Sunday, September 28, 2014

Fragile Emotions Part 3---The Diagnosis!


     As I sit down to write this post I am still processing everything.  It has been a little over a week since my husband and I met with Children's Hospital clinical doctors and discussed the new discoveries and diagnosis for Cora.  
     To be honest I feel some sadness.  I look at this young lady, my sweet daughter, and try to envision what her world must be like daily.  Knowing I can't take away all the issues makes me feel some days well........like I am letting her down as her Momma.  Now we come face to face with more obstacles and hurdles.  Recently learning as she continues to get older these obstacles and hurdles will grow with her.  So what is a CHD parent to do?  I pray!!  Depending on God to supply solutions, tools, faith, strength, and courage for Cora and us.  This is the only way I know.  Tackling life with Cora has been a challenge from the day she was born, but without our faith we would be lost souls meandering through life!

     So many of you know Cora's original complex birth defect and diagnosis. ( If you don't feel free to check out my post titled Cora's CHD Complex Diagnosis). Her list continues to grow as she gets older, and the challenges to teach her how to cope are more apparent.  I only want the best for my girl, but I have felt so overwhelmed with what has been put on our plate.  Just recently have I been able to sift through each piece and really get a hold of it and what it really means for Cora.  I stress this because though it may not be a big deal for someone to read her additional diagnosis living day in and out with an inconsistency can take a toll on each individual and a family as a whole.
    With all that being said I open up our lives once again to share in hopes that as Cora and I face these things together you will journey with us learning and spreading more awareness.

Cora's additional diagnosis:

Severe Anxiety Disorder:  This is layered. It involves academic, social, and daily executive functioning.  So the best way to explain it is she has anxiety all the time but is easily heightened in the above situations.  My poor girl hasn't learned how to cope with this but has faced it everyday for quite some time.

ADHD:  This was diagnosed last year.  However results from her recent testing, at Children's Hospital, indicated it has increased in intensity daily for her.  Resulting in additional issues.  For example more difficulty focusing on tasks at hand and following in pace with the class.

So now what you ask?  Now we educate Cora and ourselves so we can learn the treatable ways to help her.  We pray for guidance and mercy.  But above all else we show Cora love through patience, guidance, and lots of hugs and kisses.  This new chapter is just beginning and you have my word I will document and share out steps and journey together with each of you.  The more educated we are, the more we can help others.

Blessings until next time.
Drena

 

Friday, September 19, 2014

Finding Balance with Gadgets & Gismos!


     In this day in age what child doesn't own some form of electronic?  Until recently I didn't realize how disconnected from daily life our children were, until rules began changing in our home.  
     I know siblings don't always get along, and I completely get that each has their own opinion.  But living in our home over the last few months has become war.  They bicker over everything.  They don't even try to find common ground.  Oh and don't get me started on the disrespect they have going on with each other.

     Since kayos had erupted in our home my husband and I took all electronics away.  Everything else we had tried was falling short, so we knew this would grab their attention.  I was amazed at how difficult it was for my girls to entertain themselves, without an electronic.  I admit I have failed in limitations in this department.  Knowing my CHD daughter, Cora, is more limited, this has been an easy fill.  From those days that have been to hot and humid for her to be outside long.  To those days she doesn't physically feel well.  I have simply allowed her to occupy her time with electronics.  Now that could really be anything in our home because we are the capital of Electronicville!  We have big screen TVs, PS3, Wii, kindles, iPad, MP3 players, Mom's cell phone to text friends, and probably more that I can't think of right now.

     Seeing my girls unable to function to entertain themselves without something electronic, was disturbing to me.  I was completely shocked to learn that they had no idea how to occupy their free time.  So I began guiding them with ideas.  Every time they stated they had nothing to do I gave them 3 ideas.  Let's just say at first it wasn't a big hit but, now they are warming up.

     The no electronic rule has been in effect for a little over a month now.  After one month my husband and I sat down and reviewed their behavior.  After one month it's astonishing to see how the tension and aggression has decreased.  Now don't get me wrong, they still have days where they bicker and can't stand each other.  However now they are fewer and not as explosive.

     For now the girls have been rewarded with 30 to 1 hour of TV several times a week.  This is at parents discretion and the girls have dealt with this very well.  We did try a day reward with some kindle time.  That was an epic fail!  They aren't ready for that yet.  Learning their moods can be altered so severally by electronics is so unsettling.  So we have decided our next step is to review what games they have and what may cause these unkind rude behaviors.  In the mean time they will continue to discover and explore new things to do with their time, and continue enjoying board game nights!  After all there was life before electronics!

Blessings until next time.
Drena