Parker's Purpose

Race for the Extraordinary!

2012-01-15T16:54:00.000-08:00

What a fantastic day today! Weather could not have been more perfect and I finished in 1:44:49. Not too bad for 13.1 miles at 41! I was pacing really well for the first 15K, lost a bit of ground in end, but so pleased! Best of all we raised $4,000 for Parker's Heroes, benefitting Research Down Syndrome! Looking forward to another, maybe WDW!!! Visit our page to see our efforts! Words can;t express how grateful we are to all of you!!!

http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont

Have You seen this?

2012-01-07T05:27:00.000-08:00

Talk about this has been going around the past few days...started on a DS bloggers site (when I first saw the post) http://noahsdad.com/target-down-syndrome/ talk about the fact that this precious child wasn't part of a modeling campaign for "differently abled" children (like the ToysRUs catalog), but simply just another smiling child in a weekly circular. This warms my heart, most of you knwo our kids have been print models most of their lives. I remember the kids asking when Parker was first born when he'd be mdeling with them...always pained my heart in some ways. Hadn't thought about it in a long time until this started going viral on the web...Things like this show me that is a real possibility!

http://thelook.today.msnbc.msn.com/_news/2012/01/06/10006260-targets-newest-model-is-an-adorable-6-year-old-with-down-syndrome

Go Target and Nordstroms! We are ready when you come a-calling! We are a willing model and can pose with the best of them!

Happy New Year 2012!

2012-01-04T05:58:00.000-08:00

The holidays have come and gone, the new year has started! So many terrific things happening, looking forward to what God has in store for 2012. Parker is keeping us all busy, he is loving school, has found a new "old" favorite in Blues Clues. His vocabulary now includes, "notebook, think, blues, table", all courtesy of the videos! This was Taylor's favorite 10 or so years ago, finding these videos have been a trick, but thankfully DirectTV still has them playing daily. Parker's grown 3.5 inches in 3 months thanks to our new endocrin and treatment, now is back on the "typical" chart at 30%. After almost a year of little to no growth we are so pleased. His problem solving skills are fantastic, speech continues to come along (although not as fast as Mom would like). His vocabulary is now about 45-50 words, we know he understands everything, just working on getting those words to verbalize. His new favorite word is STOP, when the kids get too close he pushes away and yells STOP as loud as he can. In this house one has to fend for oneself! He's learned to snap his fingers which is hysterical! Health has been fantastic, we have our annual cardio visit in a few weeks and our hoping to move to bi-annual visits them. Only one additional snuffy head for Parker (two in his lifetime) and no ear problems or setbacks from that cold. We had a Christmas trip to WDW and he was a fast favorite of all the cast members. He loved Santa, the characters, and the parades. It truly was a magical trip (always is)! Uncle Matt was here for Christmas which is such a blessing, wish he was closer to TX! Maybe we will make a CA Disney visit this year. Lots more to say, but that is the quick update. Getting ready to run the half marathon on January 15th to benefit Research Down syndrome, we met our fundraising goal, but certainly appreciate any additional donations - it is not too late!

Merry Christmas!

2011-12-09T04:57:00.000-08:00

Parker's Heroes

2011-11-13T13:50:00.000-08:00

http://www.crowdrise.com/ParkersHeros/fundraiser/LaraFont/1/return/success/success
HERE'S THE STORY:

On January 15, 2012, I will be running the Houston Half Marathon. I'm running for Research Down Syndrome(RDS) a non-profit that supports cognitive research for people with Down syndrome. In the last 5 years we have had great advances in biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome. The potential of these treatments to address Down syndrome cognitive dysfunction is tremendous - improving memory, learning and communication – and expanding and enhancing life opportunities for these individuals. Obviously this is VERY important to our family, please support my efforts! No amount is too small! Do it for our precious son, Parker, he deserves to have the same things we all have in life!!

I'm humbled by those that have already supported our efforts, thank you simply isn't enough!!

DONATE

$800

RAISED OF $2,500 GOAL

32%

DONATIONS

Action Shots

2011-10-28T06:02:00.000-07:00

2 days of a few action shots..Parker has been doing forward rolls for months now, it is hysterical to watch him with the girls as they tumble around the house! He is such an imitator, tries to keep up with the other kids no matter how crazy. Yes, his neck is fine, he knows how to "tuck and roll." The other picture is a football pose, he's saying "hike" Guess having football and baseball on in the background has left its mark!!

Wordless Wednesday..sort of..

2011-10-26T05:07:00.000-07:00

Meet Parker, our "jack in the box.." I'm proud to say Parker has the same affinity for my shoes that Taylor did at this age...he continues to be in to absolutely everything. This week we have slammed our fingers into the shower door and the kitchen drawers, hoping to hang on to his fingernails, even with child proofed drawers they still slam pretty well! Life is good, we are blessed...celebrated Madeline's 8th birthday this weekend..time flies, seems like yesterday when she was born....bet you can't guess the theme..Minnie Mouse gymnastics party...I of course am getting younger by the day..HA!

Support DS treatment and be entered to win a trip to Costa Rica!!

2011-10-14T14:53:00.000-07:00

It is that time of year!! Not only is it Down syndrome awareness month, but time for our annual Changing Minds Fountation golf tourney! Changing Minds Foundation is a non-profit organization which offers treatment for many of the symptoms and problems of Down syndrome. We are having a golf fundraiser on October 28th in Houston, TX. I know many of you are thinking:

I don't golf........
I don't live in Houston, TX.........
How can I help?

Well, you can participate in a Golf Ball Drop and a chance to win an all expense paid trip for 2 to the Four Seasons Resort in Costa Rico at Papagayo. Purchase as many golf balls as you’d like for $25 each. We’ll assign a number to each golf ball purchased and on the day of the golf tournament all balls will be dropped from a helicopter hovering over the driving range. The first ball to land in the designated hole (or closest to the pin) wins the trip. The Ball Drop is limited to 2,000 balls and the last day to purchase golf balls is October 27th, 2011. We’re a 501c 3 charitable organization so your donation is tax deductible.

To purchase golf balls and see a video of an actual Ball Drop go to:

http://www.changingmindsfoundation.org/golf_tournament.html

Donations will go to education and continued research and treatment of individuals with Down Syndrome. We’re in the home stretch and truly need your support. We have 2000 balls to sell and have only sold 150, so please consider making a donation to this worthy cause.
Who knows.....you might win the trip !!!!
Trip includes: 4 nights at the Four Seasons Resort, Costa Rica at Papagayo, airfare and transfers for two people, 2 rounds of golf at their Arnold Palmer golf course - it is an Audubon Sanctuary filled with monkeys, parrots and native trees of Costa Rica, as well as $500 spending cash.

DO IT FOR PARKER! How can you resist his cuteness? :) Don't you know chairs and couches are for jumping???

Jon's worms...

2011-10-08T05:23:00.000-07:00

I had the chance to meet Jon this summer and learn first hand about his research...amazing stuff! He will be speaking again this month in Austin as well.

http://www.dsrtf.org/document.doc?id=49

31 for 21 - Day 1..and no, I won't make 31 posts...

2011-10-03T20:36:00.000-07:00

I'll never make 31 for 21 as evidenced by my lack of posting these days, but...I feel it IS important to be a part of "31 for 21!" DS awareness month is October and our hope is that we can continue to encourage each other in our journey and meet new friends along this path of life! A life full of richness and blessing! Yes, it can be difficult, yes, it can seem unfair at times, but what 2 years has brought to our family has made us stronger and God's grace has been so evident! Parker is a "typical" 2 year old, he's "in" to everything, never slows for a minute and is gaining new skills daily. His vocabulary is up to about 40-45 understandable words (and a constant conversation all day long we don't always understand, but we shake our head and talk back smiling all the while). This week his new words are "grandpa" "keys,"and "baseball" very important at our house! We are working on reading sight words and contemplating math next. My Mom bought the dreaded "potty seat" although I must admit we haven't started that process just yet. I've potty trained 3 kids already, not in a huge rush to start with #4..I'm secretly hoping that preschool will get him started, LOL. Parker has mastered the SRJ "horns and flutes" to everyone's dismay and can frequently be found directing the animals like the "pied piper" 25 blows sounded like a huge accomplishment when we first started, let's just say now the whistles just get louder...we are perfectly content with 5-10 blows...the party horns and harmonica type whistle are so shrill, not sure if those are meant to torture families? Hard to capture him being still these days (unless he's sleeping), he's running everywhere, new favorite is walking on the curb like a balance beam outside..he thinks "chase" is the best game ever...anytime you are looking for a running buddy come on over!

Lots of exciting research on the horizon, hoping this year during DS awareness month we can make a push to join together and fund some of these research dollars needed to help our kids. They deserve to have the same freedoms and independence we all enjoy! Dancing and playing flute, oh so FUN!!!

Be blessed!

Goodbye Summer, Hello Fall!

2011-09-05T14:34:00.000-07:00

Fall started with a cold front...ha-ha, we left the record heat of 106 to have low-mid 90's this long weekend, but honestly it DOES feel cooler!!! Not ready to break out the fall clothes anytime soon, but today is a good day to reflect on the summer! It has been a busy one, long gone are the "lazy, hazy, days of summer," I find myself a bit reflective wondering how maybe next summer we can capture those? It was a summer of baseball, theater (Madeline was in Wizard of Oz and summer plays, Annie and Willy Wonka), gymnastics, sleep away from home church camp (Mallory for the first time), and Parker made so many gains. He turned 2 end of May, has now been walking for 7 months (he runs everywhere) and speech continues to come along(not nearly fast enough for me, but I'm working on that). He never slows unless he is sleeping and we are all thankful he still takes a nap at this point! Last week at therapy he shocked the OT, my mom was packing up, he grabbed the bag, and said "eat banana." The proceeded to get the banana out and eat it. We take this speech for granted, she was so thrilled. Not only was it a couplet, it was used at the proper time and in proper form, go figure this is a big deal? The other thing he continues to do is know how to follow instruction, we tell him to "throw it in the trash," he goes to throw it away. Unfortunately he likes to "throw it in trash," so better watch what is laying around (if it doesn't go there it goes in toilet to be flushed). He loves to blow bubbles and blow on his flute (SJR would be proud!) He will go to the back door, say "bubbles" and out we go. He can use the stick to dip and blow no help needed. he has watched the girls hula hoop and loves to practice hooping himself. He continues to have excellent fine motor and feeding skills. Can use a fork and spoon to self feed (although messy) no issues and is coloring well by himself. He can strap and unstrap himself in his carseat and highchair (not always the best skill for a 2 yr old in a moving vehicle). His new fascination is the door handle and the power window, good thing we have child locks! He started preschool last week at our church preschool where all our other kids go (see my earlier post) and the other kids are almost a month into the new school year. Having a 7th, 4th, and 2nd grader keeps my evening hours busy, homework takes a schedule as do keeping up with activities. Not much time left to update the blog I'm afraid. I do know this without certainty, our life has purpose, we have confidence in what we are doing to help Parker(and all the kids) succeed and it is working! Medically speaking he is doing really well, no issues to speak of, his growth hormone results came back (he failed miserably, but we already knew that) growth hormone treatment started 11 days ago and he's already grown 1 inch! He's physically strong, continues to be so healthy, no issues with sleep apnea or stomach problems (no ear infections, colds, etc..) and we are so grateful for God's goodness. All his Drs are always amazed at his progress. This is no easy task with his supplement, therapy schedule and neurodevelopmental plan for at home (aside from the countless Dr appts and other activities), but amazingly it seems routine. I remember when we first started and it all seemed so overwhelming, not so anymore. Guess one adjusts and when one sees results it becomes second nature. Parker had his first haircut, amazingly as sparse as his hair is it has finally grown and needed a trim especially around the sides and back of neck. Sorry i missed the pictures of that, 4th child I'm afraid...He will start Little gym this week (one more place to run him ragged to try to tire him out, LOL) and who knows what else we will find to take part in. Life is full, God is good, and we feel blessed beyond measure! Some favorite pics from our summer that flew by! XO

World Experts Meet in Cambridge to Discuss Treatments for Down Syndrome

2011-09-04T05:18:00.000-07:00

For those of you that aren't aware, another fantastic opportunity to gather and hear the leaders in the field, I can't make it to Cambridge, but I am so excited for this opportunity. We expect great things from this symposium, if you are interested and need details email me and I can put you in contact with the host.

World Experts Meet in Cambridge to Discuss Treatments for Down Syndrome
The treatability of Down Syndrome is gaining evidence and support, but remains the "holy grail" for parents and doctors. A rare gathering of expert scientists will plan the next stage in human treatments for Down syndrome. The wider context of the impact on people with Alzheimer's with be discussed.
London, United Kingdom, September 01, 2011 --(PR.com)-- Rarely are such people all in the same room together, but September 17th sees the meeting of truly great minds in Cambridge at the Welcome Genome Campus. The subject they'll be discussing? Down syndrome treatments.
There are at least 30,000 children and adults with Down Syndrome (DS) in the UK and about 700 new babies every year. For years it has been thought that nothing can been done to help this group of people who face difficulties with learning and memory as well as increased risk of physical problems like congenital heart disease as a result of inheriting an extra copy of chromosome 21.
What has felt impossible by most has become a reality for scientists at the cutting edge of understanding genes and their interplay on the developing brain. "Let's define the genes that are responsible...and let's treat those genes," Dr William Mobley, Professor and Chair of the Department of Neurology at Stanford University, has recently said. He adds that hopefully "...there are two or three different targets that are very treatable."
The wider hope is that it will help everyone who develops Alzheimer's Disease, as all people with DS show brain changes of Alzheimer's.
The conference will be opened by Madam Jerome Lejeune, wife of the late Prof. Jerome Lejeune who dedicated his life to the discovery of a cure for Down Syndrome. His work continues at the Foundation Jerome Lejeune in Paris, with the support Dr. Mobley will be chairing the day and the aim of the gathering will be creation of international research alliances to speed this life changing work.
The conference has been organised by a UK charity, the Downs Syndrome Research Foundation UK, founded to get DS up the agenda for the researchers and the Government. Dr Elliott, the chair of the DSRF, concludes "We are at a crucial moment in the field and possibilities for the future are hopeful. Join us and see why."

Parker's First day of School!

2011-09-02T06:12:00.000-07:00

Yesterday was Parker's first day at school. He's going to our church preschool where all 3 of our other kids went. He's starting earlier than they did, but we decided 2 days a week would be good for him and Grandma needs a few hours to herself! Parker is running everywhere (as evidenced by blurry pics), loving and living life to its fullest. No tears were shed yesterday as he went to class, for some reason I was slightly apprehensive about this decision, but God always delivers even in the smallest of ways! We made a big decision to keep Parker with typical peers rather than send him to a segregated school for kids w/DS. I have had peace since we made our decision, but had a few moments of creeping doubt until school started today. His teacher has a 21 year old brother with DS, no, we had NO idea!! She made the point to mention that Parker would not be treated any differently than the "typical" kids, what a relief! The Spanish teacher at preschool also has a son with DS, funny, in the years we've spent at the school that never came up. God truly orchestrates things long before our knowledge. We are overdue for an update on things, but I'm running late today, so pictures will have to suffice. Full disclosure here, these pictures are from the end of school day, as you can see Parker is a typical boy, a "dirt magnet," but such a cute one if I say so myself! Love to all!

DSRTF Piece - 30 Minutes if you love someone with Down syndrome

2011-08-20T14:06:00.000-07:00

DSRTF piece

If you love someone with Down syndrome, at any age, you need to watch this 30 minute interview with Dr. Bill Mobley to find out what's on the horizon with Down syndrome research. Your loved one's life could change significantly in the next few years. Remember to STOP the media player below so the music doesn't interfere...

TAKE ACTION! CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGE

2011-08-07T07:59:00.000-07:00

CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGE

Take Action!

Today, Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Chris Van Hollen (D-MD) and Pete Sessions (R-TX),introduced the Trisomy 21 Act of 2011 or “21 Acts” package (HR 2695 and HR 2696). The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

The 21 Research Resource Act will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The 21 Research Centers Act will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.

FOR MORE INFORMATION
http://www.ndss.org/index.php?option=com_content&view=article&id=262&Itemid=143&limitstart=4

ACTION NEEDED

Please take a few minutes to call or email your Representative today to ask them to cosponsor 21 Act package! You can reach your Representative by calling the Capitol Switchboard at 202-224-3121. We have included both a script (below) and email/letter template to help you reach out to these offices. Please do not hesitate to contact me or Sara Weir (sweir@ndss.org) with any questions.

Regards,

Madeleine Will, Director of the Policy Center

21 Act Package - Script/Talking Points to Call Your Representative

ADVOCATE:

Hi, my name is __________. I’m a constituent from ____ (home town) ____. May I please speak to the Congressman/Congresswoman’s Legislative Assistant who handles healthcare and/or disability issues?

CONGRESSIONAL OFFICE:

Let me see if XXXX is available. May I ask what you are calling about?

ADVOCATE:

Sure, I’m an individual/parent of a child/adult with Down syndrome. I would like to discuss a bill, the 21 Act package (HR 2695/HR. 2696) that is very important to our family.

CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:

Hi, this is XXXX, how can I help you?

