"Parenting a Child With a Disability Through the Holidays Stress Free"

     The Alabama Parent Education Center (APEC) has some tips on avoiding additional stress during the holidays.

While most children live for the holiday season, it can be an extremely stressful time of year for children with disabilities and their families. The disruption to their routine, unfamiliar sights and smells, the house full of noise and people - it can all prove to be too much. Holidays are all about the family, but it can be hard keeping everyone happy.  While the words "stress-free" and the "holidays" don't often go together, at the Alabama Parent Education Center we want all children to enjoy this special time of year.

Tips To Prepare

To help you prepare for surviving the holiday season, we have compiled the following tips to help you, your family, and your child with a disability have a much happier, reduced stress holiday.  Good preparation is the key so here are a few tips to help you prepare yourself, your child, and your family.

Reduce The Stress.  Try to find ways to reduce the stress - both on your child and you. Schedule in quiet times and create chill-out zones in your home. Remember, your child will pick up on your stress levels, so try not to over-stretch yourself.

Ask For Help.  Friends and family may not know how they can help unless you tell them. Give them a list of things they can do to support you - from looking after your child while you spend quality time with your other children - to helping you finish the holiday meal.

Wrap Up Familiar Toys.  If your child is not keen on opening presents because they're new and unfamiliar, try wrapping up some favorite toys. Sometimes unwrapping something familiar is very reassuring.

Give Your Child A Job And A Schedule.  Always give your child a job to do at family gatherings.  Giving them something to do reduces their stress of having people in the house. I also give them an itinerary so they understand, for example, that people stand around and chat a lot, and that is part of the occasion.

Manage New Smells.  Add cinnamon to your child's play-dough to gradually introduce new smells. One thing that people with autism complain about during the holidays is the many different perfume smells coming from visiting adults. Ask your family and friends to hold off on the perfume.

Work On Gift Giving.  Help and encourage the person you are caring for to give gifts. This provides an excellent opportunity to work on social skills, like thinking of other people's needs and interests, and being kind and helpful. Support your child in making gifts for their family and friends and assisting them in giving out the presents as well.

Reserve Some Special Time For Your Child.  It's easy to get overloaded with festive preparations at this time of year, so plan daily activities to make some special time for your kids - ie. 5 to 10 mins of undivided attention. Let your child take the lead, tune into their world and see it through their eyes.

Create A Weekly Calendar.  Print off a week-to-view calendar page from your PC or the internet and add a picture of your planned activities during the holidays (divide into morning, lunch afternoon etc) and this will help put your child at ease about the week ahead.

Prepare Your Family.  Talk to family members ahead of time. Discuss your child's specific needs, and gently but firmly tell them what your plans are. Be sure to let them know that this will make the whole experience better for everyone. Ask for their support.

Prepare A Bag Of Activities.  When you are visiting friends or relatives, fill a backpack with things your child finds comforting or enjoys playing with - toy cars, a stuffed animal, a CD and CD player, ipads, or a few books. If your child gets over stimulated, find a quiet corner or a back room and pull out the backpack.

Easy To Open Presents.  If your child has trouble with fine motor skills doctor their cards and presents to allow them to open easily. Makes for a much happier time for all and gives your child a sense of satisfaction that they can complete tasks.

Have a Code Word.  Have a code word your child can use if he or she feels overwhelmed and needs a break. Assure your child if he or she uses the code word, you will respond right away. Again, giving children some control during activities that may be over stimulating for them will reduce anxiety.

Prepare Before an Event.  Before you leave for holiday parties, parades, or other fun events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit neuro-typical children as well, since any child can get overwhelmed with the excitement of the holidays. Continue to make your child's sleep schedule a priority, even in the midst of so many special events.

Prepare for Food Allergies.  If your children have food sensitivities or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Children with neuro-behavioral disorders like ADHD or Autism often already feel different, so be sure to include them in as many holiday festivities as possible.

  

 Limit Holiday Decorations.  If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holiday distractions, while enjoyable to most, can be too much for children with autism, ADHD, or sensory disorders. Let special needs children help you decorate for the holidays so they are involved in the changes that take place in their comforting environment.

APEC is here to help

APEC provides free training, information, and consultation to families.  Visit our training calendar for more information about learning opportunities at www.alabamaparentcenter.com  or call our center.

