Thursday, March 29, 2012

Cora's first haircut

In all of my reading about Down syndrome, it is often mentioned that sometimes the children have a difficult time with haircuts and brushing teeth.  I figure, what you start in their infancy holds true through adulthood.  So, with that thinking, if I set the routine up now for Cora getting haircuts and keep rubbing her gums like I am brushing teeth, then it will remain a part of her everyday life routine.

With that in mind I talked with Johanna at the JC Penney hair salon (she is my absolute go to person for my hair) and we decided to start Cora now with the hair salon experience.  Today marks another milestone for Cora.  Cora got her first hair cut in a hair salon.  It was fun to watch Cora.  She sat beautifully and didn't fuss at all.....but her head swiveled around like an owl's when she was trying to keep track of Johanna and see the scissors and her eyes were big as saucers. 

She kept looking to see if I was OK with what was going on and everytime I signed "Good Job".  Then she would keep looking at GG (grandma was taking the pics for me) to see if she was worried, and my mom would tell her "Your such a big girl." She didn't fuss but she was ready to go when we were done...because when I signed "all done" she started bouncing on my lap to get going!  haha.

 It was all good today at the JC Penney hair salon...and the beautiful miss Cora shines on!!

 Are you sure it's OK , GG?

What's that?

What are you doing back there?



 Beautiful girl!  First hair cut..

Wednesday, March 28, 2012

Cora's 12 month milestones

She did it!  Twelve months and continuing to grow.  We had and appointment in town yesterday for Cora's WIC certification.  With that they take a blood drop from the finger, and look at her height and weight.  When the nurse put the information into the computer she got a concerned look on her face and said ,"Cora is not even on the growth chart.  She is well below the 10 percentile.".  I just smiled and said, "That's because your computer doesn't have the chart for infants with Down syndrome.".  Looking relieved she said, "OK. Then we will leave that worry up to Dr. Statler.".  I again agreed.  Then the nurse started talking about getting Cora off the bottle and onto a sippy cup.  I found myself explaining the pit falls of  Cora's lack of jaw and mouth muscle tone that allows her to be able to do this.  I also explained that for awhile Cora was on tube feeding and didn't even have a bottle and what a blessing it was that she was able to nurse from a bottle.  I ended the explanation with a polite decline to even start this weaning process with Cora. We have just started getting Cora to gain a steady weight and eating foods, why upset the apple cart?  Some things are just best left alone rather then messed with.

But on the drive home I got to thinking.  Why doesn't the Health Department have a chart for infants and children with Down syndrome readily available for the staff when it is needed?  Surely Cora isn't the only child with special needs that has passed through those doors or has been entered into their system.  Why doesn't the health department have a better understanding of what a child with Down syndrome deals with or needs...especially someone in the health care profession?

Our society is so programmed to look at the average and the normal that others are easily forgotten.  Such a sad knowing!

In any case, Cora was re-certified and will continue to receive her WIC items.  I am thankful for the help that it offers.

On to the milestones:

Things that Cora is doing as a twelve month old=
  • sitting with minimal support
  • getting onto knees for two seconds
  • passing toys from hand to hand in mildine play
  • rolling to whatever has caught her eye
  • talking and interacting
  • says, "mama" "baba" for bottle and shakes her head for "no" and "yes"
  • signs , "all done", "milk",
  • recognizes the sign for "toy", "book", "dog", "kitty", "good job", "Cora", "mama", "Emily", "medicine", "sleep", "Phoenix", "papa", "gg", "Kelsey"
  • tries to hold her bottle
  • starting to grab food and try to aim for her mouth
  • eats fork mashed foods (cannot hold food that is more liquid than solid within her mouth) in very small portions, from a spoon
  • started drinking whole milk (alternated this with formula bottles)
  • putting toys into a pan and taking them out of a pan
  •  rolling over top of obstacle that are meant to keep her in the play area and escaping out of said play area
  • takes a two hour nap and has developed a routine
  • sleep through the night with only one waking moment and puts herself back to sleep
  • has gained 12 ounces in the last month
  • plays peek-a-boo by holding a small washcloth and doing the movement herself
  • remembers where she has left a toy and will go looking for it (without realizing I have put it away during naptime) 