ADVOCATE:

Hi, this is ___ (your name) __ from ___ (home town) ____. I’m an individual/parent of a child/adult with Down syndrome. I would like to discuss two important bills that make up the 21 Act package (HR 2695/HR. 2696. I am calling to ask my Representative to cosponsor this bill led by Representatives McMorris Rodgers (R-WA), Sessions (R-TX), and Van Hollen (D-MD).

The first bill, the 21 Research Resource Act, will expand and intensify Down syndrome programs of the National Institutes of Health and the Centers for Disease Control and Prevention to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank. These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research. This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The second bill, the 21 Research Centers Act, will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill also provides funding to support the Centers of Excellence.

CONGRESSIONAL OFFICE HEALTHCARE / DISABILITY LEGISLATIVE ASSISTANT:

I will let my boss know that we talked and make sure that he/she takes a look at the bill.

(Note: When you talk to the legislative staff, you are likely to get the response.)

ADVOCATE:

If your boss is interested in signing on as a cosponsor, you may contact:
Kim Betz (kimberly.betz@mail.house.gov or 202-225-2006) in Representative McMorris Rodgers' office.

Thank you for your time. I hope your boss will consider cosponsoring this important package of legislation. May I get your email so that I can follow up with you on this issue? Thanks very much!

If you are not on the NDSS action alert email list and would like to receive these alerts and information bulletins, please subscribe at: http://capwiz.com/ndss/mlm/signup/

Search for A Cure

2011-07-30T06:52:00.000-07:00

this article was in the NY Times.com, this is what we fight for, problem is, within our own community we have a "divided house." People that believe that with medication we are "changing" our kids. Here is the thing, we straighten our kids teeth with braces, we fix their heart conditions, we repair broken bones, we treat diabetes, we take allergy medications for allergies, don't we want the best for our kids and ourselves? Take the time to read and comment, with new non-invasive testing becoming available as soon as the next year potentially. This research field for DS may dry up because kids like Parker will have an even smaller chance of being born. Leaving my precious son and others without the chance of living improved, independent lives.

Thanks Dr. Costa and others for you dedication and continued pursuit!

"July 29, 2011
A Drug for Down SyndromeBy DAN HURLEY
Correction Appended

Early in the evening of June 25, 1995, hours after the birth of his first and only child, the course of Dr. Alberto Costa’s life and work took an abrupt turn. Still recovering from a traumatic delivery that required an emergency Caesarean section, Costa’s wife, Daisy, lay in bed, groggy from sedation. Into their dimly lighted room at Methodist Hospital in Houston walked the clinical geneticist. He took Costa aside to deliver some unfortunate news. The baby girl, he said, appeared to have Down syndrome, the most common genetic cause of cognitive disabilities, or what used to be called “mental retardation.”

Costa, himself a physician and neuroscientist, had only a basic knowledge of Down syndrome. Yet there in the hospital room, he debated the diagnosis with the geneticist. The baby’s heart did not have any of the defects often associated with Down syndrome, he argued, and her head circumference was normal. She just didn’t look like a typical Down syndrome baby. And after all, it would take a couple weeks before a definitive examination would show whether she had been born with three copies of all or most of the genes on the 21st chromosome, instead of the usual two.

Costa had dreamed that a child of his might grow up to become a mathematician. He had even prevailed upon Daisy to name their daughter Tyche, after the Greek goddess of fortune or chance, and in honor of the Renaissance astronomer Tycho Brahe. Now he asked the geneticist what the chances were that Tyche (pronounced Tishy) really had Down syndrome.

“In my experience,” he said, “close to a hundred percent.”

Costa and his wife had been trying to have a baby for a couple of years. Daisy’s first pregnancy ended in a miscarriage, which they knew can occur because of a genetic disorder in the fetus. When Daisy became pregnant a second time, Costa insisted they get a chorionic villus sampling, an invasive prenatal genetic test. But the procedure caused a miscarriage. (The test showed that the fetus was genetically normal.) Costa vowed that if there was a third pregnancy — this one — they would conduct no prenatal tests.

Now, with Tyche bundled peacefully in a bassinet at the foot of Daisy’s bed, and Daisy asleep, Costa sat up through most of the night crying. He had gone into the research side of medicine in part to avoid scenes like this — parents devastated by a diagnosis. But by morning, he found himself doing what any father of a newborn might: hovering by the crib, holding his daughter’s hand and marveling at her beauty.

“From that day, we bonded immediately,” he told me during one of our many talks over the last year. “All I could think is, She’s my baby, she’s a lovely girl and what can I do to help her? Obviously I was a physician and a neuroscientist who studies the brain. Here was this new life in front of me and holding my finger and looking straight in my eyes. How could I not think in terms of helping that kid?”

With no experience in the study of Down syndrome, Costa took a short walk the next day to a library affiliated with Baylor College of Medicine, where he worked as a research associate in neuroscience. Reading the latest studies, he learned that the prognosis was not nearly as dire as it was once considered. Life expectancies had grown, education reforms had produced marked gains in functioning and — of particular interest to Costa — a mouse model of the disorder had recently been developed, opening the door to experimentation. He soon made a decision: he would devote himself to the study of Down syndrome.

In 2006, using mice with the equivalent of Down syndrome, Costa published one of the first studies ever to show that a drug could normalize the growth and survival of new brain cells in the hippocampus, a structure deep within the brain that is essential for memory and spatial navigation. In people with Down syndrome, the slower pace of neuron growth in the hippocampus is suspected to play a key role in cognitive deficits. Follow-up studies by other researchers reached conflicting results as to whether the drug Costa had tested, the antidepressant Prozac, could produce practical gains on learning tests to match its ability to boost brain-cell growth. Undeterred, Costa moved on to another treatment strategy. In 2007 he published a study that showed that giving mice with Down syndrome the Alzheimer’s drug memantine could improve their memory.

Now Costa has taken the next step: he is completing the first randomized clinical trial ever to take a drug that worked in mice with Down and apply it to humans with the disease, a milestone in the history of Down-syndrome research.

“This was a disorder for which it was believed there was no hope, no treatment, and people thought, Why waste your time?” says Craig C. Garner, a professor of psychiatry and behavioral sciences and co-director of the Center for Research and Treatment of Down Syndrome at Stanford University. “The last 10 years have seen a revolution in neuroscience, so that we now realize that the brain is amazingly plastic, very flexible, and systems can be repaired.”

But the effects of that revolution on Down research may yet be cut short. A competing set of scientists are on the cusp of achieving an entirely different kind of medical response to Down syndrome: rather than treat it, they promise to prevent it. They have developed noninvasive, prenatal blood tests which would allow for routine testing for Down syndrome in the first trimester of a pregnancy, raising the specter that many more parents would terminate an affected pregnancy. Some predict that one of the new tests could be available to the public within the year.

Costa, like others working on drug treatments, fears that the imminent approval of those tests might undercut support for treatment research, and even raises the possibility that children like Tyche will be among the last of a generation to be born with Down syndrome.

“It’s like we’re in a race against the people who are promoting those early screening methods,” Costa, who is 48, told me. “These tests are going to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.”

So recently was the genetic cause of Down syndrome established that just this past March, Costa actually met the widow of the French scientist, Jérôme Lejeune, who made the discovery in 1959. The scene of their meeting was a Paris conference, named in honor of Lejeune, where neuroscientists from around the world discussed progress into treatments for Down and related diseases. Such a conference would have been inconceivable when Costa entered the field 15 years ago.

“If you think about most genetic diseases, they’re usually caused by one gene, and in fact one mutation at one amino acid,” says Roger Reeves, a professor at the Institute for Genetic Medicine at the Johns Hopkins University School of Medicine. “But with Down syndrome, you have an extra copy of all 500 or so genes on Chromosome 21.” In the first two decades after Lejeune’s discovery, the very idea of grappling with those hundreds of triplicated genes scared off scientists from any serious effort to find a treatment for what they were soon calling “trisomy 21.” It just seemed impossibly complex. “The turning point,” Reeves says, “came when Muriel Davisson made her mouse.”

Davisson, now semiretired from Jackson Laboratory in Bar Harbor, Me., spent the 1980s developing a mouse, known as Ts65Dn, that had many of the traits associated with Down syndrome, including, incredibly, the distinctive facial characteristics associated with the disease and the same slightly uncoordinated gait.

Five years after publishing news of her mouse, Davisson received an e-mail from a young neuroscientist named Alberto Costa. Her work, he told her, opened the door for him to conduct meaningful new drug research.

“It was an epiphany, that, oh, this is a field where I can apply a lot that I’ve learned,” Costa says. “Science is usually unforgiving with people who try to change career paths, but it was a risk I was willing to take.” Having earned his Ph.D. studying the electrical and chemical basis of communication between brain cells, “I figured, O.K., if there is something that can be done in this field, it’s going to be done at that level of neuronal electrophysiology.” After months of reading the latest studies, Costa knew he needed Davisson’s mice.

“He twisted my arm till I took him into my lab,” Davisson says with a laugh. “I didn’t have funding. He wrote a grant to get the funding. He is very enthusiastic.” She also found out that he was a “perfectionist, and not very tolerant of people who aren’t perfectionists. He doesn’t do experiments without being sure he’s doing them right. When he makes a finding, you know that it’s real.”

Using Davisson’s mice, Costa’s 2006 study with Prozac produced cellular changes in the brain. In 2007, Craig Garner at Stanford took the next step, reporting behavioral improvements in Ts65Dn mice after weeks of drug treatment. (Earlier this year, a company he co-founded to pursue that strategy received funding from a venture-capital firm.) Four months later, Costa published his memantine study, showing that a single injection of the drug produced behavioral benefits within minutes, enabling Down-equivalent mice to learn as well as standard mice.

Memantine works, Costa hypothesizes, not by boosting the growth of brain cells but by normalizing how existing cells use the neurotransmitter glutamate. Because people with Down syndrome have three copies of all or most of the genes on Chromosome 21 instead of just two, they have about 50 percent more of any proteins encoded in that chromosome. One result, Costa has shown, is that the NMDA receptors of Ts65Dn mice are “hyperactive” — they overreact to stimuli. By responding to too many things, they learn too little; the signal is lost amid the noise. But giving memantine to quiet the noisy NMDA receptors, Costa has found, makes the brain cells react almost normally.

Other drugs that work on different systems in the brain have also shown benefits in the Ts65Dn mouse. In 2009, Dr. William C. Mobley, chairman of neurosciences at the University of California, San Diego, and one of the most active and visible researchers in the field, co-wrote a study showing that a combination of drugs designed to raise norepinephrine levels in the brain normalized the mice’s learning abilities. Most recently, last year the Nobel laureate Paul Greengard of Rockefeller University showed that memory and learning could be normalized in Ts65Dn mice by lowering levels of beta amyloid, the protein goop that has long been known to clog the brains of people with Alzheimer’s disease.

“There’s been a sea change in our ability to understand and treat Down syndrome,” Mobley says. “There’s just been an explosion of information. As recently as the year 2000, no drug company would possibly have thought about developing therapies for Down syndrome. I am now in contact with no less than four companies that are pursuing treatments.”

Costa’s current memantine study began by testing memory and spatial learning in 40 young adults with Down syndrome. Daily, for 16 weeks, half received memantine pills, the other half a placebo. This fall, Costa will present preliminary results at a scientific meeting in Illinois on whether taking the drug made those with Down, in a word, smarter.

A half-hour from his office and laboratory at the University of Colorado-Denver School of Medicine, where he is an associate professor of medicine and neuroscience, Costa pulled into a parking space in front of his modest two-bedroom apartment. The figure of a girl in green dashed toward the car — and then vanished.

“Tyche,” Costa called to his daughter, “where’d you go?”

We both stepped out to look for her. I found her standing in front of another car, a Subaru Forester, waiting to get in. Dressed in a lime-colored shirt and skirt, the bangs of her mahogany hair framed by a hair band, Tyche stood just 4 feet 6 inches tall, with a round face, broad nose and heavy-lidded eyes.

Seeing my puzzled look, Costa explained that they also owned the Subaru — which he usually drove with Tyche. He led her to the Toyota we’d arrived in, where she sat down in the back seat. As Costa drove us to his office, I asked what she thought of her father’s work.

“He’s the greatest scientist,” she said, in a slurred, high-pitched voice. Then she added with a laugh, “And he builds evil machines.”

“That’s from watching too many cartoons,” Costa said. “Her favorite is ‘Phineas and Ferb.’ Of course, there’s an evil scientist in it who builds all kinds of machines.”

“Like the Smell-inator,” added Tyche, who turned 16 in June.

Back at Costa’s office, Tyche demonstrated to me what people with Down can be capable of even without medication. (Because she’s not an adult, Tyche is ineligible to participate in her father’s study.) On the whiteboard at the front of the room, Costa wrote out an algebra problem for her to solve: 8x2 - 7 = 505.

“She’s one of only two people with Down syndrome who I’ve ever known to be capable of doing algebra,” Costa said. “Normally we give her a problem before she goes to bed.” As she solved the equation, taking six steps to conclude that X equals 8, he said, “It’s basically instead of a bedtime story.” This past Christmas, he proudly noted, he gave her the Rosetta Stone language program for learning Portuguese, and by March she had finished with Level 1 and begun Level 2.

It turns out that with vigorous education and support, many people with Down do far better than once thought possible. Medical care of heart and other physical ailments associated with the disorder have likewise achieved significant benefits, doubling the average lifespan from 25 to 49, in just the 14 years between 1983 and 1997.

Still, with an I.Q. that is typically around 50 points lower than average — with some far lower and others, like Tyche, reaching higher — something more than education alone would be necessary to enable the majority of people with Down syndrome to live independently. Costa said he hopes that memantine might be that something, raising I.Q. noticeably, even if modestly. For him, the goal is to help people with Down syndrome achieve autonomy. “At some point, you want your children to have their own life,” he said. “It’s about independence.”

Costa was raised in Brazil, the son of a marine officer and a seamstress. When he was 14, his parents divorced. His father sent little support, and he and his two siblings lived with their mother in poverty. Perhaps inevitably for someone who had to struggle to rise above his circumstances, he comes across as intense and consumed by his work; he hasn’t taken a vacation since Tyche was 3. But he is also devoted to his daughter and wife, spending most of every weekend with them.

“She’s a great kid,” he said. “She has a very strong personality. In many ways she has features of a regular teenager. She doesn’t like me to get into her bedroom. She loves pop music and vampires.” Her relatively high functioning, he told me, is important to him. “If Tyche were really severely affected, I don’t know if I would have had the energy to go on with this business.” Then again, he admits to having paternal feelings toward all 40 young adults in his study, whose cognitive abilities vary widely. “At the end of the day,” he said, “their parents know someone really cares for their kid. It’s not an academic experience for me. It’s my life.”

In January, and again in March, a spate of news reports described new studies of the noninvasive blood tests that would allow pregnant women to check for Down syndrome without the risks and discomfort associated with chorionic villus sampling and amniocentesis. Few of the articles, however, took note of the profound unease many medical ethicists, including some who are ardently pro-choice, feel about the tests and how they might lead to a dramatic reduction in the Down syndrome population.

“Even people who are traditionally against abortion are sometimes willing to condone it when the abortion is of a fetus with a disabling trait,” says Erik Parens, a bioethicist at the Hastings Center in Garrison, N.Y. “But it’s important to recognize that there is a huge range of genetic disorders. In their own way, a lot of kids with Down syndrome flourish, and so do their families.”

Advocates of the new tests insist that parents will be given news of an affected pregnancy by a trained geneticist who will present the information fairly and fully. Critics, including Costa and many other parents of children with Down syndrome, say that such dispassionate approaches rarely happen in practice, with many obstetricians and genetic counselors providing unduly negative or misleading information.

But Stephen Quake, a professor of bioengineering and applied physics at Stanford and a developer of one of the new tests, says: “It’s a gross oversimplification to assume that these tests are going to lead to the wholesale elimination of Down-syndrome births. My wife’s cousin has Down syndrome. We just celebrated his 21st birthday. He’s a wonderful person. It’s not an obvious step that you would terminate an affected pregnancy.”

But Costa points to a falloff in the financing of Down-syndrome research since the prenatal tests have been in development. Although it’s difficult to compare the numbers, money from the National Institutes of Health dropped to $16 million in 2007 from $23 million in 2003, before creeping back up to $22 million in 2011. That’s far less than the $68 million slated for cystic fibrosis, which affects an estimated 30,000 people in the United States, at most one-tenth of the 300,000 to 400,000 people who have Down.

“The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?”

Alan Guttmacher, director of the National Institute of Child Health and Human Development, denies that this is the calculus used by his organization. Yet he offered no clear answer when I asked him why about $3,000 in research dollars is spent by N.I.H. for every person with cystic fibrosis, compared with less than $100 for every person with Down.

“The number affected is a fair metric to use,” Guttmacher said. But, he pointed out, most of N.I.H.’s funding decisions are based on the strength of proposals coming from researchers. Advocacy groups for disorders like AIDS, autism and breast cancer have certainly played a role in their gaining increased funding, he said. And perhaps, he speculated, Down suffers from an image problem. “Part of it is that Down syndrome has been around for so long,” he said.