The contents of this publication were developed in part under a grant from the Alabama Department of Child Abuse and Neglect Prevention.   To help support the ADCANP mission visitwww.ctf.alabama.gov.  Parenting  V.2

To view our updated list of all training events visit our online calendar at:

http://alabamaparentcenter.com/events/calendar.php  

What is Self-Contained? How would you handle it?

     I often wonder how many parents actually give that a thought.  How many whose child(ren) have special educational or healthcare needs actually know what a "self-contained" classroom is all about.  Oftentimes, these classes are called "special classes", the "special ed[ucation] class".  At the same time they are looked upon negatively. 

     In my research and coursework, I recently read something that made me think about Kerstin's school.  "Many of the students who were in special education were often isolated in the least desirable locations within the schools" (Losen and Orfield, 2002).  Previous posts and letters submitted to the local paper can attest to this being a sad reality in my daughter's school. 

     Special education classrooms or the self-contained classrooms are defined as: 

 Self contained classrooms are classrooms specifically designated for children with disabilities. Self contained programs are usually indicated for children with more serious disabilities who may not be able to participate in general education programs at all. These disabilities include autism, emotional disturbances, severe intellectual disabilities, multiple handicaps and children with serious or fragile medical conditions.


These classrooms are NOT designated to be an afterthought, a catch all storage area, a place to put students because they have behavioral issues.  There are areas for all of those.  They are called an actual part of the school environment, a storage closet and the behavioral management classroom.  If that type of class is not available, maybe one should be invested in.  


     While wondering what other parents knew and thought of the self-contained classrooms, I also wondered what would happen if others, particularly the decision-makers had to spend a day in these classroom that are placed in the "less desirable parts of the schools?  Can you imagine that?  I cannot count the times I've pictured the special education coordinator especially and maybe even other school board and leaders, having to use a wheelchair and not being able to get out of the chair unless it was the for purpose of using the restroom.  How would you handle it?

     How would you handle an entire school day in a wheelchair with no other seating option in the "self-contained" classroom?  Bean bag flattened and no longer supportive for a child with little to no trunk control.  How would you handle being segregated from your peers and not interacting with others that do not have a disability or special educational need?  

     I don't think that would be a comfortable feeling!  I'll say it again, my daughter does NOT live a self-contained life and she will not attend school and on a daily basis be expected to do so there.  

     Please do not misunderstand me on this.  The classrooms are needed!  They need to be an environment that is conducive to learning and tailored to assist with the needs of the students that they are there for.  Not an afterthought!


More to come...

Change the Changing Stations!

     You cannot count the times you've been out with your family whether, it was shopping, dining, appointments, entertainment or whatever, you've needed the restroom!  If you haven't that's a new one!  If you haven't it is a guarantee that your little one or the little ones you're traveling with have needed the restroom.  It is a part of life.  Whether it be a newborn or an elderly person...the restroom break is inevitable.  

     For many of us, we are raising children with special needs.  Those needs include having to be changed!  This is NO easy feat when the person needing to be changed is well over the height and weight limit of the very popular "Koala Kare" changing stations that are readily available in almost every restroom I've been in.  You've seen them.

AMC Theaters-Montgomery, AL

Therapy

     There in-lies the problem, the big issue!  Babies and infants are NOT the only people in our society that needs the changing stations or access to a public restroom.  We have preteens, teens and even adults that cannot go into the restrooms and use the toilets or the urinals, my preteen included!  

     I wish you could see the acrobatics I perform when I am in the restroom changing a 75 lbs/ 4 feet whatever inch on a changing station that is only designed for a baby.  I'm usually standing on one leg because my knee is under the station for extra support!  I'm leaning to her chair for her toiletries at the same time keeping a hand on her so that she doesn't come off the side!!! Some of they are higher than others making the process even more challenging!

     I know that something better can be done!!  We have so many family restrooms now.  They too, are available almost everywhere I've gone lately.  I know an adult size station can at least be placed in those restrooms!  Our families deserve that and the privacy!

  

Changing area at Children's Rehabilitation-Montgomery, AL

CRS-Montgomery, AL

     I know a simple table or cushioned bench is not hard to place in restroom and place a simple accessible sign above it is not expensive!  Next stop, Americans With Disabilities Act (ADA).