If I have forgotten anything I will add it on the next blog.  It is so amazing to watch Cora's interaction with her surroundings.  It is sometimes easy to forget that she has had two open heart surgeries and has the struggles that she does.  I love those moments, when I can disappear into her world of play and again fall in love with the daughter that the creator gave me.

Life is such a blessing....enjoy yours!  Cora and I are enjoying ours....

Saturday, March 24, 2012

Cora's Birthday Party

Cora turns one on Monday, March 26th.  Today was her birthday party.  Her first birthday party.  It was a moment that needed to be celebrated for there were many days that I worried and wondered if Cora would make it to this event.  Celebrating her first birthday is truly a blessing and, I believe, nothing short of a miracle. 

I am so thankful that I was able to share this day with those that came to her birthday party and celebrated with us.  Many of the participants have been there for Cora and I and her siblings in prayer and emotional support.  You all know how much of this past year has been focused on Cora's survival...today was focused on her success and happiness.

With that being said, I thank you for sharing this first year with Cora and I.  I thank you for the prayers, laughter, tears and worries that you have shared with us.  Today I share her joy and happiness with you.

HAPPY BIRTHDAY CORA JEAN!











Wednesday, March 21, 2012

Cora and education

Early on came this week.  It was for the education/speech part of Cora's therapies.  It was a very interesting conversation and one that left me with many thoughts.

We discussed again the idea of Cora starting school and where I was thinking of having her go?  I asked when they were thinking of Cora starting school and then found out that Early on works in the home with the child until they are three years old, at that time the child is transferred to a preschool type setting.  No worries though, the child is put in a car seat on the bus and there is a caretaker for each child while they ride the bus.  ARE YOU KIDDING ME?  That was the main thought that ran through my mind.  Then I opened my mouth and started to verbalize..... "That isn't going to happen.  No way and No how! "  The women looked at me with a surprised look.  I then put on my advocate hat for Cora and said, "Just because Cora is labeled as special needs, does not mean that I want her to attend the special needs classes in Rudyard.  Yes, its a good program and yes the children are taken care of, but I don't want Cora pigeon holed either.  I would like her to have the social interaction with other children, yet I don't think that a special needs school is where Cora needs to be at."   At this point Ann looked at me and smiled and said "I agree". 

To often our children with Down syndrome are looped immediately into the "special needs" category without any thought to their level of learning or capabilities.  Cora doesn't have brain damage, she doesn't have lack of body functions, she doesn't have problem interacting with others and can make direct eye contact.  She likes to be held and cuddled.  She doesn't have a problem with having her body hygiene or genreal life tasks attended too.  How does a parent grade the level of special need?

So much of the information that I find , am given and am told is about what Cora cannot do and what to not expect from this child.  Where is the encouraging information and the information on what she can do or could be able to do?

The result of my conversation with Early on?  I will be getting in touch with the director of the Wee Wisdom program here in Pickford and see what that program has to offer a three year old child and then talk about their willingness to accept Cora into their program for part of the day.  In the two years leading up to that time I will continue to work on signing with Cora, reading and teaching her the -Your Baby Can Read- program and loving her the best way possible. .... as a mama with a cute baby does.
Cora looking for things for her pony

Sunday, March 18, 2012

Cora's weekend

Friday had us at the Pickford Medical clinic for Cora's synergist vaccine.  The vaccine hadn't arrived so it was rescheduled to be given in the coming week.  It didn't hurt my feelings any to have to wait as Cora was still incredibly sore from the four shots she had gotten earlier in the week. 