Representative Cathy McMorris-Rodgers, Republican of Washington, who co-founded the Congressional Down Syndrome Caucus soon after her 4-year-old son, Cole, was born with the disorder, has had little success in having money appropriated for Down research.

“I find myself wondering how N.I.H. really sets their priorities,” she told me. “I’m quite concerned that so many of the researchers in the Down-syndrome field have difficulty getting funded.” She continued, “My fear is that for some, they believe that it’s been taken care of through prenatal diagnosis.”

Even Costa has struggled to secure financing. He lives with Tyche and Daisy in a rented apartment, having never felt he had enough job security to buy a home. At his laboratory, some of his most expensive and sophisticated equipment for studying Down syndrome remains in storage, literally gathering dust for want of financing to use it. One source of his research money has been the Anna and John J. Sie Foundation, based nearby in Denver, and run by Michelle Sie Whitten, whose 8-year-old daughter has Down syndrome. Three years ago, the foundation established a research institute at the University of Colorado in Denver, where Costa works.

Plainly, though, he didn’t get into Down-syndrome research for the money. “There’s a reason why I’m doing what I’m doing,” he told me, nodding toward Tyche.

Not all parents of children with Down syndrome embrace Costa’s vision of a medical treatment targeting intelligence. In a recent survey conducted in Canada, parents were asked what they would do if there was a “cure” for their child’s Down syndrome. A surprising 27 percent said they would definitely not use it, and another 32 percent said they were unsure.

Meanwhile, the major not-for-profit advocacy groups devoted to Down syndrome spend little on research, instead preferring to lobby and offer parental support. Fresh energy has come from two relatively new groups determined to turn the situation around — Research Down Syndrome and the Down Syndrome Research and Treatment Foundation — but even they have so far succeeded in each raising only about $1 million a year, a fraction of the annual research budgets of many other disease-advocacy groups.

Behind the ambivalence toward treatments, some parents say, is a fear that increasing their children’s intelligence might change their personalities — their very identities.

“Nobody would be against giving insulin for diabetes,” said Michael Bérubé, director of the Institute for the Arts and Humanities at Pennsylvania State University and author of the 1996 book “Life as We Know It,” published five years after his second son, Jamie, was born with the disorder. “But Down syndrome isn’t diabetes or smallpox or cholera. It’s milder and more variable and more complicated. I’d be very leery of messing with the attributes Jamie has. He’s pretty fabulous. At the same time, I’m not doctrinaire. If you’re talking about a medication that allows people to function in society and hold jobs, how can you be against that?”

The parents I met whose children participated in Costa’s study expressed little of Bérubé’s ambivalence. Peggy Hinkle told me about changes she saw in her 26-year-old daughter. “When Christina was on the pills, she told me one morning about a dream she had. She gave me five full, complete sentences. Which is a very big deal. Not only that, she left the room and came back later and told me another sentence about the dream. And she started to do Jumble word puzzles in the newspaper. I don’t know if she was on the drug or on placebo, but after five weeks there was a change. Boom. That’s why we participated: to expand her horizons.”

For his part, Costa has no doubts about the work to which he has devoted the last 15 years of his life. “If you have a disorder that’s changing the function of an organ, which in this case is the brain, and you use a medication to bring the function of that organ closer to where it was meant to be from millions of years of evolution, that’s as fair as treating any other disease,” he said. “I don’t see it as any different.” If his current study is successful, Costa’s ultimate goal is to test it in youths, like Tyche, during the crucial early years of development. Costa is quick to point out that he has not offered her memantine outside the study, and he discourages other physicians from doing so until its safety and effectiveness is proved. But from his perspective as both a researcher and a father, he said: “The sooner you start, obviously, the greater would be your hopes. All I know is, the clock is ticking.”

Dan Hurley (hurleydan1@gmail.com) is the author of "Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It."

Editor: Ilena Silverman (i.silverman-MagGroup@nytimes.com)

Correction: July 30, 2011

An article on Page 28 this weekend about Dr. Alberto Costa’s search for a drug that could help Down syndrome patients misidentifies a neurotransmitter that Dr. Costa says is affected by the drug memantine. It is glutamate, not NMDA. The article also misstates, in one instance, Dr. Costa’s surname as Castro.

One Year Ago Today..

2011-07-20T05:17:00.000-07:00

at this time last year we had handed our precious baby boy over to the surgeon at TCH for heart surgery. We were huddled as a family in the family center at TCH. The support of family and friends in that room was apparent and I am truly grateful. I must admit somedays it seems like years ago, other days it is hard to believe a year has past. Parker has accomplished so much in the last year, he is a different boy than he was last year. He's walking (running), talking, and getting into all kinds of typical 2 yr old trouble. I don't reflect often on the surgery aside from touching his scar and praising God for His goodness. I don't let my mind wander when I hear about families that were not as blessed as we were during surgery. I don't spend time dwelling on "what if he needs another surgery" after talking to other friends who find out their kids need more OHS later in life unexpectedly either. A dear friend is in the hospital in critical care ICU faced with the possibility of a heart transplant so this last week I have thought of Parker's surgery more than usual. Her arrival to the hospital was totally unexpected, the result of a massive heart attack. It reminds me that none of our days are promised, God is the only one that knows what lies ahead. He expects us to remember that this is not our home, that our home is in heaven and we should not measure by the world's standards. I must admit our summer has been busier than ever and many days I find myself forgetting just this. Today, please join me in celebrating God's goodness, His favor on our family, and our precious son Parker who gives us such great joy!! To God be the glory!

Phillipians 1:9
"And this is my prayer; that your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ - to the glory and praise of God."

Summer!

2011-07-01T06:15:00.001-07:00

We continue to live life in the "fast lane," summer is supposed to be for lazy days...not so much around our house, we have been busier than ever! Thought I'd post some of the events over the last few weeks. Most of you remember we spend the summers playing baseball, last year the boys went all the way to State. Last night we won the first stage, District! Madeline has been busy with gymnastics, swimming, and theater. She was Miss Hannigan in Annie and earned herself a role as a Munchkin in the big production in the Wizard of Oz coming up in August. She loves to sing and she may have found a new passion! Mallory has been busy with gymnastics, swimming and girl scout camp. She is looking forward to her first sleep away camp with church in a few weeks. Both girls went to Vacation Bible School too. Parker and I have been busy with the typical therapy and Drs appointments, we just came back from Chicago Monday night after seeing his endocrinologist. Good news, Dr was pleased with impressed with his "skills" couldn't believe how well he was getting around (and getting into everything) and his verbal skills. He got bonus points for growing 1 1/4 inches since January and gaining a pound. He's now 32 1/4 inches and 23 lbs. We did a 4 hour growth hormone test and will have the results in about 10 days. We head back to Dallas on the 13th for his neurodevelopmental eval. Putting lots of miles on my car these days! Strangely this busyness feels like we are back to "normal" life. Days come when it seems overwhelming (and I'm still threatening to move to the country), but we have a great full life and we are blessed!

Can you tell who loves baseball? he's got quite the throwing arm too!

Ds and Alzheimers

2011-06-22T14:20:00.001-07:00

For the most part this blog is a personal journey...I try not to hit the more "difficult" moments too hard, but this video came thru and it needs to be posted. I spent last week at a fundraiser for Ds, met the top researchers in the field and we talked about new and promising clinical trials that are on the CUSP of funding. Here is the reality folks, many parents do not know that the chemistry of their child's brain is accumulating ameloid plaques at an alarming rate and they are predisposed to Alzheimer's at a MUCH younger age. While I know this isn't what many parents want to hear about their precious baby, you need to watch this video and be educated. You need to get involved and more importantly we as parent groups NEED to be action oriented to supporting these trials and efforts post-haste. As a community we tend to be silent and not ask for trials, please be informed and get involved. For those of you that read this blog because you are friends and family, know that this research is equally as important for the general population. What you may or may not know is this Alzheimer's research effects the general population as well. Every penny counts. Look at my baby's face, don't let him be one of the statistics. http://www.researchds.org/ and http://dsrtf.org/

Funny Faces..

2011-06-05T13:43:00.000-07:00

Parker has been keeping us all entertained lately. He's got several new faces...usually they go right along with what he has "up his sleeve." There is the "I'm about to do something sneaky, are you watching?" "What do you mean no?" The "I'm busy avoiding you look.." and the "yes, I know I'm cute look.." He's definitely got the potential for "terrible twos" although we are working hard to keep them at bay. Funny, the other kids didn't go through them until 3-4, in Parker's case we might be early! Notice I DID cut the wispy hair, note to self, take child to a professional...

Happy Birthday Parker

2011-05-23T10:30:00.001-07:00

Photo and video editing at www.OneTrueMedia.com

Birthday Boy!! 2 years!

2011-05-23T10:16:00.001-07:00

Happy Birthday!!! Today is Parker's 2nd birthday...looking back we've come so far in 2 years! We had cake and balloon fun last night after dinner. Video is from last night. Parker is walking everywhere these days. Forgive the lack of pants on the video, they didn't survive the cake eating...shoes are our new best friend. We are working hard on keeping Parker from pronating in while walking. Some days are better than others. If you had told me there was so much to consider when walking I never would have believed you. 10 weeks now we've been walking. I'm dying to buy the cute fishermen sandals, but of course they are "no-no's" as are crocs, flip flops or anything cute and flimsy. BAH. So, I have settled on PediPeds, they seem to be the most sturdy. We are celebrating life and lots of new milestones. God's blessings are abundant! Happy birthday my precious boy, we love you!!!

"God is able to do far more than we would ever dare to ask or even dream of, infinitely beyond our highest of prayers, desires, thoughts or hopes."
Ephesians 3:20

Sleep Study Night

2011-05-03T12:31:00.000-07:00

we checked in at 6:45pm at Texas Childrens Hospital 21st floor..little did I know what we had in store! I knew these things were difficult, in fact the ENT told me, "most parents do it once and never again despite the recommendations for a study annually after age 1." I've had friends that had babies with apnea and they said it was miserable, even a fellow Warrior mom had one done last month on her son a few months younger than Parker...guess what they say is true "ignorance is bliss.."

At 7:10 we started the process of "hooking him up" with wires and sensors to the extent I have never seen before! 25 on his head alone!! To say this was a difficult task would be an understatement. He cried, angrily screamed, sobbed, to the point of exhaustion, catching breath, you name it for 1.5 hours. The tech kept telling me "not to let anything touch the wires" come on, the poor kid was desperate to be held close in a hug by his Mom. Or, better yet, get down and run around! She had to remark his head with greasy red wax crayon at least three times. She tried to find reinforcements, but that tech was "having trouble of her own," so we went at it one more time. I can promise you I was not leaving without a fight although the tech almost had me convinced it wasn't going to work. So, we "papoosed" him (nice way of saying tie up all arms and legs in a sheet) and we toughed it out. This was after she put shunts on both arms (like velcro casts with sticks) to keep him from pulling wires off. By God's grace we pulled it off and he was "wired." Don't let the pictures fool you, he may be smiling in them, but he was fit to be tied. He got about 10 minutes of play before we started while I brushed my teeth for the night.

Parker fell asleep quickly (not surprised) and he had 3 easy hours of sleep until midnight when he pulled the tubes in his nose out. So, we then spent the next hour getting those back in. He was trying to sleep through it all, but we had to wake him and crying commenced again. After three tries we finally prevailed and some "super sticky tape" was taped over what you see on pics. Asleep again...ahhh..then at 3, 4 and 5, the machine that read the nose wires (CO2) kept stopping so wires had to be replaced. Parker slept through this fortunately.

At 6am, we were told "test is complete!" "Gee, how rested I feel!" LOL, Then came the "cleanup" of stickie tape which I'm still working on this pm.

So, the tech asked me several questions (part of the study):
1) did he sleep here like at home? ME:Ah, NO, we never wake up at night nor have intentional torture before sleeping...
2) how long do you think it took him to fall asleep? ME:5 minutes SHE:Something like that she says, it was really fast..not surprised, he is easy to put done to bed, but after all that emotion it probably wouldn't have taken a minute!
3) how many hours do you think he slept? ME:6.5, SHE: no, more than that. ME: well, test was 8 hours, minus 1 hour in middle of night, and other "issues" maybe he did sleep more, but....

we will get results in 72 hours, but what she did say was his REM was impressive, I tried to get %, but she hadn't figured that out yet. She wanted to know what we were doing differently.

So, do I recommend the study? Well, I do, but be prepared. I will also wait to see what results say to make my final opinion. We don't suspect apnea and if test confirms that he does not have apnea, I might be inclined to "trust my gut" and pass on that annual study. Problem I see potentially with our study is Parker was so upset, his nose ended up getting stuffy, so is that a good time to take the test? How do they measure all that stress in the results?

And, to top all of this off, I learned they watch you all night! Creepy for me, big balls on ceiling with cameras. Needless to say if they had studied my sleep they would have known I wasn't sleeping a wink!

Gotta love this precious boy, smiles even in the midst of tortune..Papa Smurf look out!! "gee MOM, why can't I bend my arms, waving and playing is hard with these things on!"

Has your child had a sleep study??

2011-05-01T13:21:00.000-07:00

Tomorrow evening Parker and I will check in to the luxurious "sleep center" at Texas Childrens Hospital where we will spend the night in hopes of having a successful study done on his sleep. Yes, the sleep center is the actual hospital. I have found that while there is a plethora of sleep centers for children 6+ and adults, no other facility can accomodate babies. Also interesting to note is that there is an 8 month waiting list for these studies at TCH! WHOA! I was blessed and I have a precious friend that helped us hit the top of the wait list, so here we are ready to go.

Why a sleep study? This was not even on my radar screen until a month or so ago. I'm part of a group of "warrior Moms" that are up to date on the leading research and helping drive cognitive research. These Moms are some experienced ladies, they know the science inside and out and they have older kids so they have experience and answers that I have found diffcult to find in this journey. So, these ladies found that perhaps sleep is even more important that we give it credit. During sleep the GABA receptors change whether the child is sleep deprived or well rested. What I also learned is that even though I think Parker has NO sleep issues (doesn't wake at night, is quiet as a mouse sleeping, has terrific consistent sleep patterns, isn't lethargic during day time) many parents think their child has no issues, but they really do. See this quote from Cincinnati Childrens,

"They found that in general, parents of children with Down syndrome significantly underestimated the severity of their child's sleep disturbances. Overall, 69 percent of parents reported no sleep problems. Yet, 57 percent of children expressed abnormal sleep patterns. In the children with abnormal sleep study results, only 23 percent correctly predicted a problem. In a previous study, only 32 percent of parents suspected their child had obstructive sleep apnea, despite a 100 percent incidence of abnormal studies.

There is concern that an excessive number of arousals may lead to fragmented sleep and sleep deprivation. Excessive sleep arousals and sleep fragmentation have been linked to symptoms usually associated with sleep deprivation such as daytime sleepiness, lack of energy and lack of initiative.

Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome."

Out of a group of Moms I talked to that had the initial sleep studies done at 2-3yrs, 5 of the 6 kids had issues when none thought they did. When I questioned Parker's Drs, the response was, ENT, " yes, National DS Society recommeds sleep study annually at age of 1 and older." Hmm, then why am I telling YOU I am doing a sleep study? Pediatrician.. "I'm not concerned, but I'm happy to order one." ENT said most families do it once and never go back since it is such a nightmare and then of course there is that little thing of the 8 month wait list! Seriously? What if I really thought Parker had a serious problem? How do YOU feel if you don't sleep well for a few days? IQ goes down a lot, right? I'm not excited about the hospital stay myself, but chock this up to a preventative visit and a pretty darn important one in my book. What we also learned was that giving ginko in several doses during the day rather than one dose effects REM sleep. This is BIG. Go goggle pubmed if you don't know what I'm talking about. Ginko has a half life and what we learned was that the kids are inhibited again without the continued dose during the day.

Parker's Urologist appointment was this week too, let's just say we have to visit TCH again in the near future. Again, until we saw the holistic MD no mention of issues. What we learned is that with "100% certainty" Parker needs to have orchiopexy to help descend his testicles. There, too much information, sorry! What amazes me is most kids have this repair done before 2 years. More a concern about forming memories of this procedure than the other concerns some might have about this issue. Both his pedi and his endo knew this was a possibility. Again, when asked pedi.."I'm not concerned.." Endo, "if not dropped by June, you will need a specialist." So, being the type-A person I am, decided I will see specialist now...asked him if he thought it would change by June, "I can tell you with 100% certainty it will not." Well, at least he's confident, right? He did say it is minor procedure, day surgery, so unless cardio is concerned we should be in and out quickly. He said no rush, but better to do it sooner so we don't form memories of procedure. So, guess we will add that to our calendar too in the next few months.

I'm not crying in my wheaties, just posting this so others can be sure they are vigilent. These are not big things in the grand scheme of things, new for us, but we are taking them in stride. This little one sure makes us grateful and thankful!!

Easter! Picture Overload!

