All in the family

Cora has definitely made us all grow.  Everyone in this household has benefited from Cora being a part of this family.  I remember, in looking back, being pregnant and so very scared for the child I was carrying and worrying about what kind of life she would lead.  I see her today and I think to myself, "Wow, what was I so worried about?"

A simple smile and little cuddle and all is right with the world again.  Such an absolute dear-heart for anyone that remains open to her love and angelic warmth that she shares with another person.  Not asking for anything in return...just expecting unconditional love and acceptance.

Phoenix wanted to help give the medicine to Cora.  He doesn't insert the NG Tube because of all that is involved with the insertion and making sure its in the right place, but he is more than willing to measure the medicine and help give it to her (under my watchful eye).  I am comfortable with that and even encourage him to be instrumental in this part of her care.  He is such an open person and cares for his sister a great deal and is already very protective of her.  To see the little boy starting to become a mature young man is the blessing that Cora has offered him through this opportunity to help care for her.

Life is good in this household.  For we all continue to learn and grow on this journey that Down syndrome has us traveling on, and everyone in the house is grabbing at the opportunity with both hands and open hearts. Admittedly, something we might not have done a year ago.

Eleven month old Cora

Yeah, she got to be eleven  months old on a day that was snowing and cold.  Cora is doing well with the change to her medicine.  She seems a little more tired than usual but I attribute that to her body adjusting to the change.  Her mood is great and there is not any additional swelling.  I count this all as a huge blessing! 

Eleven month milestones:

• Cora weighs 13 pounds and is 26 1/2 inches long
• signs - "all done", "milk", "mama", and starting to sign "food/more", starting to wave hello
• says - "mama" and "hi" (sometimes)
• rolls in any direction she needs- to get to where she wants to go
• nods her head "yes", "no"
• starting to push her butt into the air while on extended arms
• shows seperation anxiety
• shows stranger awareness and refusal to go to someone she doesn't want to
• she has developed food awareness and will watch whoever is eating with an unwavering gaze (yes, this can be nerve wracking at times..haha)
• babbles baby talk to her toys, dog, blanket, hands, feet, etc.
• puts her feet in her mouth and chews on her toes (will even pull off her socks to achieve this)
• midline play with both hands and can pass the object from one hand to the next to investigate it or to adjust her handhold
• grabs a toy, rolls on her back and begins to play with the toy
• pulls DVD's from the stand and plays with them and looks intently at the pictures and then gets another one
• when you ask Cora a question she will wait until you are done and then babble baby talk in answer
• sits with minimal support on your lap
• holds both hands out if you ask her if she wants to be held or picked up
• she scoots out of your lap to reach any thing that has grabbed her attention
• will try to slide her "your baby can read" book open to see the picture behind it

Cora is making huge progress and it seems like she is making up for lost time.  I see her get frustrated with herself at not being able to do what she wants to.  She lets out a loud line of jibberish, kicks her feet and bounces her tummy and then tries again.  I love seeing the determination in Cora and her continual fight to thrive in her world.  Such an absolute blessing for this baby girl.  Happy Eleven months Cora!

Cora's news

Yesterday Cora had physical therapy and occupational therapy with Sarah and Veronica.  They were so impressed with her progress I think their cheeks were sore by the time left our house.  They smiled for the the whole hour that they worked with Cora.  Veronica brought a tent like structure for Cora to work her way through.  It will help encourage her to use her legs more and to try forward movement rather than rolling and turning on the floor to reach her desired location.  By the second try, Cora had the idea of what they wanted and was working very hard to achieve it on her own power.  It is amazing to see this child learn at such a great pace.  When they had worked for 50 minutes, Cora looked directly at Sarah and signed "milk".  They both started laughing and agreed with Cora that so much work was indeed thirsty work.  Thus the session ended with hugs, smiles, and a bottle of milk to celebrate.

Today found Cora at the new pediatric cardiologist office with Dr. Webb.  Dr Webb satellites for Mott children's hospital (University of Michigan).  Dr. Statler (Cora's pediatrician) met us in the lobby of the hospital and we attended this meeting together.  Yes, you read it right, Cora's doctor went with us to meet the doctor.  As always, Cora was weighed upon arrival and it showed she hasn't lost any weight since yesterday...yeehaw!  That means she is still gaining, or at least, not losing!  Once Cora was weighed we were given a room and we waited, and waited, and waited and waited......one and a half hours we waited.  The great news about this?  Dr. Statler and I got to have a girl chat and Dr. Statler also got to hold Cora for as long as she wanted too.  But even after waiting this long it was time to not be courteous and look for some action.

