Steps!

we have had a busy week and an update is needed, but first and foremost..Parker took forward steps without assistance Monday!!! He's been side-stepping and walking with our assistance for what seems like forever and Monday at his neurodevelopmental 3 month eval he took 3 forward steps from chair to chair!! For the last week or so, every person I see says "he's almost walking!" While I still am wrestling with the "FINALLY" and reminding myself that all the cross pattern creeping is necessary and SO IMPORTANT, I can officially say that that "what if he never walks" that always sticks somewhere in the recess of my brain is gone. Now I'm obsessed with will he walk PROPERLY. Geez!

He has become the tornado toddler we all know and love. He's into everything, drawers, closets, bathrooms (unrolls and eats toilet paper when one is not looking). He's learned to go DOWN the stairs feet first as well. He is climbing on and off his riding toys and riding his cars using his feet to move them along the floor. Still pushing walking toys, but really his favorite thing is to get into anything and everything. He's started coloring and prefers the walls to paper. I guess I fooled myself into thinking he would NOT be typical in this manner, LOL. Everything goes into the mouth still, He's cutting two more teeth on the bottom and 4 molars at once. No teeth until 14 months and now look MOM!

Medically he's doing terrific, had a wonderful ENT visit Tuesday, Dr. wanted to know what I was doing different. Totally unsolicited. His speech is rapidly developing, we have lots of new words, and he's starting to put two words together (couplets!) So glad I bypassed signing. We made that decision early on and I can say for our family it was the best decision. Parker is required to tell us what he wants and he does! A few posts back I mentioned his lack of weight gain in 4+ months. In November Parker was dx with hypothyroidism. Again, no outward symptoms, but we put him on meds. Mike and I fly to Chicago Sat to see the specialist. Unfortunately, even in Houston, the pediatric endocrinologist's aren't the best. And none have the experience that the specialist in Chicago has. We've had the appt for 5+ months and are anxious to talk to him "live." My sense is Parker has had a growth spurt in these last two months, we shall see if it is thyroid related or if we have other issues to contend with.

For now, we are celebrating life and health. We head to Disney end of the month for a much needed family vacation. God is so good and we have lots to celebrate!

CALL TO ACTION

two posts in one day? what is the world coming to, LOL! Seriously, this is BIG!! Forgive me if I have sent this to you directly already and if I have I THANK YOU for helping advance those we love with Down syndrome. If you haven't already helped support this important initiative, please take a moment to help make a difference in the lives of someone you love because if you are reading this blog, you DO know someone and LOVE someone with DS. Don't think your name doesn't matter, it does and if you feel led, write a quick comment about our family and our precious boy. Help give Parker the same freedoms you all enjoy!

PETITION REQUEST:
Today is the day I need you to step forward with a small act to support Down Syndrome research. No money, just your name and words are needed.
PETITION REQUEST:

We are on the verge of revolutionary human clinical FDA trials for medication to raise learning, memory and communication in Down Syndrome. These trials are expensive, more than charity can handle, and more than pharma companies will take on when they are unsure if a market exists. We can show them a market exists and influence the National Institute of Health to help bridge the funding gap NOW by having you join a petition and by presenting your commentary!

There is a major grant request under review at the NIH to initially fund a start up pharmaceutical's FDA trial of a medication developed by Stanford DS researchers that has improved learning performance in DS mice and shown to be usable in humans. We MUST get this funded.

In 2009, the NIH provided 18 million dollars for DS research. DS affects about 400,000 Americans. In contrast, autism (which affects 560,000) got 132 million in NIH money, MS (affecting 400,000) got 137 million, and Parkinsons got 162 million. Why? Because the families of people with these issues are very active in lobbying for this and being involved at the federal level, and we have not been. The view from the govt and pharma is that we don't care about developing the medications that are within reach that could really change our kids outcomes in life, so they focus elsewhere. Time for things to change!

So join me today in saying this to the NIH decision makers:

We, the members of the Down Syndrome community, strongly urge support for the development of FDA approved medication to raise learning, memory, and communication for those with DS. We particularly support this grant application: the NINDS Cooperative Program in Translational Research - Small Business Awards (SBIR [U44]), Principal Investigator Elizabeth Moyer, PhD.

Your steps:
1) email me to add your name and email address to the petition. just say "add" with your name and email address
2) if possible, take 5 minutes and email me a few sentences showing your support--include your name, address, and telephone #. This will be far more powerful than just the petition. I will consolidate comments and give to the head of the grant application process.
3) call or email me if you need more info

Time is critical in this process, so please act now! We want to deliver the petition by January 4th!!! And please forward to all your friends and family.

Merry Christmas and Happy New Year!

Thank your for taking the time to help. The squeaky wheel gets the grease. Help us get the grease!

Sincerely,
Teresa Cody
email me at changingmindsfoundation@gmail.com

You Need God's Power to Change

starting the year off right...from Rick Warren..seems to sum up all the things I feel, but he said them so much better than I!

"I've tried everything and nothing helps. I'm at the end of my rope. Is there no one who can do anything for me? Isn't that the real question? Romans 7:24 (MSG)

"The very fact that God sent a Savior means you need one."