2011-04-24T14:49:00.000-07:00

I can't let this day go by without sharing the fun we've had this weekend. The evenings have been so terrific here and Parker loves to be outside, so we spend lots of time playing outside in between swimming, gymnastics, and baseball. Have to get that in before the heat is too much..the days have hit 90's already and the mosquitos are in full force, the pics show the nasty bites on his legs and arms already! I'm afraid he has his mom's skin, poor baby! This past week I made two road trips, to Dallas and Austin, so I feel "cheated" out of days! Next week we have a "lighter" week, only one "new" specialist to see..a pediatric urologist..working on a sleep study the following week..in addition to Dallas for our ND 3 month eval we saw the ENT and Parker's ears continue to be fantastic! No problems with congestion or ear infections, we are so blessed! Our ENT wants to know how we keep him so healthy and doing so well! I met a Mom of a 4 yr old little girl with DS in the waiting room. She kept watching him play with the cars (zoom, zoom,zoom he says) and him talking to the other children interacting and having fun. She came over and gave me a perplexed look, then said, "you don't use ECI do you?" hmmmm...no...my heart ached for her, her little girl wasn't verbal at all and she was really in her own world almost fearful of the kids. Please don;t misunderstand me, ECI probably has some terrific folks and programs, it just didn't work for our family. Parker went over to play with her, but she got up and hid with her Mom. I am reminded by those encounters that we have so much to be thankful for and often when I decide to throw a pity party for me, God gives me those encounters!

So, egg hunting is a new favorite..maybe next year we will put them in the basket instead of throwing them and saying "ball" The pics tell the story, "Mom why are they so yucky when I throw them?" The confetti eggs were more fun to put our fingers in and really the new favorite thing is our pool (pants are off because we sat in pool). Guess we will have to add swim lessons this year. Parker loves to be in the water, now he can put his face in and blow bubbles. Good thing we still have the pool gate...

Praising God for his blessings, especially this Easter Sunday! 1 Peter 1:2-5"Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time."

Yes, I am surprised to learn they still make 'PEEPS" I have been told they really are terrific and now they come in chocolate flavor now...YUCK! Give me black jellybeans and dark chocolate eggs anyday! :)

A Birthday Wish

2011-04-12T05:27:00.000-07:00

tomorrow is my birthday...I'm not in the habit of asking for birthday gifts, but this year God placed it on my heart to "wish" for something very important! The third annual Changing Minds Butterfly Flutter By... is coming up on May 15, 2011. That day 1,000 Painted Lady Butterflies will be released for a beautiful mass flight. The transformation of the caterpillar and the butterfly to our children with Down syndrome is a wonderful representation that with treatment our children are experiencing the freedom from the limitations of Down syndrome. All funds go to expand awareness of the need for research to treat Down syndrome. There are some exciting clinical trials happening NOW, but the National Institutes of Health(NIH) says that we "are not concerned" about our children and they place their research dollars in other areas. The amount spent per child with DS is appalling, $24 per child with DS as opposed to $3000.00 per child in other areas. We are being passed over for critical research dollars because the NIH believes we just "don't care about helping our kids." To become an active voice for our children we have to become more vocal and raise funds for this very important investment in our children's future. We know more about the genetic makeup of Down syndrome than any other syndrome yet we are the furthest behind in helping our children. I have personally committed to raise $1,000.00 for this event.

Each butterfly is $21.00, you can make a donation online thru paypal by following this link, http://www.changingmindsfoundation.org/documents/fundraiser.html

or send a check to: Changing Minds Foundation 1714 Surrey Court Richmond, TX 77406

Please consider making a donation to help further Parker's future. Our goal is to give him the freedoms we all want and so richly deserve. It is possible for children with Down syndrome to achieve, we believe!

If you are in Houston, please come and join us at this wonderful family event. There will be lots of fellowship with other families and the release of the butterflies is something to be seen! God's creation taking flight!

My Montage 4/8/11 at OneTrueMedia.com

2011-04-09T06:24:00.001-07:00

Photo and video editing at www.OneTrueMedia.com

Slow but steady wins the race

2011-04-09T06:14:00.000-07:00

as usual Parker always does things his own way...and Mom must learn it is HIS way, however unique...what I have humbly learned is that while most typical kids just walk once they start and throw crawling aside, Parker still prefers to crosspattern crawl with walking here and there. Interestingly enough he is more motivated to walk around other kids his age (continuing to support my theory that kids with DS need typical models at this stage rather than a school of DS kids). He is the master of creativity...since our weather has been so hot already we stopped wearing pants...he doesn't like scraping his knees on the concrete so in between walking he started bear crawling! In the house he doesn't bear crawl, so he's figured out when it is appropriate! I am reminded that "slow and steady wins the race"

Make an on-line slideshow at www.OneTrueMedia.com

more steps.....

2011-03-27T15:46:00.001-07:00

I edited the longer clip, VERY dark, I deleted the commentary..this is for the relatives to see! I will work on better quality I promise! Watch closely the 4-5steps are the darkest (or course) and happen close to the beginning. Shows you how determined Parker is!!

I fixed yesterday's videos too, this is what happens when you don't "check your work" LOL.

Make photo slide shows at www.OneTrueMedia.com

Baby Steps

2011-03-26T05:24:00.000-07:00

it has been a BIG few weeks in our house!!! I haven't had time to post, but here are our MAJOR milestones!! STRAW drinking!! And I don't mean a sip, we can do an entire cup with no issues!! As many of you will remember this has been a challenge, Parker has been able to straw drink since 14months, but would only take 1-2 sips and then spit the liquids out. We tried every technique, had eval after eval to only be told he had no issues with his lip closure, tongue thrust, or swallowing, just that he was "stubborn." Gee, why am I not surprised? But, a few weeks ago when presented he drank the drink in its entirety!! Talk about the joy of the small things...we never used bottles w/Parker, so this is BIG! Let's just say we love the new independence! Bigger news....he's walking!!! Each day we make strides and we aren't perfect by any means, but it is walking! This clip is of last week when he started standing up everywhere unassisted. It was funny, when I first noticed him doing it, I was cooking in the kitchen, he was behind me practicing over and over again. He only takes one step in the clip , but trying to get a video is next to impossible! I have a 3minute one with 6 steps, but the commentary is typical of our crazy household and the color terrible. I will work towards a better internet worthy video for the masses. Again, who knew this would take 8 long months!! He began pulling up at 14months and started cruising shortly after. Everyone knows we have pushed cross pattern crawling with him for brain organization, but let's admit it, it is hard when all people do is ask if he's walking! WHEW!!! What is interesting is he went from one step to multiple steps, so it seems now that he's "got it" he will move quickly into a full on run (we hope or not)! clip 2 shows how fast he can crawl, no wonder the child has taken so long to walk, he's speedy! People always comment on how FAST he is! And I really don't think Mallory meant to hit him w/the ball, but listen to Parker laugh when she does!

Parker had the privilege of doing a photo shoot for a photographer trying to take her photos of DS kids National. Here is his premier. He is also being used in the DSRTF direct mail piece for fundraising. That I will save for another post, they are doing some fantastic things to raise funds for DS cognitive research, if you haven't already, go to their site and get connected. www.dsrtf.org All for now,

Photo and video editing at www.OneTrueMedia.com

No wonder the days seem so short..

2011-03-08T07:44:00.000-08:00

This post isn't to complain, nor is it to make people feel sorry for us...I keep feeling like I don't have a minute to myself and the days are over before they begin. So I sat down to figure out where I am going wrong...I'm in a quest to shed our lives of the unnecessary and be sure the priorities get completed each day. Here is a snapshot of the last two weeks, interestingly I could take any 2 weeks and they'd look the same..all of these appts are for Parker ONLY..

6 visits to therapy - 1 hour appts, 40-50 minute commute roundtrip
8 visits to Drs - specialists, pedi, holistic MDs, naturopaths, osteopath-average length of visit - 1.5 hours, again 40-50minute roundtrip commute on EACH visit
2 visits to nutritionists - 1.5 hour visits
1 feeding evaluation - 2 hour eval - 40 minute commute
1 trip to lab for bloodwork - 1 hour, at least 10 mile commute

Add in after school activities for the other three kids, practice, games, and homework and NO WONDER I get nothing done! Parker's ND program takes at least 1.5 each day, add in one nap, cooking dinner too...

Oh, and for the most part about 15% of these visits are covered by insurance. And the ones that are require me to spend at least an hour a day fighting to get reimbursed correctly. Which leaves very minimal time to get work done (double edged sword since all of this costs a LOT of $$) except for early hours and late evenings.

So, please forgive me if I don't respond to your calls or emails promptly or if I totally "flake out" sometimes. I know this is a BIG change as I always was on time (early even) and the first to respond. I love each and every one of you so much, but need your grace these days. Family has to come first(right after Christ) and meeting their needs is my top priority!

I'm posting this for other Moms experiencing the same things, know you aren't alone!

Sorry no pics this post either..no time for pics, promise next post, PICS!!!

XO

Curcumin

2011-03-02T05:25:00.001-08:00

Today's post is about curcumin...Parker is on several supplements, but curcumin continues to show benefits for all of us. I've started taking it as well, don't get me wrong, I'm not encouraging you to run to GNC or Whole Foods and buy tons of supplements and do believe if you CAN get them from food sources it is always best, but who can possibly eat pure all the time? This is a MUST do supplement as far as I'm concerned, but be forewarned the "yellow kitchen" syndrome is true, it stains everything, fingernails too. Google benefits of curcumin and see for yourself, I've given a quick summary(Dr Mercola) below:

"Curcumin—One of the BEST Supplements for Many Cancers Too!

....If you want to use curcumin to prevent stroke I believe your best strategy is to use it as a food in the form of turmeric. However if you have a severe illness, like cancer, then it is best to use it as a drug at a much higher dose as described below.

Dr. William LaValley from Austin Texas is one of the top natural medicine cancer physicians I know and he recently shared this important information on curcumin, which has the most evidence based literature for use as a cancer support than any other nutrient.

Curcumin affects more than 100 different pathways once it gets into the cell. Interestingly this also includes the metabolite of curcumin and its derivatives, which are also anti-cancer. Best of all, curcumin appears to be safe in the treatment of all cancers.

In India where turmeric is widely used, the prevalence of four common U.S. cancers -- colon, breast, prostate and lung -- is 10 times lower. In fact, prostate cancer, which is the most frequently diagnosed cancer in U.S. men, is rare in India and this is attributed, in part, to the curcumin in turmeric.

Numerous studies have looked into this potential cancer-fighting link, with promising results. For instance, curcumin has been found to:

•Inhibit the proliferation of tumor cells
•Inhibit the transformation of cells from normal to tumor
•Help your body destroy mutated cancer cells so they cannot spread throughout your body
•Decrease inflammation
•Enhance liver function
•Inhibit the synthesis of a protein thought to be instrumental in tumor formation
•Prevent the development of additional blood supply necessary for cancer cell growth
And, according to researchers from the University of Texas M.D. Anderson Cancer Center, curcumin blocks a key biological pathway needed for development of melanoma and other cancers.

The spice actually stops laboratory strains of melanoma from proliferating and pushes the cancer cells to die by shutting down nuclear factor-kappa B (NF-kB), a powerful protein known to induce abnormal inflammatory response that leads to an assortment of disorders such as arthritis and cancer.

To get the full benefits that curcumin has to offer, you will want to look for a turmeric extract with at least 95 percent curcuminoids that contains only 100 percent certified organic ingredients.

The formula should be free of fillers, additives and excipients (a substance added to the supplement as a processing or stability aid), and the manufacturer should use safe production practices at all stages: planting, cultivation, selective harvesting, and then producing and packaging the final product.

Details on How to Use Curcumin
The unfortunate challenge at this time is that good formulations of curcumin to use in cancer still aren't available. This is because relatively high doses are required and curcumin is not absorbed that well. Typical anticancer doses are up to three grams of good bioavailable curcmin extract, three to four times a day.

One work-around for this is to use curcumin powder and make a microemulsion of it by combining a tablespoon of the powder and mixing it into 1-2 egg yolks, and a teaspoon or two of melted coconut oil. Then use a high-speed hand blender to emulsify the powder.

Another strategy to increase absorption is to put one tablespoon of the curcumin powder into a quart of boiling water. It must be boiling when you add the powder as it will not work as well if you put it in room temperature water and then heat the water with the curcumin already in it. After boiling it for 10 minutes, you will have created a 12 percent solution, which you can drink once it has cooled down. The curcumin will gradually fall out of solution over time and in about six hours it will be a 6 percent solution, so it is best to drink the water within four hours. It does have a woody taste.

One caution to know is that you want to avoid the "yellow kitchen" syndrome. Curcumin is a very potent yellow pigment and can permanently discolor surfaces if you aren't careful."

conquering your fears

2011-02-19T05:24:00.000-08:00

I have always been cautious about things...I like to research and be assured things are "safe" before I do them. I also am highly competitive so "trying" things that I perceive I won't be the best at isn't really my style. I'm also a worrier. Not that any of this surprises anyone. It is a constant battle Satan plays with me, I know it, but still many times he gets the best of me. I decided after this last trip it might be worth reviewing a few things I am fearful of..

white water rafting..we went to Canada a few years back and I was part of a white water rafting experience. let's just say while I survived it wouldn't be the first thing I'd run back to do. Believe the guide when they tell you the water is arctic cold and will paralyze your throat if you swallow it. note to self, sit behind larger people as they block the wall of water that comes at you. Do not sit in front of boat, do not wear contact lenses even if you are blind like I am. I can check it off the bucket list though..

I hate boats. I get motion sickness and I can think of nothing worse than being stuck on a boat. The thought of a cruise terrifies me.

I also hate small spaces. I can convince myself that an elevator is too small sometimes.

I am afraid of heights. I'm OK flying since we fly so often, but I don't like watching from the window down, I usually draw the shade if i have a window seat.

I don't like riding jet skis behind my precious hubby at 60miles an hour on choppy water.

I love animals, but prefer to touch them at Sea World where they do not have their parts intact. In Cayman, the big thing is to go to Stingray Island and pet the stingrays. As you will see I did venture out and touch the stingrays, but the motivating factor was the anchored boat which was rocking so bad back and forth it was sickening. This was an experience like no other, these things come at you like sharks in the water. Frightening! The men seemed much braver for some reason, check out my hubby, the stingrays get excited and flop all over you...I had the guide hold the stingray. Yes, they feel like a squishy mushroom.

Snorkeling - we hadn't done this since our honeymoon 18 years ago. We started at the beach and the reefs and fish were amazing. At the beach all I could hear was my breathing, sounded like Darth Vader. Then out in open water which was even better. I learned that a lifejacket makes the experience so much better. I have new appreciation for the swimming skills my kids have. I learned that as much as I run and workout, I have no swimming skills.

But, there is value in conquering your fears. I am fearful of a lot with Parker and all my kids. What I learned was even though my heart was racing and so was my mind, "what happens if i get stung? what happens if I drown? worse, what happens if I die?" that as I continued to pray and repeat "God has not given me the spirit of fear, but of love, power, and a sound mind.." once I relaxed and completed the task it didn't seem so frightening. People always say the fear of the unknown is the worst. Once you have experienced something it doesn't seem so bad.

So, what is the point of all this? I guess it is a reminder for me, life was scary when we learned of Parker's dx and of course his heart surgery. Today while lots of things are unknown and still scary, I have learned that God's grace gets us through.

The fact that I posted pictures of me in a swimsuit is terrifying too, hoping everyone can see past that and the beauty of God's creation! XO

"Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” Matthew 11:29-30 (MSG)

CHASE!

2011-02-15T05:37:00.000-08:00

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!

2011-02-05T12:56:00.000-08:00

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!

2011-01-13T15:03:00.000-08:00

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

2011-01-02T15:06:00.000-08:00

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

2011-01-02T10:41:00.000-08:00

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!

2010-12-29T13:55:00.000-08:00

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!

2010-12-07T06:14:00.000-08:00

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

2010-11-23T05:17:00.000-08:00

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

2010-11-22T04:53:00.000-08:00

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."

congestion, congestion, congestion..

2010-11-09T05:22:00.001-08:00

well, it was bound to happen right? At 17 months, Parker finally got sick. I'm proud to say we've made it this far, but wishing we had made it further! Last week Mallory and I had pretty bad ragweed allergies (she had SNOT), I lost my voice, but I didn't think it was a cold...guess what..three nights ago I figured out maybe it WAS a cold and today I am SURE it is a cold. Parker is seriously congested and I am trying everything to get the snot OUT (who uses that word on a blog or in conversation? LOL). Went ahead and took him to the Dr yesterday to be sure it wasn't in his ears or lungs..verdict? He has a cold, lots of congestion, croup like cough, but ears and lungs are clear. What can we do? nothing really. So, we have been saline rinsing and suctioning to help ease the stuffy head. He sleeps better upright which means someone needs to hold him all night long. For kids under 2 there really aren't many options anymore since decongestants and such have been taken off the market for kids under 2 years. For kids with DS it is even more complex (where I might be tempted to half the dose of benadryl or something to ease the stuffiness) due to the SOD that happens with the presence of that extra 21st chromosome. Means no tylenol or antihistamenes. They contain gluthathione which is a big problem for kids with DS.
This is a great post that has lots of links to the research on why we shouldn't give these things to our kids. Most Drs aren't aware of them, so thought I'd share here too.

http://www.gotdownsyndrome.net/glutathione%26acetaminophen.html

I tried the homeopathic route too, but most of those say not for infants either. If anyone has a good solution send it my way...we've been doing to hot steamy shower, so if nothing else my skin might look younger, LOL. more importantly pray for a quick recovery. He's miserable (me too)!