<< I have a theory that they don't put clocks in the exam room because the doctor's don't want you to know how long you have waited.  The advantage of this?  By the time you realize that you have been sitting there awhile and look at your cell phone you are surprised to see how much time has past.  The disadvantage?  By the time you realize you have been sitting there awhile and you look at your cell phone you are frustrated that you have been forgotten for an hour and a half.  It was reassuring though to have a doctor sitting with you and have that doctor agree that this was not OK.>>

Despite this long wait, the report was good news.  Cora's heart is not worse than it was and she looked great on the EKG and her overall appearance was pleasing to the new cardiologist doctor.  The other good news?  The cardiologist is lowering her diuretic doses to two times a day instead of three.  The doctor thinks that being on so much diuretic might be the underlying problem for the weight gain.  We will see in a few days if this is the case.

So for the next few weeks we stay with the weekly weigh-ins, see Dr. Statler and keep working on lowering the diuretic doses and Cora will be monitored closely to make sure she tolerates the lowering of the diuretic doses.

And the purple hands that Cora gets when she is working hard or playing hard?  That is a normal response for some children with Down syndrome.  It is a mechanism in the body that shuts down capillary refill and it turns the hands and sometimes feet purple.  Disconcerting for the parent, but not uncomfortable for the child.  Thanks for that extra tidbit of information Dr. Webb. One less thing for me to worry over...another yeehaw!

It was great news my friends!  I and Dr Statler shared the biggest grins and hugs when we left there today.  You would have thought we were two giddy teenagers we were so happy.  But it is happy that is well deserved....for Cora has worked hard this past ten months to finally have a cardiologist doctor's appointment that was all good news.

 Cora (and big sister Emily)  after arriving home from the long day.

Down syndrome is awesome

I made this heart for Cora.  I think I am going to make it into a t-shirt for the little angel and myself. Would you be interested in having one?  

Today was a big day, we are both wore out. Tomorrow we go to the new pediatric cardiologist, so I figure it is best to blog about both days tomorrow and then you will be caught up on the news of Cora's journey. See you tomorrow...

Problem spelled different

Cora has been referred to the Devoss children's hospital for a neurological developmental evaluation.  This might help us understand why Cora is not gaining weight at the rate she should be and maybe even answer questions about the struggle it is has been.  I am on the fence still about this one.

I know that it will be helpful, but is it really necessary at this point?  Cora has gained in the last four weeks, not a great deal of pudgey rolling baby curves yet it is a gain of 13 ounces.  In the hisotry of the past months this is a definate improvement for Cora and is a sign that everything is finally coming together for this baby girl. 

She signs, laughs, babbles, plays, rolls, etc.  All the things that babies do.  A little behind physically? Yes.  A little behind developmentally? Yes.  And yet there are other areas that she is exhibiting a higher than expected ability.  Like the fact that she says "mama", can shake her head "yes" and "no" and has no problem signing "all done" when she is exhausted from the physical therapy and cannot do anymore in that session.

Do I, at this point, warrant a trip to Grand Rapids to the Devoss children's hospital and put her through more testing?  Or do I choose to just wait a little longer and see how things go?  I am not looking through rose colored glasses at this point with Cora, merely trying to decide if it is really truly needed or can it wait a few more months to see how Cora does with the weight gain.  I know, without a doubt, that in the future there will be more testing for Cora and there still looms that chance of another heart surgery.  (That mechanical valve threat still looms in my subconscious thoughts quite often.) 

For today I am on the fence and kind of steering toward a wait and see philosophy.  I have learned in my recent training that  one should see a problem as it really is and not make it worse than what it is.

Seeing the problem and expanding it means - Fear would have me running down there and have all the testing done possible to find out if there is a problem with Cora.

Seeing the problem as it is - She struggles to gain weight but she is gaining at a steady slow rate.  The mom in me wants this beautiful baby to continue to play, rest and eat as much as she can with limited poking and prodding.  After all, poking and prodding is all she's known for the first part of her short life.  This past 2 months has given her an idea of what a babies life is usually like. 

If Cora deserves anything, its knowing that a babies life is filled with love and fun.  Not poking and testing. I truly want to bless Cora with an  inspired life and sometimes that means making a hard choice (that might go against professional advice) and seeing a problem as it is....and not worse than it is.

