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.