Friday, October 12, 2007

Special Needs Team Perform in Cheerleading Competition

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

click here for full story

Wednesday, September 19, 2007

Difficult Diagnosis

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

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).

Friday, August 31, 2007

Because they're typical...

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..
menace to society

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?

Wednesday, April 18, 2007

Keeping Kids Healthy: Raising A Child With Down Syndrome

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

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.

Thursday, April 12, 2007


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 ( "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 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

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:

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.

Wednesday, April 11, 2007

The Diagnosis

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...