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! 

Goodbye is not cool!

Cora Jean and Doctor Statler

Today found us at the Applebees restaurant in Sault Ste. Marie for Doctor Statler's going away party.  Cora was tired by the time this picture was taken and we were getting ready to leave. 

 I absolutely abhor the fact that one of the best pediatricians in this area has had her contract "not renewed"  because she cares too much for her patients.  You see, with Doctor Statler, your child is not a number or a chart or an insurance payment.  Your child becomes her child as she cares for them.  Dr. Statler has a good grip on Down syndrome and what these patients need to be able to grow to their fullest potential.  I and Cora have been absolutely blessed to be in her care.

 It is a great sadness that doctor's like this are dismissed from their contracts because they don't bring in enough revenue (they take to much time with their patients) or for the fact that they refuse to treat adults and kids at the same time.  Children are children and not adults.  They require different care and different considerations. Children with Down syndrome need a special consideration from the pediatrician.

So our pediatricians are stuck with the moral question, "Do I continue to care for the child or do I bend to administrative requests and treat these kids like adults and combine my practice?" Seems simple to me.....they are called Pediatric Doctors for a reason. 

I give high regards and tons of kudos to Dr. Statler for standing up for her morals and what she believes in.  She believes whole heart idly in our children and the appropriate care for them.  I support her in her strength and compassion to follow her own beat and sing her own song.  To be true to herself is the greatest reason why she is such an outstanding doctor. 

Today found us at the Applebees in Sault Ste. Marie for Doctor Statler's going away party.  I choose to look at it like this....she is going away from Mackinac Straits Hospital and heading toward an even better practice.  Wherever that might be, Cora and I won't be far behind.

Cora works hard

Yesterday found us in Marquette again.  Cora was to see Dr. Christansen for her check up.  She hasn't been gaining weight, in fact losing a little, and all were concerned that Cora's heart was stressing  and showing that stress.  Her EKG and check up shows that she is doing rather well and holding her own.  The random vomiting is thought to be from all the medicine she has been having to take so I was instructed to continue giving her the Zantac.  He really feels that she looks good and has good spirits so we should leave all alone.  A kind of "watch and see" attitude and "let's not mess with anything that seems to be agreeing with Cora."  I left there feeling relieved and grateful for this doctor's time in Cora's life.  I also left there with some sadness.  The nurse who usually helps with Cora's vitals and EKG (Katie) was a little sad knowing that Cora won't be traveling to Marquette for her cardiac care anymore.  Changes are good but they sometimes leave us feeling a melancholy.  I will miss these women and this doctor who have been such a driving force in Cora's cardiac care.

Today found us with Early On in the house.  Cora greeted Jan with a smile and even snuggled with her.  Although Jan has been unable to visit since October when Early On was put on hold, Cora was all snuggles when she saw Jan. Once Veronica got Cora down on the blanket for Cora's training and therapy Veronica was greeted with lots of smiles as well.  Cora was very open to starting the therapy again and I was glad to see her tolerating it well.  It used to be that when she had physical and occupational therapy everyone had to give lots of breaks to Cora and we were all so watchful for the purple tinge around lips and nose.  Today Cora made it through both physical and occupational therapies without turning purple, gasping for breath, or crying for help.

Such a beautiful thing to see Cora regaining her strength and learning new things.  Early On is such a blessing of a program.  Without it I wouldn't be able to offer Cora physical and occupational therapy at this point in her life.  The Early on team are also adding a teaching session for Cora.  This is something new that I was excited to hear about.  Becky, the woman who will be coming for this part of therapy, will come once a month and teach Cora signs to back up the signing I am teaching Cora and encourage Cora with different types of learning play.

So this evening leaves me with a tired but happy baby girl.  Cora is definitely a hard worker and she deserves every achievement that comes from it!

Cora wore out from the 6 hour trip to Marquette yesterday and the Early On therapy today

Jan, with Early On Program (she is retiring and will be greatly missed)

 lt to rt : Becky, Jan, Veronica 

The awesome Early On Team that worked with Cora today

Down syndrome = gratitude

"Tis the season to be jolly"   This phrase can be seen and heard everywhere you go this time of year. I watch Cora in her play, in her interaction with others and even when she just sits and stares at something that has fascinated her.  I realize that she lives in a state of gratitude and remains jolly 95% of the time.  As a parent I rejoice in that gift.  As a person and adult I can definitely learn from it.

If we all remain in a state of gratitude and strive to be "jolly" we have discovered the secret to happiness and in a sense gotten in touch with the way creator wishes us to be. I have seen Cora share that gift with others.  It is usually just in the way she cuddles into someone she knows or the side mouth grin she gives another person that is saying hello.  No matter their mood as they approach Cora , she somehow seems to change that mood for the better.

 What a gift the children and adults with Down syndrome have been given....for if gratitude and jolliness is the way to touch hearts, they definitely have the uncanny ability to do just that.  And it comes to them naturally.  Just the way creator intended.

