Saturday, October 25, 2008

31 for 21... Day 25

Our Down syndrome group had its fall party tonight. Here a a few pictures.

Tuesday, October 21, 2008

31 for 21... Day 21

Parenting magazine is doing a special photo gallery on their website this month. Look, Bailey made it!


Saturday, October 18, 2008

31 for 21... day 18

Read this story about another test being investigated to diagnose Down syndrome prenatally. Blood Tests Ease Search for Down Syndrome


Wednesday, October 15, 2008

31 for 21... Day 15

Please click on the link to see and hear this inspiring story.

Homecoming Queen

Monday, October 13, 2008

31 for 21... Day 13

Okay, so I've missed a few more days. This is much more difficult than I thought.

We have this program in Florida to provide services for children with disabilities. This program is a state run program that has a few flaws. When I first received information about this program I thought, "wow this is great, they take care of everything"! Well, I was wrong. I have such a difficult time getting a return call, and now the therapists we have had a relationship with for over a year are no longer participating in the program. I received a call on Friday with this news, and then I started searching for new therapists, so far with no success. Imagine, 100 families seeking a therapist at the same time in your area. Also, these families are looking for a therapist that participates in this program. It is very difficult! We have private insurance, however it covers very little of Bailey's therapy. Before this news, most of the therapists were already on long waiting lists. So, I continue my search along with 100 other families.


Saturday, October 11, 2008

When Elmo Grows Up!

These are pictures from tonight's trip to see When Elmo Grows Up. It was a great show. However, just as the show was almost over Aubrey decided she wanted to leave. Weird!

31 for 21... day 11

Well, of course I've now missed two more days! These are pictures from the Orlando Buddy Walk. Enjoy!

Bailey and her Daddy! So Sweet!

Bailey and I had a little photo shoot! Enjoy! I think there are a lot of people in Orlando that have pictures with Bailey. We were off to the side, and several people came over to take their pic with her. Who wouldn't want to sit next to this cutie!

Aubrey learning to hula hoop

My parents. I love this picture of them!

Aubrey dancing with Curious George

Aubrey STILL dancing with Curious George. She doesn't like to share!

The crowd!

Wednesday, October 8, 2008

31 for 21... Day 8

Well I missed day 7. No excuses, but I left at 7am yesterday and didn't get home until after midnight!

So sweet.

Open heart surgery. The most difficult day ever, but the day her life truly began

Bailey with her big sis Aubrey

I couldn't imagine my life without my beautiful little girl! She has worked so hard to get where she is today. She's our hero!

Monday, October 6, 2008

31 for 21... Day 6

This is a post I made just 3 weeks after Bailey was born. I was terrified, sad, and confused. It's amazing how just a little over a year everything can change. I'm now happy, excited, and content with the life of my family and our future.

3 Weeks

It's Monday May 28, 2007 and our second daughter, Bailey, is 3 weeks old. This has probably been the longest 3 weeks of my life. My husband and I arrived at the hospital on May 7th for our scheduled cesarean. I arrived to an empty room after recovery. My husband, our parents, and our other daughter were in the cafeteria eating and Bailey was in the nursery. About five minutes after arriving in the room our pediatrician came in and informed me that several doctors and nurses feel our daughter may have Down syndrome. I, of course, didn't feel this was true because I had the triple screen and ultrasounds. My obstetrician said they were normal. So how could this be true? The pediatrician told me he did blood work and we'd get the results in a few days. Soon after I was able to hold my beautiful little girl and start the bonding process, which was very easy. On May 8th the pediatrician once again returned to my room. He said that he hears a murmur and that he would like to do an echo cardiogram. He said if Bailey has a heart defect they would send a cardiologist in to talk to us. A few hours later the cardiologist arrived in the room and said Bailey has AV Canal defect. My heart dropped. Once again I am alone in the room and getting results that will change my life forever. On May 10th my daughter and I were released from the hospital. Finally I could go home to my husband and our other daughter Aubrey. It was nice to be together as a family. Bailey was eating well, but still wasn't eating as much as Aubrey did when she was first born. We has an appointment on the 11th with our pediatrician. He was concerned with Bailey's respiratory rate and sent her for a chest x-ray. Thankfully things were changing for the better because her chest x-ray was normal. I finally felt we were going to stop getting bad news. On the 14th we had a follow-up appointment and her respiratory rate was much better, her color was better, and overall she looked good. We still had an issue with feeding, but the doctor increased the amount of calories per ounce and asked that we come back in a few days. On the 17th we returned to the doctor and Bailey was finally eating 15 oz of formula per day and she had gained 3 ounces. It was time to celebrate! He said we could wait 2 weeks before we had to come back. Finally, I can start my Down syndrome research and contact the early start program to get information on therapies. The following day Bailey had her 11:00pm feeding and went to sleep. We would wake her every 3 hours, but she refused to eat. The following morning we called the pediatrician and never received a return call. Finally, at noon, we decided to go to the ER. We took Aubrey to her grandparents house and arrived at the ER soon after. When we arrived they took Bailey back immediately. Within minutes she was surrounded by doctors and nurses. We were terrified. Was she even going to survive? All we could get from the doctor was that Bailey was very sick, but what was wrong? We were told earlier in the week about congestive heart failure, but this isn't what they described. Finally, we were told it was congestive heart failure. I guess I now know what to look for. Once stabilized, Bailey was flown to the children's hospital in Tampa. The doctors at the children's hospital said they would treat her with medication, and hopefully she'll be sent home in a few days. Bailey didn't recover as quickly as they hoped so on the 24th of May the doctors did a catheterization. It was then that they realized she also had another problem with her heart so the following day they did a PDA ligation. She has since been on a ventilator. We're not sure what will happen now, but we're hoping she will soon be removed from the ventilator, eating well, and going home.


