatric intensive care unit (PICU) for at least the first night afterwards.

     Everything is becoming so real now that all of the doctor's offices are calling to remind us of the many pre-op appointments she has coming up.  There is a full day ahead of us this coming Monday.  The day will start with an x-ray of her spine followed by a CT of Thoracic and Lumbar spine, first ever visit to a pulmonologist, a follow up with neurology all followed by APASS (Anesthesia Pre-Admit Screening Service).  What a day it will be!

     I'm praying daily for the strength to carry on, but I feel so weak and helpless at times.  When she's moaning and I don't know what is going on or what I can do to console her and make it better.  When her arms or legs are shaking and there's nothing I can do to stop it.  No matter what I do at that very moment, nothing seems to help...there's nothing I can do but cry and pray!  It is very hard, most of the time.  No matter what's going on, how I feel...it seems like there's no break, no sick days for me!  So, I press forward.

Home away from home, in a few weeks. 

 
More to come...