Joy...not remorse

Living in gratitude and with joy gets us so much further in life.  I could dwell in the "poor me" and "poor Cora" thoughts.  I could do that.  I choose not too.  I am living with gratitude and with joy.

I am grateful that the creator thought I  have what it takes to mother a child with Down syndrome.  I am joyful at each and every accomplishment that Cora achieves.

Today was our last day for a while of seeing Dr. Statler due to her contract not being renewed at Mackinaw Straits hospital.  Their loss will be someone else's immense gain.  It was hard knowing that Cora would be two or four months of  not seeing the only pediatrician that she has knows since birth.  Even harder today because of Cora continuing to lose weight.  Her weight was down another couple of ounces and Doc and I are both concerned....but not pushing the panic button.  Knowing that we would be going back to the local clinic for Cora's care is ok, it's just hard to adjust to the changes that come our way. 

This week will be the last time Cora sees Dr. Christansen in Marquette as he is moving his practice as well.  That will also be a hard visit.  Both doctors hold a special place in their hearts for Cora and how much of a champion she has become within their lives and other's.  Cora's blog has sometimes been a reference point for other patients.  I don't know who they are and don't need to know, the doctor's just let me know that they share the blog with patients and friends and it is reaching many people and helping many people.

It is during this time of change that I must once again become an advocate for Cora and become her voice and trust in the new doctor's that will be giving her care.  A leap of faith one might say.  The thoughts could begin with something as simple as "What if they aren't familiar with Down syndrome?" and snowball into "What if they aren't open to information I can offer?" and avalanche into "What if they don't take the time to get to know Cora and can be proactive in her care instead of reactive?" 

What would that gain for Cora?  NOTHING.  Choosing to be grateful and in joy keeps things moving along smoothly.  I am grateful for the care and love these two doctors have been able to share with Cora.  I trust them to refer us to equally capable doctor's. 

I don't know where our journey will lead us, or to which new town we will begin traveling for the appointments.  But I know this... I am choosing to live in gratitude and not remorse.  Because I am ever grateful for this day and that Cora is a living part of it.  And I am thrilled that the little feet which travel with me have "sandal toes".

                                                                       

Yummy Yogurt

I made the breakfast smoothies today and Cora sat in her high chair and watched as the blender did its magic.  I marvel sometimes at how far Cora has come and that she is so expressive and responsive now.  Before this last surgery Cora always seemed to have a distant look and was not very full of energy.  Now, everyday is a new day with her.  Everyday she is aware and very interactive and wants to be in the middle of where the action is.  Even it is means sitting in her highchair watching me load the dishwasher or laying in her crib watching me fold laundry. 

While doing the tasks of everyday life I talk to her and tell her what I am doing.  I use sign language when it involves something that I can sign and have even started to tell her the textures of things when she touches them and the colors of objects she plays with.  Education is a blessing and Cora shows it in her willingness to be involved and interact.

>((The NG Tube insertion for her meds is getting easier.  Cora seems to tolerate the insertion of the tube better for the three times a day she has to take her medicine.  I believe she knows that the tube comes back out as soon as the medicine is in her tummy.  Whereas before she didn't like it being inserted because she knew it would stay taped to her face.  Emily has learned how to insert the NG Tube and measure the medicine.  The NG Tube in itself is not hard to insert, its the fear that you are going to put it in the wrong spot or that you might be hurting Cora that makes it hard.  Emotionally challenging for sure.))<

After her NG Tube was inserted, meds given, and NG Tube taken out Cora was totally engrossed in watching all of us drink our smoothies. when I asked Cora if she wanted some, she made the sign for "milk" (guess she is ready to learn the eat sign).   I put a little in a bowl, mixed in some of her oatmeal and gave her a taste.  She was totally into the taste of that smoothie.  I am glad we make them at home and they are all natural!  I have really tried to get Cora used to new tastes lately and keeping her on the natural taste of food.  I have read that many children with Down syndrome struggle with weight issues and diabetes.  My theory is that if I can get Cora to love the taste of fruits and veggies it will help keep her away from the junk foods. 

So today marks the day that Cora had her first taste of yogurt and absolutely loved it.  And yes, Dr. Statler, I know.....keep up the veggies before the sweet tasting stuff.  I promise to feed her squash for dinner.

Tis the season

Last year at this time I was awaiting the news of the amniocentesis.  Scared for the results and wanting to know.  There wasn't much joy at this time last year.  There was a great deal of faking the happiness of the season...you know that old saying, "Fake it till you make it".  I was trying to stay positive about the Christmas season for my other children and trying to stay away from that monster depression that was looming because of the coming news.

I was unpacking the Christmas decorations today with Phoenix and we were singing the Christmas songs and having a good time and Cora was in her baby swing and watching and doing her baby talking.  When Phoenix came to the point of finding the packed away socks and hanging them I started to think back to last year and was grew silent.

