Saturday, June 6, 2009

Countdown--15 days to go


I was completely ready for Tucker to come home. The room, was a walk-in closet converted into a perfect nursey, tucked inside our bedroom. It was painted a golden yellow with navy blue baseball bedding. There were tubs of clothes just waiting for him to be dressed in. My mom and I did some garage sale shopping, thrift stores and clarence shopping before he came. Needlesstosay there were lots of clothes, all in tubs, all marked with the sizes....just ready to be worn.

His "nursery" was 5 steps from our bed. It held his bed, dresser, diapers and anything you could shove under the crib. It was soooo nice to have him in our room, yet something that we could call his. It was a perfect solution to not enough room and being within "ear" distance for anything we needed to do.....which back then was feeds via NG tube every 4 hours. Man that seems so long ago.....

Friday, June 5, 2009

The countdown....16 days to go

The only requirement I asked of Tucker while he was in the womb was to make sure he screamed, very loudly when he made his entrance into this world. I would rub my belly and remind him of his one duty…..let mommy know you are OK, make sure you use those lungs…give me a good cry.

When I went into labor, Chiefs opening day on Sept 11, 2005….we were watching the ball game between contractions. Everyone in my family was in the room; my Grandmother from New York was in town, nieces, nephews….everyone was there to support us and our journey with Tucker.
I can remember everyone being scattered when it was finally time to push…Tucker’s team of doctors coming in and the hush that came over them standing in the corner waiting for the delivery.

I got to hold Tucker twice before they rushed him out of the room and into the NICU for observation and preparation for transportation to the Children’s hospital. I can still remember…he was wrapped like a papoose, tight as can be, white hat on his head…he opened his eyes and stopped crying as soon as he was handed to me. OHHH those eyes….his eyes say it all. He takes everything in, looks into your soul almost….it was the first time but not the last that his eyes would calm us.

Thursday, June 4, 2009

Tucker Makes The News

Finding the melody PDF Print E-mail
News - Community News
Written by Ray Weikal
Thursday, 04 June 2009 00:01

Local child with Down syndromeprepares for innovative open-heart surgery

Editor’s note: Since April 2006, Sun News has run a series of articles following the family of Todd, Karen and Tucker Bryant and the challenges they have faced with Tucker’s Down syndrome and heart condition.

The best gift Todd Bryant will get on Father’s Day is saying goodbye to his son.

Bryant’s youngest child, Tucker, will leave his Northland home Sunday, June 21, for cutting-edge surgery to repair his ailing heart.

Anna Faltermeier/Sun Gazette — Tucker Bryant hangs out on the coffee table as he watches a sing-along television show May 28 with his parents, Todd and Karen, at their home in Platte City. Tucker will have heart surgery in June in Boston.

Since the day Tucker Bryant was born with Down syndrome and a failing heart, he’s never had an easy life. This will be Tucker’s third heart procedure in as many years, so he’s an old hand at this stuff.

"He’s a ball of fire," Todd Bryant said. "He finds the melody in everything."

For Mom and Dad, though, it never gets any easier. But this should be the last time they go through this ordeal, if all goes well.

Karen learned of her son’s condition early in her pregnancy after a check revealed Tucker had too many of the chromosomes that act as the body’s genetic building blocks.

Anna Faltermeier/Sun Gazette — Tucker Bryant plays with a toy car May 28 at his home in Platte City. One of Tucker’s favorite things to do is dance. “He’ll dance to anything that has a good beat,” said his mom, Karen Bryant.

The couple quickly set aside the abortion option and set about learning how to care for their new child with special needs.

It’s a decision Todd and Karen Bryant have never regretted, especially when they watch Tucker hang up his coat, play, laugh and learn in his new life as a student in the early childhood education program in the Platte County R-3 School District. Tucker’s condition makes his parents attuned to these small, satisfying moments.

"It’s not very many parents that get to notice those little things," Karen Bryant said.

