Fearfully & Wonderfully Made

Yogi with Tiana

2010-11-26T20:06:00.004-10:00

It's been a while since I posted anything, and I apologize once again for falling SOOO far behind. Most all of my posts have been on Facebook and therefore my blog has suffered miserably, again, my apologies!

Well, I thought you all might enjoy watching Tiana in action as she practices along with her YOGI DVD.

Another Angel is Born

2010-03-16T23:29:00.007-10:00

I came across this blog the other day and oh the emotions that came over me. Kelle Hampton is a wife, mother, photographer & blogger. She began blogging soon after her 1st daughter Lainey was born (2007) and shared wonderfully written stories and gorgeous pictures of her family. This past January Kelle gave birth to their 2nd daughter Nella, and she knew the moment she looked into her eyes that she had Down Syndrome. Well, I'll let Kelle tell you her story... click here.

Click here for an interview she had today on CNN's 'Connect The World'.

Tiana Turning 5

2009-12-13T23:00:00.002-10:00

It's hard to believe that Tiana is turning 5 years old this month. It seems like only yesterday when we welcomed her into this crazy world. Well baby girl, your daddy and I look forward to spending the rest of our lives loving you, spoiling you, bragging about you and of course being in awe of you. We love you Tiana Grace!

Wordless Wednesday - mm good

2009-11-18T22:34:00.004-10:00

My heart just dropped!

2009-10-23T20:22:00.004-10:00

OK...I usually NEVER let Tiana sit in the large part of the shopping cart, especially at Costco. I have a system where I set up the front seat with padding and a cute cover so not to get germs from everyone that previously used it. I set her up with her iPod so she can watch Elmo or Signing Time while I shop. Well, this morning I only needed to get 3 items (in & out) so I hesitantly put her in the back and off we went for out first item (goldfish crackers). I had to remind Tiana that standing up was a NO NO and she had to sit down. We got to the cracker isle and as soon as I stopped, Tiana stood up; and in one continuous movement she flipped out of the cart! It felt like it happened in slow motion as I watched the entire thing happen but I couldn't get to her fast enough. All I heard was a THUD - Ugh!!!!!! I scooped her up in my arms and looked for any sign of blood or a cracked skull. I stood up with her, grabbed my purse and ran out of the store and headed straight for urgent care. She didn't cry at all after we got in the car either. 2 hours later she walked out with a huge knot on her forehead and a black eye to match. The doctor said she landed on the thickest part of her skull (forehead) and unfortunatly the left side of her face too (hence the shiner). She was a little angel the rest of the day, while I was a total wreck and feeling incompatent as a mommy! Never again will I go against my better judgement - EVER!

Slacking!

2009-10-22T13:05:00.007-10:00

OK, so it's been 3 months since my last post... my apologies! I've been having to deal with some other issues which I won't get into, but I'm happy to say there has been some resolve - PHEW! So here are just a few uypdates...
Imua Family Services (Rachel & Beth) decided to put together a new Ds support group for all the new families on Maui. Our first meeting was a success (September) welcoming 4 new families (Marcus, Idalia, Eden & Sylas). Being around all these beautiful angels & their families was such a blessing!

About 2 years ago I began breaking out with this bout of eczema on my arms and other parts of my aging body, when suddenly 2 months ago it somehow mananged to land on my lower left eyelid (according to my dermo). The ointment I received burned the heck out of my eye and then about a week later it became inflamed and irritated. My regular dr informed me it was an infection and put me on a 7day oral & topical antibiotic rx. NO results after 10 days, so off to the opthamologist I went. It's not infected (it never was) so stop the antibiotics immediately and start with the steroid ointment - 48 hours later it's 95% better. I missed a week of work, but I don't miss the stares!

Wordless Wednesday - kitchen

2009-10-21T20:59:00.000-10:00

I'm "MOM"

2009-09-29T13:46:00.000-10:00

I am no longer called "Dada"; Tiana has finally started calling me "MOM"! Not Mommy or Mama, just plain ole MOM...what a break through this has been!

Speech Therapy Blog for Mommies

2009-07-23T10:02:00.005-10:00

Tiana is now 4-1/2 years old and has yet to call me Mommy or Mama. I am Dada. I know she can pronounce M's however when annunciating it in a word she replaces it with a 'B' (example: Elmo is Ebo, Oma is Oba). I came across this fabulous blog called Mommy Speech Therapy and after reading about the letter M, I immediatley sat down in front of the mirror with Tiana (can't do any therapy without a mirror) and began a 20 minute session. With consistent practice, I hope to be called Mommy in the very near future.

Wordless Wednesday - Feeding Tube Days

2009-07-01T10:15:00.005-10:00

Fathers Day at the Kealani Hotel

2009-06-22T16:14:00.010-10:00

We decided to spend the day at the 5-star Kealani Hotel pool for the day. Tiana had so much fun in the water and Dennis got extremely sunburned but appreciated the time off of work. It was a beautiful day to be had!

Mommy & Titi

Titi's raisin toes

Daddy & Titi

DS Awareness Bracelet

2009-06-22T15:47:00.008-10:00

I was so excited while picking out the fun little stones and charms for the awareness bracelet I designed with the help of Sasha at the Maui Bead Shop. Tiana is spelled out on individual dangling blocks adorned with blue swarovski crystals. Her middle name Grace (after my sister & also means blessing) is stacked like blocks. I wanted to include angel wings with the appropriate blue & yellow crystals and of course a token pink one. I ordered the Ds ribbon charm and will add that on as soon as it gets here. I will wear it proudly :) click on picture for larger view

Wordless Wednesday - Pool Time

2009-06-10T14:02:00.002-10:00

Special Education Law

2009-05-30T22:06:00.005-10:00

I recently attended a 2-day Wrightslaw conference right here on Maui and came away with tons of information on special education law & advocacy training. I highly recommend parents of children with special needs to attend if they are ever in your area. Thank you Peter & Pam Wright (and Autism Bridges Maui) for taking the time to further educate us!

Section 1400 - Finding and Purposes
Section 1401 - Definitions
Section 1412 - State Responsibilities ("Catchall" statute)
Section 1414(a,b,c) - Evaluations and Reevaluations
Section 1414(d) - IEPs
Section 1415 - Procedural Safeguards

Tiana Loves Showers Now

2009-05-30T21:56:00.005-10:00

When Tiana was little (even smaller than she is now, haha) she loved her baths & showers. Then for the longest time she hated getting her hair wet because of the water on her face. She would scream like you wouldn't believe until we were out of the shower completely and then she would act as if nothing happened (SHEESH!). Well, as of recently Tiana has been loving the shower especially when I rinse her hair and the water flows down onto her face...WHAT?? I have no idea what changed it, all I know is the shower experience is a more enjoyable one! YIPPEE!!