The older kids noticed and asked me what was wrong.  I told them that I was remembering last year and the sadness that I felt when you girls picked out this sock for Cora. You knew she would be sharing Christmas with us this year and you didn't want to miss out on getting her a Tinkerbell sock.  They asked me why I was sad about buying the stocking and I told them that at the time we didn't know what our life was going to be like with Cora and I didn't even know if she would survive the pregnancy or the birth. That this time last year I was waiting to hear the news from the results of the testing.

All of the kids got really quiet and we all looked at Cora chatting away in her swing.  Oblivious to the emotions that were working their way through the room, Cora was just happy and chatting and smiling at us and thinking it was awesome that she had the undivided attention of everyone in the room.

It was then that I told all the kids, "What an absolute blessing Cora has been to all of us.  If I could go back in time I would hug myself tightly and tell myself that it was going to be okay.  That Cora would be a blessing to the family and that I would be able to handle the challenges as they came."

It was then that I heard the words that I usually tell everyone else, "All is well mama and it is what it is."  Sometimes when we hear our own words from someone else, especially our own children, it makes everything joyful and right.  I was given a huge "AHA" moment.

At that point we all started hanging the lights and went back to decorating.  Tis the season to be thankful and full of good cheer.  Yes indeed.  It is what it is and there ain't no changing it.  Truth be told, I wouldn't change Cora one bit.

 Cora discovering her stocking

 Older sisters (Melissa and Emily) thinking it would be a cute photo op for Cora to be in her stocking.  Alas, Cora's stocking was to small.

Therapy finds Cora..and it meows

Cora was in her playpen and not really wanting to move around for toys or exert any real kind of energy.  I was sitting at the kitchen table watching this and wondering what I could do to encourage her Independence yet entertain her and get her to exercise.  Cora's exercise right now consists of reaching for things and pushing with her legs to reach  whatever catches her eye.

Just then Beauty meandered into the living room and stopped beside the playpen and "talked" to me.  Yes, this kitten talks to all of us in the house.  Sweet little kitten meows that make total sense to her and leave all of us bewildered at times.  Beauty then looked into the playpen and "talked" to Cora.  Cora instantly flipped herself in the direction of the kitten and searched for her.  Cora used both her legs and her trunk for this and I had an epiphany. 

(( Now, some of you might not agree with what I did next and I am sorry if you are worried for Cora's safety.  Please note that I don't leave Cora in her playpen unattended when the kitten is in the house, and I did not leave Cora unattended the whole time she and Beauty played together.))

Having grown up on a farm and being a professional life coach that uses horses for healing I understand the power that animals have when it comes to children.  I have also seen when animals are used as messengers.  When Beauty sat beside the playpen and looked at Cora and "talked" I believed that I was given an answer to a dilemma.

I scooped up Beauty and put her in the playpen with Cora.  I positioned Beauty in the corner away from Cora and watched what happened.  I wish you could have seen how Cora's face lit up and Cora even giggled a little.  She got the biggest grin on her face and started kicking her legs, and pushing with her legs and arms to try and get to Beauty.  The whole time this five month old kitten just sat there and watched Cora.  At one point the kitten and Cora were having their own conversation.  I wanted so badly to video tape it but have yet to figure out how to get them posted on this blog.   Cora spent her time trying to reach the kitten and finally succeeded and grabbed Beauty's tail. I jumped up to loosen Cora's hold before the kitten got mad, but my help wasn't needed.  Beauty just looked at Cora and meowed to her and gently stood up and shifted her position.  She did this so quietly and with such kindness and just enough movement to break Cora's hold.  I stood there amazed and in awe of this kitten because the kitten was teaching Cora safe play and boundaries.   This play and exercise went on for a half hour before Cora got tired. when I saw Cora getting tired I took Beauty out of the playpen and was rewarded with a soft meow. 

My dilemma of how to get Cora using her legs more was solved...and who would have thought it was sent in the form of a little calico fur ball that "talks" Cora's language.

 Cora and Beauty ....Cora is doing raspberries on her hand.

 Beauty dozing while Cora plays.

Faith can move anything

Cora had a big day as we went to St. Ignace for a regular check up and to get the blood work that was unable to be gotten while in Marquette.  Dr. Statler is always so happy to see Cora and this time especially so.  She remarked on how much better Cora's coloring is every week and how Cora is so aware of her surroundings and interactive now.  Its always good to hear that Cora is doing well and progressing.

The one drawback was Dr. Statler finding that Cora's legs are not as strong as they once were and that the legs seem to be lacking some of the muscle tone.  Early On is on my list of first calls!  Getting her back into her therapies will be a definite help with the strength issues and the muscle tone.

Cora has lost 2 ounces since last week.  Medicines and formula recipe are all the same so there is a little question as to why Cora is losing weight.  But no one is pushing the panic button and it is a wait and see kind of thing for now.  We will have more information on the weight issue next week when Cora is again seen by Dr. Statler.

