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). 

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!