Welcome Prince Sylas

2009-04-26T16:28:00.002-10:00

Congratulations to my new friends Elena & Brett. Elena gave birth to another one of God's special angels and his name is Sylas Matthew. Sylas has two siblings Sam & Sophie. Welcome to the world!

Dolls or Hot Wheels?

2009-04-19T19:10:00.006-10:00

So Tiana received a beautiful 'asian' doll by the name of Calin from her Auntie Lala. We have decided to rename her Kai-lan like in the cartoon 'Ni hao, Kai-lan'. She loves her stuffed animals (Elmo, doggies, bunnies) but is now trying to get used to a more realistic looking doll. Watch this video and see how she does...

Today, daddy purchased Tiana's first Hot Wheels set and she absolutely loves it, so you tell me...dolls or hot wheels?

Spread the Word to End the Word

2009-03-26T08:17:00.006-10:00

It is time to “Spread the Word to End the Word,” and on Tuesday, 31 March, events throughout the United States and around the world will make people stop and think about their hurtful and disparaging use of the word “retard.”

Atlantoaxial Instability and Down Syndrome

2009-03-15T09:25:00.013-10:00

On March 5th, just 17 days shy of her second birthday, Rhiannon Elizabeth Nisly, who had Down syndrome, passed away from what appeared to be a sudden illness. The autopsy showed that it was not an illness after all, Rhiannon had AAI and she died from a spinal cord injury pertaining to that. Her parents had no clue. She was over a year away from the point where they would even have her checked for AAI (Atlantoaxial Instability). And it killed her. Just like that.

Rhiannon had been sick with Croup the week prior to her passing, so when she had difficulty breathing, was lethargic and began vomiting the day prior, her parents took her to see the doctor. The doctor felt it was just caused by the coughing and congestion due to the croup/cold. No one realized that the respiratory failure was due to a spinal injury.

The standard medical protocol for children with Down syndrome states that they should get an xray to test for AAI around the age of three. It is required before stating any sports teams or equine therapy. Most surgeons will order this xray prior to any surgery involving intubation, due to the hyper-extending of the neck that is required.

One quick, inexpensive xray can show if your child with Down syndrome is amongst the 30% of children with Down syndrome that have this condition.

Rhiannon was never tested for AAI. She wasn't in the age bracket for it yet. She hadn't needed surgery with intubation. She didn't show signs of a potential problem until it was too late.

Doctors say, "Oh it's so rare. Even if they do have it, it is very unlikely it will cause any issues." According to the link above:

The primary complications result from spinal cord compression.

In most cases, signs and symptoms progress slowly. The diagnosis can be made, therefore, before the advanced stages of the disease.

Death is unusual but may occur in cases of acute decompensation as a result of respiratory arrest related to compression of the high cervical spinal cord.

Several studies have shown that serious complications are indeed rare.

Rhiannon's terrible death may be an unusual result of this condition, but it is a reminder of how important it is to keep looking for complications! Please, please make sure your child with Down syndrome is screened for AAI.

This tragic story was found on the Sunflower Stories and Life With My Special Ks blogs.

Tiana's School Portrait 2008-09

2009-03-13T17:00:00.002-10:00

The T21 Traveling Afghan

2009-03-09T01:41:00.010-10:00

Little Miss E is sending an afghan around the world and you can help. Little Miss E's mom is making an afghan to send to families with a child with Down syndrome. A journal will go along with the afghan. When you get the afghan, you take pictures of your child with the afghan and the pictures will be posted on the T21 Traveling Afghan page. After you spend some time with the afghan and write in the journal, you send it on to the next family. Little Miss E will provide you with their name and address via email. The sender will be responsible for shipping costs.
Want to be included? Just send an email to littlemisse21@gmail.com (subject: T21 Afghan) with the following information:
1. Name

2. Address

3. Blog url

4. Name and age of child or person with T21

5. Whether or not you would be willing to ship the afghan out of your country of residence

Don't forget to grab the button for your blog!

Ahhhh, Much Better!

2009-03-02T08:13:00.005-10:00

Stacking Cups Pro

2009-02-23T16:43:00.009-10:00

The darn batteries ran out about 30 seconds before she finished! She refused to start over for me...another time maybe lol.

Tiana gets a 'real' haircut... 6"!!!

2009-02-15T15:14:00.008-10:00

Mele Kalikimaka

2008-12-21T22:50:00.005-10:00

Wishing you all the Merriest Christmas &

A Prosperous New Year!

Tiana Can Read

2008-11-24T20:01:00.007-10:00

I'm so proud of her!

Down Syndrome Diagnosis - How Best To Discuss the News

2008-11-18T15:47:00.010-10:00

This guide has been prepared to assist physicians facing the challenge of informing parents that a child has or may have Down syndrome.

Careful, well informed consultations delivered with sensitivity can have dramatic impact on parents' wellness and ability to cope. What you say and how you say it will have a life-long impact on the health and well being of your patient and the child.
Click here to watch videos

Tiana's Preschool Picture 2008-09

2008-10-21T15:56:00.004-10:00

She wasn't quite sure if she should smile or not. Tiana loves going to school and socializing with all of her friends. She loves wearing her backpack and insists on jumping over every crack in the side walk on the way to class. We are working hard in the 'potty training' department and so far it seems that she is catching on. She wakes up in the morning and from her naps with a dry diaper 90% of the time. Woohoo, big girl!!

Tiana is October's "Signing Time Star"

2008-10-13T16:02:00.004-10:00

Click on the title to link to the Signing Time Website

Congratulations Tiana Grace

We Are So Proud of You!!

XOXOXO

S. 1810: Became Public Law on October 8, 2008

2008-10-12T15:01:00.006-10:00

Let's Celebrate!!

Status: Introduced Jul 18, 2007
Reported by Committee: Mar 13, 2008
Amendments (1 proposed)
Passed Senate: Sep 23, 2008
Passed House: Sep 25, 2008
Signed by President: Oct 8, 2008
Last Action: Became Public Law No: 110-374

S. 1810, The Prenatally and Postnatally Diagnosed Conditions Awareness Act

2008-09-21T23:11:00.004-10:00

This bill must be passed! There is a 90% termination rate of those receiving a prenatal Down syndrome diagnosis. Many of our medical professionals do NOT provide up-to-date & evidence-based information to the parents who receive a prenatal or postnatal diagnosis' (much like our personal story).

Prenatally and Postnatally Diagnosed Conditions Awareness Act - (Sec. 3) Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.

Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.

Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.

Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
Authorizes appropriations for FY2008-FY2012.