Once the exam was over it was again time for the blood draw.  As I waited for the lab techs to come to Cora's exam room I tried to remain optimistic.  When Mike and Chuck came into the room I was overjoyed with relief.  These two guys are phenomenal at getting blood work from Cora.  I gave them my biggest smile and when they saw it was Cora, they were excited to see her doing so well.  One try...yep....ONE TRY and Mike had all the blood Dr. Statler and Dr. Christansen needed.  I gave huge compliments to the two guys and made the statement that if Cora needs blood work she will continue to go to Mackinac Straits Hospital and we will be looking for Mike and Chuck. That seemed to make their day.   All that blood work and just a little cry from Cora and even a smile in between for the two guys and then another little cry and it was over.  So much better for Cora and less stressful for her as well.

Then it was off to Glens to find Cora's formula that had to be special ordered.  Glen's market was wonderful at helping me get what Cora needed.  I will be glad when Cora is done with the Enfaport though, it has a horrendous smell to it and is not very appetizing at all. 

Cora is again back to eating from the spoon (with help of course) and enjoying her foods.  I think she loves the fact that she can eat on demand instead of having everything go through the NG tube.  She seems to really be enjoying the taste of different things.  Cora started to actually making a chewing motion with her mouth today when she was eating her cereal and veggies.  I love watching her learn new things and again see her only as a baby and not a baby with Down syndrome.

So yesterday and today leaves me feeling fulfilled and proactive in Cora's life.  The challenges still remain daily, but at least I have a little glimpse of what those challenges are and can somewhat prepare for them as them come along.  But then again, who can prepare for life as it presents itself. The best thing I can do for Cora is continue to be proactive in her therapies and needs instead of reactive after the fact. 

Now, on to calling Early On and getting therapy in order for Cora. 

 Cora enjoying her cereal

 a gift for Cora from a loving friend

A special treat

Cora has the new schedule of hospital time and has been getting up during the night for feedings.  This doesn't bother me as she needs that extra food right now during her healing time.  It does however make a mama tired.  This apprently hasn't gone unnoticed by my son. 

At 8 am this morning, after my being up twice with Cora during the night, Phoenix heard Cora in my room while he was watching cartoons in the living room.  He came quickly into my room and before I could get out of bed this is what I heard, "Don't worry about it mama.  I will get Cora, you go back to sleep." 

I got a mother's day morning and it wasn't even mother's day.  I told Phoenix how very proud of him I was for this gift and that I loved him.  I also told him he was my favorite son.  He just lughed softly and said, "I know mama" and quietly left the room with Cora in his arms. ((he is my only son and he thinks its so funny when I tell him he is my favorite son))

I laid back down, snuggled under the warm blankets, adjusted my pillow and started to drift off to sleep.  As sleep again found me I smile silently and my last concious thought was...... " I'm not the only one Cora has wrapped around her finger."

 Big brother Phoenix

Cora's right to say "NO"

Left for Marquette at 6am this morning to make it in time for Cora's appointment with her pediatric cardiologist.  Cora did well traveling but was ready to get out of the car seat by the time we arrived.
Doctor Christansen was so pleased with how she looked, her energy level and her interaction abilities compared to the last time he saw her.

He performed an echo cardiogram and found another small leak between the wall, but the repair is still holding.  Cora's mitral valve regurge is still moderate and is healing nicely despite the fact that there is leakage around the sutures and the heart is still slightly enlarged.

Her xrays came out beautifully again.  Yeah for Cora.  Her lungs are clear and staying that way, this is a first for Cora since she has been born.  No wonder her talk time is increasing..haha! 

Then it was time for blood work.  This is never an easy task with Cora because her veins are so small and very deep.  It is hard to find one for the blood draw and if there isn't a tech on duty that is used to drawing blood from an infant their chances are practically zero that they will get blood.

Keep in mind that Cora is only a few weeks out from surgery, on lots of diuretics and tired from the three hour car ride.  The tech tried to get a draw from Cora's arm and was unsuccessful.  The tech checked Cora's other arm, her little feet and finally decided to try the wrist area to withdraw blood.  Now the first time she tried in Cora's arm she inserted the butterfly needle and then withdrew it a little and reinserted it...she did this fishing around five times before she decided that there wasn't going to be a draw from the arm.  At this point Cora was crying to the point of sobbing and hiccuping and I was getting uncomfortable with the whole procedure.  When the tech went for Cora's wrist I told her she had one shot and then it was going to be done.  The tech inserted the needle and missed.  Have any of you ever had a blood draw from the wrist?  It is extremely painful and uncomfortable.  Cora by now was past sobbing and looking at me with those blue trusting eyes and speaking right to my soul.  When the tech started to fish around in Cora's wrist I touched her arm and said (very much calmer than I felt), "Take the needle out, you are done."  The tech wasn't happy but she did withdraw the needle.  She then proceeded to tell me that the blood work had to be done and she would just try another spot.  I again told her "No. You are done.  Cora is still recovering from surgery and she is not going through anymore today. " 

Well the tech was not happy and started to tell me it had to be done and etc.,, so I again explained that Cora was recovering from heart surgery and didn't need to be in this much distress.  I also told her that I knew there was a three poke  rule and she has far exceeded that rule.  Then I told her that I would take total responsibility for the draw not being done.  Those were the words that finally made her happy.  That I would take responsibility for her inability.

