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.