We get much needed help

I got a phone call from a great person that suggested I go to the local health food store and ask for the MCT oil or something that work the same way. 

You know these moments, when someone tells you something that just makes so much sense you kind of want to slap yourself in the side of the head?  This was one of those times.  I go to the health food store in town pretty regular for different herbs and things that aren't processed and didn't even think of asking them for information.  Yep, just slap myself up the side of the head.  Haha.

Well, this friend of mine who I will call Lee, because I didn't ask her if I could use her name, suggested the health food store in town be my first stop on the agenda. 

I did go there and although they didn't have the MCT oil, they did order some and in the meantime I am using a organic coconut oil that has MCT in it.  Because, did you know that MCT oil comes from coconuts?  That's right , coconuts.

The moral of today's blog is this:
                                 1. Your never to old to have girlfriends and to take their advice.
                                  2.  As a mama, I will travel where I need to go to get Cora what she needs.

And Cora absolutely loves the taste of the oil when it is added to her formula. Life is looking up and hopefully putting weight on Cora's little body.

Sunday is funday

Yeah, we have a day of rest and play!  With no appointments and no driving to be anywhere.  What a blessed relief it is to get a day of just "down time."

I have been searching all the stores for baby foods that have a fat content listed in them.  I still hunt for the MCT OIL and have yet to find it.  My next step is to have it ordered for Cora from an online outlet.  This baby needs some fat in her diet and it is so disheartening to see her losing weight again.  I see her so full of energy and making progress with her motor skills, and then to get her weighed and find that she is again losing weight is disappointing.

So, in keeping with today being Sunday, I am praying for Cora to be able to gain weight and continue to prosper in her life and her journey. As a mother I feel helpless and at my wits end.  As a Life Coach I am driven to find something that will coincide with Cora's metabolism and all her medicine and help her gain the weight she needs to be able to grow.

For today, I take a breath, hold this precious baby girl, and thrive in the quiet of home and the relaxation of not having to go anywhere.  For if nothing else, I truly believe that LOVE will conquer all.

10 months for Cora

She made it another month and did it with all the energy and gusto that she could summon.  This week has us again busy and driving and driving and busy.  Being weighed today was a disappointment, for Cora has lost a few ounces and according to the Pickford scale is down to 12 pounds and 12 ounces this week.  This is a loss of 6 ounces from last weeks weigh in.  I continue to feed this child as much as she will eat and she continues to eat with much joy and yumminess.

Therapies were hard for Cora this week.  We have been working on the exercises since last week and the new signs.  While she recognizes the sign for "toy" now, she does not sign it yet.  During the physical and occupational therapy a new seat was introduced for Cora and she spent much of the time working on mid line grabs, mid line leg lifts and sitting in the seat unassisted.  Toward the end of the session Cora was definitely ready to stop and her old telling signs of too much showed up, the hands started to turn purple and swelling.  In all, it was a great session for Cora and her improvement in grabbing skills and holding things is growing in leaps and bounds.

Her newest trick is throwing herself forward while she is sitting on you and making a grab for whatever has caught her attention.  This is a wonderful development for us to see in Cora, but not so fun when you are the one trying to hand on to the propelling Cora.  She thinks its all fun and games and smiles with contentment at having reached what she was aiming for.

Cora is a whopping ten months old today and I am so thankful for yet another month and another milestone.  Raising Cora has been like living in the middle of a firestorm....thank God he has made me fireproof.  Because God might NOT take you out of the fire, but he will sure enough provide you with the protection you need to weather and survive the storm. 

 Cora five minutes after therapy. She fell asleep while I was telling the therapists goodbye.

 ten month old Cora

Cora is a daughter first!

I was approached by a friendly person who politely asked me, "How's it feel to be a mother to a Down Syndrome baby?"

Did your breath just leave you?  Did you have a moment of thinking , "What the heck?"  Because I sure did.  I politely answered the question with "My daughter is wonderful, however I have no idea how the Down Syndrome is doing."  Pretty cheeky I thought.  Unfortunately, the person who it was meant to put in their place totally did not understand my sarcasm and said "That's great." and walked away.