Once back in the office with Doctor Christansen he had already been informed that I had denied the blood work.  I told him what happened and he back me up 100% .

 There are moments on this journey when I have to speak up for Cora and need to be her advocate and her greatest campaigner for her rights and her dignity.  Even when it means taking responsibility for another persons inability and unwillingness to "own"  their shortcomings.  I do this willingly and lovingly.
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Cora happy to be in a bigger car seat.  The baby carrier style seat was hurting her back too much after surgery. Changed her to this bigger seat that sits more upright and doesn't put pressure on her back and she was a happy girl again. Made the trip to Marquette and back with little fussiness. 

 It got the "Cora-Raspberry" seal of approval.

Ignorance is not bliss

Cora spent a great deal of today napping and then talking up a storm.  Its so great to hear that little voice chatting away while I clean the house.  She is already practicing her vocal skills and readying herself for "making her voice heard".

After  Cora rested and I was done cleaning the house, it was time to work on her sitting skills and tummy time on a pillow.  At this point this is the only therapy she can do until she gets clearance from her pediatric cardiologist.  I am looking forward to getting her working with Early On again with the hopes that she will gain some of the muscle strength back that she has lost over the past two months.

We are getting ready for that Marquette trip again to see her doctor.  I have mixed feelings because last time we went as soon as we got home she went into heart failure from the valve sutures letting go and tearing.  I am optimistic that it will not happen again.  I am praying that the echocardiogram will show no increase in the blood regurge and all will be well with Cora's heart.  I am not the master of this journey, creator is.

When I ran to the local store real quick, I was asked by a person at the gas station who had heard about Cora, "How are you going to handle raising her with the Downs?" ( Normally I am very open and willing to answer questions but this question was asked in a tone that reeked of prejudice and rudeness.) I took a deep breathe, said a quick prayer and  I replied that I would continue to do as I have been doing, raising her like my other children.  With lots of love and understanding.

I returned home and remembered a quote I had read last night before going to bed ...

★"The highest form of ignorance is when you reject something you don't know anything about." -Wayne Dyer ★
                   
   and I continue to  hope the knowledge that can be gained from Cora Jean's journey will enlighten people and help rid the world of the ignorance that can sometimes be encountered when trying to explain what Down syndrome really is and that Cora is a baby, just like other babies.

 tummy time exercise

 sitting exercise

 Cora finding her foot

                                 

8 months....yeah!

Cora successfully met her 8 month anniversary and marches on with gusto into the coming month.  She has fought for every day that she has been given and she just astounds me with her "can do" attitude. Here are some of her milestones for this month:

•  she can roll from front to back and back to front
• she has started to reach for objects while doing tummy time
• during tummy time she has started to draw her legs up to her booty and starting swimming with her arms and legs
• she scratches everything her hands come into contact with to hear the sound and feel the texture of what she touches
• she signs "milk" when hungry
• she says "mama"
• When you sing a song and stop the song and tell her its her turn to sing Cora will make a long drawn out verbal sound
• she is able to sit with little support on her hips
• she has started laughing more regularly
• she smiles in response to laughter and smiles
• she has stranger awareness and shows separation anxiety
• when you hold Cora close and pat her back she will pat you with her hand
• she continues to eat sweat potatoes, cereal, and mixed fruit from a spoon (with the adult feeding her)
• she absolutely...positively....does NOT like applesauce or anything with a strong apple flavor
• Cora also does NOT like grape tasting things
• she can lick a sucker
• Cora is able to communicate her likes and dislikes and discomfort
• when she hears a strange sound she will search for the source by moving her head and body in its direction
• she is starting to give kisses when kissed

I list these for a point of reference for Cora and to help others who have children with Down syndrome.  I also like to brag a little about Cora (just being honest here) and her accomplishments because she works so hard for each one of them.  Even though she is set back do to lack of energy and the heart problems, Cora is making up for it with all those little smiles. I don't have any expectation or follow a chart and push Cora to be anywhere particular in the milestones.  I just marvel at how much she accomplishes and the way she will stay focused on a toy until she figures out a way to touch it and reach it.  As long as she is thriving....charts don't mean a thing.  Cora is what matters most.

One of the things that we have to remember is that Cora is an individual before she is a "Downs Syndrome".  Every child develops differently.  When I am asked the question "How bad does she have Downs syndrome" I usually answer "I don't know.  Did you have your child IQ tested when they were 8 months old?"  I really try not to pigeon hole Cora with her Down syndrome or label her because pretty soon everyone would only see the Down syndrome and not the beautiful child that she is. 
So, we celebrate this journey with the milestones achieved and don't dwell on those milestones not yet found.