Sponsors:
Sen. Samuel Brownback [R, KS]
Sen. Byron Dorgan [D, ND]
Sen. Edward Kennedy [D, MA]
Sen. Joseph Lieberman [I, CT]
Sen. John McCain [R, AZ]
Sen. Ted Stevens [R, AK]

Committees:
Senate Health, Education, Labor, and Pensions

Tiana Meets Elmo

2008-06-30T10:39:00.012-10:00

I was so excited to find out that Sesame Street Live was coming to our little island of Maui. Tiana has been a huge Elmo fan for the past year and a half and regardless of the ticket price we were going! I was contacted by her Early Childhood Development Program staff and they had invited us to meet 2 of the Sesame Street characters the day of their opening night. We weren't sure which 2 until we arrived that morning and I didn't know how she would react to a life size character.

Elmo and Cookie Monster entered the room of about 20 excited toddlers (& parents). At first, all Tiana could do was gasp, point and sign Elmo & Cookie Monster. She finally pointed to the ground so she could get up close & personal...

Make an on-line slide show at www.OneTrueMedia.com

The next morning was the Sesame Street Live show and we were all so excited (9th row center). However, so soon as Bert & Ernie appeared on stage and began talking the sound was so LOUD it overwhelmed her little ears. She immediately turned around so she was facing me and would not watch the show. We took her to the lobby where they provided us with earplugs - LIFESAVERS! Needless to say, she enjoyed the rest of the show.

Tiana's 1st School Picture

2008-03-06T22:03:00.006-10:00

It's been over 7 weeks since Tiana started school and I am happy to report that she has adjusted fantastically! She had a few days where she would begin to cry just before 'quiet time' but has chosen to accept it for what it is... quiet time, and that's it. She refuses to take a nap for Miss Susie & Miss Donna and likes to test them by getting off her nap mat. Needless to say, she's exhausted by the time she gets home and I have no problem putting her down for a well deserved rest. She has improved greatly with her fine motor skills (pincher's) and she loves matching colors & shapes. She got a trampoline for her birthday (they have one in her classroom too) and that too has helped her gain the coordination she needs to jump with both her feet off the ground - WOOHOO!! According to Miss Susie, Tiana will drink her water from a regular cup, however at home she insists on using her sippy cup - ARRRRRRR. Her ability to verbalize sounds is also improving however, it isn't anything I we can really understand - she loves to babble while she plays. The following are some words she attempts to verbalize:

Thank You is "Dew"
Daddy is "Dadaaa"
Titi is "T T"
Please is "Psss"
Hi is "Hiiiiiii"
Bye is "Hiiiiiii"

There you have it - our princess is well on her way.

An Ambassador Against Fear

2008-03-03T08:11:00.002-10:00

By Beverly Beckham
March 2, 2008
The Boston Globe

This is what "internationally renowned" Sherman J. Silber, M.D., writes in his "completely revised and updated" book "How to Get Pregnant," published by Little Brown and Co. last August: "The biggest fear of most pregnant women is that their child will be abnormal, and the most common abnormality they worry about is Down syndrome. . . . These children are severely retarded mentally, and they usually die before their thirtieth birthday."

He also writes: "We can prevent couples from having to face the horror of giving birth to children with otherwise devastating genetic defects such as Down syndrome, cystic fibrosis, muscular dystrophy, mental retardation, etc., that terrify every woman who ever gets pregnant."

Silber's book has sold more than 400,000 copies. It's been translated into Spanish, German, and Russian. He's been on "Oprah," "Good Morning America," and NPR.

Silber may be popular, but he is wrong.

"Most people with Down syndrome have IQs that fall in the mild to moderate range of retardation. Some are so mildly affected that they live independently and are gainfully employed," says the National Institutes of Health, the federal agency that speaks with authority on this issue.

"Most of the health problems associated with Down syndrome can be treated, and life expectancy is now about 55 years," says the March of Dimes.

And giving birth to a child with Down syndrome or cystic fibrosis or muscular dystrophy or mental retardation is not a "horror." Not according to every woman I know who has given birth to a child with these disabilities.

It takes a long time to alter public perception, to dispel these untruths. I know. My granddaughter has Down syndrome.

"This is Lucy," I say to someone new and Lucy smiles, or doesn't, because she is 4 and 4-year-olds can be sweet or they can be indifferent and stare at the floor.

But mostly she is sweet and says "Hi" before bolting across a room to wherever she wants to be. Mostly she makes a good impression. And this is important because Lucy may be the only child with Down syndrome this person ever meets.

Lucy doesn't know that she's an ambassador. She doesn't know that how she acts may determine what a person thinks of other people with Down syndrome. She doesn't know that she's up against misinformation and fear.

Lucy frightens no one. She's a pretty girl with light brown hair pulled into two pony tails, sparkling green eyes, and a knack for leaving people who meet her not sorry and sad, but happy.

Amy, my friend Anne's daughter, was the same way. She had cystic fibrosis. She lived for 11 years. Too short a time. But a good time, a beloved time, not a horror.

Efforts to change the way people think about kids with disabilities are slow going because there are not enough Lucys telling the world that they're OK. Lucy is not on "Oprah." Lucy is not an "expert."

But the truth is that Lucy shows people that Down syndrome is not the end of the world.

This truth is in books, too, and in movies and blogs and in other people with Down syndrome. But who in the general population would hunt down "Praying with Lior," a documentary about a 13-year-old boy with Down syndrome who loves to pray? Who would read "Gifts," a collection of stories written by mothers of children with Down syndrome? Who would watch "Down Syndrome - The First 18 months," an educational video put out by Woodbine House?

Who will read "Road Map to Holland - How I Found My Way Through My Son's First Two Years With Down Syndrome" when it's released next month? Who will read blogs about Down syndrome just to learn?

Only people who have reason to learn. The rest of the world learns as they go, believing the facts that some "expert" gets wrong. So misinformation lives and old beliefs endure and negativity reigns.

On paper, kids with disabilities do not make a good impression. On paper, Lucy is all negatives. Low muscle tone. Speech delayed. Cognitive impairment. Slow to walk, to learn, to grow. Even her almond-shaped eyes are a negative, though God knows why. They are beautiful, like her mother's, bright and full of wonder.

But in person? Lucy charms.

In person, Lucy is just a person, 4 years old, saying her hellos, then racing away to discover the world.

Beverly Beckham can be reached at bevbeckham@aol.com. Listen to Beverly's weekly podcast at boston.com/news/podcasts.

In Memory of Tiana's 'GrandBob'

2008-02-26T10:57:00.003-10:00

Robert Chase Prouty was a man of integrity, loyalty, trust and most importantly Unconditional Love. He will be missed by all who knew & LOVED him. God blessed us with 'Bob'.