You see, for me, Cora is not Down Syndrome.  She is Cora.  She merely happens to have a third chromosome on her 21st pair of chromosomes and that gives her Down syndrome.  It in no way makes her less than my daughter.  It does not make her a Downs baby. 

I don't remember ever being asked "How does it feel to be a mom to another child?"  or "How does it feel to have another daughter?  or son?"  when I had my other babies with me.  People were ready and handy with the congratulations for my other kids when they were babies.  For some reason, it is assumed that because Cora is not your average baby (for lack of a better term) I don't need the congratulations.

I understand that it makes people uncomfortable, for something that is seen as not the norm for our society is viewed as less than worthy or less than acceptable, therefore no congratulations needed, just discomfort from others in how to be nice to me or to Cora.  I understand all that, yet, I wonder.

I wonder if the lady at the circus who was advertised as the "Bearded Lady" to draw customers ever longed to be known by her name and not her appearance.  I am sure that she would have loved to be known as a woman first, a woman with a name second and last of all the woman with a beard.  Did she struggle with the same uncomfortable verbal exchange that confronts Cora and I at times? 

In all I guess today's question was far friendlier than the day I was asked , "Are you gonna try again?" when the woman realized my newborn had Down syndrome.  I did have the common sense to hold my cheeky wit in place that day and just smiled and said, "No, why?"  Because at that moment in my baby blues and this beautiful 3 week old daughter sleeping in her car seat in the shopping buggy , she was exactly what I wanted. 

 The confrontations and rude questions will continue to be there through our journey, and the answers haven't really gotten any better (maybe a bit more smart assy), but through it all I still have........A beautiful, sweet baby smelling, snugly, daughter. And you know what, nine months later she still is all that and much more.

Yoga makes a baby tired...heehee

All that stretching and toe talking wore the little button out.  She is now napping peacefully in her playpen. 

And I am happy to report that she is again gaining weight.  Once small ounce at a time and every ounce counts.  So relieved that Cora is finally again on the upswing.  The doctor's think that she was getting to dehydrated with all the diuretics and having cut one of the medicines in half allowed Cora to start gaining weight again.  We are still at thirteen doses of medicine everyday just a little less in the amount of the one diuretic.  All is well with this little napper.  Sweet dreams baby girl!

Practicing her yoga

Cora has been a real trooper this week.  We had so many appointments and therapies for her that I thought she would just like a morning of relaxing.  To my enjoyment she not only greets each day with a babbled hello and a jabbering rendition of what her dreams were about the night before, she is also starting the day with yoga and pilates.  So while changing her pajamas and getting her into her day clothes she decided it was exercise time and not only that.....but look at her now.....she can chew on a toe, while stretching and talking about her day to come.  Such an absolute blessing for the day. Enjoy!

Therapy and Doctor's

Seems like we are once again seeing alot of people and doing many appointments. While Cora takes it all in stride and with smiles, I get questioned about the same things over and over.  Sometimes it is tiring for me and yet when I look at the progress Cora is making I know that her purpose is worth the "brain strain".

This week has been an eventful one for Cora.  Monday she had physical and speech therapy.  By the time the hour was over Cora was ready for some milk and a nap.  She is learning to keep her legs together and in midline instead of swinging them out to the sides and then to the middle.  We were given homework and have been working on it for a few minutes (about 3 minutes) off and on throughout the day.  Cora is so cute becuase she thinks it is playtime and doesn't even realize that these exercises are going to help her crawl, sit, walk, etc. 

The speech teacher taught us a new sign.  Cora is now learning the sign for "toy" which is the same as "play" only we modified it for Cora.  The sign is given with one hand because Cora doesn't have the coordination yet to use two hands at the same time.  We were also given the homework of playing with two hands in the midline and tapping two toys together to make a sound.  This will get Cora using her hands at the same time instead of trying to play with her toys out to the side of her body.

Yesterday we visitied with the pediatric cardiologist and found that Cora is doing well in her continued recovery from the last heart surgery.  Alhtough she continues to loose weight she is in great spirits.  Katie held her for a little while and showed her off to the other nurses.  Cora was definately comfortable in Katie's arms, but was hesitant to spend time with the other nurses.  The first sign of Cora being uncomfortable is when she clasps her two hands tightly together and she was doing this a little bit yesterday.  Cora is getting great at letting me know when she is uncomfortable and when she is scared.  I love seeing the advanced communication from her instead of having to guess at what she is feeling.  Using the new sign for "Cora" also helps.  Yesterday she was definately using the "all done" sign and not shy about letting anyone know that she was done with the appointment.  She did lie quiet for Stacy during the echocardiogram and gave her severl smiles and this made Stacy feel special and loved. 