More to come...

Not all moms share the same secrets.

     I recently read an article from 2013, posted by a mom of a child with special needs.  The article was supposedly her list of secrets and titled "6 Secrets Special Needs Moms Know But Won't Tell You".  While I can't help but agree with some of the listed "secrets", some I cannot really relate to or just from a different perspective.  As parents, we all do things our own way and raising our families is one of those things. 

     Mom, Suzanne Perryman, in the article listed her 6 secrets and gave her reasons for them.  Her list went like this:  

1. Special needs moms are lonely
2. Special needs moms have to work extra hard to preserve their marriages
3. Special needs moms are not easily offended
4. Special needs moms worry about dying
5. Special needs moms are fluent in the transforming body language of touch
6. Special needs mom know how to savor the gift of a child saying "I love you"

I like Suzanne's list, and like I stated some I can relate to and some I cannot.  
     "Special needs moms are lonely", I can relate, at times it seems like no one fully understands what you are dealing with.  Taking care of a child who needs you for every single thing, doesn't give much room for other things or a very active social life.  The loneliness is especially harder since my job is with her at her school as her aid.  Sometimes even family tend to go their way socially and leave us in our own world.  Yet, they come back to "talk" about it all.  It may take us longer to get prepared to leave, once we do, it may take longer to load and unload but, we like being on the go.

     "Special needs moms have to work extra hard to preserve their marriages", okay!  I'm a single mother.  Kerstin was diagnosed and her dad walked away!  Yes, I have attempted to work hard to preserve relationships.  Even when love has been expressed to me and my daughter.  I guess when we can't always be on the go like others, it makes it a little bit easier to walk away and pretend we never happened.  That is one thing I cannot and will not continue to do, try to keep someone in our lives when they don't want to be here.

     "Special needs moms are not easily offended". I think that all depends on the emotions, the day and what's being said.  I am very easily offended by ignorance. Do I get offended when people ask questions about Kerstin, her diagnosis, her likes or dislikes?  Not at all.  What offends me are the stares.  The "what's wrong with her?"  Nothing is wrong with her, she's made the way she was intended to be made.  I like when I'm asked questions because you are genuinely concerned.  I think the more I can help someone understand, maybe the less stares she will get.  I am all about educating those we encounter, from the youngest to the oldest. 

     "Special needs moms worry about dying".  This is true.  I must admit that at times I have had very selfish thoughts about death.  I even wrote about Life Expectancy recently.  I often wonder what her life would be like if I passed away "now", before her.  I have even found myself praying that we go at the same time, that way I won't have to live and carry on without her and she wouldn't be without me.  Death is that one thing that is certain for all of us and we don't know when it will happen.  We just have to live each day and love like there is no tomorrow.  

     As far as special needs moms being fluent in touch and body language.  I know I have to be.  My daughter is non-verbal.  I have to notice her behaviors, her facial expressions and all.  She has a language all of her own. 

     "Special needs moms know how to savor the gift of a child saying "I Love You".  Again, Kerstin is non-verbal.  Her smile and those big beautiful tells me that she loves me.  When no one else is talking to me, my little love is a constant!  Feeling her arms around my neck is "I love you" enough for me.  Check out my Facebook update back in May.  It's moments like that, makes all of this worth it.  

     So, we all have secrets, we all have fears and we all deal with them differently!  One thing is for sure, we have to love our children, no matter the need or ability!

In all her tiredness, she enjoyed!

Suzanne Perryman, 2013.  6 Secrets Special Needs Moms Won't Tell You.

50 Shades of Hello!

SPEAK!  I will respond... 

      When you are out and about and see a person with a disability do you assume that because they look a little different, they use a wheelchair, they are non-verbal or are blind, they are not worth the effort of a simple "hey"?  Do you stare? Does your children stare?  Do you tell them that it is okay to speak to that person?  Do you speak yourself? When you see a person with special needs, do you see the person or the disability? 

     You know there's a saying that a smile can brightens someone's day?  A simple hello can do the same.  I often think about a song from "Yo Gabba Gabba" that says something like "no one wants to be left out, everyone wants to be included..."  That is so very true!  That is also the case for families, work, school, and community.  No one wants to be left out, or treated like they don't exist. 