Surgery in Boston

Tucker was never supposed to go to Boston, where his upcoming surgery will take place. But last October, the Bryants learned that Tucker’s heart and lung pressure were too high and that the previously planned final operation at Children’s Mercy Hospital was dangerous enough to be cancelled.

Then a chance encounter at a Christmas party changed things.

Karen Bryant decided at the last minute to attend an event thrown by the Kansas City Down Syndrome Guild. She happened to sit next to Kim Knipp, whose 2-year-old son, Will, had a heart condition similar to Tucker’s.

Knipp told Bryant about her son’s progress following a relatively new procedure performed by Dr. Pedro del Nido at Children’s Hospital in Boston. It was a permanently repaired heart, Knipp explained, like a car with a rebuilt engine.

Del Nido had found a way to use surgical robots, digital imagers and other techniques to repair congenital heart defects in the tiny, delicate bodies of children like Tucker. Del Nido’s work garnered a $5 million grant from National Institutes of Health.

Within a month, Karen Bryant had lined up the procedure for her son.

Knipp connected Karen Bryant with a cadre of other moms going through similar experiences. They’ve helped the Bryants sort through the hundreds of small details that demand attention when planning a trip like this.

"Since I’ve met Kim, she’s put me in the middle of that network," Bryant said. "It’s been great having those moms."

On June 25, the power plant of Tucker’s body — his heart — will be rebuilt. Six weeks of in-patient recovery will follow. The family has hopes for a major celebration when it’s time for his fourth birthday this fall.

Despite the pain of surgery, the fear of not getting help to Bryant in time when his oxygen levels fall too low, the millions of dollars in medical bills and thousands natural moments of stress for any parent — despite all that — the little guy’s heart is too strong to give up, and that’s enough to provide the strength needed for his mom and dad.

"After a while, you change your mind about wanting to take away your child’s Down syndrome," Todd Bryant said. "You won’t want to change a thing. It makes him who he is."

HELPING TUCKER BRYANT

To learn more about Tucker Bryant and his family, or to make a donation to help with his medical bills, visit bryantfamilynews.blogspot.com.

Staff writer Ray Weikal can be reached at 389-6637 or rayweikal@npgco.comThis e-mail address is being protected from spambots. You need JavaScript enabled to view it .

The Countdown-17 days left


I found out at 21 weeks that we were having a BOY!!! After having a girl a boy was a SWEET gift. They just had to be easier to raise than a drama queen.
At that same appointment I got to see Tucker’s toes, his heart, his nose that looks like mine. He was moving and growing at the right rate. I was over 35, barely, so close “watchful” eyes were upon this pregnancy.

At this same appointment a well trained eye saw a problem, a few signs…a heart with a hole in it, a “sandal” toe, thickening of the neck. I thought the “sandal” toe was so darn cute….the big toe hanging out there, separate from the others. We got sonogram pictures of it….he was so perfect!!!

It is amazing how, to the untrained, loving mother, cant wait to hold him and love him eyes, we see NO wrong. I didn’t see anything they did….just a boy that would take my heart and run with it.
I think Tucker sees the world as a loving mother does her unborn child and what a great thing that is. Maybe if we all did that, maybe this world would be a better place

Wednesday, June 3, 2009

18 days until we take the flight to Boston; 22 days until surgery…..and I think that says it all for today.

I am going to blog each day for the next 18 days, about my son, our hero. It might be a funny story or a tidbit from our past. It might be a picture of my handsome guy or a look to the future……join me in celebrating Tuckers life with us this far, take him into your hearts…..and remember him in your prayers!!! Enjoy the glimpse and please COMMENT when you feel the urge…..We love you all.!!!

Tuesday, June 2, 2009

Scrapbook Winner

Thank you so much for the comment love and well wishes that will be following Tucker to Boston in a few weeks. They mean a lot!

And now, for the winner of the very cool Flip Flop Scrapbook Giveaway!

Dina from 4 Lettre Words!
(
Random.org chose #9)

Congrats Dina and thank you so much for your generous donation to Tucker's fund.