Wordless Wednesday-October 23, 2013

Things I wish I did NOT know much about!

     There is a saying, "You learn something new everyday!"  True! There are some things I wish I did not know much about!  Since Kerstin's diagnosis back in June 2002 it has be big emotional, educational and at times very stressful roller coaster.

     I feel like I have so many professions all rolled into to one, ME!  I am a cook/housekeeper/butler, chauffeur, paraprofessional, nurse/caregiver, secretary, personal shopper, therapist (physical, occupational...), consoler...most of all MOM!  24-7 the duties of a mom is never ending.

     Since the diagnosis of Cerebral Palsy, we have been faced with so many other diagnoses and terminology it gets pretty hard to keep up with it all.  At the start, Cerebral Palsy...I was a two something mom, first child, and to hear at her 6 month check up that she may have a mild to severe case of cerebral palsy was shocking and very hurtful!  I had no idea what it was, what to expect, what it would do to my daughter.  To be clear, if there was/is a question...Cerebral Palsy is NOT contagious!

     Cerebral Palsy:  is like an umbrella, covering a few forms of motor conditions that affects the development.  Cerebral refers to the cerebrum of the brain.  Palsy is uncontrolled movements of the body.
There are different types of Cerebral Palsy (CP); spastic, ataxic, athetoid and mixed.   We would have to see a neurologist to determine the type; Spastic quad.

     After that first diagnosis there came so many terms I needed to be aware of, so many doctors Kerstin would have to see.  Never imagined the journey we would be on.  I had heard of seizures before.  Never thought I would witness one firsthand, and it be my child fully convulsed.  April 15, 2004, is not a night I will long forget.  Epilepsy!  Another diagnosis, she will have to be followed closely by the neurologist. At first, it was thought that her seizures were febrile, then pain related, not so much the case.  She has been having unprovoked seizures.  Recently having a few small seizures, four in the past week.  Her Depekene dosage has been increased by 1 mL.

     More terms I'm becoming an expert at and wish I wasn't:  Atelectasis, bilateral triple arthrodesis, bolus, chest percussion therapy (CPT), gastrostomy tube (g-tube), pulmonologist, scoliosis, Dandy Walker Syndrome, developmental delay, dysphagia, failure to thrive (FTT), seizure disorder...
Raising a child with special health, medical and education needs is no easy task for anyone.  Place this task on a single parent and it can be overwhelming.  I am doing my best.  I constantly pray for the strength to do all that I can and to have the patience to do so.

   Please keep us in your thoughts and prayers!

More to come...
   

   
   

Busy day!

     Monday, October 14, 2013 was a very busy day!  I still haven't recovered, it seems.  The day started out very early, we had 123 miles ahead of us and in order to get to Birmingham, AL by 8:30 a.m. for the first of many appointments.  So,we had to leave home pretty early.  Time for updated x-rays, and there we a lot of images taken. They were taken on her back, on her side, best bend to the right, best bend to the left.  Once those were done, we had to leave that hospital and head over to Children's were we would spend the rest of the day, really we did.  We were there at 9:30 a.m. and did not walk out until 4:50 p.m.  We had a jammed packed schedule.  Originally it would go like this, CT scan of her spine ( Thoracic/ lumbar), appointment with  pulmonologist, appointment with neurologist and an appointment to see APASS once she received an okay from the specialist.  We ended up having to have a chest x-ray done for the pulmonologist.  We started out on the second floor for CT scan, down to first to see pulmonary doctor, back to second for chest x-rays, down to one to finish up pulmonology appointment, across the hall to neurologist and finally back upstairs for APASS appointment.  Roller coaster day!

     I was not expecting any results from the x-rays at the doctor's office or from the CT scan,  Kerstin's orthopedic specialist because he was in surgery, and I knew he will need to look at them in order to give me results.  Which I'm anxiously awaiting.  Being a mom, and a worried one at that, I've been examining the x-rays and comparing them.  It seems as if my little lady's curve has increased since July.

On the left is the image taken July 23 and on the right October 14.