A Memorial Tribute to Robert Prouty

Tiana's first day of preschool

2008-01-16T12:59:00.000-10:00

As expected, Tiana's transition from being home with Mom 24/7 for her first 3 years of life into preschool was no problem. She started (sped) preschool on Monday January 14, 2008 and is only 1 of 6 children in her class. 4 boys & 2 girls, 1 teacher & 1 aide (love the odds). It's a public school however they require all students to wear uniforms. The uniforms didn't come in Tiana's size so I had to special order them online and had them embroidered with the school logo. She loves waving at all the other children as we walk to her class and they all respond so positively. The first 2 days I stayed a little while in the morning, came back to have lunch with her and then picked her up after school. She would not hesitate to wave 'good-bye' before I was even ready to leave. Now THAT was hard! Here is a video clip of Tiana exploring about 5 minutes after we entered the classroom. Shortly thereafter started sorting bears w/Miss Susie.

Special Needs Team Perform in Cheerleading Competition

2007-10-12T11:36:00.000-10:00

By Donna St. George
Washington Post Staff Writer
Friday, September 21, 2007; A01

click here for full story

Difficult Diagnosis

2007-09-19T22:17:00.000-10:00

When their unborn child was diagnosed with Down syndrome, one couple found it difficult to envision their future family. Then they met Troy (click title to view video).

Prenatal Genetic Testing

2007-09-19T22:04:00.000-10:00

With new prenatal genetic testing the number of Down syndrome births could sharply decrease. That is not necessarily good news for one group of people; parents of children with Down syndrome. In detroit, Lucy Talbot leads an unusual brand of disability activism (click title to view video).

Because they're typical...

2007-08-31T12:07:00.000-10:00

I would love to take credit for the following post but I can't. I was surfing through myspace and came across this awesome 'blog' and had to copy it. It holds SO true; this world would crumble without God's earth angels here to humble us all. Thank you Shannon

By: Shannon Kernahan
May 22, 2007

I am not a lawyer. I am not a teacher. I am a mother.
A mother of a child with Down Syndrome.
A child who I can confidently ascertain will never be a..
murderer
rapist
menace to society
crook
burglar
terrorist
adversary

Yet, some of the powers that be whether Doctors, Geneticists, Politicians, or even Judges would rather my child not be born, just because he is not typical.

How far can a telescope truly see? What genetic link can truly put the eye to the telescope to see a human being that will never positively contribute to our world just because he isn't TYPICAL.
Then you tell the American Council of Obstetrics and Gynecology that they may want to point the finger at some other fractured chromosomal abnormality to prevent parents from future disappointment. I am not disappointed that my son has Down Syndrome.
Perhaps those parents will sue them later in life to find that there may have been a genetic test that would indicate the presence of a murderer, or some other atrocious speck of a human being in the human race. I truly believe that is why the ACOG ammended their policy on prenatal testing. Parents have sued Ob/Gyn's because they have delivered less than perfect babies. Just look at past cases against Ob/Gyn's and it's not hard to see. What are we saying about how we value human life?
Down Syndrome births are greatly declining. Autism is becoming more and more prevalent in otherwise healthy typical children.

Someone Blow The Whistle! What Is Going On Here?

Keeping Kids Healthy: Raising A Child With Down Syndrome

2007-04-18T10:32:00.000-10:00

Montefiore Medical Center in Association with WNET
27 min 7 sec - Sep 19, 2006
www.keepingkidshealthy.org

What happens to a family when a child is born with Down Syndrome? Parents scramble to learn as much as they can about the condition and the impact it will have on their child – at first, the feeling is everyone's life will be forever changed. And in truth, their lives are forever changed – they will learn over time what experienced parents and doctors know: that a child with Down Syndrome will grow into a loving, contributing member of the family. Join Dr. Winnie King and some great kids and their families, and see from the inside out what it's like to grow up with Down Syndrome.

Journal

2007-04-12T16:35:00.000-10:00

The following is from the journal I kept beginning the first day our angel was born and throughout her heart surgery at 4 months old until December 5, 2006.

Thursday, December 23, 2004 Mommy's contractions started around 2:00am (unexpectedly) and I arrived by emergency cesarean section (due to breech position & heart defect)at 7:55am. Luckily we were already at Kaiser Moanalua (Oahu) for a fetal echo cardiogram schedule for the following morning... PHEW!!!

Monday, December 27, 2004 Daddy flies back to Maui today, he gets to see my brothers Torey & Jesse. I can't wait to meet them. Hurry back Daddy!! xoxoxo

Tuesday, December 28, 2004 Auntie Grace (my name sake) arrives from California. I love you Auntie!

Friday, December 31, 2004 I was taken out of the incubator and put in a regular bassinet. I can breathe comfortably without any oxygen blowing up my nose (I hated that thing!) but still remain in the NICU. I started spittig up alot after my feedings, but I think it might be from the extra calories they've been giving me. Auntie Grace had to go home (I miss you!)but Daddy came back (yippee!!!)

Saturday, January 01, 2005 HAPPY NEW YEAR!!!! Mommy & Daddy met with the specialists (cardiologist, neonatologist) this morning to discuss my heart defects. The puka in my PDA is really big and I may have to have it surgically closed to stop the shunting. I don't know when they are going to release me, everything is still a 'wait & see'. Oh yea, I'm still spitting up alot. Mommy was taught how to change my NG tube (nasogastric) in case I have to have it when I'm discharged (hopefully soon)

Monday, January 03, 2005 Great news...I will be discharged sometime this week. Dr. Shirai (peds cardiologist) will be doing another Echo Cardiogram tomorrow to see if my PDA has gotten any smaller, but won't be making a decision on surgery for another couple weeks. Meanwhile Mommy & Daddy will be trained on how to take care of me (medically that is; they've aced the loving me part). My feedings have been reduced from every 3 hours to every 4 hours which I can't complain since my spitting up was getting really annoying. I'll be getting tube fed by a constant drip starting tonight from 11pm-5am, this way I won't get woken up to eat and when I get home Mommy won't have to get up either (Mommy REALLY likes that).

Tuesday, January 04, 2005 I was able to bottle feed 25cc's under 10 minutes for Mommy, which impressed her and the nurses, since I tend to tire pretty quickly. I get to stay in the same hospital room with Mommy & Daddy for one or two nights while being monitored by a NICU nurse to make sure they're ready to take care of me at home. They had to watch a CPR video too. We're still counting on coming home this week, but we'll keep you all posted. Got a surprise visit from Uncle Eric too!!

Wednesday, January 05, 2005 A.M. - Yipee... my PDA has substantially closed and it looks like they won't need to do surgery to tie it off. My cardiologist is going to suggest to the NICU team that Mommy & Daddy 'room in' tonight (and maybe tomorrow) so we can ALL go home by Friday. I can't wait to meet all of you!

Wednesday, January 05, 2005 P.M. - We're all settled in as 'Room In' patients for the next 2 nights. Daddy has to sleep on that uncomfortable cot (sorry Daddy!). We are all looking forward to coming home soon. XOXOXO

Thursday, January 06, 2005 One night down, one more to go. I kept Mommy up most of the night since I have my days and nights mixed up. We fly home to Maui tomorrow at 4pm...Goooooodeeeeeee!!

