Monday, February 23, 2015

Another Children's Hospital Appointment!

     Boy how time has flown by!  It is hard to believe it has been a year since Cora's yearly appointment at Childrens Hospital.  With her appointment just a few days away, I have begun gathering necessary items, and began  discussing with Cora what to expect.  Cora seems to do so much better if she is informed a bit in advance of her appointment and what is to come. Approaching it this way has helped reduce some of Cora's anxiety.

     Cora is such a trooper, since the time she was a baby, with everything.  It gets to me every time I listen to her talk about going to the hospital.  She has told me a million times, it's her second home.  That she feels safe, and not judged.  She says going to her visits make her feel like someone special.  Everyone knows her name and everyone is so kind.  Whether it's a 6 month appointment or a yearly appointment, the only thing she gets anxious over is the EKG.
Our last visit was difficult.  Cora cried after her EKG.  Her precious skin is so sensitive, and the stickies they have to put on her chest, arms, and sides are so painful coming off.  She always begs for me to be the only one to take them off.  As I do, I watch this poor little things body tense up as I work the stickers around her scars off.  She cries and tells me it hurts so bad!  I try so hard not to cry myself, because I feel so helpless.  Cora has expressed to me that she isn't looking forward to the EKG and asked if there was a way to skip it.  Unfortunately my answer is always the has to be done sweetie!

     As I'm recalling this something has hit me.   Those strange little stomach churns, and a few restless nights were really my signs.  But getting that stomach churning feeling again I get it.  I am  nervous!!  I am nervous of what these tests may discover, I'm nervous more things have declined  over this past year.  I'm nervous I may have missed something being logged in her journal that could be of help to her cardiologist.
In just a few short days Cora will go through her normal testing.  She will have an echocardiogram, x-rays, and an EKG.  After all of the testing is completed and reviewed by her cardiologist, he will then meet with us and share the results.  For me that's the most difficult.  Listening to the new information, trying to process each piece of information given, then explaining it to my daughter.  As she has gotten older, she is more acute to what is going on with her health and her condition.  Sugar coating things isn't easy now, because my 14 year old warrior princess is getting pretty good at read between the lines!

     As Cora grows it seems to become more difficult for me to be strong.  I have always kept that strong outward image for my family as well as myself.  Beginning this blog has helped me reconnect with emotions I buried many years ago.  I have grown, and continue to grow and learn.  Thankfully God gave me a wonderful gift, writing.  The bonus.......God gave me the ability to share with all of you!  My friends far and near.
     So as this appointment nears, I will lean heavily on my faith.  I vow to also continue to strive to be open, sharing my emotions and the results of this up coming appointment.

Blessings Until Next Time!

Tuesday, February 10, 2015

CHD School Advocating-Part 1!


     From the beginning of Cora's school career I knew there was a good chance she would need some type of help learning.  In Kindergarten I could see signs of some social struggles.  At the time, I figured it was just the learning curve for 5 and 6 year olds.  When Cora entered the first grade I began to identify Cora's comprehension struggles.  After seeing this I began to see her struggle with her numbers in math class, as well as not understanding directions on her homework sheets.  Honestly it just appeared out of no where one day.  Since that day I have been advocating for this sweet thing and her right for a good education.   

     As Cora continues to get older, class settings are changing.  Things are increasingly more challenging daily for her.  She is encountering more classes, more responsibility, having to be organized, and self sufficient with time management and memory.  For Cora it is pure stress, fear, anxiety, and melt downs on a regular basis.   For me, it is a time to put all my ducks in a row!  To begin educating all her teachers about her current IEP, and her additional diagnosis through Children's Hospital.  This is crucial for Cora's school career success.  Is this easy?  Absolutely not!!  It is literally starting all over, every year, as if they don't know Cora.  It is spoon feeding information to the IEP teacher(s), as well as her individual teachers.  It is being patient yet stern at the same time.  It is listening to 6 teachers try to tell you they know your child better than you.  It is a constant tug of war, remembering and reminding we are all here to do our best for her education.  IT IS SIMPLY  EXHAUSTING!
     Each new school year brings another year of educating the educators.  As much as the children look forward to summer, the more I do not!  Not because I don't want my children around, it's just the starting over at the beginning of each school year that gets to me! The end of the school year wipes out all the work a CHD parent does in advocating throughout the school year. The slate is wiped clean and starting over is inevitable!  But, through the years I have learned a few things.  Some things that I learned were touch lessons, while others came through God's grace.  

     Soon my CHD daughter will be headed off to high school wanting to be just like every other person in high school.  Educating starts at home, teaching your CHD child, and then armed together we will be ready to join hands and encounter another big, new change called high school.

     Please look for part 2 of CHD advocating in the school.  I will share 5 things I have learned over the years having a CHD daughter with an IEP.  Plus a few tricks to make things go a little more smoothly.  If we join together not only will be spreading CHD awareness, we will be paving a better path for those sweet little CHD children yet to come into the educational school system!

Blessings Until Next Time!