https://lifebyemmett.com/2021/04/11/celebrating-emmetts-5th-birthday/https://lifebyemmett.com/wp-content/uploads/2021/04/img_6742-copy.jpgIMG_6742 - Copyhttps://lifebyemmett.com/wp-content/uploads/2021/04/img_6742.jpgIMG_67422021-04-11T14:03:29+00:00monthlyhttps://lifebyemmett.com/2021/02/18/a-year-later/https://lifebyemmett.com/wp-content/uploads/2021/02/3m8a3610.jpg3M8A3610https://lifebyemmett.com/wp-content/uploads/2021/02/img_0386.jpgIMG_03862021-02-19T02:10:01+00:00monthlyhttps://lifebyemmett.com/2020/09/18/emmetts-last-days/2020-09-24T22:38:02+00:00monthlyhttps://lifebyemmett.com/2020/08/18/in-memory-of-emmett-jordan-nguyen/2020-12-29T03:42:21+00:00monthlyhttps://lifebyemmett.com/2020/01/22/blog-hiatus/https://lifebyemmett.com/wp-content/uploads/2020/01/dsc_3059.jpgDSC_30592020-02-07T07:15:25+00:00monthlyhttps://lifebyemmett.com/2019/06/10/and-the-award-for-our-second-longest-hospital-stay-so-far/https://lifebyemmett.com/wp-content/uploads/2019/06/img_6057.jpgIMG_60572019-07-25T23:08:25+00:00monthlyhttps://lifebyemmett.com/contact/https://lifebyemmett.com/wp-content/uploads/2017/02/person-smartphone-office-table.jpegPlaceholder Image2019-04-25T17:33:30+00:00weekly0.6https://lifebyemmett.com/2019/04/24/our-charles-schwab-own-your-tomorrow-video/https://lifebyemmett.com/wp-content/uploads/2019/04/img_1206.jpgIMG_1206https://lifebyemmett.com/wp-content/uploads/2019/04/img_2095.jpgIMG_2095https://lifebyemmett.com/wp-content/uploads/2019/04/img_2098.jpgIMG_2098https://lifebyemmett.com/wp-content/uploads/2019/04/cs-screenshot.jpgCS Screenshot2019-05-20T21:58:20+00:00monthlyhttps://lifebyemmett.com/2018/10/03/summer-of-2018/https://lifebyemmett.com/wp-content/uploads/2018/10/img_1206.jpgIMG_1206Day 1 of shootinghttps://lifebyemmett.com/wp-content/uploads/2018/10/img_2095.jpgIMG_2095Creative production view angleshttps://lifebyemmett.com/wp-content/uploads/2018/10/img_2160.jpgIMG_2160Stealing mama's pregnancy pillowhttps://lifebyemmett.com/wp-content/uploads/2018/10/img_1238.jpegIMG_1238Fresh new haircut but he already needs another!https://lifebyemmett.com/wp-content/uploads/2018/10/img_2218.jpgIMG_2218Sleepy smileshttps://lifebyemmett.com/wp-content/uploads/2018/10/img_2238.jpgIMG_2238https://lifebyemmett.com/wp-content/uploads/2018/10/img_2238-copy.jpgIMG_2238 - CopyFeeling not so great at the hospitalhttps://lifebyemmett.com/wp-content/uploads/2018/10/img_2338.jpgIMG_2338His smiles!! <3 <3https://lifebyemmett.com/wp-content/uploads/2018/10/img_2368.jpgIMG_2368Enjoying a nice day out :)https://lifebyemmett.com/wp-content/uploads/2018/10/org_dsc06792.jpgORG_DSC06792Kisses from mama2019-03-01T14:28:09+00:00monthlyhttps://lifebyemmett.com/piga-research-projects/2018-09-24T17:41:44+00:00weekly0.6https://lifebyemmett.com/about-emmetts-piga-mutation/2018-09-24T17:18:07+00:00weekly0.6https://lifebyemmett.com/2018/05/13/happy-mama-day/https://lifebyemmett.com/wp-content/uploads/2018/05/img_0436.jpgIMG_04362018-10-05T20:42:10+00:00monthlyhttps://lifebyemmett.com/2018/04/15/one-week-left/https://lifebyemmett.com/wp-content/uploads/2018/04/img_0919.jpgIMG_09192018-04-15T02:18:40+00:00monthlyhttps://lifebyemmett.com/2018/04/08/our-research-project-w-the-chow-lab/https://lifebyemmett.com/wp-content/uploads/2018/04/chow-lab.jpgChow Lab2018-04-10T03:49:20+00:00monthlyhttps://lifebyemmett.com/2018/04/06/emmetts-turning-two/https://lifebyemmett.com/wp-content/uploads/2018/04/img_0439-copy.jpgIMG_0439 - CopyLookin' like a toddler here! https://lifebyemmett.com/wp-content/uploads/2018/04/img_0514.jpgIMG_0514Loving daddy