Friday, January 07, 2005 I slept the entire way from the hospital on Oahu to home on Maui! Auntie Julie picked us up at the airport and she's just as funny as Mommy said she would be. Home at last, home at last... Thank You Jesus, I'm home at last!

Saturday, January 08, 2005 GrandBob, Tutu, Auntie's Terrie, Patty & Candee and cousin Chandra came to visit me for the first time. I slept through their entire visit... sorry!

Sunday, January 09, 2005 I slept through the night never to wake during my constant feed; infact, we all slept in until 6:30am. Mommy & Daddy & I went to Stella's for breakfast. I slept through that too!

Tuesday, January 11, 2005 Had my first well baby care appt with Dr. Fox. He noticed my piko (belly) was kind of red and might have an infection that could pass through my blood stream pretty quickly, so he admitted me to Maui Memorial right away to receive 48 hrs of antibiotics via IV (oweeeee!) Mommy will stay the 2 nights with me.

Thursday, January 13, 2005 Discharged from MMH, and so glad to be home (again). Thanks everyone for your prayers, I know Jesus was and still is listening. My big brothers visited me tonight and I'm excited to get to know them better.

Tuesday, January 18, 2005 I met my new friend Ariana today. I have a feeling we're going to be true 'soul mates'. XOXO

Saturday, January 22, 2005 Aloha everyone... this is Debbie and I just wanted to update you all on Tiana's heart condition. Our last visit with the cardiologist was extremely promising as Dr. Shirai had to look really hard to find the PDA had almost completely closed on its own. The next echo is scheduled for this Tues 1/25 and hopefully will show a complete closure. As for the other 3 (ASD & VSDs), regular monthly visits with Dr. Shirai will tell if and/or when surgery will be needed sometime in the future. Tiana has gained about 4oz since her birth and we expect her to continue gaining weight as her feedings both bottle & breast improves. Formula is a must for the extra calories due to her cardiac condition and fortunately I can mix it in with my own milk. Dennis the boys and I are all extremely thankful for the love, support and prayers from all of you. We are truly blessed to know each and every one of you.

Thursday, January 27, 2005 It's Debbie again...Tiana's last visit went fairly well. She lost 3ozs (6lbs-3oz) due to my attempt to replace 2 bottle feedings for breast feedings. MY BAD! We’re back to 470 daily cc's of formula or pumped breast milk fortified with extra calories. No bonding for me until she gains a good amount of weight. Great news from her blood tests though, both her white blood count (125,000 10,800) and platelets count (over 1mil 250,000) dropped drastically and is now in the 'normal' range, WOO-HOO! All in all, we wouldn't trade her in for anything. Until the next update... xoxo

Thursday, February 03, 2005 Quick update on Tiana's weight... with scheduled feedings and the right amount of calories, Tiana's weight has jumped up to 6lbs-15ozs -- woohoo!!!

Thursday, February 10, 2005 Tiana had another echocardiogram done today and we are happy to announce that the PDA is completely closed; the ASD is almost closed as well. The lower VSD has closed about 40% since 4 weeks ago however the upper VSD is still pretty big. The peds cardiologist feels that if it does not begin to close soon, then surgery is a definite as it will put too much pressure on her little lungs. He would like to schedule it as early as the end of March but she will need to gain another 5lbs (yes, 5 pounds - that is impossible) SO... hopefully it will close enough to put the surgery off until the later part of June since that is when the Stanford surgeon comes back to Oahu. Best case would be for the VSD to close completely on its own. Her feedings were increased by 30mls per day. Please keep your prayers coming as I know they are heard. XOXOXO

Friday, February 25, 2005 Tiana is doing fantastic... today she weighed in at 7lbs-12oz a 12oz gain in 3 weeks!! YIPPEE, she got her 2 month well baby check up and received 3 shots in her thighs and we both discovered that her lungs are in working order. She belted out 3 loud cries like I've never heard before and then crashed out for the next couple hours. We are so proud of her and her ability to withstand the continuous needles. Stay tuned.

Sunday, February 27, 2005 We attended our first support group get together at Kamaole III today and were finally able to meet the other families that are blessed to have a beautiful DS baby of their own (see photo gallery). I can't wait for Tiana to get a little older so she can interact with them as she is the youngest one to-date. Thank you Kathy & Sam(antha) (Ariana's Tutu & Mommy) for getting this group together, we felt completely at home.

Monday, March 07, 2005 Tiana had a great weekend of feedings. She was able to drink more than half of her 2oz bottle before I had to feed the rest through her NG tube. She even burped afterwards. This is a milestone worth celebrating.

Tuesday, March 08, 2005 WOOHOO... Tiana finished her entire 2oz bottle without her feeding tube. She's still having problems with her gag reflex and reflux but we're working on that with her speech therapist. Keep your fingers crossed.

Thursday, March 10, 2005 Happy Birthday to Daddy Dennis!

Friday, March 11, 2005 Tiana weighed in at 8lbs-9ozs and we're all excited about her progress. GrandBob & Tutu spent the day with us today...we love you both very much xoxoxo

Monday, March 21, 2005 Today Tiana had another echo and chest x-ray. The findings unfortunately confirmed the following: still some communication between the upper two chambers of TiTi's heart (ASD), there are 2 tiny little holes in the lower chambers (VSD), however there is still one large (perimembranous ventricular septal defect)hole that will in fact require surgery. Her surgery is tentatively scheduled for April 5, 2005 and will be done at the Lucile Packard Children's Hospital at Stanford (Palo Alto, CA) with Dr. John J Lamberti Jr performing the surgery. Dennis and I will be staying at the Ronald MacDonald House near by. We're not sure how long we'll be out there as that will depend on TiTi's post-op condition (possibly 3 weeks). I will continue to update you with any new info we receive.

Thursday, March 24, 2005 Tiana's surgery has been rescheduled for April 26, 2005. We'll be flying out on the 23rd for her pre-op. She now weighs 9lbs-.5ozs

Wednesday, March 30, 2005 (http://www.emedicine.com/ped/topic2544.htm) "For patients with large VSDs, surgical repair is indicated at any time during the first year of life if the infant fails to grow appropriately despite optimal medical management. Surgical risk and mortality for patients with large VSDs are higher in the first 2 months of life than after age 6 months (10-20% versus 1-2%), however these data are improving, especially in centers with a large surgical experience. Elective surgical closure of large VSDs should be planned within the first 6 months to 1 year of life to prevent the development of irreversible pulmonary vascular obstructive disease (ie, Eisenmenger syndrome)."

Friday, April 15, 2005 Getting closer to Tiana's surgery date, she now weighs 9lbs-13ozs!!!
We would like to say a special prayer for Tiana's little friend Ariana as she is in the hospital at Kaiser Moana Loa with pneumonia. We love you Ari!!!!!!!

