Cora gains another word

Cora has again found her feet on solid ground.  With the recent change in medicine her little body finally adjusted and seems to be again on the right road for healing.  She still struggles with the swelling in her hands, but at least the swelling in the rest of her body has subsided.

In fact, these past few days Cora has been once again her active crawling self.  I continually had to keep her out of  whatever appliance wires she could find and away from Edenpure heater.  In defeat and frustration on Cora's part I decided to purchase a portable play yard for the living room. 


Cora let me know how much she disagreed with this decision!  Finally, she saw the reasoning behind it and started to play with her toys.  She played with her toys and babbled her baby talk.  I sat watching her and again was filled with awe at her growth.  Because while I was watching, she began to talk to her baby doll  and she suddenly looked up at me and signed "baby".  A new sign for Cora!

 Yes, she is definitely continuing on her journey and today it is filled with peace and comfort.  The kind of peace that shows in Cora's casual play and is felt within a mama's heart.  Despite the hardships, the struggles, the little scares and the momentary set-backs, it continues to be a blessed journey for us both...and in truth, I am ok with that.  After all, Cora continues to teach me and I am not too old to learn!

The Equipt

This one is going to be short today.  Friday found Cora at the pediatrician's office for a check because she had gained 14 ounces of water weight after the last adjustment to her meds.  By Friday she was already losing that water weight, because of one of the medicines being added again to her regime.

During the conversation I voiced having had a moment of questioning during the past week.  A moment of watching Cora struggle and wondering if I had what it takes to make this journey with her.  Sometimes, as her mom, I am filled with that concern.  I think and feel and know that it is a normal emotion ( I have felt it with all my children at some point in their lives ).  Yet, in that moment, when I was feeling that loss of stability and seeing Cora go a little backward, that feeling of  "what now and what next" totally absorbed any amount of positive thinking I could muster.

I later received an email from my friend, Cora's doctor, and I wanted to share the quote with you.  In reading this simple phrase it put it all, once again, in perspective for me.  I hope in sharing this with you today it touches your heart and soul the same way it touched mine.

With feet back on solid ground Cora and I share this with you...

" God does not Equipt the called,,,He calls those that are Equipt!"

Cora's little setback

This week found Cora getting another medication adjustment.  The Pediatric Cardiologist is trying really hard to get Cora's meds down to zero doses every day, and this has meant making a few adjustments along the past few weeks.

She was doing well with the adjustments until this past weekend.  You could tell that Cora wasn't getting as much medicine as usual and the later part of this past weekend Cora was uncomfortable.  The weekend was spent trying to console a cranky and unsettled Cora.  Anyone who has had the pleasure of meeting Cora and spending time with her knows that this is not the usual Cora mode of operation. 

Cora was indeed in a little distress.  Not much, but enough to keep her agitated and not her normal self.  If she wasn't in super high gear, she was fussing and twisting her torso.  Her little feet were a yellow color in the mornings when I got her out of bed. Cora's tummy was bloated to the point of being extremely distended, her hands were puffy and she was coughing steadily throughout the day. Her appetite had decreased and we were waking her up from her afternoon naps (three and four hours long) instead of her waking after an hour and a half.

Monday had us in the doctor's office checking things out.  After the exam , Pickford Medical felt that Cora was retaining water and was definitely uncomfortable.  I walked into the clinic knowing that Cora was not herself, and I walked out of the clinic feeling even more dejected.

I spent the early part of this week waiting for a call back from Dr. Statler and then Dr. Webb.  Finally, yesterday, Dr. Webb made an increase in one of the meds that we were weaning Cora off of and so far things are looking better.

Life is like that, we go along and are sailing on smooth waters with our face into the sunshine, when all of a sudden a little cloud will cover the sun and a drizzle will rain down on us.  Its how we face these discouragements that can increase our discomfort or help us to find the positive moment in even the strongest downpour of rain.  I looked for my raincoat this week and finally found it in Cora's smiling face and eased temperament.  I found a hood for my raincoat in the love from my heart sisters, their encouraging words.  I even found some rain boots when I asked the creator for an ease in my worry.

I admit that I have struggled this week with the disappointment of knowing that Cora, despite all the progress she has made, was taking a step backwards.  That her little body is not ready to be totally on its own and that meds are still needed.  Cora took it way better than I did. 