Have you figured out yet that a lot of times you are your own worst enemy? It's your own reactions, your own fears, your own inadequacies that cause you to act in foolish ways. I know that's true for me.

I need to be saved from myself because there are things I don't like about me - things I wish I had done differently, things I'd like to change. But I can't change them, not on my own power. I need an outside power source.

You may be saying, "I can change." I hate to say this, but you can't. Every year about this time, we make a list of New Year's resolutions. But, by the end of January, that list will be in the dumpster. Why? Because you can't change on your own; you need God's power. You need a Savior, someone who can make the changes you can't make yourself.

Let me make an important point here: God never wastes energy. He doesn't waste effort on things that are unnecessary. In other words, if you didn't need a Savior, he wouldn't have sent one. The very fact that God sent a Savior means you need one.

The truth is, if you are honest about it, sometimes you feel like your life is out of control. That's a pretty common feeling. Welcome to the human race!

The apostle Paul felt that way 2,000 years ago. Paul says this in the Bible: "I've tried everything and nothing helps. I'm at the end of my rope. Is there no one who can do anything for me? The answer, thank God, is that Jesus Christ can and does" (Romans 7:24-25 MSG).That's the answer!

You may be looking for salvation in the wrong places, that's why you're frustrated. You're looking for that one thing that's going to give you fulfillment and meaning and peace in life.

Some of us think that if we could just get married, or if we could just get a certain job, or a promotion, or attain a certain level of wealth, or have a baby - or if our babies would grow up and graduate! - things would be great.

You're looking in the wrong places. The answer is not in a place. It's not in a program or a pill. The answer is a person: Jesus Christ. You were made by God and for God, and until you understand that, life is never going to make sense."

Yes, Parker WAS going to draw on the wall with that pen, you can see him pointing saying "here," but we were in time to save the wall. And for those of you that say you never see Parker cry..this one's for you...

Christmas!

the days of December are nearly gone...wow, we have had so much fun this month!!! The pictures prove it as does the lack of blogging, LOL! Uncle Matt is here from CA, Mike and I got away for a long weekend to San Antonio for his Christmas party which is always a wonderful way to ring in the season (after that FANTASTIC NYC trip too)! Then it was fast and furious as Christmas came (and went). Today we are "housebound" due to a monsoon of rain, all the new gifts are out and open everywhere. Life is good! Blessings to all, may the gift of Christmas shine brightly all through the year, not just on Christmas day! Be ready, PICTURE OVERLOAD!! there were 269 pictures from the last 2 weeks!

A New York State of Mind!

Hubby and I just returned from a 4 day trip to NYC (without the kids) and feel so blessed! This trip was a "tag along" for me for Mike's work, but really I think it was a gift from his company for the wives! We were pampered and treated to spectacular accomodations, meals, and gifts! The company and fellowship with the group was such a blessing. I always praise God for Mike's job and the owners of his company, their families, and more importantly their faith. God richly blesses the organization and I know it is a testament to their commitment to measure things by Christ's standards not the worlds. Grandma and Grandpa did an amazing job here at home and don't think for a moment it was an easy task!! Swim meet, Santa parties, schoolwork, and "normal" daily routine and activities in this house doesn't leave much time for rest! We feel especially blessed to be able to "get away," and don't take that for granted. We know many couples that have far less complicated schedules with no help/family close by. Mom and Dad, we know we don't say "thanks" enough, but we love you and we never mean to take advantage!

Coming back is so sweet! Parker was so excited to have us home! And, I now appreciate what Mike experiences coming home each week. Lots can change in a few days! Parker has changed in 5 days!!! He's standing alone very well, wants to walk assisted more frequently than before, and several new words and sounds. Good to get away for so many reasons.

One gains new perspective when one gets away sometimes too. The continued burden of dealing with insurance on a weekly basis, the books of research required to keep abreast of Parker's diagnosis, the home programs, the therapy and Drs appointments are a part of our lives, but we truly are so blessed. Parker is thriving and so are our other kids and we are so thankful. Reflecting over this year and all we've been through and Christ's continued provision is something to celebrate! So, we continue to focus on the blessings and remind ourselves to count our blessings one by one!

A few more pictures from our photo shoot from the Littlest Heros project. Kimberly, these are SOOO fantastic!!!!

XO

Lara

18 months

Hard to believe 18 months have past..so much has happened in these 18 months..so MUCH to be thankful for...some days the burdens are heavy, but by stopping and counting these blessings God always bring things back into perspective! So I will remember one day..at 18 months here are some "stats"

Parker is still 20 lbs (more on that another day), not sure about length since he wouldn't let the nurse measure him.

He is VERY adept at climbing, standing, cruising everywhere and on everything. He is frequently found "hanging" on things and we pray it is all "nailed down". He is "all boy" and constantly on the move. Everything goes in the mouth, he chases the cat and dog all over the house and while we have a stair gate, he usually can be found up about 7 stairs when you turn your back. Something about having older kids that forget to close the gate. LOL. he can even get DOWN a few stairs alone, WHEW!