Friday, April 22, 2005 Well we made it to Palo Alto, CA and Tiana did fantastic on her first trip to the mainland. We're staying at the Creekside-Inn room 132 (650)493-2411 for the entire duration. Tomorrow Opa, Oma & Aunty Joyce will meet TiTi for the first time and we're all very excited. Monday is pre-op day and Tuesday is the big day of surgery. We'll keep you posted on a daily basis. Thanks for checking in! xoxo

Tuesday, April 26, 2005 1) It's the big day and Tiana slept right through the night without waking up from hunger. We could not feed her formula after midnight however we were able to feed her 60mls of Pedialyte befor 8am. We're just packing up her things and will be heading to LPCH shortly for admission. Her surgery (3hr procedure) is scheduled for 1pm this afternoon but we probably won't be able to see her until after 6pm once they've stabilized her. Tiana is one strong little princess and we know she will recover quickly. Thank you all for your thoughts and prayers, I'll be in touch!

Tuesday, April 26, 2005 2) FRUSTRATION!!! After waiting around for almost 4 hours, LPCH has postponed Tiana's surgery until tomorrow or possibly even Friday. There was an emergency surgery this morning, Dr. Lamberti is off on Thursday and there are no beds available (over loaded). Sheeesh!!! We will know more by tomorrow morning. Will keep you all posted.

Wednesday, April 27, 2005 OK then... Dennis & I met with Dr. Lamberti late this morning to discuss the issues of the delay. Apparently there have been numerous emergencies and they are understandably priority. Dr. Lamberti will attempt to work her in late afternoon tomorrow (Thurs) and if not he will this weekend. It looks like Saturday which also means Dennis will be staying another week (good for me too). Tiana is doing incredibly well, her spirits are sweet (as usual) and I think she really enjoys the climate up here as do we! Until then, XOXOX

Thursday, April 28, 2005 It looks like Saturday morning (1st case) is the scheduled date for TiTi. They are putting her on the wait list for tomorrow (Fri) but we're pretty certain they won't be able to fit her in (I'd rather she be the 1st case of the day anyway). I don't know the time yet, but we should hear by tomorrow afternoon. We went to this huge mall in Santa Clara and bought some cute hats & booties for her to wear while recovering in the CVICU (see photo gallery). Anyway, time is ticking and I'm going to attempt to sneek in a wink or two. Until then.

Friday, April 29, 2005 So it obviously didn't happen today (ugh!) but there's always tomorrow. We are scheduled to be 1st case tomorrow AM however we don't know what time yet. We have to prepare Tiana for a potential 7am admittance meaning no formula after midnight and only clear liquids until 4am. We're crossing our fingers for this to actually happen. You can imagine how anxious we're getting (I mean 'we are'). I will update as soon as I hear more. Aloha for now...

Saturday, April 30, 2005 1) We got the call at 7:30 this morning and are getting ready to head to the hospital for Tiana's surgery. I can't bring the computer so I'll update the website at my earliest possible convenience. I'm sure we'll be calling most of you directly. We love you all!!!!!

Saturday, April 30, 2005 2) She officially went in around 9:30am and we expect to see her soon after 3pm. CVICU (cardiovascular ICU) has to make sure she is in stable condition before bringing us to her. Tiana was in great spirits and we know that she is in extremely great care. We couldn't ask for a better Dr. to perform this ever so delicate surgery. To be continued...

April 30, 2005 3) The surgery was a success and Dr. Lamberti is our angel. God truly guided his hands. Tiana is recovering well however they are trying to get her temperature down from 101 degrees. She looks so helpless just lying there and it's taking everything from Dennis and I to keep from picking her up to hold her close to us. We are sooooo blessed. Until tomorrow.

Sunday, May 01, 2005 Even after much sedation through Tiana's first night post-op, she still managed to squirm around so much so that she knocked the IV out of her groin area and they could no longer draw blood from that vein and they had to restrain her legs from flailing around. By morning (7ish) the morphine drip was increased and she is now sleeping peacefully all day without restraint. Her vitals look great however they want to wait another day before removing the breathing tube by giving her a full 24 hours of complete rest. Thank you all again for all your prayers and well wishes for our little princess, they worked! Love to you all!

Monday, May 02, 2005 The end of a long and tiring day. As Tiana's blood gases improved through last night, the more they allowed her to breath on her own until about 10am when they removed her 3 chest tubes (which I recorded) and breathing tube (extibated). Unfortunately her little lungs could not handle it on their own so when we returned from having dinner, we were surprised to find that they had reintibated her with another breathing tube. Apparently her heart was also working over time (too much, too soon). This is not unusual and just a slight set back. They'll probably extibate again on Wednesday. Dr. Lamberti was also kind enough to consider the fact that we live in Hawaii so the incision he made was for cosmetic reasons (bra line, see photo gallery). All in all, Tiana's day was quite eventful and therefore she will be sleeping right through the night. Until tomorrow...xoxo

Tuesday, May 03, 2005 Another long day in the ICU. They surprisingly extibated Tiana (again) and she seems to be doing much better this time around. Her breathing is more controlled and relaxed rather than struggling. The process of extibating is only about 15 minutes, but to stablize her breathing on her own takes a couple days. Her poor little voice is non existent as the breathing tube causes inflammation to her vocal cords so when she cries nothing comes out. I was able to FINALLY hold her but she had so many tubes and lines attached to her and she was soooo uncomfortable I could only stand to SEE her cry for about 7 minutes. She was much more comfy in her bed. I guess I'll have to wait a couple more days for my TiTi fix. Dennis is getting pretty antsy too. Until tomorrow... xoxo

Wednesday, May 04, 2005 Tiana seems to be recovering as well as we could have ever expected. She took to her pacifier as if it were going out of style; I guess anything is better than that breathing tube (we're hoping that she takes to the bottle just as easy). When we came in this morning she was looking a little pale, but as the afternoon came around her color seemed to be coming around too. They removed another line out of her left hand and I was finally able to hold her for about 45 minutes. I was beginning to have withdrawals...SHEESH!!!

Thursday, May 05, 2005 Another day spent in the CVICU watching our pretty little girl trying to get comfortable in her California King hospital bed. They took her off the Heliox that they've had her on since her extibation. The mask was so big that it covered her entire face and it was really uncomfortable for her (and mom & dad). Her oxygen level was reduced to almost room air as well, woohoo!! Anyway, we've been told that she will be graduating upstairs to the 3-West Wing in the IICU (Intermediate ICU) tomorrow. She'll probably be in there for 1 or 2 days and then possibly another 1 or 2days in recovery until the big DC (discharge). Until tomorrow.