Sunday, October 5, 2008

31 for 21... Day 5

Your child will never read, write, or count change.

You still have time to abort.

He'll be a burden.

She'll never be able to feed herself.

When should I schedule the termination?

You aren't planning to continue this pregnancy are you?

I'm so sorry.

These are statements expectant parents here each and every day. If I had heard these statements about Bailey before I saw her beautiful face I would have been terrified too.

91%-93% of pregnancies diagnosed prenatally with Down syndrome in the United States were terminated.

Saturday, October 4, 2008

The Past Few Days

Well, we have been a bit busy in our home. Busy passing germs from one family member to another. Although, I think we all have different issues at this time. I'm recovering from a cold and ear infection. Bailey has had two trips to the ER over the past two days. One was due to a temp over 103 and the other was a follow-up and to have her rechecked because I wasn't sure the issue was improving. She has a staph infection and they also took a tissue sample to grow and determine if she has MRSA. I am to call the ER tomorrow to get the final diagnosis. Late this afternoon Aubrey developed a runny nose and watery eyes. She is obvoiusly not feeling well, and I just hope this clears up soon for her because she is acting so pitiful.

Today, we did have a great day. Today was Buddy Walk day for us and I can't wait to put the pics up. The kids had such a great time and it was so nice to meet other parents and catch up with those we already know. Then, we went to Keith's dads house to visit them (grandmolly and granddaddy) Aubrey and Bailey were both given Cabbage Patch dolls straight from Babyland General Hospital! Well I'll update more soon. It's past my bedtime.


31 for 21... Day 4

Four facts you may not know about Down syndrome.

Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.

People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways. (And many contribute more to society than adults without Down syndrome... just my opinion)

Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

I received this in an e-mail today from an amazing woman. So, I thought I would share it with you all.

Some Mothers Get Babies With Something More
written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child.
People keep asking what she wants.
She smiles demurely, shakes her head and gives the answer mothers have
given throughout the pages of time.
She says it doesn’t matter whether it’s a boy or a girl.
She just wants it to have ten fingers and ten toes.
Of course, that’s what she says.
That’s what mothers have always said.
Mothers lie.
Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.
Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away.
It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news.
It can’t be possible!
That doesn’t run in our family.
Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies.
It’s not a lust thing; it’s a wondrous thing.
The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony.
Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.
Frankly, sometimes you mothers scare me.
How you lift that child in and out of a wheelchair 20 times a day.
How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.
I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary.
You snap, you bark, you bite.
You didn’t volunteer for this.
You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”
You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.
From where I sit, you’re way ahead of the pack.
You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.
You can be warm and tender one minute, and when circumstances require intense and aggressive the next.
You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall.
You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more.
You’re a wonder.

Friday, October 3, 2008

31 for 21... Day 3

I'm getting a little help for today's post. I'm not sure I even have time to breath today. I'll update more later. Until then, happy reading.

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Thursday, October 2, 2008

31 for 21... Day 2

So remember, I said I cried that first day. Well those tears continued for weeks... maybe even months. Not because I was sad, or devastated, but because I was scared. I was scared for my baby. Yes, I did mourn the child I didn't have, but that soon ended. Then, I became terrified. What is Bailey's future? Will she live to see her first birthday? You know, she's going to have open heart surgery. Isn't that risky? She's so young, isn't it possible she won't survive the surgery? She survived. She survived being in and out of the hospital for the first four months of her life. She survived one minor heart surgery, and also survived open heart surgery.