He is starting to practice "letting go" while standing and pushing things while walking although we are working hard to have proper structure and not rush the walking (important with these kids so they don't have a funny gait walk or worse yet need surgery later in life to address bad structure). This is easier said than done for us, we wrestle with the knowledge that we don't want to fix a "bad walk" and the fact that most kids born after Parker are already walking (stop comparing I know). Patience is a virtue, right?

He can self feed anything with amazing accuracy and eats just about everything. loves all fruits, veggies, beans, you name it, he eats it. He is gluten and casein free and we don't find that to be very difficult to manage these days.

He continues to develop verbally, he is always in constant chatter mode and now more "words" are developing. He can identify his face, ears, belly, eyes when asked (he won't point to his own nose, but will point to yours). He can "tickle-tickle" which is the cutest thing ever...he wiggles his fingers and says "tickle-tickle" in the cutest voice while coming at you with those fingers! He knows what the dog says (ruff-ruff) and we are working on other sounds. He has mastered his "displeasure" sounds, not just shaking his head "no," but says "na,na, na.." and if you are really lucky you get a scream of displeasure which means "now!" I'm afraid he has learned that from his precious siblings...we have a house full of loud, busy kids!! He has figured out to be heard he needs to be louder than they are!

He loves his siblings with amazing passion. He chases after them in the house and doesn't want to miss one moment with them. They love chasing Parker on hands and knees and never tire of him. Mallory loves to do backbends around the house and Parker chases her on hands and knees until he reaches her face and kisses her upside-down nose. It results in giggles from them both. Makes my heart burst. So much love!

It has been 4 months since his heart surgery. He continues to thrive and we are so grateful for a successful outcome. God truly answered out prayers!

So, my precious boy, 18 months and we are truly blessed.

"Oh yes, you shaped me first inside, then out;
you formed me in my mother's womb.
I thank you, High God-you're breathtaking!
Body and soul, I am marvelously made!
I worship in adoration-
what a creation!
You know me inside and out,
you know every bone in my body;
you know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you,
the days of my life all prepared before I'd even lived one day."
Psalm 139:13-16-The Message

Littlest Heroes Project/Inspiration Thru Art

We have been blessed by so many during the course of this journey with Parker and recently had the most amazing opportunity! A friend told me (thanks Adrienne!) about this wonderful organization called Littlest Heroes Project, now know as Inspiration Thru Art. Photographers donate their time and take pictures of families and kids that have life threatening illnesses and/or surgeries.

Here is their mission statement,"...a non-profit organization dedicated to empowering young people to give back, and make a difference through the beauty of art. We are artists with a passion for giving and inspiring others. Through our own artistic talents we are able to come together as one, to let children around the world know that they are loved,despite the challenges they face everyday.
Inspiration Through Art was founded in January 2008 by Felicia Reinhard, made up of professional photographers, artists, children, and other volunteers nationwide that provide free programs and services to our nations heroes. Through the power of photography and the gift of art we are giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.
If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. Inspiration Through Art provides our special heroes with complimentary photo shoots, special cards and mail, gift packages, and various other programs, events, and fundraisers.
Our mission at Inspiration Through Art is to help provide and capture memories for families who are dealing with hectic schedules due to having a child who is suffering from a serious illness or life altering disability. We are here to offer emotional support through the beauty and expression art has to offer, as a way of healing and coping. We understand that in the midst of being thrown a diagnosis and having to switch from a “normal” life to a life that is totally different, and often scary, things like getting photos taken is sometimes a huge challenge and is one of the last things families are thinking about. But when everything is done, and either the child has reached the end of their battle, or has proven the odds against it many wish they had more time to stop, and capture the journey that they lived through for so long. Through Inspiration Through Art- our photographers and volunteers understand each and every case, and cater it to fit and honor each child and family. Our photographers are on hand to travel to homes, hospitals, clinics, fundraisers, and benefits to help capture your child’s journey in a “Day in the life” sort of style and work personally one on one with your child and entire family to get those special family photos and moments that you can cherish for years to come. Our special art volunteers are also on hand to travel to your child’s home or hospital for a fun and personal art session catered just for your hero! Our special Hoping Hearts package program is setup for children who are currently in treatment or in the recovery stage of their journey. Every month a package will arrive with a special goodie or toy donated and/or handmade just for your hero! All of our services are free of charge and are made possible by volunteers around the world!"

We were blessed to find Kimberly Benyak for our shoot. Her calm spirit with 4 rowdy kids were amazing and she captured some beautiful images. We are humbled by this gift of generosity. Truly the arms of Christ!! Be sure to visit Kimberly's page as well as the Inspiration Thru Art "Heroes" page...I promise it will make you count your blessings every one! Kimberly, thanks isn't enough...


http://www.inspirationthroughart.org/

http://kimberlybenyakphotography.blogspot.com/2010/11/sneak-peek-inspiration-through-art.html

1Peter 4:10 "Each of you should use whatever gift you have received to serve others, as faithful stewards of God’s grace in its various forms."