6 weeks from surgery

Cora made the six week mark for post-op from the heart surgery.  I didn't realise how anxious I was about the recovery process this time.  I breathed a huge sigh of relief and felt a tension leave my body when I looked at the calendar and saw that Cora has made it to this mark without problems.

There has been so many struggles for Cora during her recovery process and too see the changes in her this time continues to delight me.  Her strength is gaining every day and although she is still challenged with muscle coordination and movements, she gives it her best shot every time she sees something she wants.

To see this change in her fills me with a great wave of love and compassion. It took her nine months to get to the point of being able to have the stamina and body that would allow her to explore the world around her. It is such an amazing miracle. I am ever grateful to watch as the miracle of her growth plays out everyday.

I watch her wiggle and move and roll and squirm.  I see her take many breaks to catch her breathe and gain her strength.  I sit and wait and sure enough, she lifts herself up on her arms and starts the wiggling and squirming all over again.  She is very tenacious and keeps at it until she reaches whatever has caught her interest.

This morning her brother was sitting on the couch and totally engrossed in his new Wii game.  Cora was fascinated by his hand movements and his game play.  Sure enough, she rolled herself off her blanket, across the living room floor and right up against the couch to be able to watch Phoenix closely.  He didn't realize that Cora was at his feet until she reached out and patted his foot with her little hand.  When he looked down to find Cora and started laughing she joined right in with a huge smile of her own.

I sometimes feel sadness when I am getting her medicine ready and think about her taking the thirteen doses of different medicine everyday.  I cry with her when she cries about the NG tube being inserted so she gets all of the doses that she needs. (Without the tube she is pretty slick at spitting all the medicine back out.)  Most times she tolerates it like a champ, but there are days that she even seems to tire of the routines that keep her heart doing what it needs to do. For the most part, she takes it all in stride and without complaint.

It is an important  lesson given by Cora today. To take it all in stride and don't lose sight of the goal.  With tenacity the goal will be reached, and when you get there, smile a huge smile. 

 Cora watching a music video sent to her from her Auntie Brenda.

Down syndrome ...Cora does it again!!

Early on came to the house yesterday afternoon.  It was the OT therapist by herself to work with Cora on some of her skills.   Cora has achieved eating off a spoon fairly well and is even making chewing motions with her mouth while she eats, so she didn't need much help with eating.  The therapist decided to try working on Cora's sitting skills and just kind of watching Cora and getting to know her.  (This was the new therapist who is taking Jan's place).

During the exercises Cora would take rests and look for me to make sure I hadn't left her alone. 
Then she would go back to work and smile at the Early On therapist.  After a little while of working Cora seemed to get hungry and it gave the therapist the perfect moment to watch Cora suck from her bottle and work on getting Cora to hold the bottle herself.

Cora wasn't to sure about taking the bottle from this new person but she did finally accept it and sucked on the bottle for about 2 ounces worth.  After the two ounces Cora kind of did a raspberry on the nipple and pushed it away with her tongue.  This is Cora's usual signal that she is done drinking and doesn't want anymore.  The therapist held the bottle in front of Cora and asked her if she wanted more milk, did the sign for milk, and then tried to give the bottle to Cora again.  Cora looked at her, closed her eyes tight, and made the sign for "ALL DONE".  Yep, you read it right.  Cora signed a new word and she did it at the right moment.  It was not a coincidence, it was a definite sign to get her point across to the therapist that she did not want anymore milk.

I laughed and smiled and said, "I guess she is done for sure!".  The therapist looked at me and said, "Did she just sign - all done-?" I told her "Absolutely!"  I have used this sign consistently with Cora, and so have my other kids, whenever we ask her if she is all done with milk.  Or to tell her we are all done with diaper change.  I also use it everytime there is medical testing and Cora is upset and crying or scared.  I stress telling her that we are all done with the use of the sign for "all done". 

Cora proved that she does indeed watch the sign language and she definitely knows what it means.  She shows that she has been watching and learning . She just needed to have enough strength to be able to move her arms and hands the way she needed to show this new sign.