Spectacularly SPOOKY!

2010-11-01T19:31:00.000-07:00

Next post will be a close to the 31 for 21, but for tonight...I must share the Halloween week...Parker sported his Halloween shirts all week...thank you Lil Sis Designs for the Batty tee, SOOO many compliments as always(forgive the food, most of these were taken after dinner and we are messy)! Parker playing "boo" or "peek" outside, fixing the trash bag (common problem in our house) or Taylor is teaching him to empty the trash at a young age..yes, his pants are wet since he dumped the cats food and water over and proceeded to bathe in it after trying to eat as much of it as he could... Sunday after church we went to the pumpkin patch to attempt pictures..lets just say I am very nervous about Sat's family picture this year..Sunday night Halloween..can I say I have the BEST husband around..who else would put on a Batman costume for his girls? Parker had to "warm up" to Batman. And my precious husband offered to let me stay home feet up, alone, with a glass of wine...in the end being with the family was way too tempting...these moments are fleeting as the kids grow up! Blessings to all!

Decade of Destiny

2010-10-27T05:21:00.000-07:00

Lately I've had some time to reflect, there have been some moments of significant frustration as of late. It has been clear in my postings. I recognize these periods for what they are, spiritual attack, disobedience, selfishness, call it what you like, but they are moments I'm not proud of. Don't get me wrong, we celebrate life at our house, we can see "the forest from the trees," but sometimes the earthly, fleshly warrior takes center stage and distracts me from the ultimate goal. We've learned that as much as we'd like to see the "roadmap" for Parker, only God knows the plans he holds for Parker (or any of us). We are reminded to live TODAY, because tomorrow isn't promised to any of us. Rick Warren's devotions last week were on the "decade of destiny." Love what he says about realizing that life is a test. And nothing is insignificant in life.

"Over your Decade of Destiny, you will be tested by God as he develops your character, faith, obedience, love, integrity, and loyalty.

Words like trials, temptations, refining, and testing occur more than 200 times in Scripture. God tested Abraham by asking him to offer his son Isaac. God tested Jacob when he had to work extra years to earn Rachel as his wife.

Adam and Eve failed their test in the Garden of Eden, and David failed a test from God on several occasions. But the Bible also gives us many examples of people who passed great tests, such as Joseph, Ruth, Esther, and Daniel.

Character is both developed and revealed by tests, and all of life is a test. You are always being tested. God constantly watches your response to people, problems, success, conflict, illness, disappointment, and even the weather! He even watches the simplest actions such as when you open a door for others, when you pick up a piece of trash, or when you're polite toward a clerk or waitress.

We don't know all the tests God will give you, but we can predict some of them, based on the Bible. You will be tested by major changes, by delayed promises, by impossible problems, by unanswered prayers, undeserved criticism, and even senseless tragedies. In my own life I have noticed that God tests my faith through problems, tests my hope by how I handle possessions, and tests my love through people.

A very important test is how you act when you can't feel God's presence in your life. Sometimes God intentionally draws back, and we don't sense his closeness. A king named Hezekiah experienced this test. The Bible says, "God withdrew from Hezekiah in order to test him and to see what was really in his heart." (2 Chronicles 32:31 NLT)

Hezekiah had enjoyed a close fellowship with God, but at a crucial point in his life God left him alone to test his character, to reveal a weakness, and to prepare him for more responsibility.

When you understand that life is a test, you realize that nothing is insignificant in your life. Even the smallest incident has significance for your character development. Every day is an important day, and every second is a growth opportunity to deepen your character, to demonstrate love, or to depend on God.

The good news is that God wants you to pass the tests of life, so he never allows them to be greater than the grace he gives you to handle them (1 Corinthians 10:13)."

Taylor is stealing the show for pictures this week. Cotillion Ball. Wow, where did the time go, my "baby boy" looks like such a young man. And a handsome one at that...no comments on my "bird mask" please :)

7 years, 17 months..

2010-10-24T05:18:00.000-07:00

Obviously I have failed the 31 for 21, but that is OK! :)

today's post is really more about celebrating Madeline than DS...her 7th birthday was the 22nd, Parker turned 17 months on the 23rd. So, two special kiddos with two special days! I am humbled by the joy all of my kids bring to our lives. God has richly blessed me with an amazing family and while these kids bring me to my knees daily, they remind me that children truly are a gift from God. We had a terrific party at the ice rink yesterday and I am struck by how much she looks like I did as a young skater(go check my FB page for old skating pics). The ponytail hair and even the face looks a bit like me! This morning they girls and Dad were up and out the door by 6:30am for a swim meet..never a dull moment at this house...the boys and I are about to head out too...

Going Batty!

2010-10-15T11:14:00.000-07:00

I have failed at my 31 for 21, haven't been able to keep up with the daily posts..work is busy as is daily life and that is a good thing. Today's post is just pictures...Parker in his PJ's early this am...still a bit sleepy, but not sleepy enough to leave the cat alone. He's kissing the cat in the last picture!
Shane is the best cat EVER, Parker loves him, but he's not gentle in the least bit. Shane just lets him tug away...Parker calls him "sitty" So cute!

Blood Work

2010-10-13T05:39:00.000-07:00

The annual blood work for children with DS seems to have quite the disconnect..the recommended blood work is a CBC and thyroid check annually although I actually had the DS clinic tell me that they wouldn't check Parker's CBC again until adolescence unless there was an issue(CBC is checked for leukemia). These people are the experts? Hmm.. Here is what I have learned is REALLY required. Chime in if I am missing something..

CBC with Differential
Tissue Transglutaminase Antibody
Ferritin, Serum
Homocysteine, plasma
Iron, serum
Selenium, serum
Thyroxine (T4) free
Thyroid peroxidase antibodyinc
Thyroid antithyroglobilin antibody
Thyroid-stimulating hormone (TSH), high sensitivity
Tri-Iodothyronine (T3)
Vitamin A, serum (protect from light)
Zinc, serum (zinc free tube and needle)
Vitamin D

I took Parker yesterday to have this blood work done. He's had CBC and thyroid twice this year, but last time in July I noticed TSH was rising(Dr said it was fine), so I added those back on the list. We already have an appointment in January to see the pedi endo regarding the thyroid, but you know me, can't leave well enough alone. I want to see where that thyroid is now. Make a note, this isn't for the faint of heart....this list is 9, yes, NINE, vials of blood. It took three different sticks to collect the blood and more than an hour. Parker cried at the initial sticks, but after that he chatted and made "sweet eyes" at the phlebotomist. Boy knows how to work the ladies already! She was ready to keep him and take him home with her. Another note to self, ALWAYS go to a lab that deals with kids on a regular basis. We've done blood work at labs close to home to save me driving...there is a clear difference using someone that has pedi experience. Even though it took a long time, it went MUCH smoother than the adult clinics and we took MUCH more blood than I've ever had drawn!

Internet Resources

2010-10-11T14:09:00.000-07:00

When we first learned of Parker's dx we did what most folks would do...we searched the internet...most of which leads to the depressing, outdated info, BUT we found some fantatic sites that I HIGHLY recommend to new parents. You'll be surprised, they aren't the National Down Syndrome Center or the local DS Chapter. Some of I have linked to in previous posts, but here is the "short list"

www.einstein-syndrome.com
Miriam has a fantastic letter here that I send everyone I meet to now..I wish I had someone give this to me when Parker was initially diagnosed..her top 15 things a new parent should know is terrific!

http://einstein-syndrome.com/2009/04/11/top-15-things-a-new-parent-should-know/

http://www.bcdsc.org/

http://sites.google.com/site/superdownsyndrome/

The face of Down syndrome

2010-10-09T17:54:00.000-07:00

the weekends are sacred around here..the weather could not be better...finally a break from the oppressive humidity..still in the 80's, but "fall" is in the air!

My heart bursts when I watch Parker with the kids..the love they have for him and vice versa...this afternoon the girls rode bikes in the culdesac and took turns riding with Parker in the wagon..no schedules, no activities this afternoon and best of all Dad is home. All is right in the world. No comments about the outfits..the girls had been in the pool, so fogive the mismatch :)

THIS is the face of Down syndrome..could it be more beautiful? I don't think so!

The Thyroid

2010-10-08T14:44:00.000-07:00

in a nutshell, it is everywhere and it affects everything! Thyroid disease plays a major role in just about every function in one's body. It is no different in the child with DS. In fact, hypothyroidism is a condition that is MORE common in children with Down syndrome. Consider these facts from Mary Shomon AKA the thyroid "guru"
http://thyroid.about.com/cs/testsforthyroid/ht/interpretresult.htm

"Hypothyroidism is typically diagnosed by a combination of blood tests (including TSH, Free T4, Free T3, and thyroid antibodies), clinical examination, and evaluation of the symptoms. The clinical exam looks for slowed reflexes, enlarged neck, puffiness in the face, swelling in the hands and feet, and other symptoms of hypothyroidism. Some key risk factors for hypothyroidism include a personal or family history or thyroid or autoimmune disease, recent pregnancy, female gender, and Down syndrome, among others. Symptoms and risk factors in addition to Down syndrome in infants include:
infant drinks soy formula
infant has family members with thyroid or autoimmune disorder
infant has puffy face or swollen tongue
infant has horse cry
infant has cold extreme ties
infant has mottled skin
infant has low muscle tone
infant is not eating well
infant has course hair that goes low on forehead
infant has large soft spot
infant has prolonged jaundice
infant has herniated bellybutton
infant is lethargic
infant sleeps most of time
infant seems tired even while awake
infant has persistent constipation
infant is bloated or full to the touch
infant has little to no growth

So, seems easy to address, right? Problem is most Dr's don't treat the thyroid if it falls within "normal" range. We parents don't ask for copies of labs so we can read them ourselves and do the research and ask questions. The "normal" range isn't normal and quite frankly the studies show when TSH is over 4 it should be treated.

Take the time to do the research and see a specialist. It is too important to take the lab at face value.

http://einstein-syndrome.com/2009/04/19/15-treat-the-thyroid/

http://einstein-syndrome.com/health_medical/thyroid__/

Probiotics

2010-10-07T05:33:00.000-07:00

and we aren't just talking about Activia folks...probiotics are ESSENTIAL for kids with Down syndrome. We didn't know this before Parker's surgery. By luck (really God's grace) I landed on this right after Parker's surgery and we had heavy doses of Probiotics started immediately after surgery. Antibiotics are necessary, but they create havoc on the gastrointestinal tract which in turn causes a host of issues. It will cause bacteria and yeast to thrive. Common medical practice is to give drugs when gastrointestinal issues arise, but the more natural and safer way is to use probiotics and enzymes. Parker wasn't have GI issues as many kids with DS do, but I am so glad we started probiotics when we did. As an aside, the rest of family started them too. One of our daughter's who has had chronic eczema (and we have seen every specialist know to man, tried every RX under the sun, you name it we tried it)..suddenly it went away. DUH, it was a yeast overgrowth manifesting itself in her skin. I shudder to think of all the money I wasted on a simple answer.

What are probiotics? The term comes from the Greek "for life." When injested these living microorganisms replenish the microflora in your intestinal tract. Even science embraces the use of probiotics. Here are some intersting facts from Dr. Mercola:
-About 80% of your immune system lives in your gastrointestinal tract
-500 different species of bacteria live inside of you
-about one hundred trillion bacteria live inside you - more than TEN TIMES the number of cells you have in your whole body

Here is a summary from one of my favorite internet resources. This group is an informed, armed, researched group of men and women. The site is top of my list on internet resoures for new parents (post to come another day)

http://einstein-syndrome.com/2009/05/13/10-focus-on-gut-health/

Probiotics
After dealing with serotonin, a second step is to provide healthy probiotic bacteria to populate the gut wall. Until the last century food preservation and storage involved extensive use of cultured foods. Sauerkraut used to be cultured. Cheese was made with bacteria. Apple cider was cultured into hard cider and vinegar. Every people in the world had ancient food preservation techniques which involved foods filled with friendly bacteria. When a new baby was given these native foods, the baby’s gut received its starter cultures for a lifetime of health.

Nowadays, our foods are sterile. Cheese, cider, sauerkraut and other traditionally cultured foods are pasteurized before sale. Unless we are intentional about it, friendly microbes may may be introduced late or never to our babies’ guts. If I had it to do over again, I would have begun giving my daughter probiotics, sprinkled on her tongue, from her first days of life.

The widespread use of antibiotics is also causing problems. Babies with DS can expect to receive multiple courses of antibiotics in the first years of life. These drugs are not specific; they kill both friendly and unfriendly bacteria. However, they do not kill yeast. This leaves the unfriendly yeast with no resistance to moving in and taking over.

The result of yeast overgrowth can be lesions along the wall of the colon. Through these lesions, partially digested food escapes into the bloodstream, leading to a host of illnesses and allergic reactions.

So, the second step to keeping the gut healthy in DS is to provide plenty of probiotic foods and supplements, and to limit the use of antibiotics. If you must use antibiotics, follow immediately with a course of probiotic supplementation

The EARS, the EARS, the EARS!!

2010-10-06T06:08:00.000-07:00

We knew that the ears were critical to speech and language, but were naive when the Drs told us the newborn hearing test was enough. The recommended schedule is annually (sometimes 2x's a year) which seems appropriate. What we learned at about 10 months is that kids with DS often have ear problems, but since they have a high pain tolerance they don't present with symptoms. I have met many a Mom that had no idea their child had ear infections! I have met several moms who kids had SIGNIFICANT hearing loss and they had no idea! Obviously this poses a problem on so many levels.. So, we started seeing the ENT every 2 WEEKS for tympanagrams. I realize many of you are saying "well, that is only good for that period of time," and you are correct, but by having such high frequency it gave us the ability to see what Parker's ears were doing and we did 6 months of that many trips. I am happy to report he has had no issues. It gives a great baseline for you and if nothing else peace of mind. We don't see the Dr each visit, but the audiologist and it isn't considered a "full co-pay" visit by insurance. Depending on your plan obviously, but we pay $50 for a specialist office visit, when we go for tymp. only we pay $20. Ask your pedi if he/she can perform the tympanagram as well. In our case the ENT is closer, so it is easier. If you are using an osteopath, they may be able to perform the test as well.

We learned that often what appears to be a problem with vision (eyes crossing, drifting away, inability to coverge properly, etc..) is usually FIRST and FOREMOST an ear issue! Many times we are quick to think that the kids need glasses or correction, but we should check ears first! We learned that the open mouth or mouth breathing can again often be contributed to an ear issue.

Be forewarned, the medical community will be quick to dismiss this, but like everything else, you have to be your child's advocate. It has too high a cost if you just take their advice at face value. Do your own research and get educated. In our book, speech and language is another top priority!
We will do everything we can to keep Parker's ears (and overall body health) as perfect as possible.

Here is an excellent article to read, one of many...

http://downsyndrome.nacd.org/health_issues_learning.php

Oral Motor, Oral Motor, Oral Motor!

2010-10-05T18:48:00.000-07:00

I realize it is almost 9pm on day 3 of my 31 day challenge..technically it still counts! We were in Dallas today for Parker's NACD eval. There and back in a day, WHEW!

Oral motor...CRITICAL! And don't let them tell you it isn't necessary until they "talk." We had several Drs (even the specialist at the local DS clinic tell us 2 years was early enough). We started at 4months and it ranks close to the top of "do this right away ". My Dr. didn't think it was necessary, but wrote the RX because he knew I wasn't going to back down. Find someone that will honor your request for the RX. Talk to them about the research and tell them politely you appreciate they don't think it is necessary, but you want the RX order written. People often ask, "what can you do with a baby?" But, there truly are things that are of benefit and sooner rather than later. We started with a series of about 5 exercises in the mouth and cheeks and have continued to add things over the months. Palatel stretches are important, you've heard the comment that kids with DS have high palates. Guess what they really don't and if you start soon enough you can help stretch and mold the area. We did lip rounding and stretching as well as bite and roll tubes as Parker got older. Oral motor helps prevent tongue protrusion and we learned how to prompt Parker's tongue back in proper resting place if he wanted to push it out. Contrary to what most think, you should not push it back in! That builds the muscle and can worsen the issue! We do oral motor at home at every diaper change and feeding. Parker never minded the stretches and always complied easily. We keep a box of gloves handy and use them when we stretch his mouth. I will admit it got interesting when he got more than one tooth, but we still get them done! Oral motor is different than speech therapy although some ST's do have the training.

Climbing is a new favorite activity..here is Parker tonight climbing couch and yesterday on the dog gate...SIGH! :)

Changing Minds Protocol/Make a donation!