World Awareness

 

PRESS RELEASE - United Nations adopts resolution to designate 21 March as “World Down Syndrome Day” from 2012

This will ensure a major step forward towards our goal for WDSD to be observed and celebrated by persons with Down syndrome, their families and friends, those who live and work with them and all persons who wish to promote and ensure quality of life and human rights for all persons with Down syndrome.  

 

 

Wanted to pass on the great news!  Cora and I are thankful for the increased awareness...the more people that understand Down syndrome the better understood those with Down syndrome will be.  I hope this blog is serving that purpose and enlightening others about Down syndrome.  I also hope this blog is encouragement for other's who are on the same journey as Cora and I. 

 

 

 

 

 

 

Wonders of today

Yesterday found Cora and I cooking our late Thanksgiving family dinner. We opted for roast beef and stuffing rather than the traditional turkey dinner.  Thought this was required since we didn't have the standard Thanksgiving events. 

Today Cora and I spent the whole day resting and we didn't get out of our pajamas.  It was a wonderful day of down time for me (no appointments to race too) and a wonderful day of healing for Cora.  Her appetite is slowly coming back and she seems less in pain today.

The amount of medicine that she takes three times a day is sometimes overwhelming.  I read the list three or four times when I am measuring the medicines for fear that I won't remember the right dose.   I imagine it is because I am so tired and drained from the past two weeks.  Yet, second guessing myself is not something I usually do.

Cora looks good today, but one of her hands is swollen more than the other.  Kind of wondering about that, not worried though.  The body has a way of healing itself and ridding itself of the foreign toxins that come from surgery.  Maybe this is just Cora's way of healing.

When Cora was napping today I decided to look through a book of inspiring quotes.  I found one by Winston Churchill that seems to have stuck with me.  It said, "Never, never, never give up!"  The wonders of today come with the inspiration that Cora never gives up and she is teaching her mama how to achieve that same attitude. And she is teaching me with much grace and dignity.

Destination....Healing

Friday, November 25, 2011 & Saturday, November 26, 2001

Cora is doing well.  The doctors put her back on one of her original diuretics and it made all the difference in the world.  We went home with four medicines given three times a day....but we got to go  home.  That is the greatest gift I could have been given for this after Thanksgiving day.

With a final xray and the all clear and Cora peeing in her diapers like she has just gone in a swimming pool, we were sent on our way.  I gave hugs to all the wonderful nurses and Cora smiled at everyone we walked by in the hallway.

 diuretics finally working...waiting for discharge

It is such a mixed blessings when you leave the hospital because I have spent the last two weeks with other parents and shared stories and struggles with them.  We become instantly attached due to our commonalities and predicaments.  Giving hugs to some of the moms brought me to tears.  I was happy I was leaving with Cora in my arms and saddened that some of them wouldn't be leaving anytime soon. 

 dressed for the ride home

The ride home was hard for Cora.  Spending that much time strapped into her carseat is painful.  She did her best and didn't really start to complain until the last 30 minutes of our seven hour journey home.  (We were slowed by an accident on I-75).  That last 30 minutes saw me and her both crying ....her from pain and me from the inability to console her.  Once we arrived home though, I laid her in her playpen and she stretched and wiggled and smiled.  Then, sleep overcame her and she rested peacefully.  My dad, Kelsey, Phoenix and Melissa were all so happy to see her and they kept checking on her and just looking at her and marveling at how much better her coloring is since the surgery.

Yes, she is a marvelous gift and a wondrous work in progress. 

We still have many doctor visits to come in the next few weeks.  But for today, Cora's heart is doing its job despite the leaks and that is all I am concerned with.  Today is good.

I would say that for Cora Jean Head's first Thanksgiving she threw herself the best  party ever.  She got a fixed heart and more energy and she gets another day to thrive.  I am incredibly thankful for this and am so glad I was invited to the party.

 home at last and playing too much to stay still for the camera.

Thanks given

Cora is still in the general care and had a really hard day.   She was restless all night and by this morning she was not breathing right and just not being her usual self.  The smiles of yesterday were gone and in their place were frowns and restlessness .  The nurses and the Doctor also noticed the change in Cora and were concerned.  Off to x-ray Cora went to make sure there was not anything going on with her lungs.

Pain meds were given, and other meds were given and no change.  By 1pm the x-rays were back and they were clear.  The mystery continued as everyone tried to reason what was going on with Cora.  Her heart sounded good so they weren't panicking.  I, on the other hand, saw this behavior before in Cora and it has been during her times of heart failure. 

Brenda (high school chum who works here) stopped by to visit with us today and it was a special time as it took my mind off of worry and into relaxation and laughter.  It is always good to see friends that are supportive of Cora and who enjoy Cora's presence and love sharing this journey with Cora.

Later this afternoon it was noticed that Cora was not "peeing" the amount that she should be.  So diuretics were increased and since her blood pressure was still all over the board the Captiprol was also increased.  The idea that we were going home today was changed again to staying another night to monitor Cora.

By 6pm she had started "peeing" again and was acting more like herself.  Her breathing was getting better, but now her temperature is on the cool side. 