     I believe that children reflect their home surroundings before anything or any other influence.  Personalities come early!  I try to speak to everyone I come into contact with.  Verbal or just a head nod or smile.  It could possibly be what someone is needing at that time.  

     Speak to Kerstin, she acknowledges everyone she comes into contact with.  She has not hearing or vision problems.  Ask her her name...we're working on getting her to hold a conversation with her Dynavox, until then, "Mommy" will tell you for her!  Talk to her! She looks UP for yes, she looks away for no and sometimes manages to verbalize or shake her head no.  Speak to her if nothing else.  She is a person too. 

     Hey, Hi, Hello, Hola, Ni hao, Bonjour, How's it going? or a simple kiss on the hand.  My 1 year old niece is adament about kissing Kerstin's hand every single time she sees her.  Now that she is talking she comes over and is speaking to Kerstin before she walks into our home, she makes her way to Kerstin and kisses her hand.  

     She seems to know that Kerstin can't verbally speak to her, but the smile says it all without a word being uttered.  It's love! It's an act of kindness.  Tell others, disability does NOT matter!  It's okay to say "Hi"!


 "A person's a person, no matter how small." ~Dr. Suess
    

Changes...again!

     It is rare that Kerstin has a visit to Children's of Alabama without something changing.  Change is good, right?  I skeptically say "Yes", when things seem to be going in a good direction.  So, we were back, for another follow up, our second trip in less than a month.  Cannot forget that she has another...in less than a month.  

     This was a follow up with her pediatric surgeon...g-tube follow up.  Beautiful day, beautiful weather (a bit warm, already).  I must say, that I am very thankful for safe travels to and from.  I told my sister on the way up yesterday, that it seems almost scary that I can drive those 124 miles one way and it seems like nothing now that it's been done so many times. The things we do for our little ones.  

     Happy to report that Kerstin is continuing to gain weight.  In fact, she has gained so much that we had to see the nutritionist again to make more changes to her feeding plan and schedule. 
Her current weight is 72.38 lbs!!! March 28, 2013 before her g-tube surgery, she was only 34 lbs!  I have previously vowed to myself, that Kerstin was NOT getting a feeding tube!  I had heard so many stories from other parents along the way, stories I won't even share.

     At her appointment yesterday, I realized that this surgery has saved my daughter's life.  I can't remember the speech therapists name that assisted with her swallow study March 25, 2013, but I'm thankful she called me and calmly talked me into coming back inside the hospital to have her admitted! 

     I was so scared and couldn't see for the tears that filled my eyes but, I'm glad we turned around!  I know her doctor, we see him every six months.  Dr. Martin was so patient and so calm with this antsy, nervous and confused mom, that he asked if I had questions and actually stood there while I rambled through questions.  I was assured that we would not leave the hospital before I had information and training.  That training came in the form of pop-ups on the room TV and one on one with his nurse. 

     Kerstin has gained so that her feeding tube was getting too small so she had to have a larger one.  She went from 14 Fr/1.2 cm to a 14 Fr/1.5 cm tube.  No, I have not changed a tube yet, it still seems a bit odd and uncomfortable to me to see that little "unnatural" hole in her little belly!  But again, I'm thankful that I have sister that is happy to put her nursing skills to work and change them for me.  

     Now, to the feedings, her overnight feeds have gone down from 300 mL over 10 hours to 192 mL over 8 hours.  Her water intake is gone up from 60 mL per bolus to 120 mL.  Her nutritionist suggested the new schedule/ rate change since she has gained weight, and needs to maintain where she is for a while.  She mentioned that it is somewhat unnatural to eat while you're asleep and that is when your weight is gained.  I think she will eventually work up to not needing the pump at all overnight.  Fingers crossed!  So, for now, she will have a very wacky schedule for a while.  One that I will have to get very used to.  As with everything we're gone through and had to endure, we always conform.  

Received some great products in the #UnivoxBox

One of those products used to write a note to my HERO!  #PenItFFwd

*Products received for free from Influenster, so that I could try and review them.*

More to come...

Wordless Wednesday- April 30, 2014

The Thoughts of Others.

     Last month, Kerstin and I were entered in a contest hosted by a local photographer.  She wanted to feature people that have faced challenges in life.  Kerstin and I were nominated because of the year we have had, and at the time her surgery that was right around the corner.