Cora weighs in

Had Cora at the clinic today to be weighed.  I got her ready and was waiting for the scale to zero out before I could place her on the scale and get her weighed.  While I was waiting I cradled her little body in my arms to keep her from getting chilled.  Cora laid her head on my shoulder , grabbed my shirt with her left hand and started patting my shoulder with her right hand.  I just swayed with her gently and relished in sharing the warmth with Cora in this beautiful moment.  I was feeling a little anxious and it was like Cora was telling me it was going to be OK and not to worry.  Like she was reminding me that I had agreed to not focus on weight gain and just enjoy the day to day eating.

This child of mine continues to amaze me.  After getting weighed ( Cora weighed in at 12 pounds 15 ounces - an increase of 13 ounces in the last 4 weeks!!) Cora and I made plans to meet up with her Auntie Lee and share lunch.  Once Auntie Lee joined us, Cora was greeted with smiles and at the earliest moment she found herself in Auntie's arms.  Cora did not complain and even rewarded Auntie Lee with several hugs.  Cora seemed to sense Lee's quiet mood and decided to help lighten the mood by moving Auntie's nose.  Cora helped by putting her fingers in Auntie's nose and pulling on it.  We just laughed really hard and it felt wonderful to share this moment of laughter with Cora and Lee.

When I look at Cora , I work at not building her future for her or trying to make my thoughts leap to far ahead of today. When I get asked if I am going to mainstream her in school or put her in special ed, I remind myself and the other person that she is 10 months old. It would be easy for me to leap ahead and start pondering big thoughts of tomorrow.  Yet, I stay focused on who she is and what she can do today.....not what she will be or what she will do tomorrow, or next week, or next year. 

So my lesson for today?  Its okay to think those bigger thoughts but  not to dwell on the future. The real pleasures in life come from relishing the small moments of today.  And I truly relish the moment of seeing Cora with her fingers up Auntie's nose and the look of surprise on Lee's face and the pleasure it gave me to hear the burst of laughter that followed. 

Pictures too cute to keep

Today's blog is a few pictures of Cora.  You can see her cheeks filling out just a little bit.  Her overall appearance seems to be improving.  Her coloring is better and her humor becomes more evident everyday.  So without delay, please enjoy the recent photos of Cora Jean!

  One more roll and I will be under the couch mama...don't tell Phoenix where I am hiding!

 This growing up sure makes a girl tired.

 I can pull the tube out real quick and make a run for it...now if I just knew how to get out of this highchair!

 Please...another healthy smoothie?  Really?  I was hoping for formula in the big bottle with pizza on the side.

 Did you just say I look like Albert Einstein?  I DO NOT!  Who is that anyway?

Sunday rolls on

Cora spent the day traveling along the floor, pulling dvd's off the bottom shelf of a bookcase and staring anyone down who was eating.  Her antics brought me such joy that at one point tears filled my eyes.  I was filled with such love and understanding for this child.  I watched her roll this way and that way.  I saw her reach up, grab a dvd and put both hands on the dvd to look at the colors of the case.  I could see the concentration in her eyes and the determination in the direction of her rolls.  She was totally engrossed in whatever had caught her curiosity and gave her the next direction of her rolling to discover what it was that had needed her discovery.

At one point I was so tickled with her abilities that I clapped my hands and told her how proud of her I was and just laughed at the look on her face.  Cora gave me the biggest smile and a little "hoot hoot" a bunch of happy leg kicks and her blue eyes just sparkled with her laughter.

It brought me to tears for the simple fact that she, in these moments today, was exactly like my other children.  She wasn't an infant with Down syndrome.  She wasn't an infant with special needs.  There was nothing different about Cora than any of my other children.  She was a ten month old baby who was enthralled with her world and determined to explore everything she could get too.  Normal??  Yep.  Average??  Yep. 

I am reminded so often (by others) that Cora has Down syndrome and what I need to do or not to do for her and her care and her well being.  I am always aware of her needs, whether it be subconsciously or consciously.  Today I was gifted with a time of normalcy and no reminders.  Today I was gifted with an absolutely astounding normal moment.  That, my friends, is what brought tears to my eyes and filled my heart with overflowing gratitude.  The sparkling blue eyes were an added bonus.