2010-10-04T05:45:00.000-07:00

I realize many that read this will disagree and I respect those who feel differently about "changing" our kids that are born with DS. I struggled too when I first researched the protocol (not with the supplements, but the gingko gave me pause and the RX gave me more pause). Know that it took lots of prayer and conversation to get me to the place of comfort. BUT, I wish I had come to this place WAY sooner in my journey. I had to accept the brutal true that DS is a degenerative disease and that the very presence of that extra chromosome in every cell of their bodies reeks havoc. I'm just not comfortable letting that time bomb tick away. As far as "changing" his personality, I totally disagree. He is able to concentrate, make memories, and learn. Are we supposed to deny our kids that? I don't think so. I think we are called to help our children in any way possible. My goal is to give him freedom and independence. Here is what I know, if something could HELP your child, why would you deny them that? For example, Parker was born with a heart defect. Did we think twice about repairing it? Certainly not. Without repair he would have died at some point. Maybe it isn't so black or white, but here is another example...my oldest son needed braces. His teeth were not straight. So, are we to leave his teeth crooked? Just because God made him that way? I don't think so. We of course straightened his teeth! I know many will argue their kids are doing great (I felt the same), but ask yourself this..how many older children and adults with DS are doing well? I know there are about 10 mentioned all the time in the mainstream DS community, what happened to the other 300,000 or so? Here's food for thought, what not try it out and see what happens? You can always quit if it causes problems...

Please consider making a donation to help fund research. After all, it is Down syndrome awareness month!

http://www.changingmindsfoundation.org/golf_tournament.html

PS, pictures show, this is what happens when the girls are away...Parker is taken with the American Girl dolls :)

Neurodevelopmental Therapy

2010-10-03T11:32:00.000-07:00

ND Therapy...another thing to put in the "why didn't I know about this sooner?" camp..I didn't even HEAR about it until Parker was 8 months old. He was 10 months old by the time I applied to the program, had his initial evaluation, and we started his program. Yes, it is HARD work, it is time consuming, but we were already spending every waking hour working with Parker on "play," so this really isn't any different. Instead it is "productive play with a purpose." It isn't for the faint of heart, it takes, frequency, intensity, and duration to be successful. It takes organization and a commitment of time. It also takes faith. Faith when the results don't come automatically, faith when it seems like it is all for naught, but isn't that what the Bible teaches us? We are to live by faith, not by sight. There are days when I feel like giving up and quitting, but we continue to persevere and it is one of those things I think EVERY new parent should invest in. We chose NACD, National Association of Childhood Development. www.nacd.org

They have a proven track record of success not only with brain injured children, but "typical" kids as well. Check out their DS site and see for yourself. http://downsyndrome.nacd.org/index.php

We started private therapy at 4months with Parker. I demanded oral motor therapy even when I had no clue what I was doing and no one believed it was necessary until he was 2 (I kid you not and these were the so called "specialists"). We did OT too, but I never felt 100% that I had the right "homework" if you will. The oral motor I did had specific exercises for the mouth which I believe made a HUGE difference in Parker, but the OT was very unclear. NACD gave me specific items to address from the OT, ST, and PT realm. All very detailed and very specific. Again, can't stress enough how I believe this should be a part of every new parents regime. In an ideal world more private therapists are trained on these techniques, but ultimately the parents are responsible and they need to be educated about these therapies NOW rather than LATER.

We still do private therapy as well. We finally located the "specialists" here too, took us 4 months to get on their schedules, but we haven't looked back. They have over 25 years working with kids with DS. No, they aren't covered by insurance either, but it is an investment we are willing to make. Guess what? They have ND training too. Go figure.

Tumeric/Curcumin

2010-10-01T05:27:00.000-07:00

Day One of 31 day post...I have been documenting so much lately and making a "new Mom" handbook or maybe a better title would be "Things I wish I knew sooner.."

The facts are there, DS is a neurodegenerative disease. A dx of DS DOES mean at some point the presence of that extra 21st chromosome WILL appear and the results will lead to early alzheimer's. DO the research, ask your Dr., even the mainstream medical Drs agree. While no one knows when it will appear, there are things one can do from a nutritional supplementation. I recently learned about Tumeric/Curcumin and Parker is now on that supplement as well. Interestingly enough it might be of interest to the general population as well. Below is some info from Dr. Mercola. Check him out, he's a wealth of good info. By the way, he's not my only source... While I know that integrated medicine is in its infancy stages, I also know that Biblically we had these guidelines in the Old Testament. While there may not be 100% proof, the evidence is compelling enough. Besides, when it makes you feel better, what is the cost?

"..Meanwhile, turmeric appears to be highly protective against neurodegenerative diseases. In fact, in India levels of neurological diseases such as Alzheimer’s are very low, and studies have shown that curcumin can slow the progression of Alzheimer’s in mice. The compound has also proven capable of blocking the progression of multiple sclerosis.

Further, Professor Moolky Nagabhushan from the Loyola University Medical Center, Chicago, IL, who has been studying turmeric for the last 20 years, believes that turmeric can protect against harmful environmental chemicals, and in so doing protect against childhood leukemia. The research showed that curcumin in turmeric can:[7]

•Inhibit the toxicity of polycyclic aromatic hydrocarbons (PAHs) (cancer-causing chemicals in the environment)
•Inhibit radiation-induced chromosome damage
•Prevent the formation of harmful heterocyclic amines and nitroso compounds, which may result in the body when eating certain processed foods, such as processed meat products
•Irreversibly inhibit the multiplication of leukemia cells in a cell culture

Turmeric's volatile oils also have external anti-bacterial action. As such, they may help prevent bacterial wound infections and accelerate wound healing. Johnson & Johnson even sells a curcumin-containing Band-Aid in India!

And the therapeutic potential of turmeric and curcumin do not end there. Evidence suggests the spice may also be beneficial for:

•Cystic fibrosis
•Type 2 diabetes
•Crohn’s disease
•Psoriasis
•Rheumatoid arthritis

•Cataracts
•Gallstones
•Muscle regeneration
•Inflammatory bowel disease"

Too read the whole article...
http://articles.mercola.com/sites/articles/archive/2009/02/17/Super-Spice-Secrets-This-Miracle-Spice-Stops-Cancer-Alzheimers-and-Arthritis.aspx

31 for 21...It's Almost October!

2010-09-30T14:58:00.000-07:00

and this year I am ahead of the game (sort of)...October is National Down Syndrome Awareness month, so I am joining with my other DS bloggers..the goal is to post everyday in October...this should prove to be interesting seeing I can barely post once a week..not that I lack in things to say, just the time to say them these days..

Grab This Button

Commit to blogging in your blog everyday for the month of October (which is Down syndrome Awareness Month).

And then...um...blog in your blog everyday for the month of October!

You can choose to write about life with DS or...not. It's up to you. But if you at least mention the challenge and start writing EVERYDAY it's bound to go NOTICED. Personally, I find that I go back and forth, sometimes I write about DS because hey, it's a part of our life, and sometimes I don't, because hey, guess what? It's just a part of our life!

Here's step 4: Grab the button (by clicking the link that says "Grab this Button above") designed by the lovely RK so people will recognize that we're doing something here! Power in numbers, baby! The button''ll link back to this post and hopefully more people will sign up to participate in the challenge!

See you in October!

16 months, 9weeks

2010-09-23T05:27:00.000-07:00

nothing like blog silence after a post like that last one...sorry, friends, I was a bit beat down last week...this week has been much better! I heard Stephen Curtis Chapman's wife talking about her tragic situation and she said something that resonated with me...she said," I kept crying out to God, asking God "why," but finally realized that the world is full of suffering and he replied back "why not?" She said it became apparent that she was to be a good steward of the suffering. While I cannot imagine being a good steward after losing a child, I can say that I can be a steward and an advocate for my precious son (and all of my kids) even to those that may be unaware of the things he can do and the support available to help children with DS achieve their full potential. Not saying I won't have bad days, but I am committed to being a better steward!

Today Parker is 16 months old. We have come so far and I am painfully aware that he is growing up. He has lost that "baby" feel, is stretching to that toddler stage. He wants his independence and is quick to find it. He is crawling, climbing, and cruising everywhere. Last night he pulled a bowl off of my end table and glass shattered everywhere. Gone are the days where I can "run to the laundry room to start the wash.." He needs a constant eye close by. His favorite new thing is to stand on the windowsill and look outside. He is so cute in the window looking out, "talking" to the things outside. It is a whole new world for him and watching the excitement in his eyes as he discovers these new things fills me with pride and excitement. He also loves to crawl and slide down his slide in his room. He scoots his bottom to the edge and wildly slides down even if there is no one there to catch him. Fortunately I have many willing "catchers" as he wants to slide over and over again! He has cut 3 teeth in the last month. Two front ones are in and another coming in up top near the front two. I even think he is growing more hair, a girl can hope,right? I keep reminding myself that Madeline didn't have hair until she was 4... The girls gave him a "mohawk" after his bath the other day, ah, the fun we have with our little brother! :)

His scar is healing nicely, here we are 9 weeks post surgery. The "bump" is still there, but I couldn't get a good angle for those of you still asking me. Next time! This boy is hard to catch these days!

Honesty

2010-09-14T19:29:00.000-07:00

Honesty. It's the best policy. I was taught that all my life. We teach the kids the same thing. So, I will fess up, honestly, I have been struggling and I am beat down. Parker is making great strides, doing amazing things, having tremendous gains and impressing everyone around him. His therapists want to know what I am doing "differently." People continue to comment, "he's so alert, engaged, not missing a thing.."

I am truly grateful and know I should be dancing and jumping around praising the Lord for his goodness, but the enemy has my number and he's taking me for a spin.

I continue to be disgusted and disappointed with people that just dismiss kids and adults with DS. And we aren't just talking about "ignorant, uneducated folks.." Many physicians and educators (it appears many special ed teachers are the worst offenders)feel the same way. Their thought process of "they have DS, so they can't do that anyways" seems to permeate society. They refuse to acknowledge that yes, children with DS have metabolic issues that need addressed and that their thyroids and diets DO matter and affect cognitive function. They seem comfortable just telling parents, "well they have DS." A friend of mine is in a battle with the school system because they have removed her son completely from the middle school classroom. And, he is fully capable of learning. Educators want to modify and tell you to accept, not expect. That just doesn't work for me. We don't "accept" from our typical kids nor will we from Parker. Last time I checked "typical" kids with behavior and academic problems were not removed from the classroom. Seems to be quite the double standard. Problem is the more I talk to these parents with older kids the more I hear this comment. Time to start now researching the best place in America to live. I still believe that with work and effort, Parker can attend private school. I will continue to believe in that goal and make every effort to have him ready to "pass the tests." I can only hope and pray that the educators and administrators will be more open to this possibility than what I've experienced so far.

I now have enough knowledge on biochemistry and the genetic mutations and their affects on kids with DS to get an honorary degree. I have the bags under my eyes to prove it. I have come to terms with this reality and I've accepted we better address it fast. I've started his regime and I will say it makes a tremendous difference. I know this is a touchy subject, but I've done my research and I believe this information should be given to parents after receiving a diagnosis. It has hope and encouragement and the sooner you start the better off you are. I also understand the people that say, "not my baby..what if he's different..I will wait to see.." I was there too. I talked to enough people and did enough research and I'm not comfortable "waiting to see" because I know what will ultimately happen. Find some families with kids older than 5-6 and see what they say..then find the ones with teens and or older...you'll be convinced too.

Today I signed Parker up for "lists." Lists that I don't truly understand nor want to think about, but at a friend's urging I went ahead and did it since it takes up to 15 years to get approval. Parker is number 31,000 something on a list for assisted living. I probably would have broken down screaming had it not been so comical..woman on the phone asks me the following screening questions.." does he need help toileting himself, getting around, getting dressed?" Me..."yes, he's only 15 months old.." She.. "Does he read independently?" Me.. "well, no, as I mentioned he is only 15 months old.." OK, give me your info and I will add him to list...
Good thing I don't have to do that everyday. Add that experience to the list with open heart surgery. Don't want to have to go there.

We did receive one of those divine meetings Saturday that gave me a lift. The kids did a triathalon and I met a Mom whose 10 yr old daughter has DS. She was competiting in the tri. Amazing young lady, gifted swimmer and runner. All of you know how athletic and competitive I am..I grieve the "loss" of athletics for Parker and God showed up to tell me not to "accept," but to expect! Thank you!!!

So, forgive the rant. It is over. I am mad at myself for not being able to shake the enemy and his taunting. I write this honest post because I know many of my sisters traveling this journey feel these same things, maybe some of you feel like they can't be spoken. Far be it from me not to be honest. God is greater than all of this and has great plans for our lives and Parker's. Parker is such a gift and his new sense of humor and responsiveness quite funny. The irony of all of this is the things people say and assume about him because of his diagnosis are so wrong and so untrue at this point. Hoping people can see him through the right eyes and not assume. Guess part of our role in this journey is to help them see that. Guess he has the right Mom for that...one willing to tell you honestly what she thinks and passionately plead for what is right!

Matthew 11:28
"Come to me, all you who are weary and burdened, and I will give you rest."

Isaiah 40:31
"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

Parker crawling stairs

2010-09-07T05:34:00.000-07:00

6 weeks ago

2010-08-31T20:47:00.000-07:00

6 weeks ago today..I had a lot of fears...surprisingly (or not) I have even more today...I worry about the future for Parker, I worry about him walking or reaching other milestones, I worry about the therapies, I worry that I am not educated enough about the things to do or not do for a child with Down syndrome. I worry that the heart surgery was the "easy" part. I worry about his education, don't even get me started on his "adult" life..you guessed it I worry here too. BUT, we've had a mighty victory, Parker by God's grace, has a healed heart. I will not allow the enemy to steal that victory! I chose to celebrate God's mighty miracle!

Today we celebrate the victories, Parker is having some amazing growth and development the last few weeks...his latest..he can now climb three stairs unassisted (found that out the hard way..good thing I was close by). His new favorite trick is standing in his crib chewing the rail..nice to have that rite of passage! He is giving me his "who me?" look in this picture. Couldn't resist this picture with Mallory too, they melt my heart and he clearly adores her!

Jesus says the things that scare us the most are the things we should pray about. Pray mightily I am!

"Because Jesus "understands every weakness of ours" (Hebrews 4:15 CEV) the Bible says we can have "confidence, then, and approach God's throne, where there is grace. There we will receive mercy and find grace to help us just when we need it" (Hebrews 4:16 TEV).

Cease Striving!

2010-08-25T12:19:00.000-07:00

So, I have lots to say, but not enough time to say it all..an update is needed though, it has been too long...I had a tough week last week, a number of things were setting me off and my kids started school so adjusting to that routine is big enough! I had some moments where friends said things to me that caught me off guard about Parker and Satan got the best of me. These friends didn't mean to hurt my feelings, so please if you are reading this don't apologize! Just hit me that some people now view us as "that family" with the "special needs" child. One of my new friends so lovingly and wisely pulled my head up and said, "Lara, stop living for yourself and measuring your self by the worlds standards, remember we are here to live for Christ." She was so right...the plans I have for myself, my kids are just that..MY plans. I am guilty of forgetting that I am to be a "stranger here on earth" and my journey is to find what plans Christ has for me. OUCH, hate that lesson. I am the first to admit I am selfish, my family knows it and so does my husband. He loves me despite all my shortcomings and for that I am SO grateful!!! Finally my precious Children's Minister posted this verse. "Cease striving and know that I am God." Psalm 46:10. This week has been MUCH better!

Busy week! 5 weeks post surgery! Yesterday we had an ENT appointment, all good news again! Parker has amazing ears, praise God! I talked to the audiologist and decided to decrease the frequency of his visits since we have had all great results (he has been going monthly)..we will follow up in December with the Dr as well as the audiologist. If there are issues we will call and go in immediately. One less Dr visit means a LOT around here!

Monday we went back to PT, the gym is empty at that time and while he wasn't technically "fully" released we needed an "outing." I realize how pathetic that sounds, therapy an outing? Yikes! She was amazed at how he'd changed in 4 weeks. We are working mostly on climbing up stairs and turning around to slide down backwards into the ball pit. We start back OT next week. I'm excited to see her again, Parker is doing great with his self-feeding. Check out our video! Pictures are of his latest, pulling up to stand on everything, but he loves the shower door the most! He is trying to climb the stairs at home, so needless to say he requires constant "eyes" all the time these days.

Today we had our follow up with the cardiologist. Another fantastic report! He is 20 lbs, vitals, pulse ox, xrays all excellent. He is off Lasix now and in one more week we will have all restrictions removed. We will be able to lift him under arms again (YEAH) and she even said "go live your life." So, while we will be tempted to venture out we will probably sit tight for a few more weeks. He has no leakage in the valve and the heart is a normal size. No swelling, no fluid. We talked more about the "bump" and I feel more at peace with it. Still isn't my favorite thing to touch or feel thru shirt, but she assumed me it is a cosmetic issue. Can't do any harm to it. Parker was his usually charming self, everyone is always taken with him and he knows it. He "works it" and flirts with the ladies. Quite the ladies man! We will see her again in 6 months and from there annually! She asked if I ever believed we'd be here a year ago and how did I feel? Thankful, joyful, relieved, in disbelief? Hard question to answer!!!

On another note, I will get on my soapbox about putting sunscreen on your kids. Taylor had a mole removed last Friday and while it was non-cancerous, it did have abnormal cells. So, he will have surgery (in office, lidocain, so he won't be put under) to remove all borders and be sure it is completely "clean." It was on his neck which is not my favorite place for a scar, but we are getting pretty good at scar management in this house!! Add an annual visit to our list of things to do for him to be "sunsafe."