She once again taught me that life is full of unexpected difficulties, but you need to just adjust to it and just keep moving forward.    With faith and grace, I remembered how to play in the rain this week and Cora was right there with me.

                                                                   

Cora sings for success

The Early On team came yesterday and it included a new woman named Rachel.  Rachel is going to start working with Cora on her speech therapy.  Since Cora is mimicking mouth movements, signing 14 words, verbalizing 5 words, the Early On team thought now would be a great time to introduce the speech part of her therapies.

It always nice to hear that I am a doing a great job in teaching Cora, but the credit still goes to the young student.  Cora works hard for what she learns.  It is through our repetition and continual use of the signing that she is learning it and growing with new words each week.  Cora is a student of life and everything, and I do mean everything, has her interest.  She really wants to know what things are and she looks for us to show her the sign and say the word.  She has started mimicking the sign as well as trying to make her voice and mouth do the same motion.

She has started a new talent this week.  I was signing to a song that was playing on the radio.  A Jodie Messina song "Bring on the rain" when all of a sudden I realized there was a little voice joining in with me.  Cora was in the back seat of the truck in her carseat and she was singing with me.  These beautiful long "Awwwwwwwwww" and "Baaaaabaaaaabaaalaaaalaaa" noises.  When the song finished and I stopped signing, Cora clapped her hands.  I laughed so very hard and cheered for us both as well.  After all, if Cora could clap for me I figured I might not have sounded to bad!

This brings me back to the original paragraph.  The fact that Cora is wanting to sign along (in tune most of the time) and mimic the tone and sounds that she hears, along with doing a little booty and body rock to the rhythm means that she has once again achieved another milestone.  So, with the addition of another Early On team member, Cora keeps moving along on her journey...and now she signs a merry tune as she steps along the path!!

Cora's holiday

This Labor Day weekend holiday is coming to a close. It was a warm, loving, laughter filled holiday for Cora. 

Last year at this time I was sitting with Cora in Mott Children's Hospital.  Looking at my beautiful baby girl, in her intensive care unit after her first heart surgery,and praying endlessly.  The memory of seeing her lying in that bed still spins my stomach and puts tears in my eyes.  Last year this holiday was spent watching my daughter breathe with a machine, looking at wounds and wondering where life was going to take us both.

This year, exactly one year later, we were sitting in a girlfriends living room surrounded by eight woman that I had graduated high school with.  The get together was started by Michele wanting to visit with myself and Nancy so they could see Cora and how much she has changed the last few months.  It just kind of snowballed from there. Cora and I ended up at Valerie's house for a lunch and with other women joining in.

We arrived and toys were found and Cora was placed on the floor in the middle of the group.  She looked at everyone, played with toys and entertained herself.  We spent the time laughing and talking and laughing some more.  Cora spent the time looking at all of these beautiful women and at moments would squeal and kick her legs and clap. She enjoyed time in Auntie Brenda's lap and Auntie Valarie's lap and tried to untie Auntie Michele's shoes.  She spent time casually leaning against Auntie Nancy's leg while she watched us silly women laughing yet again.

I don't know if anyone else understood the significance of yesterday for me.  I was quiet sometimes, just smiling and listening , simply because I was breathing in the joy of the moment.  It felt wonderful to be surrounded by women who accepted Cora openly and didn't have a negative thing to say about what I could expect in the future. They didn't utter a negative word about how hard life could be for Cora or her challenges. 

The greatest blessing we both received yesterday was the hugs and the warmth that these women offered to my baby girl.  Cora once again won over a crowd of people to her side of the road.  I know, without a moments hesitation, that if Cora needed something these women would stand up for her. 

A year ago the day was spent in tears and  a soul felt agony of worry.  This year ,the day was spent in heartfelt joy and laughter.  For me, the proudest moment was knowing that Cora was signing, playing and laughing along with all of us....just like an average baby would!  Something I wasn't very sure of last year. 

With that I would like to personally thank the women who made yesterday a great aniversary for Cora and me....Brenda, Kim B., Kim P., Michele, Valarie, Jackie, Beth, Nancy. We also have to mention Auntie Lee because I know she was there in spirit even though work kept her away.   Cora sends mushy kisses and I send a prayer of blessing.  Thanks Ladies!!