     Well friends and family secretly nominated us and we were treated to a beautiful photo session.  Felecia and I talked on the phone in order to make arrangements for the photo session and she continuously told me that she could not wait to meet me in person because she really enjoyed reading the nominations.  I was curious and told her that I could not wait to read them myself.

    Well, the blog posted and once I read the things family and friends submitted bought me to tears!  It is such a blessing to see that so many people notice the things I do everyday.  I don't do them for the attention and nominations, I do them because I have to.  Kerstin and I were placed in each others lives for a reason.  I know that I have to take care of the blessing God has place in my life!!

     I hope that you will read Felicia's blog post, Felecia's Spot "November", be sure to scroll down to our story, "Beautiful in My Eyes".  I know you will enjoy it!  Here are some of the beautiful photos we took that day.  It was an outing for us, it was the Saturday before her surgery, we were on our way to the movies to see "Free Birds".  Enjoy the photos and be sure to check out Felecia's blog and website.

We are a team!  In it to win it, whatever life hands us!!!

*All photos are courtesy of Felecia's Photography*

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...

Surgery!

Well, February 28, 2013 came quickly and has gone just as fast. At Kerstin's December 2012 check up with her orthopedic specialist, we were told that she may need to have surgery soon on her feet.  Doctor told us that we didn't want her getting to a point where she wouldn't be able to comfortably wear shoes with them rubbing the bony part of her ankle and start to cause callouses, and we also didn't want it getting to a point where nothing could be done or the procedure would be extremely invasive.

So, about a month later my little princess was chilling on her bean bag after therapy and I noticed that her feet looked really odd, thinking and wondering if she was uncomfortable, hoping she wasn't.  I emailed pictures to her physical therapist, saying that she was not fussy about the position and it didn't seem to hurt but it just did NOT look comfy.  Therapist emailed me back, rather quickly, said that she was sending the pictures to Kerstin's ortho doc/nurse and that she was thinking we had put the surgery off long enough and it was time to go ahead with the surgery!!! I had to walk away from my daughter, I left her with one of teachers and went into the restroom, I could not stop the tears from falling.  No one wants surgery, especially when its needed for your child.

After avoiding this procedure it seemed as if surgery day came fast.  We had to have Kerstin at the Benjamin Russell Hospital for Children at Children's of Alabama at 5:30 am, which meant that we had to leave home at 3 am to make the two hour drive to get her there on time. It was such a quiet and chilly morning, we were surrounded by a lot of people that love, care for and support Kerstin.  If they couldn't make the trip, we had tons of texts, Facebook messages, emails and calls.

Prepping for surgery!  It seemed like every minute someone different came into surgery prep room 30, to tell us who they were, what their roll was in caring for Kerstin. We saw an orthotist, anesthesia tech, anesthesiology, nurses, and her ortho specialist. Didn't know that anesthesia came in so many "flavors".  My moment of tears came when her nurse came and said to me that she was Kerstin's OR nurse and she would be taking care of my princess this morning, and that they were headed to  the operating room.  My heart seemed to skip a few beats to watch her take my daughter down that hall without me!

After 3 hours of surgery and recovery, my princess came out with her pink and purple cast and tubes for drainage.  She looked good, just sleepy, her mouth was dry from the gas and tube they used during surgery. She was still numb from the nerve blocks they used to keep from having to give her so much narcotics right after surgery.  The procedure: Bilateral Triple Arthrodesis ( more info here ), had been performed successfully on my daughter.  Doctor said that he had to lengthen tendons/heel cord more on her left foot and that she would be more sensitive about that one ( that has proven true ). 

Heading home, once mommy figures out how to maneuver and handle her newly rented wheels! Kerstin was sent home with a rented wheelchair because her legs need to be elevated as much as possible and especially when she's mobile ( in a wheelchair ).  We figured it out and we set out for home.  

Happy to be home, sweet home! Blessed that she is a tough little fighter.  She tolerates her pains well and on Saturday didn't need much of her pain meds.  This Sunday morning was not the case though, she actually cried from her pains.  Made my eyes well up, but I held up.  I don't want her to see my cry, especially not when she's still sensitive about what has gone on with her feet.  I do believe and have faith that in just a matter of a few short days my princess will be fine and able to move her legs again without the pains she's getting when she moves them now. She has so much strength and courage, I wish I had the fight she has in her!  