Lots more to say, but not enough time. Praising God for his goodness!

XO

Dishwasher!

2010-08-15T19:31:00.000-07:00

There is a new model in town...a rite of passage for all kids..Parker has now learned the art of "dishwashing." I remember how Taylor loved the dishwasher..one day I turned around and there he was sitting inside grabbing dirty utensils and licking them to his heart's content! I didn't allow Parker to go that far..he did crawl in and remove a plate, but I took him out quickly, I don't trust him on anything these days with height these days..can't risk a blow to the chest! He's taken to pulling up and climbing on everything. He heads straight for the stairs when set down in the living room and so far has only been able to "shimme" his way up to reach things on higher steps. He will pull to stand on the steps, but hasn't quite figured out how to climb them, but it seems to be right around the corner. I am in denial about stair gates. I finally had my stair rail fixed, oh well... He can't stand alone, without holding onto something, but he sure is trying. It makes him so mad when he tries and down he falls! The other new "favorite" is to play in the cat food. Parker loves picking up the cat food pieces and eating them - GROSS, but great fine motor work!!! Our cat eats food that is a small round circle, really small and hard to pick up!!! He's made a lot of improvement in this area..this week he's self-feeding watermelon, bananas, peas, mandarin oranges, and almost all of it makes it to his mouth! We've been working with his socks (holes cut out for forefinger and thumb only) during the day with cheerios and uncooked pasta as well as peg board puzzles and it seems to be helping! Still playing games with the straw, but we keep trying.

Parker is even more vocal than usual too. He's making all kinds of new sounds and has some new words, (banana, diaper) and lately he's been laughing when playing with his toys alone. It is the funniest thing to hear him in his play area laughing hysterically!

No Drs appointments this week, the following Wednesday we see the Cardiologist again. The incision is doing well, the bump...well, it certainly is a bump..I am told by the experienced Moms it goes away with time. With more chest muscle development and growth it protrudes less. Still trying to get my arms around that one, but am praising God for his goodness and trying not to stress about a "minor cosmetic issue" as my Cardiologist put it.

School starts tomorrow for the kids; to bed early for all!

Blessings!

3 weeks Post surgery

2010-08-10T06:29:00.000-07:00

Yesterday was Parker's post surgery appointment with his Pedi. An excellent report! He was amazed at how his heart sounded. And he said to go ahead and start treating the scar although surgery wound care says to wait 4 weeks... Mike and I put Parker in the tub this weekend, we were careful not to get the incision wet. It took two of us, Parker loves the water, loves to swim and splash everywhere. It will be good to get the "all clear" from the Cardio Dr too so we can go back to regular baths and swimming! His incision looks to be ready for treatment, but you know us..rule followers... He weighed 19lbs 6 ozs, so he's gained to what he was pre-surgery (+ a few ozs). A few more ounces and he will "graduate" to forward car riding, YEAH!! Parker has a "bump" on his chest which we are told is normal when they break the breastbone. Pray that it flattens as he heals. Doesn't bother him any, it isn't noticeable all the time, but when he arches his back it seems to "bump" a bit. He is pulling up everywhere. His favorite new thing to do is pull up from his stool to stand and he's able to pull himself up on the coffee table and is working on navigating around the table. This requires supervision since an unexpected topple could be quite problematic at this point.

Today is 3 weeks post-surgery. To say we are amazed would be an understatement. We are busy preparing for back to school. Middle school orientation is Thursday and meet the teacher for the girls too. School starts Monday!

The continued blessing of meals from friends and family has been such a gift. While we are back to a more "normal" routine, not having to run to the store to cook dinner has been appreciated more than we can convey. Thank you never seems enough.

Parker's next Cardio appt is August 25th. We continue to anticipate God's best!

The "Zipper"

2010-08-01T07:26:00.000-07:00

wow, serious neglect to the blog! Seriously, we have been enjoying being home!!!! I did a better job at the caringbridgepage last week, so sorry! So, Tuesday we got the stitches out and saw Parker's Cardiologist who I love. She said everything looks great. We see her again on the 25th of August. Parker sees his Pedi on August 9th. I have finally peeled all the steri strips off his incision and so here it is. Forgive me for those of you that don't want the graphic details, too late! For 1.5 weeks post surgery I am impressed. The scabs are gone for the most part and I think by the 9th I can start working on mederma or some home remedy to minimize the scar (leave me a comment on what works best please). Being home we forget about the surgery at times, but the scar will bring you back home to what he endured. The chest tube area is still scabbed, so I have bandaids on them for now. And Parker can only have sponge baths, so forgive the adhesive gunk everywhere too. I have the adhesive remover squares they gave me at hospital, but goo gone seems to be better. I will work on that next week, Parker doesn't like sitting still for me to pick the adhesive off. Imagine that!

Parker is on no meds, I quit the ibuprofin on Wednesday, just not necessary. He's had no issues with his schedule. Back on schedule for naps and bedtime. We are feeling much more comfortable with his activity and not so worried about him hurting himself. Interestingly enough he is pulling up on everything. He had started this before surgery, but now he is really interested in pulling up on things. He is cutting a tooth on the top front so he's biting everything too.

Two more weeks and the kids are back to school! The summer was quick with baseball and surgery. Hopefully this fall or holiday season we can take a late vacation. We shall see how things progress.

Parker and I are at home listening to live broadcast of church since we can't go in person. Our church has the most amazing worship and creative arts teams and the music is so inspiring. All of you know how music is so impactful to me. Parker has that same love for music! He is singing and dancing to the music. Such an appropriate song for today...

"And the cry of my heart is to bring you praise! My soul cries out! From the inside out Lord my soul cries out. Everlasting your light will shine when all else fades! And the cry of my heart is to bring you praise!"

Words aren't enough to express our gratefulness to each and everyone of you that have prayed and cared for our family during this time. One day when I can compose the words I will write more, but know that each one of you is a gift and a treasure!

Hug your family tight today!

Blessings!

HOME sweet HOME!

2010-07-24T14:14:00.000-07:00

Day 4 after open heart surgery...seriously, one would never know what this child just endured!! He was hysterical last night, chatting, crawling, and pulling up everywhere. I (Mom), am a nervous wreck! Not sure if it is just being on the other side of this journey, but the surgeon's discharge nurse scared me more about things we CAN'T do and what we don't WANT to happen (not that she thinks it will) more than the surgeon did about the surgery! First and foremost, NO child visitors (other than sibs and those are to keep a safe distance) and no public places for 6-8 weeks. She went on to make a list; church, store, Walmart, sporting events, birthday parties, school, family reunions, grocery store, mall, etc..basically full on home quarantee. She said one doesn't want that newly reparied heart to be compromised by any infection. We are to report back if any signs of fever, feeding problems, illess, fatigue, pain, redness, ooze, or drainage from incision (more about that another day), increased work of breathing, or chest pain. Then she told us that he needs to be in the car seat strapped correctly in case we have a car accident on the way home. WHEW! We are to keep the incision from getting wet (seems like a no brainer), but that means no spillage from feeding and even his own drool, not normally an issue, but as luck would have it he seems to be acting like he's cutting tooth! So, he wears a bib at all times but sleeping now. The nurse told us we are to "scoop" him, not pick him up under the arms, but that he can do what he wants physically. Well, let's just say he isn't any different than he was Monday! We thought he might be a bit cautious, but not a bit. He is crawling and pulling up on everything. I dreamt all night about his chest having some weird injury from all of this movement. I am hovering like never before. The only real problem would be trauma to the chest like falling on something (like coffee table or hard toy) while playing. We worked so hard to gain these skills and I was so afraid he'd forget them, but now I feel myself GASP everytime he does them! The nurse said kids know what they can do and won't do what hurts.

Many have asked what kind of pain meds he is on, you will be amazed to know only infant ibuprofin 2x's daily. amazing, huh?

Mike's post was so right, being home and seeing the kids can't be put into words. It was short lived with the kids; Mike, Taylor, and Mallory left for Tyler yesterday afternoon. You may recall Taylor's baseball team advanced to state the Sunday before surgery. State is this weekend. I almost cried hugging Taylor yesterday. It hurts my heart not to be there for him and I missed all of the sectionals games too. I've missed games before, but none so important as this. I know he understands, but nothing makes me prouder when he has a great hit or play and he looks to me in the stands and smiles from ear to ear. I am hoping someone will have their camera there and capture a few Kodak moments for me. Madeline spent the night at Grandma's and she and Grandpa left this morning for Tyler. So, a quiet house, just Parker and I. While I miss them terribly it probably is best to have the weekend to rest without them. I can rest and focus on Parker without feeling guilty for neglecting the other kids. I'm not comfortable leaving Parker to play alone or with the other kids in case an "accident" were to happen. Mallory is notorious for picking Parker up and I've had the "talk" about the importance of this now. One of the other rules on the "list" from the surgeon is "Supervise play with other children AT ALL TIMES." Good thing school starts in a few weeks, Grandma and I are going to be doing a lot of sitting on the floor!

We see the Cardiologist in 2 weeks and his Pediatrician too. But, the echos and other tests at hospital show a perfect repair. No leakage from the valve which is truly amazing! Dr. Fraser has an amazing gift
and he is passionate about helping children. We know that his hands were guided by the Almighty physician. I don't think anyone truly can understand that statement unless you've walked in our shoes.
My prayer is those of you reading don't ever have to understand what I mean, but I also know that if you do, "nothing is impossible with God."

I added some new pictures from the hospital on discharge day and the ride home as well as from this morning.

GO RED RAIDERS! Game time 8pm. Taylor, Mom loves you and so does Parker! Go big brother!!! XO

Discharge Orders!!!!!

2010-07-23T08:21:00.001-07:00

Rejoicing, rejoicing, rejoicing!!! 3 wet diapers later and we have DISCHARGE orders!! They said we will be out by noon.So, 72 hours after open heart surgery and we are going HOME! Makes me tear up thinking about it! I'm not sure I've ever asked anyone to pray for pee before, but I know God hears even the littlest of prayers! I am one tired Momma, up all night (I know Mike posted they start early, but he slept thru most of the night and missed all the fun) syringe feeding Parker water and expressed breast milk is not an easy process in addition to his normal feedings. I have a permanent cramp in my back, neck, and my biceps (despite the lack of Jillian Michaels) feel exhausted. The report on Parker is fantastic, echo shows NO leakage of the valve, CBC, thyroid and all other labs "perfect" (Drs words), as were xray. Parker has already started rolling over to tummy and pushed to sit (did it at 5am in bed and I about had a heart attack waiting for his chest to explode or him to scream in pain) so he is physically gaining his strength quickly. He is only on Motrin every 6 hours for pain.We will be housebound for some time and while we would love everyone to come and see us we will still be on "germ patrol." We need to stay illness free. Parker has an amazing immune system, but continue to pray for his strength. Add a prayer for our house as Madeline has had a low grade fever for the past few days. Grandma has bleached and scrubbed to kill and germs.More later, but for now a picture of him eating his cereal this am...

Friday Morning

2010-07-23T05:08:00.000-07:00

Please pray for PEE.....We are so close to Parker going home and the last thing they need ot see is that he can pass regular bowel movements. The drugs required stopped last night and he needs to pass these through his system. He is so much more like his normal self this morning, so that is a realy encouraging sign.

Thye wake you up so early here - 4:30am. So I figured to tkae advantage and post an update. I went ot the house and saw the other kids for an hour or so - better than an energy drink. I wish Lara could get a dose of this also. Sleep is at a premium right now and our hope is Parker can get released today.

He is progressing so well. We just need that fully saturated diaper. See pics----Thanks for all of your prayers!

Evening Two

2010-07-21T20:20:00.000-07:00

I snuck out to Fannin while Lara and Parker slept to get some "real air". The Med Center really does close down after 8pm - even the smokers are gone. i just had to get out for a while.

I have a funny story to tell - Parker had to take some oral medicine tonight and the nurse held him for a moment -mistake....He put it right back down her shirt. So, while I was leaving I heard some of the other nurses ribbing our nurse about having to change clothes.......

Parker is doing great.....almost so well that Lara and I feel strange. We really do feel the Lord's touch on Parker. He is such a trooper. We appreciate everyone's prayers and all of the help we are getting. By no means are we "out of the woods", but Parker is meeting all of the milestones in very quick order.

I would give all the praise to God in what has transpired in the last 36hours. It seems like a week, but it has not even been 2 full days. Hours seem to creep by inside the hospital.

The nurses are used to picking these babies up, for us it is like holding a glass doll. We are senstive to the littliest of things and are so worried about "tangling the tubes". We'll get used to it in the next few days. We need a little Grandma MA touch also - Lara's Mom. She is covering the home front along with Aunt Dorothy and Grandpa Rich.

We ask for continued prayer for a couple of things:
First, that the chest tube comes out tomorrow - a BIG milestone - means we go home 24 hrs later. Secondly, Maddie has a fever and that she gets better by the time we arrive back home.
Third, safe travels for Uncle Matt - he left today. It sure was nice seeing him and having him here for a few days. Lastly, that Mom and Dad take whatever slivers/shifts they can and get some restful/peaceful sleep.

Good night and God Bless - we hope all is well with you.

Day 2

2010-07-21T09:30:00.000-07:00

Wow!!! Mom and Dad got some sleep at the hotel last night - per our the staff's orders - and we got back up to ICU around 6:30 am. To our amazement, a couple of tubes were gone. Then, as the morning progressed, a couple of more tubes went away. Then, we heard rumblings of moving later to 15 (15th floor - GOOD). Then, Lara got to breast feed and Parker became much more lucid......

It is now 11:30am and we are in our own room on 15th floor. The two chest tubes are all that is left and Parker is breast feeding for the 2nd time. Can I say, AMEN..........There is talk that tubes could come out tomorrow or Thursday. Discharge, provided no setbacks, is usually 24hrs later. Friday IS a possibility!

Pictures (less graphic for those that I emailed directly last night) will be posted later today. EVERYTHING at this point is good news. Off to hug my boy......

Last Post Surgery Day!

2010-07-20T19:26:00.000-07:00

last update for tonight..Parker's breathing tube and NG tube are gone. He is sleeping now, intermittent periods of waking, just had a good one while another NICU baby was crying..even got a smile! They may give him some clear fluids tonight and hopefully we can hold him and i can feed him in the late morning. Things look positive to move to the 15th floor early afternoon, so pray for an uneventful night and no complications. Mike and I are going to get soem rest. This has been a marathon day and tomorrow we need some sleep. The prayers have been precious; we certainly feel God's loving embrace! Two pictures from today, one from right before they took him back and one tonight. The Drs told us how loving he was today in prepartion for surgery, lots of hugs, cuddles, and sweetness. They said they wished they had asked us if they could take pictures, apparently they don't get a lot of hugs..go figure!

Trusting and thanking God for his goodness!

Parker's Day -Praise God!!!

2010-07-20T10:06:00.000-07:00

We just had our 3rd consult - this time with the Surgeon. Parker is out and being prep'd for CVICU and for us to see him (about 1 more hr!!!). Dr. Fraser said no surprises and everything went according to plan. He actually had a smaller second hole they repaired also.

We still have some critical milestones for Parker to overcome in the next 24-48 hours - breathing on his own, all vital organs and brain functioning properly, no bleeding, and of course no infections. Thanks for everyone's prayers - I cannot describe the warmth and comfort we all felt today. Not to say that MY heart did not jump every time the buzzer went off.

Once we get to see our little guy we will update again. Praise the Lord!

Parker's Day V2.1

2010-07-20T09:13:00.001-07:00

Second update...all going well, no problems at all, mitral valve replaced, only surprise was instead of two small ASD holes one large GAPING hole. Doesn't change anything, just affirmation that this WAS the right thing for Parker. Fraser is finishing patching the hole, should be done in 30-45 minutes. Next update at noon. We are all well, grateful to God for his goodness!

Parker's Day V2

2010-07-20T07:19:00.000-07:00

1st Consultation went well. Font Party of 6 your table is now ready.........

As Amy, our Physician's Asst. stated, boring is good and Parker has done great.

We are 10 minutes from incision time. I will keep updates posted.

Here's pic from this morning. Font Clan is keeping the waiting room lively to say the least.

Parker's Day V1 7:45am

2010-07-20T05:45:00.000-07:00

Parker is currently in pre-op. Mom, Dad, and Uncle Matt had the heart-breaking experience of leaving our Parker with the surgeons to go "play airplanes". Beleive it or not, pre-op takes about 1.5 to 2.0 hours. We will be gettign updates every 1.5 to 2.0 hours - wireless is good - so I will try to do my best to keep the site updated (might not be as inspiring as Lara - but I will try to introduce some of oyu to my wit!).

I am exhausted - for the those following - Taylor's All-Star team won last night and will be headed to Tyler for State this weekend. For the boys, this was a great mental diversion. What a special experience for the boys!

I have the "pager" next to me on the table. It is essentially the same as what you get at the restaurant - which I will never look at the same way again. We are all wearing Parker's Prayer Team shirts - a big hit the hospital staff. Lara really did a great job with all of this stuff - might have overpacked - but a great job nonetheless.