But the scale showed more weight gain for Cora.  Leslie came into the exam room ecstatic with good cheer and admitted to wanting to do cartwheels in the hallway when she had read how much Cora was weighing these days.  Cora had a weight of 13 lbs. 12 ounces.  This is an average weight gain of an ounce a day! 

Cora was not as energetic as she was with Dr. Statler but she stilled smiled, and showed off a little for Leslie.  To see the difference in this child is absolutely amazing for us.  We have seen her blossoming in the past weeks since shifting her medicines and with the energy therapies.  It is all working for Cora and such a relief to have something going right for her.

Today is Sunday and Cora is still fighting the fever and the tummy upset that followed her flu and other vaccines.  It doesn't seem to slow her down any, just makes for a few more nap times during the day.  She accepts this low grade fever and tummy upset like she does everything else she has faced.  She just demands a few more snuggles and cuddles and then smiles at the rest of it. 

I am inspired by this child of mine.  Her perseverance and genuine aptitude for love and giving.  She continues to encourage me in this journey we travel together.  While I strive to raise her like I have raised her siblings, there is definitely many differences on Cora's journey.  The cost of raising Cora is triple what it was compared to her siblings and the allowances that she needs is twice what her siblings needed.  While most times I don't even see the "special needs" in Cora, it is always a lingering fact in other areas of our life together.

I am coming up on a year of Cora sharing her life with me and her siblings.  I can still smell the exam room, even describe every last detail of that room if you ask, and I remember those words of Dr. Wilder when he confirmed that Cora would be born with Down syndrome.  In looking back I remember how determined I was that Cora deserved life, despite the fact that I was scared beyond words.

As I write this I look at Cora in her playpen and listen to the baby jabber and watch the intense look on her face as she plays with the toy in her hand.  A whole year is coming up quick and we will be celebrating it with a birthday party.  Such a wonderful gift, this growing baby girl.  I think I even see the tiny beginnings of a double chin, that in itself is cause for celebration.

 a little nap time
 a little playtime


Thursday, March 15, 2012

Down syndrome video

World Down syndrome day is fast approaching.  With that in mind, please copy and past this link and share in the video montage.  Thank you so very much for continuing this journey with Cora. 

http://www.idscforlife.org/


The video can be found if you scroll down the page a little bit on the home site for International Down syndrome site.  Thanks again and many blessings!

Cora gains momentum

Traveled to Charlevoix, Mi. yesterday morning with Cora.  It was time to visit Dr. Statler again and see how the little button is doing.  Cora arrived with smiles for everyone and was so full of energy.  She was ripping the paper on the exam table, flipping back and forth, turning this way and that, rotating with leg and tummy pushes and even got up on her knees one time to show off.

Cora is always so full of happiness when she sees Dr. Statler and today was no different.  What Cora and I didn't know was that the day would end with Cora getting 4 vaccines to try and get her caught up on her immunizations. 

Before arriving Dr. Statler has talked with Dr. Webb and they both agreed that there was another adjustment needed to Cora's medication.  With that knowledge in hand the exam started.  Cora passed her well baby check with "well baby" status.  First time ever I think!

Are you ready for the weight news?  Cora weighs 13 lbs. and 10 ounces!!  Yep, you read it right...that is the heaviest Cora has been since her birth.  She is not only maintaining the weight gains, she is increasing in weight.  "Praise Creator" were the words of choice because I was filled with so much blessing and gratitude at that moment that it was all I could think to say.

I didn't hold Cora for her shots as I have become the safety net for anything "ouchy".  She cried and wiggled, but once the nurse stepped away and she was back in my arms she settled right down.  Then she deliberately looked at the nurses and babbled a few words, said "mama" and buried her head in my shoulder.  Wendy and Sue (the nurses) both agreed that they had just been told off in Cora language.  I have to admit, I thought so too.  (haha).

