Wednesday, May 30, 2012

I didn't know....

That a baby girl could eat soooooo much!  Cora's appetite suddenly took a turn and this child can put away baby cereal, and food like a pro.  For the past few months Cora has been eating all day long, a little bite here and there.  A few bites of everyone's food (within reason) and lots of milk.  She was always signing for "milk"  and "more milk"  and after a few bites of food would say "all done".  I never really worried about it, just thought it was great that she was eating all day long along with the milk bottles. 

Let me tell you.......since last Friday's visit and the change to her meds, Cora has taken off in the eating department.  Breakfast is still the same -  a cup of oatmeal / yogurt mix and a bottle.  The rest of the day is where the change has really been seen.  She is now eating a solid three meals and two solid snack times in between.

I texted Dr. Statler last night and asked her "Do you think that the change in meds has increased Cora's appetite?"  In keeping the food journal for Cora I have been able to literally see the growth in her appetite that last few days and wanted to share the results and ask that important question.
 Dr. Statler's answer went like this " Probably not increasing her appetite, but rather no longer suppressing it!!! We'll take it and be thrilled!!! Whooo hoooo!!!  Go Cora!!!"

I agree 100%.

Friday, May 25, 2012

Mott's Childrens Hospital comes to Cora

Yesterday and Today found us in Petoskey.  Yesterday was an echo for Cora and today was her appointment with Dr. Webb.  Dr. Webb is the pediatric cardiologist (U of M children's hospital) who satellites in Petoskey once a month.  Cora's original appointment was to be in August, but since she has been struggling with weight gain the appointment was pushed ahead to this week.

Cora laid quiet, with no sedation and no toys, for 1 hour and 20 minutes for the echo cardiogram yesterday.  Am I bragging?  Absolutely!  She took it all in stride.  Just making funny noises, funny faces and softly jabbering and trying to pull the cords off her tummy during the test.  The only time she fussed and cried was when the tech played the heart sounds REALLY loud.  Yep, loud enough it even scared me when it came on and hurt my ears.  Cora cried and I consoled and then it was back to testing.

Today, Dr Webb was seeing us for the results of yesterdays echo cardiogram.  I went back to Petoskey this morning with bated breath.  Spent the time driving in contemplation and prayer.  Prayer for understanding the journey and results of the test, prayer for peace and patience and prayer for Cora's health.  It was not a wasted drive by any means.

Dr. Statler (Cora's pediatrician) met us in the waiting room of the Burns clinic.  Cora greeted her with smiles and jabbers and some really sloppy kisses.  But when they are Cora kisses, even the slobbery chin is overlooked and the wet cheek that is left in place of the kiss is gently wiped dry. 

So, here is the news.  Cora's blood flow regurge has increased. The left heart chamber is now back to normal size, her lungs were clear and her liver was the right size.  The sweating and panting that Cora has been showing lately might be do to lack of "fitness" from all the months she lost healing.  Some sweating is now a good thing!  Or it may be do to the increased regurge that is happening.  While I need to continue to monitor her panting and amount of sweating, Cora is encouraged to keep working hard.

The final decision was to "not rock the boat" and keep on with Cora as I have been doing.  Dr. Webb wants to see her back again in August and the regurge is to be monitored.  I am to keep a food journal for Cora to show what Cora is eating and what kind of volumes she is taking in.  There was another adjustment to Cora's medicine and then we were out the door.

With hugs and thank yous  Cora and I left Dr. Statler and began the trip back home.  Petoskey twice in two days...whew!  The good news that came from those miles under the tires....YEAH!  Maybe that time driving was meant to be spent in prayer and for staying in touch with the one - the Creator - who gifted me with this child and allows me to share the journey raising one of his most precious gifts.  No, not maybe.....absolutely!!

Tuesday, May 22, 2012

Cora tries hard

Early On visited again to work with Cora and her physical therapy.  Cora was playing by the light stand when Veronica arrived.  Veronica greeted her with smiles and waves and told Cora to "come here" so they could get started.  Cora just kept laying where she was and waved to Veronica.  It was like she was telling Veronica "hello, but today I don't have much energy." 