     After chest x-rays were done for the pulmonary appointment, the doctor came in and informed me that my daughter's lungs are in fact, being affected by the scoliosis.  She informed me that it is best that the surgery takes place soon.  Now we have another diagnosis added to her list of medical concerns, Atelectasis. This refers to collapse of part of the lung.  Along with this new found diagnosis, comes new meds and therapy.  Kerstin will have to have breathing treatments twice a day followed by chest percussion therapy (CPT).  The treatments will either be from the nebulizer or Proair puffs. I had to have in office training on how to cup my hand and how to perform the CPT.  The treatments and CPT were started on Tuesday.  My princess is not a fan of the percussions.  She smiled at first, I think she thought we were playing a game of some sort.  Wednesday, she cried a little when I started.  Today the same.  I talk to her before I start, as a warning of what's to come.  When the percussions start, she looks at me like, "Why are you doing this?"  I don't like doing them, it is uncomfortable to me, so I can only imagine it's the same for her.  Having her mom, seemingly beat her in the chest, sides and back can be very confusing to a child.

Getting a breathing treatment to be followed by CPT. 

     We are 18 days away from surgery.  Kerstin only has four days of school before she is out until possibly January.  Tomorrow we will go to Red Cross to make directed blood donations for her procedure.
She is always surrounded by love and adored by many.

Kerstin and her cousin listening to music as we wait...

More to come...

Wordless Wednesday-October 16, 2013

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...

Easter Seals Walk With Me 2013-Montgomery, AL

In the midst of all the chaos; the quick approaching surgery (29 days until November 4, 2013) and the appointments before and after, the unnecessary struggles surrounding Kerstin going to school.  I completely forget to talk about the Easter Seals Walk With Me, that Kerstin has been participating in for the past 5 years.

Well, the walk was held on Saturday, September 14, 2013, her team "Faithful Friends" did not raise as much money as we have in the past but, I let the coordinator know that we would attend and had collected some donations before we found out about the surgery.  Friends and family had started planning fundraisers to help Kerstin and I out with finances after I found out about the surgery.  Needless to say, she was very understanding and offered any assistance, just to let them know.

The walk was beautiful as usual, we had very nice weather that Saturday.  Afterwards, Kerstin even had the chance to spend an hour in Target...she was thrilled =))

The day of the walk, locally, Easter Seals had raised over $20,000.00.

Kerstin with her former PE teacher, a lady I'm happy to call a friend.  Along with a new pal "Mr. Briggs" and his owner.

Kerstin with her cousin, a therapy pal "Jackson", and his owner.

Kerstin (a bit hidden) with cousin again, and "Roxie" sitting on her lap.

Kerstin and her therapy friend "Mollie".

Kerstin, her former PE teacher, and mommy. (dark, sorry).

Kerstin and my nieces.  Lots of love! (dark-shaded area)

Changes

     I know it has been a while now, since I've posted any updates.  I've been so very busy, so much has taken place.  Kerstin has started middle school!! I still can not believe it.  We are also much closer to Kerstin's last day of school before her surgery.  Now, to get caught up on things, I will back up to August 19, 2013, the first day of school.

     Nothing much has taken place since I visited the school for her IEP meeting back in the Spring.  I never got a response to my email back in January about my concerns for accessibility issues at the school either.  The email was addressed to the special ed coordinator, the human resources manager, Kerstin's former school's principal and the superintendent.  Odd group of recipients to talk about school accessibility, I  know, but I was originally called into a meeting with the coordinator and HR, about ME and not about Kerstin and definitely not about placement.  I later emailed this group to address them calling me to a meeting with two people originally and I got blindsided and the meeting was with four, and my employment was the least talked about.  Long story short, no one responded to my email from January 23, 2013 until September 12, 2013!  Great communication, I know!

     First day of school.  I discover there is NO accessible parking at the new school, no signs saying that an accessible entrance is here,  the bumpy, extremely broken sidewalk has not been fixed and this former "science lab" in which Kerstin has to travel through several times a day is still a cluttered, smelly mess!! The only progress,  a cement ramp has been installed, just outside the cafeteria.  Gee, thanks!  I guess my dauhgter was really expected to stay in this "self-contained" classroom, secluded from her peers and the rest of the school?!  No thanks!  No one else notices this, no other parent has a problem with this?  No school board big wigs will address my email from January?  What's going to be done about this?  The following letter sent to the editor of the local paper:

The Forgotten Student(s)

            Dear Editor:

I am the proud parent of Kerstin, a determined eleven year old who loves attending school with the friends she has known since Head Start. Kerstin was diagnosed with Cerebral Palsy at six months of age. She has since been diagnosed with Scoliosis and Epilepsy. As her mother, I am steadfast in my belief that children with Special Needs should not be cast away like an eye sore or an embarrassment. In 2005, I quit my job as a Student Enrollment Specialist at the Montgomery Job Corps Center so that I could attend school with my daughter. Yes, since Kerstin was in Head Start, I have gone to school with her every day! We have had many trials along the way. We have encountered some very willing teachers and administrators and some very unwilling ones as well. Her classmates have proven to be the most helpful. I believe that the willingness and understanding exhibited by her classmates is the result of Kerstin being included in general education settings.

Kerstin’s transition to middle school is presenting a number of challenges, though. Kerstin is very observant and immediately noticed the differences in her environment at Hayneville Middle as compared to Jackson-Steele. Getting to the self-contained classroom where Kerstin receives one-on-one services is a concern. The classroom is not only in a basement-like area of the school, but also at the back of the building. Kerstin has to literally circle the building in order to gain access to the main floor of the school where she has a number of classes. The sidewalk is so bumpy and in need repair that it is difficult to navigate in her wheelchair. When she becomes discouraged, I try to make her smile by singing an old R&B song, “Bump, Bump, Bump”.  I try to not become discouraged myself. If it rains, unlike her peers without a disability, Kerstin has no way to get to the main floor as the sidewalk is not covered. Her peers can take the stairs inside the school and Kerstin is literally left outside in the rain. Also, there are no wheelchair accessible parking spaces at Hayneville Middle School.

The Individuals with Disabilities Education Act (IDEA) includes two fundamental requirements for children with disabilities: the child will receive a free appropriate public education (FAPE) in the least restrictive environment (LRE). For me, that means that Kerstin has a right to attend school in a setting with her peers who do not have disabilities. It is my opinion that a child with a disability should have social interactions with their peers regardless of ability.  And as mandated by the American with Disabilities Act (ADA), she should have wheelchair accessible parking and wheelchair accessible entrances to the building. According to Advocacy for Inclusion, Inc., an inclusive educational environment builds confidence and self-esteem for children with disabilities while giving the child with a disability a sense of belonging and achievement.  Furthermore, inclusive education promotes social growth, awareness and acceptance for all members of the community. Children without disabilities become more aware and most of all, more respectful of the challenges that persons with disabilities face.  Inclusiveness promotes the fact that people are people regardless of ability.

Our transition to middle school, while challenging, is also coincidentally occurring during a pivotal time in our country’s history—the 50^th anniversary of many of the historic moments of the Civil Rights Movement. Fifty years ago, America witnessed some to the most crucial demonstrations in the fight for human dignity—the Birmingham Children’s Crusade, George Wallace’s Stand in the Schoolhouse Door, and the March on Washington to name a few. I have committed my life to fighting for my daughters human and civil rights even if it means that I have to fight a modern day George Wallace or Bull Connor who presents him/herself in the form of a teacher, administrator, or superintendent. I refuse to let anyone “stand in the schoolhouse door” and block her access to the education she so rightly deserves. I will ensure that my child “receives the best education possible” and that she becomes a “responsible citizen, effective communicator, life-long learner, and “fierce competitor on the economic world stage”? I WILL speak up! I am my child’s voice!  She will NOT be The Forgotten Student!

Respectfully submitted by:

Mattisa Moorer

Parent of Kerstin Sanders

Lowndes County Public School student

Italicized taken from Lowndes County Public Schools Mission Statement

September  2013

   
     Did not think I would have to take these measures.  I hope all parents of children with special needs will realize that there are other steps available for you.  You have rights, Know them!  You have a voice,  Speak up!  Needless to say, contacting the newspaper, has gotten the ball rolling on things that should have been done years ago, and NOT just for Kerstin.  It should be done for all students and others with accessibility needs!  I will never give up, I'm an advocate for life!

     The newspaper articles are here and the first one here (scroll all the way to the bottom). 

Some progress made, still so much to come!

Before:

After some work...

So, in the midst of preparing, mentally, for my daughter's surgery, I HAVE to be a voice, can't sit idly by and let this continue to go on!  You know there's more to come...