Friday, May 06, 2005 Tiana is now officially in the I-ICU and in addition had her roughest day. Her NJ tube (feeding tube runs past the stomach directly to the small intestine) rubbed her left nostril raw to the point of bleeding (a lot). She could not get comfortable even with morophine and ativan. She finally fell asleep in Daddy's arms after 4 hours of constant crying and discomfort. Mommy will be sleeping at her bedside tonight just in case she has another episode. We felt comfortable enough to leave her sleeping while getting some dinner. Until tomorrow with more pics (I promise)...

Saturday, May 07, 2005 It was Mommy's turn to be up all night as the recliner next to Tiana's bed is hardly a recliner and all the bells and whistles constantly going off kept me up pretty much all night. Tiana on the other hand was a little trooper and slept through the night. She had a small bout of agitation that lasted about 1-1/2 hours this morning, but other than that she was the perfect little angel. They replaced her NJ with an NG tube and did not require any sedation what so ever. Talk to you on Mother's Day.

Sunday, May 08, 2005 Moving right along...all Tiana's stiches were removed this morning, her IJ was removed out of her neck and she is no longer needing oxygen and she's breathing completely on her own. The respiritory therapist is happy with the sound of her lungs as well. Dr. Lamberti says that our timing for a Sunday 5/15 departure is completely realistic. Auntie Lynnie, Uncle Kurt & Uncle Mark all came to meet TiTi from So. California for the day. We miss them already. Auntie Grace arrives later tonight and Auntie Lala arrives on Thursday. Our last week here will be quite eventful to say the least!

Monday, May 09, 2005 Woohoo...it keeps getting better. Tiana has been removed from ICU status and we are now able to take her for strolls around the hospital. They are now concentrating on her reflux condition even though she has not had an 'episode' since the surgery. She has acquired the 'hold me' syndrome to where we can not put her down without her shreaking. Auntie Grace is more than happy to hold her 24-7. More happy news to come...

Wednesday, May 11, 2005 I guess as they say, 'No news is good news'. Tiana had her last visit from Dr. Lamberti and he is very happy with how well she has recovered. The PH Probe test results came back NEGATIVE for reflux and as mentioned before, she has NOT had any episodes since her surgery. We look forward to tomorrows 'DC' (discharge) and Auntie Lala's arrival. See & talk to you all soon!

Thursday, May 12, 2005 YIPPEEEEE!!!! Tiana was discharged this morning and we were more than happy to pack her things and head back to the hotel. Auntie Lala arrived safe and sound shortly thereafter. We spent some time at the Stanford Shopping Center (I hated that part) and went out for a Thai food dinner. Tiana was on her best behavior and thoroughly enjoyed the outdoors. Now it's time to get her back on the meds/feeding schedule she was previously on but no longer needing her heart or blood pressure medication, Woohoo!!! Tomorrow we're off to Fisherman's Wharf, we'll be sure to post more pictures too. xoxoxo

Friday, May 13, 2005 Off to Fisherman's Wharf. Tiana slept through the first hour but really enjoyed being outside and upright in her stroller. We took a ride down the 'Crookedest Street' and then headed back to the hotel. Time for a nap and then off to dinner. Aloha for now...

Sunday, May 15, 2005 It's 5am and we're packing up the car and heading to SFIA. Can't wait to get home to warmer weather and begin a healthier life for Tiana! Thank you God for hearing and answering our prayers! God Bless you all!

Monday, May 16, 2005 Home Sweet Home! Ah the humidity...seriously we are so glad to be home. We had quite the welcoming committee greet us at the airport, we love our family! Tiana is a little off schedule however we are now back on her original feeding schedule. She's a little jetlagged (SP?) but all in all she is doing fantastic. TiTi & I fly to Oahu (Kaiser-Moa) tomorrow for a follow-up visit with Dr. Shirai and plan to stop by and visit the NICU. Hopefully we get to meet Little Prince Lucas who has been there since March.

Wednesday, May 25, 2005 Hi Everyone! Well I am happily reporting that Tiana's recovery is going FANTASTIC! Both of her postop appts went well and she now weighs 10lbs 8.5ozs (that's a gain of 1lb 3oz preop). She still has her feeding tube as she refuses to take the bottle (oral aversion). We are working with a specialist on this issue as we want the feeding tube out for good! We just picked up a new swing and thankfully it allows me to get a lot more work done during the day. I promise to keep this website updated as often as possible. Enjoy the new pics.

Thursday, June 16, 2005 Hi everyone! Well, Tiana is now up to 10lbs 10ozs and drinking UP TO 20cc's (out of 60) per feeding. She caught her first cold a couple days ago but is doing much better. She was diagnosed with a HYPOthyroid, which means more meds although I'll be taking her in for another blood test in a week to see how well she's doing on it. Her day to day routine/patterns haven't changed any which is a good sign. Tiana loves the outdoors and we can't wait to take her to the next support group get together so she can go in the pool for the first time. I'll be sure to take pics and post them in the photo gallery.

Saturday, July 16, 2005 Aloha! Tiana continues to surprise us everyday... I've been taking her to the pool a couple times a week and has even gone under water. Her formula intake (orally) has increased to about 40cc's 3 out of 5 times a day and I would guess her weight has also increased. She loves to suck on her little toes and enjoys her 'tummy time'. We just completed the Baby Signs class and am confident that this will help her communicate as she gets older. Until next time... a hui ho

Tuesday, July 19, 2005 Tiana is a whopping 11-lbs 3.6-oz and is now 23-1/2" long. The doctors took her off 2 more meds and now we're hoping to get rid of at least one more. The barium swallow test shows 'mild reflux' but doc says anyone with an NG tube will have mild reflux since the sphincter is unable to completely close around it. This leaves her on only 2 meds but real tiny doses. Hope you all enjoy the updates and photo gallery. Aloha!

Tuesday, July 26, 2005 Fantastic News... Tiana has been without her NG Tube since Sunday after her 11am feeding. Apparently she didn't like having the tube in her airway during her oral feeds. That's all I can think it was. She has been finishing her entire 2oz bottle everytime as well as a bit of veggies or cereal 3x a day. She'll wake up 1 or 2 xs during the night and drink about an oz and fall back asleep. I (we) couldn't be happier!!!! She has been on a smiling crusade for almost 2 weeks now and it brings joy to our hearts to see her so happy and content. More updates to come...

Thursday, September 01, 2005 I can't be happier with how happy & healthy Tiana is. Since her surgery 4 months she is 200% better! I haven't had to take her in to see either Dr's in weeks, so I don't have her weight, but I'm guessing she's probably 12lbs by now. She likes to stand with our our support however she is still too short to reach the floor in her Jumparoo. So until she has better back support (on her own) she'll be ready to jump away on it. xoxoxo

Saturday, September 10, 2005 Hi everyone~ some updates for you... Tiana got her ears pierced last Tuesday and had her first hair cut yesterday. She's looking pretty cute I must say. I also took her into to weigh her as I haven't done that in almost 2 months and as of Wednesday she is 11lbs-14.3oz. We'll celebrate when she breaks the 12lb mark. Her appetite is a healthy one so I guess she's just going to be a petite little princess. We'll be in touch again.