 

Women time

Cora  had lunch with the women today.  She is usually the topic of conversation, but today she was just chillin' in Auntie Lee's arms.  And stayed there for the entire lunch because once Auntie got a hold of her she didn't want to share.

What a blessing for me!  I got to eat my lunch and had desert.  What a blessing for Cora!  She got to spend time with some of her greatest supporters on this journey of hers.  She had lunch time with Auntie Lee, Auntie Kim, GG and mama.  That's pretty good company I think...

I am continually amazed by this baby girl and her ability to adapt and grow.  She was eating bread (with dressing on it) and egg yolks and a had a few bites of cheesecake for desert.  She was keeping it all in her mouth and chewing like a pro.  For me it is so rewarding to see her one day not able to do something, and the next day doing it like she has been for days.  Cora even accomplished sucking from the straw and holding the straw in her mouth.  Once she realized we found it humorous to see the straw sticking out of her mouth she was game to try again and again.

The blessing in lunch today was to witness the softness and love that Cora offers to another woman...without expecting anything in return.  It is like Cora has a sixth sense  and knows when a woman is needing a hug and cuddles.  I am told that she has a way of calming the soul when you hold her and making one feel peaceful.  I have often felt this when holding Cora but have attributed it to a mother's love and bond.   To hear my "heart sisters" tell me that they feel this same gift from Cora that I feel is such a wonderful knowing for me.

 Auntie giving Cora a straw using lesson.

It reassures me that the path we travel is the chosen one.  Now we just have to keep from stumbling along the way.

 Cora after lunch with the women.

Cora teaches again

Yesterday Cora and I traveled to Charlevoix, Mi to see Dr. Statler. Dr. Statler has been practicing there at a new pediatrics office and I was so releived that Cora and I could go there and see her. We haven't seen the good doctor since her goodbye dinner at Applebees . Some of Cora's latest colorings have worried me a little bit and it was reassuring to have Dr. Statler look at Cora and tell me that its all okay.

While Cora's hands are turning purple with any extensive exercise, her well being and overall happiness is at a high. The swelling in her hands and feet come and go depending on how much she is rolling around and playing, yet she babbles away and continues on her mission to reach whatever toy has captured her attention.

When being weighed yesterday the scale showed that Cora has gained another ounce. Yeah for her! Dr. Statler and I both looked at each other and smiled a huge chest-ire cat smile and she said, “An ounce in the right direction, we'll take it!”. I agreed whole heartily.

The four hour trip leaves time for reflection while I am driving, and a time of rest for Cora. The truck is quiet, the baby babbles softly and blows raspberries and music plays quietly in the background. The sun shines in the windshield and warms the truck on a cold winter day and the roads were clear. Reflection is an easy thing when the day is quiet and the truck is filled with a babies quiet snores. I started thinking about my and Cora's travels and this journey we are on. Traveling the two hours to see a pediatrician to some parents would seem ridiculous. For me, it is a necessity to Cora's overall health and well being. This is not something I would have considered doing if you had asked me before Cora was conceived. I probably would have looked at you funny and said “No way, would I travel four hours to take my child to a doctor just for a check up.” But travel four hours is just what I did yesterday and I did it for my child. Why? Because Cora needs to be with a doctor who has traveled this journey with us since the first week of Cora's life. A doctor who knows my child as well as I do and who can tell , just by looking at her and holding her, how well Cora is or isn't doing.

Cora is worth the time and she makes these moments of quiet a welcome gift for her chauffeur. Quiet leads to peace and in that moment of reflection I again understood what this child has given to me and to others. Some label her as a special needs infant or just a baby with Down syndrome, one with a heart defect that has jetting sutures. Some see her as a patient number and miss out on the wonderful gift she has to offer.

For, when I look into her eyes I see abundant good, awesome joy, heartfelt peace and open love. I see myself in her eyes and I am thankful for this quiet reflective moment she has been able to offer me. A moment I might have missed if I had not chosen to take this journey with Cora Jean. I've said it before in this blog, and I am gonna say it again...thank God she is sharing her gift with me and that I am still young enough to learn from a child.

Double Take

I make it a habit to look in the mirror each morning and greet the day by looking into my eyes and telling myself that I am a beautiful and phenomenal woman.  I tell myself that I am going to help someone today and give what I can of this love that I have inside of me because I am a lovable person and a lovely woman.