I am a firm believer in all things for a reason.  I believe that the energy work, the biofeedback work, the medicine adjustments, the doctor visits and everyone working for Cora's survival is being rewarded tenfold. 

So this day brings Cora with a mild fever from the shots and some very "touchy" thighs....but it finds her totally engrossed in her toys and thriving in the love that surrounds her.  Not only the love from me and her siblings, or the love from exteneded family, but also the love from you!

Tuesday, March 13, 2012

Cora's Feedback Therapy

Today was Cora's appointment for her energy work.  This work helps her to release any negative experience her body might be holding onto....it also gives the girl an amazing massage.  When Diane arrived to work with Cora I was introduced to the idea of allowing Diane's son, Darrel, to work with Cora's energy through a biofeedback program.  He was visitng from Colorado and is trained in this area and brought his machine with him to help Cora.

I have known Darrel since we were kids and I also know, without a doubt, that he would never do anything that would cause Cora harm.  Once the process was explained and tried on me, I agreed to allow him to do the energy work on Cora.

If any of you have doubts that this kind of work doesn't work let me just say this, Cora did not start gaining weight until after her first energy work session with Diane.

Cora was very cooperative in holding the two brass cylinders in her hands and was fascinated with the whole process.  Here is a short hand version of what the computer read from the biofeedback of Cora's energy.  Keep in mind that the only information the biofeedback program had was Cora's name and birthdate....no medical history was inputed for her file.

She was low in healing energy (out of frequency) in these areas:
lungs, lymphatic system, gallbladder, central nervous system and parathyroid.

All of these have been affected by her health problems since her birth.  She has retained water in her lungs and body.  Her gallbladder is directly related to the liver (which was enlarged until recently) and her thyroid helps regulate metabolism ( too much and there is lack of weight gain).

The program also pointed out that Cora is allergic to tuna, cheese and wheat.  Not to the point of having a severe reaction but her body is sensitive to these foods and it might aggravate how she processes her digestion.

If I doubted what the biofeedback would do for Cora, I no longer have those doubts.  After the session Cora took a quick ten minute nap and since than has been playful and "full of it". She has been displaying the most energy we have seen from her in about two weeks.

Hoopla?  Impossible?  I don't know.  I am not here to argue the good and bad of biofeedback energy therapy.  I just go by what I see.  Cora is an open book for this kind of therapy.  She does not have the prejudging idea of whether or not it will work for her.  She sits and embraces it with trust as she knows I would not hurt her.  She knows that Diane won't hurt her.  And with that trust comes a kind of healing that her body seems to be thriving with...and for me, that's the right kind of feedback this mama wants to hear and see!



**Quantum Biofeedback Therapy and How it Works

Quantum Biofeedback stimulates the body’s immune and energy systems in order to promote energy flow, while releasing stress previously caused by imbalanced frequencies.

How does it work?
Quantum Biofeedback is an advanced therapeutic technology based on Quantum physics. It scans for and detects over 10,000 common health factors - from everyday allergies to chronic illness.

The system then delivers therapies from this advanced device, back to your body to correct these imbalances and suggest lifestyle changes to maintain your new state of health. It can be used with just about any health condition.**

Saturday, March 10, 2012

Cora's weight check

Cora's appointment for her weekly weight check left me again with mixed emotions.  I was so pleased to learn that she isn't losing weight.  But she hasn't gained any weight either.  She still remains at the 13 pounds 4 ounces that she was at last week.

I could be that woman that concentrates at the " not having gained any weight " part.  Yet, like I have written before, I choose to concentrate on the fact that Cora hasn't lost any weight.  This is pretty good I feel because she has had that medicine change in the last week.

She continues to play and laugh.  She continues to interact with joy and fussiness.  She continues to grab for everything in sight and transfer that item from hand to hand.  Cora has even started to try and put things into her mouth once she grabs on to an item. She continues to have a growing appetite.  Cora is starting to sit unassisted in her boppy pillow for two minute intervals before she loses her balance.  All huge successes and growth.