I went over to Cora and put my hands behind her feet and Cora pushed up on her knees and moved forward on her arms.  Not crawling, but more of a forward push and fall maneuver.  Veronica was so happy and excited to see that Cora was doing this.  We worked our way across the floor slowly, but surely, and soon Cora had her hands on Veronica's.  They were both smiling at the accomplishment.  My heart swelled with pride at the amount of "try" Cora has and continues to show.  Cora had traveled a good ten feet on her own power with my hands just being placed as a feet pushing point.

To see and watch the pleasure it gives Cora is well worth the patience it takes to allow her the time she needs to get all the legs and arms and hands where they need to be to get where she wants to go.  This was definitely a milestone for Cora.  She is nearing her 14 month mark and still throwing a surprise milestone at us.  What an absolute blessing.

Once Cora achieved this she started to play with a toy that has a top opening to put an over sized coin into.  Veronica showed Cora how to put the coin on top and let go.  Within two tries Cora was putting the coin on top of the toy and trying to put it into the slot.  With help in rotating her hand she was able to put the coin in the slot, with additional help she let go of the coin and was rewarded with a musical tune.  Cora did this for about ten minutes, sitting at times by herself for up to 60 seconds.

Between the crawling and the toy activity after 35 minutes Cora was done.  She looked back at Veronica and made a crying face, then looked at me.  Her point made, Veronica gave her to me and I started to cuddle with my little championette.  Veronica and I both noticed that Cora was breathing harder and faster than usual and that she had grown tired much sooner than usual - it was definately a stopping point.  Cora had tried hard and her little body just wasn't up to it.

Therapy session over and Cora was waving goodbye and saying baba.  A short bottle drink later and she was resting and napping peacefully.  I stood and watched her sleeping in her crib.  This little baby girl had worked so hard and was till sweating a little after the workout and the bottle and I stood there thankful that the cardiologist was seeing us on Friday. 

As I stood there watching Cora she gave a little sigh and rolled onto her side.  Then she smiled a little smile and made sucking motions with her mouth.  Yes, this is the beautiful little angel Creator gifted me with.  I stand there watching her as she smiles and sleeps peacefully.  All is as it should be.....

Friday, May 18, 2012

Much needed Optimism

Early On came today and evaluated Cora's progress and wrote down the coming goals and achievements in the next six months.  When I read the goals that were written for Cora in the last six months I was amazed at how many of them she had actually achieved.  She has come such a long way.  For an infant that spent the majority of her first year in naps, resting, tube feedings, open heart surgeries and recovery and just getting from one day into the next, she is absolutely amazing.

While she is struggling a little right now, overall her main goal in life is happiness and toys.  She continues to cuddle and give kisses.  She will talk off the ear of an avid listener.  She tries to feed her crackers to Aunties cleavage and makes us all laugh.  She will tilt her head sideways and look at your mouth intensely if you are doing a new movement with your lips or saying a new word.

The review was optimistic and I strive to stay in that frame of mind for Cora.  It is hard some days.  When I see her playing and she stops in the middle of playing and lays her head down, lies quiet and tries to catch her breath I struggle to stay calm. 

Having Early on here today was refreshing, because instead of hearing about what Cora isn't doing, or hearing about the concerns, it was a morning filled with suggestions and optimistic hope for the coming six months.

At this point in the journey that's exactly what was needed.

Monday, May 14, 2012

Cora struggles.....a little

Went for the usual appointment with Cora today.  Her length is 27 1/4" and her weight is still at 14 lbs and 15 ounces.  This is no change since two weeks ago.  Sigh!

What to do?  Love her with everything I have....and then some.  Cora greeted everyone today with a smile and some silly jabbering.  This is always nice to see and hear because Cora can still be very choosy about who she will talk with and smile at and she definately won't let many people hold her.

