Summer break is over!!!

     Well, today was Kerstin's first day as a 7th grade student!  I am still in disbelief!  My daughter, my baby is in 7th grade and will be a teenager in December!

     Today was interesting.  I am amazed at how district leaders know how to avoid you when things aren't fully in place.  This is NOT the post for that and I will not "go there" now!  I hope they know IEP's were written at the end of the 2013-14 school year!

     Kerstin wanted to sleep in late!  Like always, I had the lights and TV on...nothing was working at first.  Eventually, we got the day started!  She was happy to see her teachers and the students, only for a while too.  She was ready to go.  I knew she couldn't stay long anyway because of the seating arrangements and her chair being a snug fit.  Hopefully the new wheels will be here soon. 

Here are some pictures from Kerstin's first day of school!  

All loaded up, ready to go!

"I'm ready to go home now!" 

More to come...

Wordless Wednesday- 08/06/2014

About Last Week

     Last Tuesday, Kerstin had another spinal fusion follow up appointment.  Everything went well, really well.  The fusion is going well. Kerstin is healing, the screws and rods are in place. There were a few questions for the doctor.  

     Lately, Kerstin has been drawing her left leg up excessively and it appears that stretch marks are coming because of the constant pull or bend.  She also hangs this left off the side of her wheelchair. Hanging leg off the chair is pretty much a comfort thing.  Since Kerstin is not a walker, her kneecaps are not in place as they would be had she been a walker.  Doctor Killian informed us that there has not been a successful surgery that would be worth performing to correct it.  

     The dysplasia of her right hip has not changed, there is no arthritis there or in her knees.  Always a good sign, and I'm very thankful for that.  Even better, he tells us that Kerstin is done with orthopedic surgeries!  He will continue to watch her hip, but as he stated "she's done with ortho stuff"!  That was great news because on July 23, 2013 at her follow up from the bilateral triple arthodesis (fun to say), we found out that the curve of her spine had increased to the point of needing surgery. This appointment, all great news!

    We are still waiting on the new wheels to come, should be approaching any day now.  She is snug as a bug in her current chair.  Kerstin's physical therapist sent a letter to the doctor requesting that Kerstin get a Hensinger neck support.  She's been tilting her head a great deal since the surgery.  Brenda (PT) said that when a child has scoliosis, they tend to tilt their heads to compensate for the leaning that is caused by the curve.  Once surgery is performed to correct the back, they still have the head tilt.  The neck support will help to strengthen muscles in her neck and hopefully, she will eventually hold her neck/head up better. 

Hensinger Neck Support

     We also got a prescription for a Tumble Form chair so that Kerstin can have another seating arrangement when she's at school, that's not in her wheelchair.   There was a beanbag that she had access to but, pettiness with/ from school leaders/administrators changed that.  The beanbag was flattened within weeks of the last school year starting.  Larger children that have mobility and limb usage had access to the bag and it became of no use for Kerstin in it's pancake like state.  She had a Tumble Form, but quickly outgrew it after the spinal fusion stretched her, no complaints there. 

Large Tumble Form

X-Large Tumble Form

Tumble Form chair with wheels.

     So, Kerstin will continue therapy! Follow up with orthopedic specialist only if/when needed until next scheduled appointment.  Lovely!!!



More to come...

Back To School. Dread or Celebrate?

     It is that time of year!  Tons of parents are celebrating everywhere!  It's almost Fall and that means the new clothes and supplies have been purchased, buses will be rolling soon and the bells will be sounded as the new school year commences.  Morning routines will or already have started.  Those routines include; getting everyone up and out of bed after months of sleeping in late.  Getting dressed and out the door.  Mad dashes for the car or bus.  Yeah, it's going to be interesting.

     Many parents are happy because their lovelies will be "out of their hair", so to speak, at least for a few hours per day.  They send them off with their backpacks, stocked with supplies and that is it, until there is a need for homework help.  If you are a parent like myself, raising a school aged child with special needs, the daily routine is a bit different!

     I'm not jumping for joy because it's time for back to school.  I won't be laying back in bed once the bus pulls off with Kerstin.  There is no complaining here.  Just education and hopefully an understanding!  Things are different in some households and families.  

     My words a few days ago on a Facebook post:  When prepping for back to school, some of us have to do more than clothes, pencils and paper, backpacks and lunchboxes.  We have to make sure seizure/epilepsy care plans are in place, medicine lists and schedules as well as g-tube feeding schedules are ready.  Not to mention the many letters and notes from doctors, therapists and specialists...and then the petty stuff.  It's almost that time!

     

     Kerstin has been in school since August 2006.  I have been her "right-hand Mom" since day one!  Everyday that she's been able to attend school, I have been there providing service and assistance to/for her.  These services weren't limited to only her.  I have assisted the instructors when needed and definitely Kerstin's classmates.  That is how it's supposed to be, right?  If you're in education, you're there for the children!