Cora Jean has now increased her communication skills to four things.  The sign for "milk", a head shake for "no", a verbal "mama",  and the sign for "all done". She will grab your face softly between her hands and give kisses on your cheek and she will give Eskimo kisses with her nose.  And research tells me she wouldn't be able to talk (possibly communicate)  until she is at least two years old.  Seems like she is talking/communicating  just fine and learning how to get her point across rather well. 

 Cora giving brother a kiss good morning.

9 months....Rock On!

Cora scooted into this new milestone month with a smile on her face and a hug for a red nosed reindeer.  She woke up this morning in good spirits and talking up a storm.  Today has been a great day as she kept all her food down, and there hasn't been any blueness of the hands or feet.  She has stayed warm all day and has been able to be active.  A few short naps here and there and she was back at playing again.  So, with this blog we chart Cora's achievements:

She can:

+ sign "milk"
+ she can respond with a no shake of the head
+ rolls front to back to front again
+ can change direction while rolling to get to an object that she wants to discover
             is starting to hip scoot in a desired direction
+ lifts head up with fully outstretched arms
+ says "mama"
+ verbalizes "ma", "ba", "na", "um", "num"
+ lets you know when you are taking to long getting her formula, or food, ready
+ grabs toys at the mid line with her hands
+ kicks toys at the mid line with her feet
+ will arch her back to be lifted up if you ask her if she wants to "come here"
+ from a laying position, can almost sit up while being held in your lap
+ standing while supported on your lap with fully outstretched legs (short 2 second periods)
+ likes to eat : organic smoothies, peas, oatmeal, sweet potatoes, strawberry - apple - banana  mix           fruit,  mixed cereal, yogurt, electrolytes (fruit flavor)
+ does not like: plain apple anything, or grape flavors
+ she can do push-ups and turn when on her stomach


Today marks a great day in Cora's journey for she made it to her 9 month old birthday.  I have faith that she will continue to reach many more.

Cora discovered her brother's Christmas  gift today

 And instantly fell in love with it

Cora's First Christmas

Cora, like all babies, found the wrapping paper the best part of her first Christmas.  I, like all mama's, found being able to have all my children in the same room for this holiday an absolute blessing.




I'd like to take this time to thank all of you for your continued interest in Cora's journey and our story of learning together.  I am ever grateful of the support I am given and for the ability to answer questions of those who email me privately.

As you have all read, this year has been an incredibly stressful, painful and  remarkably wonderful journey. For Cora, it has been a year of achievements and learning.

We are so very blessed to have you as followers and to have all of you continue to hold Cora in your prayers.  This being her first Christmas held many emotions for me.  As her mother, I sometimes wondered if she was going to be sharing this holiday with us.  As her champion, I didn't believe there was any option other than her making it to Christmas and continuing her journey with the spunk she continues to show.

This Christmas left me feeling remorse for those that weren't sharing it with Cora and thankful for those that cared enough to share this day with her and the rest of her family. Overall, it is with a light heart I write this blog tonight and with a soul overwhelming with gratitude and love for this child, our journey, and the rest of my children who are also traveling with Cora and I. 

I send love to all who read this blog and include my writing about Cora's journey in their life.  We look forward to continuing to share our  journey with you.  It is my prayer that in some way this blog with continue to give you peace, love, understanding and appreciation ....and  a few laughs along the way.

From my family to you and yours,

Merry Christmas

Cora throws a curve

I was given exercises by the Early on team to work with Cora on.  Cora and I have spent some times doing these throughout the last couple of days.  I just find a few minutes here and there and don't push Cora past her physical limit right now.

When I see Cora reaching for a toy that she wants I hold it above her mid line and encourage her to reach up with her hands and grab the toy.  Early On suggested that I hang a rope across her playpen and hang items that Cora really likes from the middle of that rope, but within hand reach and foot reach.  I got right on this and built a little chain out of her toy links and hung her three favorite toys from the chain.