Then, I was also scared for her and her life growing up. Will kids call her names? Even worse... will adults call her names? Will she be that girl with Down syndrome, or will she be that cute girl Bailey? At first, I was guilty of making her that girl with Down syndrome. I thought I was doing it all right, and maybe I was, but I've changed my way of thinking. At first, I was telling everyone that my baby has Down syndrome. Now, I realize Down syndrome doesn't define who she is. She is Bailey. My daughter who is cute, sweet, and adorable. I went to a conference a few weeks ago and the speaker had a good point. I don't go up to someone and introduce myself and say, "my name is Tricia, I have a bladder control issue" (I've been told that's normal!?!). So, why should I introduce myself to people and say my child has Down syndrome. Yes, I want people to know. I want people to ask questions. I want to educate people, but that shouldn't be the first words out of my mouth. Yes, people will call her names, they will make fun of her. I will try to educate those people and try to make them understand describing her in certain ways isn't appropriate. Just like the R-word, used by so many, isn't appropriate.

Do I still cry? Yes, I cry after going to therapy with her. I cry when I see her work so hard to accomplish tasks. She worked so hard just to be able to hold her head up, sit up, and now she's working hard just to learn how to crawl. Therapy is a major workout for her. She grunts, moans, and huffs and puffs. She's exhausted and falls asleep immediately after her 1 hour workout. I still cry when I think about her future. I want to protect her, but I also want to teach her to protect herself and in the process educate others.

I'm proud to have Bailey in my life, and I just hope everyone who has the privilege to meet her realizes just how lucky they are to say they know her. My tears now are tears of joy, tears of pride, I'm not longer scared for her.

She made it to her first birthday!

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different.

Wednesday, October 1, 2008

31 for 21... Day 1

As you can see, about a week ago a new logo appeared on this blog. 31 for 21. Well to celebrate Down Syndrome Awareness month, those in the blogging community are taking part in this challenge to blog each and every day during the month of October to raise awareness of Down syndrome. So, I begin day 1 of my challenge...

In October of 2006 I began showing some very familiar symptoms. I was cranky, bloated, nauseous, and just feeling blah! I had that feeling I knew what those symptoms were, but I guess I was in denial. Keith persuaded me to get a pregnancy test. So, of course, I get five! I take one... positive, I take two... positive, I take three... positive. This continues until all five kits have been used. I'm so excited to be pregnant, but also concerned. Keith and I found out just a few months earlier that I was pregnant, and after sharing the good news with family, friends, and co-workers, that pregnancy didn't survive. That was one of the most difficult times of my life, so we decided to keep this little pregnancy a secret. For almost a whole month!

We soon begin prenatal visits with our OB. We have the first ultrasound to show that yes, we have a baby inside. Then, we did labs. Everything is looking great. After a few months the doctor asks if I want to screen for any genetic disorders. I, of course, said yes. I want to know if there's something wrong with my child (that was the old me). Everything came back normal. We had our 20 week ultrasound, which again was normal. Plus we found out... It's a girl! This pregnancy was much easier, medically, than my pregnancy with Aubrey. However, I did have morning sickness from day 1 to the end.

Keith and I felt comfortable that this pregnancy would be okay. We started sharing our exciting news with everyone! We couldn't wait for Aubrey to be a big sister. We went shopping for our little girl, picked out names for our little girl, decorated her nursery, and spent some extra time with Aubrey. We wanted her to enjoy her last few moments as an only child.

On Monday May 7th we arrived at the hospital for my scheduled cesarean. I went to triage where I visited family before the anticipated moment. I was soon wheeled into the operating room. Once I was prepped, Keith was able to join me. Dr. M started doing his job. It's so nice just laying there while someone else does all the hard work for you! Within minutes we heard the sweetest little cries. Bailey Mackenzie had finally entered our lives. She was beautiful!

Bailey was whisked away to get cleaned up and I went to recovery. Once I arrived in my room I couldn't wait to see her. However, while alone, I was greeted by the pediatrician and a nurse. They asked how I was doing, then they told me they feel Bailey may have Down syndrome. Honestly, I had no clue what they meant. I thought I was in the clear. We did all those tests, right? Aren't those 100%?

Bailey arrived soon after and I sat there holding her with tears flowing down my cheek. I examined her from head to toe, trying to see what the doctors and nurses saw. I also had the task of sharing this news with Keith. How am I supposed to tell him our child isn't perfect (old me again)? Well, he took the news fairly well. Not to say he didn't share a tear or two with me, but being the great man he is he found information for us. Information on Down syndrome.

Two weeks after Bailey's birth we received results from the labs showing that she does have Trisomy 21. I had already accepted that, and we were also preparing for her upcoming heart surgery. That, had become priority for me over Down syndrome. Within a few days after receiving her diagnoses Bailey went into heart failure. What had happened to my perfect life?

Now, just 17 months later, I wouldn't change anything about Bailey. Bailey IS perfect! She's beautiful, smart, energetic, and can manipulate anyone who comes into contact with her. Strangers first fall in love with her beautiful blond hair, then her almond shaped blue eyes, then they see her smile. You know... that smile that makes you melt.

91%-93% of pregnancies diagnosed prenatally with Down syndrome in the United States were terminated.