I never realized before how wonderful it is to have your child "pee" or "pooh" when you are in this situation.  We threw a little dance party in the hallway when Cora finally filled a diaper so much that it looked like she had gone swimming with her diaper on.  Yep, I was smiling and Cora was too.  Silly though we were, it was a great moment. 

We spend another night at Mott Children's Hospital, but truth be told, I am more comfortable staying than taking Cora with all this going on. I'd rather err on the side of caution.

This night will be a continual celebration of "pee" diapers and will be filled with thanks being given every time I have to change one.

Being Chosen

Started the day with an echo-cardiogram. This is standard procedure before discharging the patient after heart surgery. Cora fasted until 8am and then was sedated. She did very well until the ultrasound tech had to push pretty hard on the abdomen to get a under shot of Cora's heart. It was then that Cora came out of a heavy sedation and looked at the tech with an expression that said, “Excuse me, but I am really sore where my chest tubes used to be and that hurts.” The rest of the echo went well and Cora laid quiet enough for her to finish.

When the tech was done she got a paige from Dr. Bove and he wanted another view of Cora's heart. Then it was back to the room and waiting for the news. Cora's discharge meds were already picked up and we were packed and ready to go. After three hours without any news the nurses started to paige the floor doctors to see what was taking so long.

At 4pm the Doctor came in with the news form the echo-cardiogram. Its when he closed the door to the Cora's room that I new it wasn't the best news. While the repair has diminished Cora's regurge, there is already signs that the repair isn't healing quite like it was suppose too. The echo after surgery showed very mild regurge from the repair and equal pressure in the chambers. Today's echo showed “jets of regurge” between the sutures of the repair and an increase to moderate regurge and  unequal pressure in the sides of the heart.

I sat an listened to this man tell me that we are so fortunate to have been able to be able to get some more growth on Cora and more strength on her before, (or if) the repair again lets go and she needs a mechanical valve operation. I heard him tell me that the only option next time is the mechanical valve. I heard him tell me that with luck Cora won't need another operation. Then I heard him tell me that often times children with this kind of repair and these kinds of results do end up coming back for the mechanical valve replacement surgery.

I heard all this....but my heart wasn't listening. My daughter is now on Captiprol again to help with the pumping function of her heart. She will remain on this indefinitely and long term. Again my mind heard this, my mouth asked the right questions and my mind listened to the answers. My heart was crying and my soul was wounded. I wanted so badly to fix this for my daughter and I couldn't.

I unpacked her things and got her set up for staying in the hospital again because they wanted to monitor her for a day or two while she takes the first couple of doses of Captiprol. This medicine can sometimes cause a real drop in blood pressure and they monitor her to make sure she doesn't have this happen. Even though she was on this medicine before the surgery and she tolerated it well, they aren't taking any chances with Cora.

I stood next to her crib and just looked at her. Cora was smiling at me and wiggling her little body. While I watched her, smiled at her and held  back my tears I remembered a moment:

Shortly after getting testing during my pregnancy and having it confirmed that Cora would be born with Down syndrome I stopped in at the Pickford Medical Center to let everyone know about the news. Laurie, a nurse that was working there at the time, took me into one of the exam rooms to talk with me. This is what she said, “Katrina, I know you. You want to take blame for this, you want to own this, you feel responsible. There is nothing that you did or didn't do during this pregnancy to cause Cora to have Down syndrome. It just happens. And you know what else? I believe that God gives these children to mom's that can handle it. You can handle this and anything that comes your way with Cora. You have been chosen to be her parent because God knew you have what it takes to give Cora the kind of life she deserves. He chose you because he knew you would love her no matter what.” By the time she was done talking with me we were both crying.

So here I am , still in the hospital with Cora instead of heading home and I have a huge “aha” moment. As Cora smiles at me and looks at me with those blue eyes that are often filled with ageless wisdom I am filled with happiness and joy at finally understanding I was the chosen mama for this child. It brings me peace during this step of our journey.

Sunday best

Its Sunday and the perfect day for Cora to get to wear her Sunday best.....her smile. 

This morning was another big morning for the little button.  She was all smiles and playing happily despite the fact that she was on a fasting for the sedation the doctor's would use when they removed the chest tubes today.  After seeing me this morning she did start to fuss a little bit. When she didn't think I understood that she was hungry she got a little fussier and started saying my name making the sucking motion.   This made me emotional and filled my heart with such happiness....Cora has been so filled with medicines and tiredness the last few weeks that she had stopped telling me when she was hungry.  To see this again was all I needed to start that tear train rolling.

I opted to have a dose of oxycodine with the percocet for her conscious sedation this morning because of her having such adverse reaction to the morphine.  The Doctor's that were on call this morning have been with Cora the two previous visits and agreed with me that she is not a candidate for morphine.  I tell you, she was a trooper and I was so very proud of this baby girl....she didn't whimper at all through the removal of the chest tubes until they pulled the stitches tight.  Then it was one little yell that ended in a huge pout.  The Doctor's both laughed when they saw that pout and Cora joined in with a huge smile of her own.

