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!
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 firstname.lastname@example.org
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...
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!