Looking at the past week in this way - I continue to see Cora growing and gaining in so many categories...even if one those isn't in the "pounds" department this week.

Wednesday, March 7, 2012

Cora's therapy session

Today Cora was visited by Early on program for her physical therapy, occupational therapy and speech therapy.  These women are working wonders for Cora Jean and her development.

This past two weeks have been busy with appointments so we were unable to get in Cora's exercises everyday.  Despite this, Cora still worked hard.

A new game was introduced to Cora during the session and it was to develop Cora's cognitive skills.  It was used to assess her abilities.  Cora blew them away!!  (Yep, mama bragging here) A toy was placed underneath a burping cloth and Cora was asked to find the toy.  She was shown the toy, it was put under the cloth and then the women waited.  Without hesitation Cora reached out, pulled off the cloth and found the toy!  First try.  Must have been a fluke, right?   They did it again and without fail Cora again moved the cloth and found the toy.

They next worked on Cora getting her knees underneath herself to move forward.  Cora still has poor muscle tone in her hip area and this tends to make her legs flop to the side instead of underneath herself.  Although she has gotten better at balancing on one arm and reaching for a toy with the other hand, she still struggles to get the hips and legs where they need to be.

Before the therapies ended Cora was introduced to the signs "book", "open/turn", and "E" for Emily.

Cora  has been lacking a little in energy the last two days.  She seems to be again sleeping and napping more than she is playing, but she had lots of energy for the therapy today.  She worked hard and napped after.


While Cora continues to excel and grow in some areas, she still struggles in other areas.  This doesn't  concern me though, because even the typical child will excel in some areas and struggle in others at this tender age.   What a joy that knowledge is...to know that , for today, she is "typical".

Tuesday, March 6, 2012

Cora's secret video

For those interested in viewing the video of Cora please email me a private request and I will give you the link to view the video.  It is finally working.  Yeah!!  Thanks for hanging in there with us while Cora and I figured out how to share it with ya'll.

headsupconsult@yahoo.com

Monday, March 5, 2012

Cora using sign language

I shot this video of Cora while she was playing on her blanket.   It just so happens that she had played long enough that she had worked up a thirst.  If you watch the video you will see Cora sign "milk" against her chest (it is usually where she does the sign or with her hand against something) and then she lets me know she is "all done" playing to get her point across. 

I hope you are able to view this video, and if so, please enjoy the moment of realness with Cora.

Friday, March 2, 2012

Grandmother's Love

Cora is fortunate to live close to her grandparents.  My folks share the farm that we live on so they have their house about 300 yards from our house.  You would think that means we are at each other's houses quite often.  The truth is that we rarely see each other.

 My parent's lives are full and busy.  They both work, they are both pastors of a church and they have several meetings on the week nights at their church building.  The kids and I have school, appointments and everyday doings that fill our life.  In reality , Cora sees her grandparents about once a week....if schedules mesh well.  So when I get asked, "How in the heck can you live so close to your parents and not get aggravated with them?"  I politely explain the above scenario.

I believe that in today's world my kids are fortunate.  They can run across the front field and visit with their grandparents if they see my folks car in the driveway.  Most kids cannot do this.  We live in a time when our traditions and cultures are the last thought in most minds and where instant gratification is the forefront of any service.  My kids are learning to not take for granted the love and acceptance my parents share with them.  They are so lucky to be able to learn from the wisdom of an elder family member, to sit and listen to stories of their grandparent's childhood and their grandparent's parent's childhoods. 

In a time of my life when I see and hear of so many of my class mates losing their parent's, I am so very grateful that Cora is sharing this time with my parents.  On a cold winter day at naptime I can think of no greater place for Cora  than in her "GG Kramer's" arms.  It is here that she is given a lifetime of stories, is surrounded with total acceptance, complete love.....and shared snores.