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...

Monday, February 10, 2014

"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 

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...

Monday, February 3, 2014

If Kerstin could...

Yeah, I'm in another one of those slumps of "what if?" or "If Kerstin could..."  Sometimes I hate these moments, and at other times, I'm hopeful.  Hopeful, because there's always a possibility, faith is like that!  Faith gives you courage.  Faith lets you know, that your "what ifs" can be possible.

Lately, I've been thinking, if Kerstin could talk, I know this little girl would be as sassy as they come, she's that already.

If Kerstin could talk, walk, sit on her own, dress herself, do the things other children do, I would not have to go to school with her everyday.  I wouldn't have to worry so much because, if something went wrong, anywhere, she could tell me!  If she could dress herself, it would not take us so long to leave the house and we wouldn't have to start hours before its time for us to leave.

If Kerstin could feed herself, there would be no need for the g-tube, the Kangaroo pump for continuous overnight feedings, all the boxes of Mic-Key sets, the bolus syringes, the feeding bags or Pedisure that has taken over a corner of our kitchen.

If Kerstin could walk, I would not have to load and unload a 59 pound wheelchair everyday, then lift her in and out of our vehicle.

If Kerstin could sit on her own, there would be no need for a car seat, she could even ride in the front seat with me.  I still may do that, once I've consulted her therapist and see if the car seat can be installed in the front passenger seat!

I could go on and on...but, there's no need to.  We are living the life we were intended to.  We are in the postition that we need to be in for this time.

If all of these things were reversed and Kerstin was another child... I would not be the person I am today.  I would not have found this voice to speak up when things are not right for children and adults with disabilities.  I would not have found the voice to be the advocate that I am.

If Kerstin had been another child...I would be silent and things would not have taken place the way they have.

I like to sing (or try) along  to these lyrics to Kerstin, she knows it and I have to always remember these words myself...

"When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are

And when you smile
The whole world stops and stares for a while
'Cause girl, you're amazing
Just the way you are..."
~Bruno Mars

 She is...Kerstin is amazing, just the way she is!

*After the Super Bowl last night, I knew I had to add this song, if you could have seen her smile...*