She is doing all the stuff that babies do, even pushing a little with her arms, just not gaining weight.  Insert another sigh here!

Tonight finds Cora snuggling up for her evening bottle and while she drinks she dozes and gently touches her palm to my mouth.  She loves the evening hand kisses and as we exchange a knowing look I feel my heart skip a beat with that slight fear that something is not quite right.

Go away, I tell that thought.  Come on in, I tell another thought, this one has me smiling back into those blue eyes and I say out loud, "Trust me Cora.  We can get through this too."

Thursday, May 10, 2012

Cora wakes up

Early-on came today....and yep I forgot.  Cora was napping away and I was walking into the kitchen when the alarm on my cell phone let me know we had an appointment.  I looked at it to see that
 Early-on was coming and then looked out the window to see the two women walking towards the house.  OOps!!

Well, it worked out because they were getting the evaluation part of the testing done before the meeting next Friday with all of the Early-on crew for Cora's goals and planning for the coming six months so they didn't need Cora to do a bunch of therapy work.  I woke Cora up and she was a real trooper.  For a baby that had a 40 minute nap (the usual is 3 hours) she was all game to try and show off her new skills.

When all was said and done, they figure Cora is at the 6 - 8 month old age category for physical abilities and that verbally she is at the 10 - 12 month old category.  Despite the fact that Cora has Down syndrome and the charts are different for her, I felt this was all some very positive news. 

Yeah for Cora waking up happy from a nap, because this was much needed positive news,
 and it was definately worth cutting a nap short for that kind of news.

Tuesday, May 8, 2012

Cora's Self-Feeding lesson

Perseverance.  That's what I would love to call this post, but the other title is a little catchier.  I have been working on getting Cora to feed herself for a little while now.  She still likes to open her mouth like a little bird and have us put the food on her tongue.  This is OK for most things but it has been getting to a point where she needs to learn this new skill.  So, I started the school of self feeding.

I have learned with Cora that the more you can think outside of the box, the better and faster she will catch on.  Cora seems to have been born with a feedback that makes her push against pressure rather than give with the pressure.  Let me explain....

A prey youngster, such as a foal (baby horse), is born with opposition reflex.  It is born leaning into any pressure; its natures built in life saver.  If a dog were to attack a foal, it most likely goes for a tummy grab.  If the foal were born moving away from pressure it would have a life threatening injury if it pulled away from an attack.  Being that it is born with opposition reflex, the foal will lean into the pressure and have a greater chance of escape with less injury.  It would be better able to kick and defend itself by leaning into the attack.

I saw this with Cora.  I know, i know,  she's not a horse.  Yet, some of her reflexes are the same as that newborn foal.  When I was teaching Cora to bend her arm (with my hand on her hand)and find her mouth with the food she held in her hand, she would straighten her arm out and push against me with all her strength.  I was getting nowhere with her.  She was getting frustrated and tired with me.  Then, when I started thinking about Cora and her response, I started comparing it to my years of horse training and started thinking like a horse trainer.  I figured if she was leaning into pressure (just like a foal) then I needed to change where I put the pressure.

I started pushing on the elbow crease and she started to naturally bend her elbow.  Up shot the cookie right into her chin.  Hmmmmmm, this seemed to work.  So I pushed again, up shot her arm and this time the cookie hit her lip.  TWANG! I saw Cora's eyes light up - the light bulb was lit and Cora was all game for this now.  I reached for her arm and pushed on the crease .....up shot the cookie and hit her in the cheek.  Cora let out a frustrated "EH" and I knew then that she completely understood what was needed.  Again and again we worked on this, with me gently guiding the cookie into her mouth if she came close.  Within 10 minutes Cora was getting the cookie into her mouth with now just a touch on her elbow crease.

Today, I can hand her a teething cookie and she gets it into her own mouth.  She just recently mastered picking the teething cookie up from her highchair  tray and getting it into her mouth.

