Sunday, April 27, 2014

Running for Research Down Syndrome

I have created a fundraising page for the Lincoln Half Marathon I will be running on May 4th.

Research Down Syndrome has a great program called RDS Runners whose miles help raise funds for Down syndrome research.

I love their slogan, "Let's Race for the Extraordinary!"

(Pics from the June 2013 Buddy Run)

Research Down Syndrome

I recently had the pleasure of listening to Dr. Patricia White from Research Down Syndrome present to our local Down syndrome group.  I was seriously blown away!  So much information!  Thank goodness my mom was still up at 10PM, on my drive home, because I was so excited to share everything I had just learned!

Let me try to sum up some of the main things I learned-

1.  The reason people with Down syndrome are at a greater risk for childhood Leukemia and early onset Alzheimer's disease?  The precursor gene for these are found on the 21st chromosome.  People with Down syndrome have 3 copies of their 21st chromosome, therefore increasing their likelihood.

2.  People with Down syndrome have LESS (possibly zero) risk of developing breast cancer and colon cancer.  Why?  This has yet to be discovered but is something that researchers are very interested in, specifically those researching for cures for breast cancer and colon cancer.

3.  In a trial including people with Down syndrome and mice engineered to mirror people with Down syndrome, every single test subject had sleep apnea.  Although not all subjects showed the obvious signs, when their brain patterns where studied during the trial they ALL had sleep apnea.  The correlation between untreated sleep apnea and cognitive ability is yet to be determined but we all know how important sleep is to the way our bodies and brains function.

4.  Dr. White explained one of the main "malfunctions" in the way cognitive learning is affected in people with Down syndrome.  Think of our brain as a long hallway with a series of doors that must open and close with precise accuracy in order for a message to get through.  This accuracy of opening and closing doors malfunctions in people with Down syndrome.  The doors do open and they do close but not in the timely manner they should, so not all information is processed by the brain.

5.  Research Down syndrome has created a drug that regulates the way these doors open and close and puts them on the "correct" timing pattern.

6.  This drug was first tested on mice who genetically resemble those with Down syndrome.  The results remarkable.  The mice who were unable to get through mazes prior to taking the medication, were then able to navigate their way through.  Several of the mice had unsuccessfully nested with the materials provided prior to taking the medication and successfully nested after taking the medication.  CRA-ZEE!

7.  The drug is now being tested on individuals with Down syndrome in several drug trials around the world.

8.  There are 3 phases of a drug trial before it reaches FDA approval and this drug is currently in phase 2.

9.  The FDA can take YEARS and YEARS to approve a new drug but Dr. White is hopeful that this drug *might* have a speedier process because it is the first drug to improve cognition in people with Down syndrome.  First drugs often get approved more quickly because of "imminent need".

I was SOOO blown away by all this information.  It makes me so hopeful for what is in store for Clay's future!  If there is a way to make his learning easier, improve his self help skills, and broaden the possibilities for his future in the work force and living independently - that is a no brainer to me!  ...and obviously, one day Clay will be able to make this decision for himself.

DC West Soccer

Wyatt is playing soccer this spring through DC West, our local school district.  So far, he is loving it!  The games are played right near the school, which is about 5 minutes from our house.  Awesome!  Nothing is 5 minutes from our house.

Several kids from Wyatt's preschool class are playing this year so Wyatt has been a lot less shy and more aggressive than he has been in past years when playing through the YMCA.  

Go Wyatt!

Aunt Molly and Uncle Pat were in town to cheer Wyatt on for his first game!

Saturday, April 26, 2014

Clay's First Haircut!

Thanks to the iPad, Hazel's help, and M&M's - Clay survived his first haircut!

I should have taken before pics.  
There use to be a ringlets, that *slightly* resembled a mullet back there! 

Working on the Walking Thing!

About a month ago, while we were playing outside, Clay stood up on his own for the first time.  This is HUGE people!  Clay has been pulling up on furniture (or pretty much anything he can find) to stand and cruising along things since last summer but has never stood on his own.  I cried.  Seriously.  He works so hard and to see him be so proud is something I could never explain in words.

So fast forward to now (a month later), Clay is standing on his own AND taking steps!!!!  Look out world, Clay is on the move!

Sunday, April 20, 2014

Happy Easter!

We kicked off our Easter celebrations with a Easter egg hunt with our Down syndrome group.  
Aunt Molly and Pat were in town and got to join in the fun!

Um, how cute are these!?  Wyatt and I made these to bring to a friend's house for an egg decorating party.  
Not gonna lie; I am pretty proud of them!

Easter Morning Egg Hunt at our house

Celebrating Easter at Grandma & Papa Turpen's house