More to come...

I CAN'T...

     What a title, right?  Especially when we are in a day and age when "can't" should NOT be an option for us nor our children.  I've had this on my mind for a few days.  I'm always hearing other moms talk about what they can't get their children to do, how they are constantly telling them to go do this, or go do that. I hear them talk about how it's hard to get them out of bed for school in the morning and how they just won't shut up, clean up or whatever it may be.  I sit back and reflect what it would be like for ME to have to constantly stay on Kerstin about getting dressed, taking a bath or cleaning her room.  How it might feel to tell Kerstin to be quiet. I can't!

     I can't tell Kerstin to get up and get dressed, I have to do that for her.  I can't tell Kerstin to clean her room, she doesn't mess it up, even when her cousins visit, they clean it or I'll do it.  I can't tell Kerstin to go to her room, unless taken, she's not able to voluntarily. I can't tell Kerstin to be quiet, her coos, aahs, babbles and laughter is music to my ears!  I could go on and on listing the negative I can't's...there is no point in that.  After 10 years on this journey, my life has changed for the better.  My eyes, heart and mind are opened to new and challenging things.  I've been forced to learn about things I had once never given a thought. For that, I am THANKFUL to God!!!

     There are some things that I know I definitely can't have...I can't let life go by for Kerstin and myself! I can't let or allow my daughter to be sheltered from LIFE.  I can't let Kerstin's disability stop her from being a child.  I can't let society and certain "professionals' tell me what's best and right for my child.  I can't let negativity and ignorance keep me from enjoying my daughter and her enjoying LIFE.  I can't let anything or anyone stop her from making strides and progress!  I can't let a diagnosis determine her boundaries...the possibilities are endless...life is to be lived and enjoyed!!!

Another day...another weight check...

Wow, it's really been a month?!?! Sorry, it's been so long!  I have bee working and praying, seeking ways to get my daughter's weight back up.  I am convinced now that it has to be the medicine she is on for seizures.

She had yet another weight check today and is down a few more ounces from September 9 =(   This is heartbreaking, especially when the nutritionist keeps bringing up "feeding tube"..surprisingly I had the strength to tell her out right today, " No feeding tube"!!!

I'm on a mission now, (1) to get my daughter on another seizure, one that will not cause weight loss and loss of appetite (2) find all sorts of pureed meals and recipes that are high in calories  and (3) GET MY DAUGHTER'S WEIGHT BACK UP!!!

More to come...

Scoliosis jacket/ night time splints update

Progress has been made, finally got the little darling to sleep ONE full night in her jacket!!! YAY!  I really think it was by accident on HER part.  She was sleepy and it was going past her bedtime when I put it on her Tuesday night ( 6.7.11 ), I was so elated that we got a full night.  She had other things in mind, because since that night she has NOT made a full night again, luckily we had and ortho appointment this past Friday, and he said that the jacket is doing its job, when she's in it, her 19 degree curve was down to under 5 degrees, shown during her x-ray!!  Happy about that!  I asked if it was okay to have her wear it during the day while she's home lounging, to get her acclimated to it...YES!  So, we shall see!

On another note, the night time splints, which we've had no problems with getting her to sleep in, rubbed her foot Tuesday night causing a red spot on her heel that still hasn't cleared, but the ones on her ankles have.  Dr. said to not put them back on until that spot is gone.  He stated that she moved around a lot that night causing the friction,and with her skin being so soft that caused the bruising. So, as you can see, its constantly something, but as always, we're pressing through it!!!

More to come...

Update

On April 1, took my princess to be fitted for the scoliosis jacket she will have to sleep in along with the night-time splints, her new 'required' night time gear! :-(  I am not sure how she's going to tolerate having to sleep in all these extras, especially with hot weather approaching.  We are going to make the most of it and do the very best that we can, as always!  Making strides with smiles on our faces!

Once the jacket is complete, her ortho specialist wants an x-ray of her in it...hopefully this can be done in a facility near us, so that we won't have to make the two hour one way drive to the hospital he practices out of.  

More to come...soon :)