CHASE!

Our favorite game...Parker LOVES to play "chase" with anyone whose up for the challenge. It can be pets or people, Parker isn't picky.. It started as crawling (round and round in circles all over the house) and has moved to push toys. The speed with which he goes is so fun to watch although radical on the hard woods, but we figure it helps with balance if nothing else. The pure joy and belly laughing that takes place during this time will cure any and all "ills." His therapist let us borrow one of her "walkers" she uses with him to practice at home. It is made so they don't have anything in front of them when walking, supposed to have arms resting on the siderails although you can see Parker uses it all different ways. I am sure I am violating one of the biggest ND "no-no's" here by using the walker some, but encouraging those feet to make steps has to count for something.

Mike and I just returned from a fantastic adult only trip to Grand Cayman. Snorkeling, swimming with stingrays, sun and fun. The last few months have had so many trips for us and we feel so blessed. This rest of this year may be long, we have gotten used to a few trips a month!

I signed Parker up for preschool last week, we are thinking 2 days a week at the church preschool starting in the fall might do everyone some good. I had to swallow my pride, they want to put him in a class with kids about 6months or so younger. My initial reaction to this is always "NO," but he is so small everyone worries about him getting hurt. So, for now, I will pray for peace about it and pray that over the summer he has some kind of amazing growth spurt. HA! For some reason this seems like admitting "failure" if that makes sense? Clearly he's behind (he's not walking for goodness sake and he's 20months!), but it just seems more "real" if that makes sense when school starts coming. I know we have years to fight this fight, but I was hoping it wouldn't start this soon. But, I know God has a plan and I have to trust in him!

XO

M-I-C-K-E-Y MOUSE!

seriously overdue update coming..life is on fast forward (what else is new?) most importantly we just returned from Disneyworld!! Parker was a magnet to any and all people and Disney characters. He enjoyed the trip so much and was so taken with the characters! We took 1200 pictures, we will spare you most of them, LOL. He's been to WDW 2x's in his less than 2 years of life. WOW!!!

Now, the medical updates..

Chicago Endo visit was good, got snow even although this last few days in TX have felt like Chicago! results are back..Parker's thyroid meds were too high, suppressed his thyroid, so we have cut the dosage and are retesting in 6 weeks. These kiddos are really delicate, we had no idea the dose was too high. Best advice, lesson learned here..ask around 50mcg is too high for a baby..when the PA took the history at the endo's office she was taken back by high the dose was. She assumed we were on 37.5mcg or 25mcg, said 50 seemed very high, didn't want to throw him into hyperthyroid..gee, she was right. Praise God we had that appointment, we shudder to think how long we would have gone if we didn't have that appt. At least we had only had too much meds for 8 weeks.

He is dx as FTT (failure to thrive), but the Dr. said he really looks great. Not emaciated and his skin "ripples" so the lack of weight gain in 6 months while annoying didn't concern the endo too much. He has grown in height and head circumference, so that was good. He's fallen to the 5-6% though on the growth curve and has fallen off in weight totally. So, what does this mean? Well, we had a bone scan done to determine his bone age too. His is 12m (and he's 20m) so it is an indicator of growth hormone deficiency. We did the IGF1 test as well and he's very low normal. We will give this another 5 months to follow growth and then go back. From there we may do the 4 hour growth test which is very difficult on the little ones. Ultimately we aren't worried about how tall he will be, but we do worry about internal organ growth and function if he is deficient.

Cardiologist visit - 6months post surgery - fantastic report! Repair is perfect, no leakage to speak of and we get a reprieve until next FEBRUARY!!! Can we get a HOORAY!! One less Dr. visit is always a bonus. She really was amazed at how well he was doing, wanted to know what we were doing differently. I told her she was just saying that and she said, "no, you don't see what I see." Reminds me how blessed we truly are with Parker!

Still working on walking, no more big steps, but we've been in a stroller at WDW so I'm going to say that was a bit of a hindrance for practice!

New words: eat, open, even a "hi grandpa" Parker is now saying MOOO for the cow, quack quack for the duck and will sing "row row" when we sing row row the boat.

All for now, homework to catch up on since we had snow day Friday and time to prepare for Mallory's big birthday tomorrow (she's 9)! We celebrated at WDW, we had cupcakes and singing at every meal, LOL

Blessings to all!

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