Cora watched all of this with interest and had been staring at these toys for a few minutes when I took her hands and reached them up to touch the toys. During the next few days I would stop and encourage her to do this at different times.  Spending no more than five minutes each time.  If I spent more time than this with her she would want to be picked up instead of playing in the playpen and exercising those muscles that she needs to build strength in.

On Wednesday I was walking by her playpen and noticed that she was grabbing her toys successfully with her hands and shaking them....all from a mid line grab and hold.  Then all of a sudden she kicked her legs up and hit one of the toys.  It rattled.  She stopped and looked at me and smiled.  Then she did it again....once she realized that every kick would make the rattle swing and jingle she spent all her time grabbing one toy and kicking the others.

So, Early on team, Cora has successfully achieved mid line grab and mid line kick.....now what?  Because she has just thrown the six month goal sheet a curve - in a spectacular way.

 mid line grab

 mid line kick

Cora's Christmas spirit

During shopping today I met a friend who I hadn't seen in several years.  We chatted a few minutes and while we chatted she kept glancing at Cora.  During a pause in our conversation she leaned in close to Cora and smiled at her.  She asked "Who is this beautiful little girl?"  I explained that Cora was my youngest daughter.  My friend was overwhelmed with shock and looked at me.  All she said was "Wow.  How old is she?"  I told her Cora was 8 months old.  We shared a laugh about the age gap between her and Kelsey (my oldest).  We continued to talk about our children ( I had trained her daughter for professional horse shows when her daughter was a teenager) and life.

The whole time Cora just sat patiently and watched us both.  At times she would smile shyly at this woman and at other times she would grab my finger ever so tightly and stare at me.  Cora didn't have the top half of her snowsuit on because it was hot in the store and her little shirt had inched down on her chest .  My friend leaned into Cora and said "Oh my, what happened to her chest?"  I then noticed that the top inch of Cora's scar was noticeable.  I am used to seeing the scar and its redness and it no longer alarms me.  Looking at it with unknowing eyes can be a startling sight.

I explained about Cora and her heart surgeries.  I talked about Cora being an infant with Down syndrome.  I bragged about what Cora was doing and her beautiful blue eyes.  The whole time this woman listened to me.  When I was done with my explanation she gently touched Cora's cheek and then looked at me.  Her eyes were filled with emotion and I wasn't sure of what she was thinking. I worked to stay open minded and not worry about what she was going to say next.  I waitied for the either positive reaciton or the negative reaction.  She looked at Cora and said very softly, "What a blessing and she is so beautiful."  My friend then looked at me with the biggest smile and love shining from her very core.

I gave her a hug and we parted ways.  Her to continue with her shopping and me to continue helping the girls pick out the things they needed.

As I walked with my children and I watched my 21 year old and my 17 year old talking and laughing with each other, and as I looked at Cora watching everyone in that intense way babies do, I was filled with the spirit of Christmas.

I believe that part of Christmas is having the ability to show appreciation to others with small gifts,  or simple acts of kindness and gentleness.  These things are meant to empower others and help them feel blessed in some way.  I was given that today by this woman.

She embraced me and Cora with love and compassion and no judgements.  I was blessed with the very feeling of Christmas that I try to give others.  Cora is teaching me what pure love looks like when it is given to us by others.  And that is definitely the Spirit of Christmas.

 Cora resting after her Christmas shopping

Odds are in Cora's favor

Today Cora went to Pickford Medical Center for her weigh in and her well baby check.  They are doing this for her weekly checks until we figure out where Dr. Statler is going to be practicing.  The report was great. 

Cora has gained 1 & 1/2 ounces since last Monday.  This is tremendous news for the little button.  She is getting stronger and more control over her legs and arms and is gaining weight.  Such a wonderful gift today to hear this from Leslie (CNP).

I am blessed to have this good news.  I sometimes forget how to handle the good news because with Cora's care it seems so many times that it has been hesitant or even bad news.  Today establishes a moment on Cora's journey where she is making new marks on the  growth and length chart for infants with Down Syndrome......and the graph marks are starting to rise!