Appointment Day!

     So with everything going on right now, I am embarrassed to say I forgot to post this blog.  I typed it, thought I posted it, but epic fail!  So for so many who have texted and messaged me about Cora's appointment results, I'm sorry, but thank you for your prayers and concerns.  Please read on to see how her appointment day at Childrens went.

     Tensions are high this morning as we begin our daily routine.  My mind is racing about Cora's appointment this afternoon, and unfortunately that has made me snappy.  Now that I have managed to make one daughter cry, and the other angry, we are now heading out the door to get our travels to school started.

     Cora is anxious for her appointment and nervous about a test she has this morning at school.  I have been moaned at, rolled eyes at, and now she claims this is the worst morning ever.  Oh yes, not looking good for winning Momma of the year!

     

     So fast forwarding to the afternoon, when I pick up Cora early from school.  She is now speaking to me, happy to be spending time with me, and can't wait to go to her visit at Children's Hospital.  Me on the other hand, well.......I'm still displeased with her actions this morning, and confused by her chipper attitude this afternoon.

      Upon arriving at our appointment Cora is in good spirits when she asks me again what all is planned for her appointment.  As I'm recapping I notice this crazy look on her face.  When I ask, she catches me by surprise yet again!  She claims that she doesn't want to do the echo.  She said last time it hurt so bad as they pressed on her and moved around her chest and neck.  I simply just looked at her, not knowing what to say.  She continued to express how the gel and the pressure she encounters is far worse than pulling those "stupid" stickers off her scars after an EKG.  I still said nothing but, my blank expression must have caught her attention.  She paused and went into defense mode.

     "What?  It hurts Mom, and I'm sick of them pushing and giving me orders the entire time."

I patted her hand, expressed I was sorry, and said I understood.  Really?  Understood?!  I have no idea what this poor girl has gone through.  I can't even begin to wrap my head around all the poking and prodding she has encountered since birth.  Emotionally, I have no clue what it has done to this sweet thing.  It pains me to see her flinch and grind her teeth when they apply pressure to her little neck.  When she turns to me glassy eyed with a look of help.  It literally breaks my heart into pieces.  I get these tests are important but, they are still inflicting pain on my baby!  Pain I can't make go away.  I can only look her in the eyes and tell her it's ok and she's doing a great job!  Watching a tear fall from her eye is like having someone take my babies and say you can't ever see them again.  It was another difficult moment for me to take in.  I had to bite my lip to keep my tears from forming.  

     So after we finally finished the ECHO, and moved onto the EKG I could see Cora's nerves were wearing thin.  I tried to keep her distracted but, it was difficult.  It is getting more difficult with each visit.

     As we sat waiting for the doctor to come visit and discuss the results, I watched Cora withdrawal into her iPod.  She was quite and didn't want to talk much.  I have learned with Cora, the music helps stimulate her focus, and releases some of her stress.  So we sat together in the little room, quite, and patiently waited to be visited by the nurse and cardiologist.

     Finally the time came and results were discussed.  I was on edge to hear the results, but tried to calm myself.  Cora's oxygen stats where in the low 90's, which is great for Cora.  The EKG revealed nothing new to be concerned about, which put a little smile on Cora's face.  The ECHO showed the same as her last appointment.  She still has a leak that doesn't close completely when her heart pumps, but it hasn't changed much because she hasn't grown in height much!  So overall the doctor was happy, and I was relieved that we didn't take a step backwards.

     The biggest obstacle we have now is getting Cora to take her medications.  Cora doesn't want to, and fights with me about it daily.  So the cardiologist had a nice long talk with Cora.  He was direct to the point explaining why each of her medicines must be taken multiple times daily. 

     I get she wants to be a "normal" kid, but without taking her medicine daily, she puts herself in jeopardy of becoming very ill.  Which could lead to something much worse.  She wants to be treated like a responsible young lady, but the fact that she either doesn't remember to take her medicine, or she just doesn't, has become a very sticky subject with me.  I want her to become more responsible but, not at the risk that she is sneaking not taking her medicine.  So the cardiologist and I are driving home the high importance of taking her medicine multiple times a day.  We'll see what the next few weeks bring but, I felt confident that the sturn talk her cardiologist had with her today, was heard by Cora. 

     For now I'll keep walking the thin line between giving her the freedom and responsibility, and the need to keep double checking her!

Blessings Until Next Time!

Drena

     

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 same......it 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!

Drena