Today, while I was working on paperwork, Cora worked her way to the closet mirror and proceeded to gab quite a bit with the baby she found there.  She was all smiles , and cute looks and baby babble.

I watched her and I thought "how wonderful that she finds herself so cute".  I started talking to her and telling her that the baby she was looking at was beautiful and wonderful and smart and loving.  I told her that the baby in the mirror was Cora and Cora is an amazing child that will grow into an amazing woman.  I told her to listen to the baby in the mirror when the world tells her different, because that baby in the mirror is her gift to herself.

Can you look yourself in the eyes in your mirror?  Can you smile and babble cute talk to yourself?
If not, you are missing out on a great blessing.  One that you can give to yourself.  A blessing that no one can take from you and no one else can give to you.

Let Cora give you that gift as she smiles at herself.  Maybe you can even give yourself a little kiss like Cora did to her mirror image.  Because there is no one else like you in the world, and God blessed you with his awesomeness.

No problem is permanent

I was reading in a book today that Colonel Sanders (the Kentucky Fried Chicken Guru) tried 1,009 times to get a yes before he was finally seen as a food genius instead of a funny man dressed in that white suit selling bites of chicken.  Did you know that Walt Disney was turned down 302 times before his dream of creating the worlds happiest place on earth was financed?

Okay, so where is this going?  I think for me it is so important to remember that persistence will have a reward in the end.  That no problem is permanent and even though it affect my life, it will at some point pass. Just like the heart failure and the two surgeries.  Just like anything else Cora will face.  It will present itself, it will be dealt with and it will pass.

I decided that in light of this information and this path of thinking that I was going to focus on giving Cora foods that would increase her weight instead of focusing on the "why" of her losing weight.  She is happy, playful, signing words, babbling baby talk, and just plain enjoying life.  She is full of cuddles and really starting to laugh.  She has even started this cute little "hoo hoo"sound.  She has one "hoo hoo" for happy and one "hoo hoo" for upset. 

I again remind myself to be grateful for the wisdom of  mother's before me.  I have been asking the elder women in my community, my family and in general what they would have done for a baby that wasn't gaining weight.  Some of the answers would put the fear in Cora's doctors, but others have been wonderful answers.  I know that at times our science is  not as advanced as the knowledge of  a mother's instinct.  Because of this I have found that Cora loves pumpkin mixed in with her cereal.  And she absolutely LOVES bacon grease....just kidding!

The problem of weight gain is being dealt with and it will pass.  For today, I am grateful for the ounces she has gained instead of focusing on how much she "should" or "needs" to weigh.  Really, in the happiness of her moments and the love she shares, its a small thing.

I wonder if she likes mashed potatoes with sour cream and butter?

Unsuccessful Crib Break

Cora tried to make a run for it during her nap time, but asleep before she was successful.  You gotta love her.  She just does the cutest things. 

 
Her new thing is to rub her feet up and down the crib slats while she listens to her musical giraffe and falls asleep.  It is not uncommon for me to find her like this lately.  Makes me laugh.  It is such a "average, normal" kid thing to do. 

Therapy team arrives

Cora has therapy today and worked her little abdominals really hard.  She likes the idea of sitting up, but doesn't quite have the coordination of sitting up or the muscle tone to do this .  We were shown a way of using her bobby pillow to help her learn how and to help develop those ab muscles that she will be needing for sitting and crawling.

Veronica (black hair) and Sarah (blond hair) both worked with Cora on the exercise.  By the end of the session , about 45 minutes, Cora was trying to sit up by herself.  The Early On Team left very happy with Cora's improvement and success today.

The homework for Cora is to continue sitting in her Bumbo seat, and for her to continue sitting up with the aid of her boppy pillow.  I also need to use a mirror or picture in front of her, on the floor, so she will straighten her arms to lift herself up and be able to look down at the picture.  This will help her learn to straighten her arms and ready her for crawling.  Cora is doing this now but not for a very long time.  By placing the mirror close to her on the play floor she will tend to stay on her straightened arms longer.

After they left Cora drank a full bottle and then napped.  She really deserved that rest.

Oh, and today at her weight check the scale showed a weight gain of 2 ounces.  Now for those of you that have been following the blog, you know how much this means to Cora.  So raise your hands in the air and let out a "WOOT< WOOT" for Cora.  Because I sure did at Pickford Medical did when I saw the scale and it read 12 pounds 14 ounces.  I think there is something to that coconut oil (mct oil).