Today has me on the phone with the dietician and the finding the new cardiologist visit times.  So much to do in so little time.  But seeing Cora grow and discover makes the work not seem like a burden, rather a challenge to be met and achieved.

We leave you today with this cute picture of Cora trying to talk with herself.  She has just discovered mirrors and finally has the coordination to lean forward and reach for herself while she babbles her baby talk.  Do you think she is saying, "Oh girl, you are so cute!"?

Cora rests on Sunday

Cora is resting and eating.  Seems a great way to spend a Sunday.  She has a really busy week ahead for her so it is good to see this little wonder sleeping for a nap.  We both look at this day of blessings and prayer with faith that all will be well with her....do you think angels can add a few pounds to this blessed baby girl?  I surely hope so.  For isn't it said that faith can move mountains? 

Cora loses weight but finds her toes!!

Today finds me on the phone with the pediatric cardiologist and trying to find a way to help Cora gain weight.  She is currently drinking 8 bottles of 5 ounces a day at 27 calories per ounce.  This is a pretty high calorie content and yet, Cora has lost a total of 6 ounces from her weight since the beginning of January.  Along with the bottles she is eating baby cereal and fruits and veggies.  I am now going to be adding MCT oil to her formula to see if that helps Cora gain weight.

She has gone from being in the 50% line of the growth chart to the 10% line on the growth chart.  Despite all this worry from those around her , Cora continues to eat with gusto and explores this world she has become so enthralled with. 

In the midst of all this she has found her toes.  In changing her diaper it has become a real acrobatic escapade of trying to be a quick change artist in between the rolling and kicking that Cora does.  the funny part is, she knows that she is making it hard for the changer and smiles with glee when I try to look stern and tell her to lie still.  The little turkey gives me the sign for all done....and then when I reach for the new diaper she is off and rolling again.  Quicker than a cat that's had their tail stepped on, she flips over and starts babbling away.  The baby talk is probably telling me, "See mama, I am faster than you!"

So while I try everything needed to help her gain weight she babbles her baby talk and plays at grabbing her feet.  Who would have thought that feet have a language all their own?

9 month photo album

She gets her silly from her mama!

You taking my picture again?

 Kick one, two, three

I can hold myself up, yeah!

                                                         Okay, you can take my picture.  I am nine months old and proud of it.

Can u find Cora?

Cora had her weight check and she has again lost 5 ounces.  While her attitude and spunk are the same as always, she just cant seem to hold her weight.  The doc's are not too concerned so I am trying to remain calm and accepting of this new development.  For me, the first instinct is to panic because Cora has, in the past, lost weight before having struggles with her heart.  So for today, I watch Cora playing with her toys and stinking her tongue out in playful abandonment.  As if to say, "No worries, mama, its all good!"

Picture is worth...

Everything.  For today's blog I thought this picture truly defines "a picture is worth a thousand words".  I was gifted with this on facebook and wanted to share it with all of Cora's followers.  Sometimes the less amount said offers the most awareness.....

2012 awaits Cora

We made it.  Of should I say....Cora Jean has arrived!  It's 2012 and for the first day of this new year Cora was in good health.  She took all her medicines on time, played and practiced her kicking and rolling, and napped.  Life is good for this blossoming 9 month old baby girl.

While I don't wish to repeat any of the past year, it did give me many life lessons and I cherish those memories with Cora.  This new year gives Cora and I the opportunity to continue living in today and not worrying about tomorrow...because if you think about it....you always wake up and it is today.

From Cora Jean and myself - HAPPY NEW YEAR!  May it be filled with many blessings, a beating heart and lots of laughter.  We look forward to sharing this new year with you and hope that this blog continues to teach you about infants with Down syndrome and the special life lessons that we are given along the way.  I invite you to continue the journey with us during 2012.

 Cora rolling her way into 2012