If Cora and I hadn't persevered and if I didn't know how to think outside the box.  If Creator hadn't given me the life passion to train horses and people and the knowledge about opposition reflex, we might still be working at this new skill.  Both of us frustrated and impatient with each other. 

Creator not only gave me this child, he also prepared me in my life lessons before Cora arrived. 



So, instead of dwelling on the "what if " -  I am dwelling in the glory of watching my beautiful baby girl make a mess of her face while she eats a teething cookie......all by herself.

Saturday, May 5, 2012

cora's growth

While the Doctor's still look at Cora's slow weight gain, I can't help but be reminded that this little girl may be 12 months old chronologically, physically she is 6 months old.  Here is what I mean.  If Cora struggled with her health both physically and developmentally from the time of birth until the second open heart surgery, doesn't this mean that even if she was clocking in days, she wasn't clocking in development. (That would put her physically at a six month old level)

Those first months of Cora's life were filled with a daily struggle just to survive.  The first year of her life was full of more pain, and struggle than most people endure in a lifetime.  So, being that she didn't have the energy to learn the things like sitting on her own, pushing up on her arms, or even finishing a bottle without sweating and panting, she most likely didn't have the energy to put into growth.

I see Cora developing so much these last few weeks.  She is sitting more on her own.  She has learned to brace herself with her arms on her legs to keep her balance.  She even drank some of my smoothie from a straw.  This past week she has added the word "no" to her vocabulary and today when upset with my mom, she reached for big sister (I was outside with a client) and said the word "Emily" very clearly.

There are so many areas that Cora throws the curve of what is expected of an infant with Down syndrome out the window, that I wonder is the weight gain again needing to become an issue?  Yes, there was the warning that the repair was leaking and might let go, but is it time to push the panic button?

I can't.  I have to have the faith that this is all part of Cora's journey and sometimes faith is the strongest track for she and I to travel. 

So, for today, I take pride in the fact that Cora was able to yell for her big sister, and very clearly at that!  Because if you look at the time she has had the physical ability to do anything, she really isn't that far behind most six month old babies.  For Cora, you gotta take all the positive thinking you can get.  All that other stuff, well, that's for another day....
Cora playing peek-a-boo.

Wednesday, May 2, 2012

Leaps and bounds

Cora continues to amaze those who's life she touches.  It is such a blessing for me as her parent to see the reaction of others when Cora shows off one of her new found talents.

These past few weeks have been filled with achievements for Cora.  They have also been filled with doctor visits and vaccinations.  Since Cora got behind on her vaccination schedule the clinic is playing catch up.  This means that every 30 days she is getting a round of vaccines, and this leaves her little legs sore and tender.  Yet, she bears it all with a smile and babbles.

Today finds Cora playing and getting on her knees more and more.  She can now push herself backwards.  Cora's word growth seems to be improving.  While she still mimics sounds and they are jumbled words, they are still in there and can often be recognized by people other than me.  She continues to sign and definitely gets her point across.

I look at this child and marvel at her continual good spirit and way of life. She takes it all in stride, but has no problem saying "no" when it is something that bothers her. A good lesson for any of us, I think. To be able to take life as it is, instead of forcing it into something that is not meant for us. And the gift of saying "no" when we feel it in our gut that it just isn't right for us. How many of us can learn that lesson from Cora. To just look the other person square in the eye and shake our head "no".

I have found that in caring for Cora and raising her she has given this gift to me.  I can now look you squarely in the eye and shake my head "no" when it is not in the best interest of Cora or the family.  To be able to say "no" in this pressure filled world and within a society that believes in instant gratification is truly a gift. 

Cora continues to hand me these tiny life lessons and I am so blessed that she does it with a smile and a cuddle.   Sometimes when I look into those blue eyes I could swear she is telling me, "Hang on tight mama!  The journey has just begun and you have many lessons to learn."  I am thankful that I have mastered the "no" lesson, not for my sake, but for Cora's.  I wonder what life lesson is next, don't you?
Cora reading her book.  She loves books!