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...

How do you prepare?

How do you prepare?  I've been asking myself that since last Tuesday!  How do I prepare, not only myself, but my daughter?  How do I prepare her for a third surgery in less than a year? NO child should have to endure this!  How do we get ready for the all the doctor's visits that are to come? The pre-op appointments with her orthopedic specialist and the new pulmonary doctor? How do we prepare for surgery day; the onslaught of doctors, nurses, anesthesiologists, specialists, etc... that will enter the room to introduce themselves before surgery?

How do I prepare for "several hours" of surgery?!?  Just the thought of that is so nerve-wrecking, to know that my sweet daughter will have to not only endure another surgery, but it will take several hours to complete.  I don't know how to prepare my child for, according to her doctor, at least another week in Children's Hospital?

This is a tough challenge we have ahead of us, one we can not avoid.  I'm so on edge and hurt by this because every surgery she's gone through so far, has been ones I thought could be avoided. They have been procedures that I thought I was doing everything for her to not have to go through them.  The February orthopedic surgery, I thought wouldn't happen because she was sleeping in her night time splints/AFO's, not every night, but even when she didn't sleep in them, she wore them the next day.  The March g-tube procedure, thought could be avoided by feeding her every three to four hours, buying lots of yogurts, apple sauces, mashed potatoes loaded with butter, my mom's homemade dressing, etc... This upcoming surgery...I  did what I was told, I put the scoliosis jacket on  Kerstin at night, and even after she didn't want to fall asleep in it, her doctor told me to make sure she wore in while she was relaxing on the sofa.  I did all of that! I still put the jacket on her, even after I thought she was pulling my leg and just didn't want it on.  Yet, her curve still increased!  She wasn't pulling my leg, we were told that the jacket had started to bother her.

How do you prepare?  How do I prepare?  The only thing I know to do is to stay prayerful, and know that she will be fine!  I'm trusting our Savior for that!

Psalms 55:22-Cast thy burden upon the Lord, and He shall sustain thee: He shall never suffer the righteous to be moved. 

Surgery day is coming...

We're getting so much support from family, friends and even strangers.  It's time now to mentally prepare myself for another surgery, and my daughter being in the hospital for at least a week later this fall.

It is going to be rough, this will lead to more appointments, follow up appointments and lots of trips to Birmingham...which is a 124 mile trip, one way.  I'm not looking forward to it, and it is going to be especially hard, since I no longer have a job, as of this past May.

I'm keeping my faith, I know the Lord will bless us, and put things in place so that we will not have to worry about the financial strain another surgery can bring.  All of this is for Kerstin, and her health! If you can, please make a donation to help us along the way.  It is greatly appreciated!

GoFundMe donations can be made here.

Dwolla Donations






Thank you,

Here we go again!

On Tuesday, Kerstin had her post-surgery, cast removal appointment with her orthopedic specialist.  We were excited, because her feet are looking good, healing fine, we just have to get her some school shoes that she can wear over the AFO's now.  Everything was going well, they didn't have that many patients, so the wait was minimal.  Although, I must say,  kept having a funny feeling about the appointment, before we left home, I kept thinking that I just did not want to take her. Even after arriving at the office, I was hoping maybe the doctor had to cancel for the day, I know they would have called beforehand.

We check-in, I was asked about the paperwork they mailed weeks before, to bring to the appointment...wouldn't you know, I completed the forms and forgot to take them with us.  Luckily, it wasn't a big deal, I redid the forms there.  Kerstin is called back, we talk with the nurse, Mandy,  about the spasms she's been having lately, I told her that I was also concerned with her leaning a lot when she's either in her wheelchair, Tumble Form seat or just seating on the sofa.  She was sent to ex-ray to get imaging done.  During the ex-ray I just had an overwhelming feeling that I wouldn't like the news we would get, yet, I was still hopeful.

We're back in the check up room, having playful convo, while I administer her bolus...in walks her doctor, file in hand. He spoke, took his seat in front of Kerstin, she never forgets a face, so she gave him that big smile, he rubbed her arm and spoke directly to her.  Exams starts, he stated she looks good in her AFO's and to keep her in them as much and as often as possible, he flexed her legs and said they looked good as well.  He even noted that her dislocated right hip has flexibility and show no arthritis.  All good news!  Then he looks at me and says, "Mom, we looked at her ex-ray and her curve has increased...she is now at a 50 degree curve..."  I think I stopped breathing!!! That's up from 40 degrees just in December.   He continued, " It's time now to talk with family, because we can't let her continue at this rate, without correcting the curve, when children get this much of an increase we have to do surgery so that it does not increase.  We don't want her at a point where she won't be able to even sit up in her wheelchair."  As always, I sitting there looking at this beautiful child that will have to undergo, yet another surgery, trying my best to hold back the tears that are burning in my eyes. " We also need to correct her at 50 degrees verses waiting to 75-80 degrees, and that surgery would be more intense and invasive, because she would have to be cut in the back as well as the front."  I'm trying to make sense of it all, even a day later...

We were also informed that, we are going to nee family friends donate blood for her surgery, they would give me all the directions for that prior to surgery. I asked how long would she be hospitalized for this surgery.  He said " Let's say surgery is Monday, she will be there at least until Friday or Saturday."  Another week at Children's of Alabama is in my near future, sigh!   He asked if Kerstin had a pulmonary doctor, no she doesn't.  He stated that was good, especially since she now has her feeding tube.  As he was talking, I'm thinking and trying to remember what is pulmonary? He told me that a pulmonologist is needed on the team because of the tube, to make sure breathing is fine, there will be heavy sedation for the procedure...he also said that the long stay is because they will have her on iv fluids, but they wouldn't want he too sedated to take her boluses, because of swelling/stomach expansion. Things went blank for me, I heard him, but it seemed like I didn't.   He continues on with reasons why it needs to be done in the next few months, pulmonary doctors don't like to have children having surgery when it's cold and flu season, the weather is too cold, because of the risk of them being in the hospital with sick children and them getting sick. I asked him if she could be fitted for another scoliosis jacket, and would it help?  He looked at me so somber and sad, he let out a sigh, and so it would not help at this stage. Devastated, because I was putting her jacket on her.  Like I said before, I thought she had started pulling my leg and not wanting it on at all.  He told me at another appointment that it was too painful for her.

 Doctor stepped out to get me the ex-ray image and said that his Nurse Mandy was going to talk with me about the pulmonologist and other things. She starts by saying that the new doctor will need to be seen a month before surgery.  I asked when does he want to do surgery, she said late September, October or early November.  I remember telling her, she will have just started back in school.  She said she understood, and we could do late October/ early November.  She said because if we do September we need to schedule the pulmonary doctor now.  So now, it up to me to talk things over, get family and friends to donate blood and let them know, late October or early November.

I'm not looking forward to the day!  Seeing this face, knowing she's about to go through something again, that no child should have to deal with, breaks my heart.

I looked at her and snapped this pic after her appointment.  I thought, "You have this beautiful smile on your face, after that appointment..." We ran a few errands and on our way home, I could not stop my tears, they were rolling down my face.  I saw her from the corner of my eye, looking at me...had to try and pull it together, no luck.  She eventually stopped and started back watch her movie.

I have faith and I know that this surgery will be a successful one as well!  I just can't help or control the feelings that this year of 2013, has not been kind.  If I could go back a couple of years...

Info:

"A Patient's Guide to Scoliosis" 

"Scoliosis and Rett Syndrome" 

"Scoliosis"

Video:

"Surgical Treatment for Scoliosis"

More to come...