Monday, September 12, 2005 I took Tiana in to see the Dr. today as she has been throwing up at least once a day for the past few days. The doctor says just to be careful not to over feed her as her tummy muscles are still low toned and can only take so much. She was weighed again and FINALLY broke the 12lb mark. She's a whopping 12lbs 3.8ozs... WOOHOOOOOO!!!

Friday, September 23, 2005 I've had to play around with Tiana's food portions as not to over feed her and I think I pretty much have it under control (she only puked once in the last week). She's as happy as she's ever been. If you would like to view some action shots, please visit www.dropshots.com/titi.

Monday, November 07, 2005 Hello everyone! I'm so sorry I haven't written in so long I've been keeping busy with work and attempting to create our own personal website that will allow me to post pics & video clips all on the same website. However, Tiana is progressing developmentally much better than we ever anticipated. She is sitting straight up minutes at a time and enjoys watching her 'baby signs' videos. She is due for her 4 month follow up with her Cardiologist in another 2 weeks and I expect nothing less than an A+. Please visit the attached links located on the HOME page of this website for updated pics & video. God bless you all!

Thursday, November 10, 2005 Effective immediately, I integrated the Costco Photo Center website when you click on 'Tiana's Photo Gallery'. There is also a link on the home page to access the video clip website. ENJOY!

Tuesday, November 22, 2005 Tiana had her first appt in 4 months with Dr. Shirai (cardiologist) and passed with flying colors. An echo-cardiogram was not needed this time but will have to be done some time in June 2006 just to make sure that things look as good as they sound. We look forward to seeing our mainland family for Titi's birthday and Christmas.

Wednesday, January 04, 2006 Happy New Year! We're back from a fun & hectic filled vacation in Cali for the holidays and Titi's 1st birthday celebration. She got to meet ALL of her 7 (+2 new) cousins for the first time (see photo gallery) and they all showed her so much love. We were happy to see everyone and only wish we had more time visit.

Wednesday, January 18, 2006 Aloha everyone! We just had Tiana's annual evaluation with her speech & physical therapists and the only delays we need to work on with Titi are speech & feedings. Remember, she only started drinking from the bottle in July '05. I just started her on 1/2 formula & 1/2 whole milk. Tiana weighs just less than 15lbs and stands 25-1/4" long. Our petite little princess started pulling herself up to stand about 2 weeks ago so I purchased a walker for her however all she does is sit in it right now. She doesn't realize she has control of the walker yet. No pressure and I am certainly not in any hurry for her to start walking yet. My personal goal for her is to walk (assisted) down the aisle as flower girl for Auntie Grace's pending wedding this July '05. Keep your fingers crossed.

Thursday, March 02, 2006 Exciting time... Tiana has started signing 'Baby' & 'Milk'. She has also started bear crawling. No teeth yet, but I think I see a tooth (bottom incisor) attempting to come through (I could be wrong). Anyway, we're very excited with Titi's progress.

Friday, March 10, 2006 Happy 40th Birthday Daddy! What a great birthday gift... Titi can sign Daddy now too. She stands herself up and can take 4 steps with her left foot so she goes in a circle. I'm trying to catch it on video so I can include it on her 'DropShots' website.

Sunday, April 23, 2006 Well well, our little Titi is finally getting in her first tooth (her bottom right front) AND she is taking numerous steps consistently. I even stopped counting. Both her weekly physical & speech therapies are helping tremendously. She can sign milk, baby, hi, bye, daddy/mommy, eat, please, book, more, and ball. We are elated with her continuous progress.

Saturday, June 17, 2006 Tooth Update: She has both her top front teeth and 3-3/4 bottom front teeth (4th one is working its way out).

Sunday, June 25, 2006 Tiana continues to progress in everything she does. She loves walking around investigating everything and everyone around her. We are so pleased with all that she accomplishes in her own time. She touches the hearts of everyone she meets and smiles at all who pass her by.

Thursday, October 05, 2006 Tiana had a speech therapy session with Lucia this morning. They were working on 'Up & Down', how ironic that her first real spoken word is "DOWN". We're so proud!!!!!

Monday, November 06, 2006 Tiana has a wide range of signs she uses to communicate:
Daddy,Mommy,Torey,Jesse,Milk,Eat,More,Baby,Nice,Please,Book,Water,Bath,No,Kiss,Hug/Love,Hat,Cheese,Raisin,Up,Down,Sleep,Phone,Brush,Teeth,Shoes

Thursday, November 09, 2006 Tiana can now drink out of a straw - HURRAY... another goal achieved!!!

Tuesday, December 05, 2006 Tiana makes us laugh, smile & cry on a daily basis. She’s so true to herself - when she claps or smiles or waves she puts her whole body in to it. She commits herself fully to everything she does.

The Diagnosis

2007-04-11T16:36:00.000-10:00

On Monday August 9, 2004 around 10am my husband Dennis and I were called in to meet with the doctor (on-call) to discuss the results of my amnio. I asked if everything was ok and she said, "there's just a little problem". I knew in my heart at that moment my baby could have DS, why else would they want to meet with us in person?

I met Dennis in the clinic parking lot (we were both at work at the time of the call) we hugged eachother and walked in silence to the OB Dept. We were escorted directly into one of the exam rooms and within 5 minutes an unfamiliar woman doctor walked in and sat down with the news.

"Well, unfortunately the amnio results came back positive for down syndrome"

All I can remember hearing were her ramblings about how 'THEY' are prone to alzhiemers, leukemia, heart defects, blah... blah...blah...negative...negative...negative.

She informed us that we had approximately 1 week to make 'a decision' (I was 17 weeks gestation). Somewhere in the midst I asked her what the sex was, and she replied, "it says 'abnormal female karyotype with trisomy 21". I remember hearing Dennis say, "A girl" and then he burst into tears. The dr. left the room after what seemed like hours (it was probably only 15 minutes) and Dennis and I just held eachother in our tears without saying word.

We walked out of that room with the feeling that all eyes were on us. We held eachother one more time before getting into our own cars to head home. I called my parents as did Dennis on the way home. Both our parents were extremely supportive regardless of what decision we would ultimately make. Dennis went straight to bed out of pure emotional exhaustion and I headed straigh for the internet.

We were flown to Oahu to meet with the perinatologist a couple of days later - he was FANTASTIC!!! We actually had almost 3 weeks to 'make a decision' of which I researched, prayed, spoke with family & friends, and prayed more. It was the unknown that scared us (especially my darling Dennis) and we had to trust God that He would not give us anything that we could not handle. He kept his promise...