Thanks everyone for your prayers. Please lift Parker up in the next few critical hours. Stay tuned for more updates

Pre Surgery Update

2010-07-19T14:34:00.000-07:00

Today was the 6 hour marathon testing at TCH. Parker was a champ, endured all the test with his charm and didn't fuss much even when they needed to do a second blood draw. For some reason we never seem to get the orders right for Parker and blood draws..last time we had to go back a week later since they didn't draw enough blood. Parker had lots of fun pulling the EKG stickies off, that boy is in to everything! After being there all day, the nurse said there was a chance we'd be rescheduled, WHAT?! They have several sick babies that the perfusionists are tending too, so if they don't get well, no surgery for us. The Dr's office did call a little while ago to say we were "a go, barring any unforseen issues.." so please pray these babies get better and we go forward. Pray for the surgical team, Dr. Fraser, Dr. Mossad and anyone else that will be handling our precious boy tomorrow. Pray that there are no complications, that it is an uncomplicated repair, and that Mike and I get a few hours sleep tonight. The boys are in Huffman playing their last game for Sectionals. The weather is "iffy," so add a prayer that the rain holds out just a few hours more! We report to the hospital at 6am tomorrow, surgery starts at 7am. Not sure when I will get a chance to update here, but check our caringbridgepage for updates. www.caringbridge.org/visit/parkerfont

Blessings!!! Looking forward to a healed heart!!!

Parker's Prayer Partner

2010-07-17T17:34:00.000-07:00

I finished the shirts for us to wear to the hospital (thanks E! No Greater Gift for such a great idea) and the kids thought they were so cool! The girls wore them today to their tumbling lesson. Taylor wore his all day too. Isn't it funny that the little things can be so impactful? They came out great and I know they will be a constant reminder that God truly has a purpose and a plan for Parker and all of this! I have his other scriptures printed with the same picture for his crib in CVICU.."be strong and courageous.." Mike laughed when he saw me with the iron, said, "now you know how to iron!" Not quite honey..I'll leave that task to you, Grandma, or the cleaners! The baseball boys won their first sectional game last night 17-5, they are in Huffman now, but looks like tonight will be rained out. Never a dull moment around here!

Be Strong and Courageous!

2010-07-14T05:14:00.000-07:00

We are less than a week away from surgery! As we prepare mentally and physically this verse continues to minister to our souls. Joshua 1:9 " have I not commanded you? Be strong and courageous; do not be terrified; do not be discouraged for the Lord your God will be with you wherever you go." This verse will be taped on Parker's bed in the CICU as a visual reminder for all of us! Courage is facing difficulties and obstacles, knowing God has promised to be with you. Joshua could move into the land with strength and courage, focusing not on the obstacles, but on God, who is completely trustworthy. We are moving into surgery peaceful, not focusing on the obstacles, but on God who is completely trustworthy!

Many have asked how are kids are managing...we are filled with thanksgiving and praise, they are all confident and not afraid. So many of you reminded us that kids don't have the same "hangups" as adults, boy, were you all correct...so far the biggest questions we received are "can I borrow Parker's fan from his room when he is in the hospital?" Uncle Matt and Aunt Dorothy are coming too, so the excitement of their arrival outweighs anything else. Love how God gives even the smallest gifts!

A few pictures of Mallory's favorite playtime activity with Parker...giving him a "haircut" before bed...

God is real, no matter how you feel

2010-07-08T07:10:00.000-07:00

Thank you Rick Warren for letting the Holy Spirit speak through you to me..

Isaiah 8:17 " The Lord has hidden himself from his people, but I trust him and place my hope in him."

"It is easy to worship God when things are going great in your life-when he has provided food, friends, family, health, and happy situations. But circumstances are not always pleasant. How do you do when God seems a million miles away?

The deepest level of worship is praising God in spite of pain, thanking God during a trial, trusting him when tempted, surrendering while suffering, and loving him when he seems distant.

Friendships are often tested by separation and silence; you are divided by physical distance or you are unable to talk. In your friendship with God, you won't always feel close to him.

Phillip Yancey has wisely noted, "any relationship involves times of closeness and times of distance, and in a relationship with God, no matter how intimate, the pendulum will swing from one side to the other." (Reaching for the Invisible God; Grand Rapids: Zondervan, 2000, 242)

That's when worship gets difficult.

To mature your friendship, God will test it with periods of seeming separation-times when it feels as if he has abandoned or forgotten you. God feels a million miles away. St. John of the Cross referred to these days of spiritual dryness, doubt, and estrangement from God as "the dark night of the soul." Henri Nouwen called them the "ministry of absence." A.W. Tozer called them the "ministry of the night." Others refer to the "winter of the heart."

Besides Jesus, David probably had the closest friendship with God of anyone. God took pleasure in calling him a "man after my own heart." (1 Samuel 13:14; Acts 13:22)

Yet David frequently complained of God's apparent absence:

*"Lord, why are you standing aloof and far away? Why do you hide when I need you the most?" (Psalm 10:1, LB)

*"Why have you forsaken me?Why do you remain so distant?Why do you ignore my cries for help?" (Psalm 22:1 NLT)

*"Why have you abandoned me?"(Psalm 43:2,TEV)

Of course, God hadn't really left David, and he doesn't leave you. He has promised repeatedly, "I will never leave you nor forsake you." (Det 31:8;Psalm 37:28; John 14:16-18;Hebrews 13:5)

New Skill!

2010-07-06T08:54:00.000-07:00

the 4th was a busy weekend! I noticed on Saturday that Parker was sitting in the living room and I asked Taylor, "did he sit up by himself?" "Yes, mom, he does that.." Hmmm...so then after nap when I came upstairs to get him, he was sitting!!! Over and over this weekend he went from sit, to crawl, to sit...YEAH! I recognize this is a small step, but so exciting! And then yesterday he was standing in the crib! He's been trying to pull up on things, but from his stomach using his arms only to pull, so my guess is now only a matter of time before stair gates need to go back up. So, here's a question...we started using kinesiology tape on his abs at the recommendation of his PT (I wore it on my biceps for a day to see if I could "feel" it). All of a sudden he is using his legs to crawl and the pushing up to sit happened! Probably a fluke deal, but maybe there is something to the psychology of the kinesiology tape! That and the NACD crawl boot camp, the PT/OT and constant practice maybe...If nothing else, he is in good company..the Olympians use it, LOL..forgive the "30 day shred" workout tape...I have to get my workouts in, Parker and I love that Jillian Michaels :)

Some pictures from the 4th..a great long weekend!!! I know Taylor seems absent in the pics, he is usually at baseball, so pics with him these days are few and far between. Mallory is refusing to smile, she is about to lose her top tooth, wish it would come out already! Tomorrow we have an ortho appointment..maybe he will "help" it come out, she won't let me touch it!

Baseball and Birthday Fun

2010-06-27T19:05:00.000-07:00

Mike's birthday was Friday..also the night of the District Champ playoff game for Taylor's team. It was a great night, the boys clinched the title, celebrations all around! Now 3 more weeks of practice and they advance to Sectional play in Huffman starting July 16th. Guess God wants us to be distracted...play if they win all games doesn't end until the night of the 19th..night before surgery...and Huffman is far enough way that the boys will have to stay out of town for the weekend...it was a perfect gift for Mike and Taylor..they have been working so hard!

So, the one night out for Mike and I turned into family night out (the girls are missing their Dad terribly) and "Birthday Fun" at home. So cute, the girls made stations for us to rotate to for the birthday..hopscotch, cheer, swimming, dance, and eating cake..the house looked like a tornado went off, but what else is new? Mallory was in a cake decorating camp last week and made a hamburger cake for Dad, but it was too pretty to eat, so we had ice cream cake! Tonight was dinner at home on the grill, I miss the easy Sunday nights as a family. It was a great weekend for all!

Blessings!

Lara

Just call me ... Speedy..

2010-06-23T11:17:00.000-07:00

well, we've moved from indifferent to highly motivated I'd say. it doesn't take much (or any) coaxing these days. Parker is on the move, still commando, but notice the legs are up, here's hoping all 4's is right behind. Note to self...the underbed box storing all the scrapbooks supplies for kids baby books should be organized and stored better before laying on floor to take video...and yes, I know treadmills are off limits for babies :)

Baseball, Baseball, and More Baseball!

2010-06-21T20:21:00.000-07:00

The last few days have been all about baseball and swimming (what else is new you ask?) Taylor's team is in the heat of All Star play. We are 3-0, playing again tomorrow night. The Red Raiders fan club is happy to support the team..even if the littlest team member does so from home (or when he's snuck out by his Dad when his unsuspecting Mom is at home resting...) So, for all you baseball fans that got a quick glance at my boy...thank you for looking from a far :)

Yesterday was the beginning of 30 day countdown...I find myself at night thinking of what that first evening will be like...knowing all I will want to do is hold my baby in my arms...my prayer (among a million other things) is he will move from ICU quickly so I can hold him close. I'm practicing stroking his arms and face pretending he is in recovery "mode" he seems to like it, but I know he prefers the neck snuggle!! He knows "hug" and when prompted he is happy to oblige. I remind myself, only a moment in time, God will be holding him close when we can't!

Did I metion Parker likes to pull hair and hairbows? He and Madeline have such fun together. She can get the biggest belly laughs out of Parker...does one good to hear them play..even the worst day melts away when you watch the two of them together laughing and screaming back and forth at each other!

Just another day

2010-06-17T20:08:00.000-07:00

just another day of crawling boot camp at our house...in between therapy, running siblings back and forth to camp, swim practice and baseball we cross crawl 40, yes, 40 times a day! We all have tougher knees than we used to..don't be surprised if you come visit and we are all down on all fours like animals! This week we talked to the nutritionist and guess what? Our mostly healthy eating still needs some major modifications. I am now more familiar with goat's milk, seeds (hemp, flax, pumpkin, you name it..) than I ever thought possible. I am now on the search for a vitamix and a champion juicer. Children with DS are prone to celiac disease, thyroid issues, and a host of other vitamin deficiencies, so we are committed to food that makes Parker "fit for life." It does make a difference, dairy despite doing a number in the intestinal track can thicken mucus secretions which in turn causes ear issues and/or worse..articulation issues for speech. I never was a big fan of cow's milk anyways. Good thing my other kids aren't big milk drinkers, LOL. The goat's milk is an acquired taste. I need more hours in the day to spend time researching all this stuff, forgive me if your call or email goes unanswered, keeping up is becoming a difficult task these days! We have started the countdown for surgery, so Parker is sequestered (as best we can) and quarantine has begun. The thought of postponing any longer(as much as I want to forget the whole thing) brings me to the brink of a nervous breakdown... On a high note, Taylor's All Star team won their first game, 12-0. Go Red Raiders!

Pull UP!

2010-06-12T07:53:00.001-07:00

I am in the middle of cleaning clothes out of kid's closets (we all know this is my weakness) to start my ebay listings (do I really have time for this?) and Parker was helping me playing with his toys. We practice pulling up and playing with toys while kneeling. Parker has always been good with bearing weight on his legs and actually enjoys standing. His issue is his abs/obliques (isn't it for all of us?), not enough core stabilization I suppose. I just happened to have my camera handy and he pulled up on my storage box! he actually grabbed the toy and stood for a minute. He clapped his hands and toppled over, LOL. So funny to watch him try to untangle the legs! He is actually standing on his own in the pic holding the keys!

Yesterday

2010-06-11T06:18:00.000-07:00

was an anniversary of sorts..one year ago, on June 10th(one day after our oldest son's birthday) we got the news that Parker did indeed have DS. Yesterday didn't comsume me, it was busy (what else is new?) and while I thought about the year throughout the day I felt a sense of peace. Very different than I felt last year. Not a single tear was shed. A major improvement. I still have fears. Lately my fear is that this last year was the easiest (how can that be possible?) and that now things get more difficult. I find myself studying people as we are out in public. I wonder, "do they know?" when they comment on Parker and how precious he is..will they start to treat us "differently" when he gets older and his DS is more obvious? What I keep coming back to is that God is faithful and God has a plan. I am learning that people will watch our reactions and based on our responses they will act accordingly. I know there will be up days and down days, but please remind me of that when I fall short and wallow in self-pity. Or as I say to a friend, please "kick my butt" when the pity party starts. Mike and I will continue to praise God for the gift of Parker's life, celebrate his life, and enjoy the journey, looking for the things that God is revealing to us in Parker's life!

Blessings!

Lara

Success!

2010-06-09T08:15:00.000-07:00

FINALLY some progress!! This is video from Saturday, I waited to publish in case it was a "fluke", but now Parker will creep/crawl across the floor. Still working on all 4's crawling, but thankful for this milestone! Forgive the cheesy voice...love the faces and grunts he makes working HARD! I credit this accomplishment to NACD crawl boot camp, a fantastic new OT, a dedicated Grandma that works Parker out when I can't stand to do it "one more time" and most importantly LOTS of prayer!

ETA: for some reason blogger doesn't like my video..let's try this again with a shorter clip. Forgive the messy house and the ironing :)

Baseball Boys, Rock Star Girl & Surgery Update

2010-05-31T07:26:00.000-07:00

This weekend was our annual Memorial Day Madness tournament (and a swim meet). 4 days in 100+ degree weather, YIKES! And summer isn't even here yet! A bonus picture of Mallory from the Taylor Swift concert too...

We heard back from the Dr. and after extensive research and discussion with our surgeon the recommendation is to go forward with open heart surgery on July 20th. The bottom line ..the issues are more related to the ASD than they are to the common valve. Rhythm and lung issues can become rate-limiting factors for his lifespan if we leave even a very minor degree of dilation of his right heart (specifically related to the ASD). Since it needs to be fixed, there's no point in waiting until he's older. It's much easier on him now in terms of apprehension, fear and recovery. Mike and I are at peace with the decision, so we will proceed and know God has a perfect plan. Please don’t misunderstand that we aren’t afraid (we are), but there is comfort in having a definitive decision if that makes sense. Time to close this chapter of our life.

We will talk to the kids when things quiet down, so please remember they don’t know. We love seeing all of you at church, school, baseball, swimming and everywhere and know that you all care and love us very much and want to know more, but please temper that with the fact that our kids aren’t aware at this point.

At this point we know July 19th we go to TCH for a morning full of tests, then go home to sleep (yeah!) and arrive at 6am for surgery. Hospital stay is approximately 7 days. ICU 2-3 days. Now, to keep Parker healthy becomes out top priority. We know Dr. Fraser is militant about his patient’s health and will not proceed with the hint of illness. So, please stock up on hand sanitizer and by early June we will “hunker down” to keep germs at bay (best we can).

Please pray for Mike and I as we prepare for this “event” and that our faith is renewed daily. Pray that the kids will be unaffected and not afraid. They will know that God is with us at ALL times as we always pray. Pray that our faith as a family will grow and that we can be witnesses to others as we travel this path and God will be glorified!

Psalm 28:7

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

Parker's Purpose

Race for the Extraordinary!

Have You seen this?

Happy New Year 2012!

Merry Christmas!

Parker's Heroes

$800

Action Shots

Wordless Wednesday..sort of..

Support DS treatment and be entered to win a trip to Costa Rica!!

Jon's worms...

31 for 21 - Day 1..and no, I won't make 31 posts...

Goodbye Summer, Hello Fall!

World Experts Meet in Cambridge to Discuss Treatments for Down Syndrome

Parker's First day of School!

DSRTF Piece - 30 Minutes if you love someone with Down syndrome

TAKE ACTION! CALL/EMAIL YOUR MEMBERS OF CONGRESS TO COSPONSOR THE "21 ACT" PACKAGE

Search for A Cure

One Year Ago Today..

Summer!

Ds and Alzheimers

Funny Faces..

Happy Birthday Parker

Birthday Boy!! 2 years!

Sleep Study Night

Has your child had a sleep study??

Easter! Picture Overload!

A Birthday Wish

My Montage 4/8/11 at OneTrueMedia.com

Slow but steady wins the race

more steps.....

Baby Steps

No wonder the days seem so short..

Curcumin

conquering your fears

CHASE!

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

Steps!

CALL TO ACTION

You Need God's Power to Change

Christmas!

A New York State of Mind!

18 months

Littlest Heroes Project/Inspiration Thru Art

congestion, congestion, congestion..

Spectacularly SPOOKY!

Decade of Destiny

7 years, 17 months..

Going Batty!

Blood Work

Internet Resources

The face of Down syndrome

The Thyroid

Probiotics

The EARS, the EARS, the EARS!!

Oral Motor, Oral Motor, Oral Motor!

Changing Minds Protocol/Make a donation!

Neurodevelopmental Therapy

Recommended Reading

Tumeric/Curcumin

31 for 21...It's Almost October!

16 months, 9weeks

Honesty

Parker crawling stairs

6 weeks ago

Cease Striving!

Dishwasher!

3 weeks Post surgery

The "Zipper"

HOME sweet HOME!

Discharge Orders!!!!!

Friday Morning

Evening Two

Day 2

Last Post Surgery Day!

Parker's Day -Praise God!!!

Parker's Day V2.1

Parker's Day V2

Parker's Day V1 7:45am

Pre Surgery Update