    In spite of the pettiness I've endured over the years just to ensure that my daughter receives an education with peers of her age and in her community, I still happily attend school with her.  I do whatever is necessary to ensure that she receives an education in as much of a "normal" way and that it happens in an environment that resembles her life and community.  Her life is not self-contained and neither will her education!!

     So, as the school year approaches, remember those among you that have to go the extra mile with there little ones in order to get them prepared for school.  We don't just send them to school, some have to go or be there more than most! 



More to come...

Princess Smiles-a-lot!

2nd Annual Alabama Angels Pageant

     The 2nd Annual Alabama Angels Pageant has come and gone!  I am sure that there were many participants that did not or could not participate in last years festivities, Kerstin included.  This year was different.  I mentioned on the Alabama Angels Pageant Facebook page months ago that Kerstin would not miss the event this year.  There would be no more hospital stays that would keep her from Hunter Hills Church! 

     You see, at the time of the pageant in 2013 Kerstin was just coming off of her 2 hospitals stay after two separate surgeries one month apart. The first being a bi-lateral triple arthodesis on both feet and the second was to have her g-tube placed.  However, pageant directors came to our home to present Kerstin with her crown, sash and goody bag!  Her day was beautiful all the same just not the full experience with all the bells and whistles. 

     The Friday before the pageant was a day of prepping and pampering for Kerstin.  Hair, nails...somewhat of an in home spa day for Princess Smiles-a-lot!  The excitement was brewing in Kerstin, I could see it all over her face.  She was so excited that she woke up Saturday morning around 4:45 a.m.  YES!  I went ahead and checked all of bags to make sure we had everything.  

     Upon arriving, the carriage rides were in full effect.  The decorations were so beautiful.  Volunteers were on hand to greet everyone, opening doors, just so much kindness.  There were booths set up to provide valuable information to the families as well.  We checked in and was assigned Kerstin's Guardian Angel.  I will tell you, I know we had the best one in the building!  

     The angels were so beautiful!  This day was a day they had the opportunity to shine and were included.  They sang, danced and told jokes...like my little lady did with her Dynavox.  

Here's how the day went...

Dressed, belly full, now it's time to prep!

Actually smiling while I'm doing her hair!

Director, Renee Lantz

Pageant Team Leaders/Coordinators

Getting ready to go on stage...her cousins at her side.

Look mommy..I have on a little lipstick!

Her name in lights!

Little jokester is coming on stage...

Kerstin with her Guardian Angel, Carol and emcee, Chris Britton

Telling her jokes with assistance!

Angels and military excorts!

Crowns and sashes..

Crowned!

A goody bag too...

The day is done...dreaming about the next one!

Wordless Wednesday-7/30/2014

Access for everyone!

     While working on a class assignment, I came across somewhat of a challenge for everyone.  I will include it later in the post.  This challenge made me think about what I have experienced in the past week.  After Kerstin's therapy appointment last week, I had to go to the Sears Repair store to pick up some things for the lawn mower.  This was my first time going to this location.  I must say it was an eye opening experience.

     The experience was so touching, I had to tweet Sears about it and I've sent an email to Americans with Disabilities Act (ADA) about this and the need for better changing tables/stations in public family restrooms.  We, my daughter, my 10 year old and 4 year old nieces pull into the parking lot.  There are faint lines for accessible parking, Great.  No one was unnecessarily parked there, even better!  The store has steps/stairs to the entrance door and NO ramped access!  NOT GOOD at all!  I had to leave my daughter and nieces in the vehicle, running so that they could have air.  I had to ask the 10 year to lock all the doors until I returned.

Access for everyone!

     A few days later, I mentioned the experience to my sister.  She said something so critical yet, something I know many people do each and everyday.  When you have the ability and use of all limbs and can climb stairs without incident you don't think of those among us who cannot do the same.  

     So, I will challenge you to try this.  I think it's worth it. I even posted it to Facebook/Growing With Kerstin. 

Worth the experiment! Please take notes and share if you don't mind.

Many of us take for granted our ability to come and go as we please. With the exception of a few buildings, which are off-limits to the general public, we are free to enter any building we wish, whenever
we wish. During the next week, keep track of the buildings you enter, the streets you cross, and the activities in which you participate.

* How accessible are these to persons who are in wheelchairs, blind, or hearing impaired?
* Are the room numbers in your building labeled in Braille?
* Are the steps ramped or is there an accessible lift or an elevator?
* What areas have not been made accessible to these individuals?
* How does accessibility limit their participation in the activities in which you regularly participate?
* How could these areas be made more accessible to individuals with disabilities?