Once this was done the nurse and I gave Cora her first after surgery bath and she was unhooked from all the monitors.

So now Cora lies in the crib, full of mischief and play, dressed in a little gown and totally unhooked from all monitors.  Her breathing is normal (45 -50) and her heart rate is great (129) and she is looking pink again.  Despite all the bruising and her still being sore, she is only on Motrin and Tylenol with the oxycodone only as needed. They are still giving her oral Lasix and Aldactone. The nurses  were suppose to move her out of moderate care and into a regular room today but there was not a bed for her. This didn't bother the nurses in moderate care as they are happy that Cora is staying in their ward because she lights up whenever they peek into her bed and say hi.

Cora continues to work her magic even when she isn't 100% herself.  For me, that's the best thing this Sunday had to offer.

Playing with Horsey before chest tubes removed.

Cora talking with Horsey in their secret language

Rainbows and faith

November 19

This makes day five for Cora's stay in the Mott Children's Hospital. Today was definitely a better day for her. She was able to get off her high flow and is on room air and loving the fact that she no longer has a tube stuck in her nose. They decided to just remove the tubing to stop the water that kept flying into her nose and making Cora panic. The respiratory therapist watched her and Cora was breathing well enough to leave the tubing off. Yeah, one more tube gone.

One of Cora's chest tubes was leaking and when she would breathe or cough it would pull air back and forth within the drainage in the tube. So unfortunately, the dressing had to be redone and the all the tape again removed and replaced. Cora's skin is not doing very well with all this and she is bleeding from places that haven't seen surgery, just the war of tape.

Despite all this, she is doing well today. Actually got a few smiles, several “oh-ma's” and some raspberries today.

The Doctors are looking at moving Cora out of moderate care and into a regular room tomorrow . Her chest tubes are suppose to be removed tomorrow as well. I am sure once this happens Cora will do even better in the pain management department. The new formula they put Cora on seems to be working well and the fatty drainage has decreased a great deal. She wouldn't eat it warmed up, but loves it cold and sucks it right down. Cora is nursing from the bottle again with no sweating or panting.

“”Those that believe the storm will pass will see the rainbow before others know the rain has stopped.”” These words kept echoing through my mind as I watched Cora today. By her presence in my life and watching her continue to be undaunted by yet another surgery and various setbacks, she has taught me that even in times of struggle we must believe and have faith. And most times this has to be done blindly and without worrying that the outcome will be what we want it to be. Because the actual outcome is usually better than anything we could have imagined.

No high flow anymore!

 sharing raspberries

A setback

Sorry  Cora and I didn't blog yesterday.  The past two days have been very eventful, and not in a great way.  Yesterday was spent rocking, holding, consoling and begging Cora to feel better and settle.  The took her off the morphine and she was tolerating the Oxycodone, Motrin and Tylenol pretty well.  But when it got to the half hour before a dose of pain medicine Cora would be highly agitated and twisting from side to side.  Completely understandable, yet so hard for me to watch.  As a mama I want to make everything okay for Cora and there was nothing I could do.  When she would look at me with those blue eyes and say her version of "mama" it would make me feel so helpless that I could do nothing to ease her discomfort accept hold her and tell her I loved her and kiss that little forehead of hers.

During all this we did have a fun visit from some of the University of Michigan athletes who volunteer their time to visit the children at the hospital.  These four students were wonderful to talk with and signed a baseball cap for Cora.  I have to give them a shout out on Cora's blog and commend them for volunteering their time.

Finally last night about 11pm she was totally wore out and fell asleep.  She slept through the night and was up at 7am this morning.  As the day progressed Cora's breathing became labored and she started using her chest to pull in her breath and her retractions were back.  At one point her heart was racing at 170 bpm and her breathing was at 67 - 88 bpm.  She had also spiked a fever. And Cora is allergic to the hospital blankets and sheets and started to develop a rash.

At this point I started to feel overwhelmed and emotional. Totally at a loss for my daughter.

This afternoon they were able to get her fever down, although she was still breathing labored.  So the fellow on the floor increased her high flow back up to 3 (it was being weaned to room air oxygen) to help Cora again with the breathing.  Her drainage has not slowed very much and she has started losing "kile" (sp?) with the other drainage.  This is losing fat from one of her lymph nodes and that means that the formula she is eating is putting the fat out of her chest tubes.  Lord, I hope I said that right for ya'll.

When I finally got her to sleep this evening her heart beat was doing well again and her breathing was slowed to 50 bpm.  We are using the two blankets that I brought with me for the trip to keep her off the hospital linens and her rash has stopped. What was going to be a short stay in the hospital is looking like a longer one.  But if this is what Cora needs, this is what Cora gets.

In all of this, Cora still finds the energy to smile at me and give me a raspberry.  Never thought I would be happy to see one of my kids spit at me...

 A rare moment of rest with Mama

 Emily taking her turn

 Finally a restful sleep