hugs.https://lifebyemmett.com/wp-content/uploads/2018/04/img_0532.jpgIMG_0532ZZzzzzZZzhttps://lifebyemmett.com/wp-content/uploads/2018/04/img_0629.jpgIMG_0629Thank you Lauren... I love seeing my name in lights. ;)https://lifebyemmett.com/wp-content/uploads/2018/04/img_0711.jpgIMG_0711Shortly after he got over his flu. <3https://lifebyemmett.com/wp-content/uploads/2018/04/img_1035.jpgIMG_1035His favorite is being held.https://lifebyemmett.com/wp-content/uploads/2018/04/img_0772.jpgIMG_0772https://lifebyemmett.com/wp-content/uploads/2018/04/img_1033.jpgIMG_1033Thank you Ellen for my light-up blocks!!https://lifebyemmett.com/wp-content/uploads/2018/04/img_8765.jpgIMG_87654 days before Emmett was born... everyone kept asking if I was having twins!https://lifebyemmett.com/wp-content/uploads/2018/04/img_8834.jpgIMG_8834First day in the NICU. It was so hard seeing our tiny baby covered in wires and barely able to make a sound.2018-04-06T22:30:41+00:00monthlyhttps://lifebyemmett.com/about/https://lifebyemmett.com/wp-content/uploads/2017/02/img_3642.jpgimg_3642https://lifebyemmett.com/wp-content/uploads/2017/02/stairs-lights-abstract-bubbles1.jpgPlaceholder Image2018-03-17T06:41:34+00:00weekly0.6https://lifebyemmett.com/2018/03/01/our-first-cdg-conference/https://lifebyemmett.com/wp-content/uploads/2018/02/img_0546.jpgIMG_0546So glad we were able to meet Dr. Murakami. Purely coincidental she had a poster at the poster session right next to us. :)https://lifebyemmett.com/wp-content/uploads/2018/02/img_0551.jpgIMG_0551Matt Might giving a lecture at the conference.https://lifebyemmett.com/wp-content/uploads/2018/02/20180224_133904.jpg20180224_133904Post lunch at the Dana in San Diego.https://lifebyemmett.com/wp-content/uploads/2018/02/img_0455.jpegIMG_0455https://lifebyemmett.com/wp-content/uploads/2018/02/img_0555.jpgIMG_0555In medicine, zebras are used to describe rare diseases or conditions because medical students are taught, "When you hear the sound of hooves, think horses, not zebras.” Emmett is a zebra.https://lifebyemmett.com/wp-content/uploads/2018/02/img_0558.jpgIMG_0558https://lifebyemmett.com/wp-content/uploads/2018/02/img_0561.jpgIMG_0561Emmett joining us at the conference on the last day.https://lifebyemmett.com/wp-content/uploads/2018/02/img_0565.jpgIMG_0565Meeting the star of the show, Dr. Hudson Freeze. Thanks to him and his team for putting on a terrific conference.https://lifebyemmett.com/wp-content/uploads/2018/02/img_0566.jpgIMG_0566First place! Just kidding. That's not how it works.2018-03-01T00:24:58+00:00monthlyhttps://lifebyemmett.com/2018/02/11/emmetts-new-little-room-a-diy-for-cvi-parents/https://lifebyemmett.com/wp-content/uploads/2018/02/img_0236.jpgIMG_0236https://lifebyemmett.com/wp-content/uploads/2018/02/img_0237.jpgIMG_0237https://lifebyemmett.com/wp-content/uploads/2018/02/img_0239.jpgIMG_0239https://lifebyemmett.com/wp-content/uploads/2018/02/img_0240.jpgIMG_0240https://lifebyemmett.com/wp-content/uploads/2018/02/img_0241.jpgIMG_0241https://lifebyemmett.com/wp-content/uploads/2018/02/img_0242.jpgIMG_0242https://lifebyemmett.com/wp-content/uploads/2018/02/img_0243.jpgIMG_0243https://lifebyemmett.com/wp-content/uploads/2018/02/img_0244.jpgIMG_0244https://lifebyemmett.com/wp-content/uploads/2018/02/img_0298.jpgIMG_0298https://lifebyemmett.com/wp-content/uploads/2018/02/img_0299.jpgIMG_02992018-06-15T19:34:33+00:00monthlyhttps://lifebyemmett.com/2018/01/26/a-new-year/https://lifebyemmett.com/wp-content/uploads/2018/01/img_9274.jpgIMG_9274In his special tomato chair, probably the only thing he'll sit in for an extended periodhttps://lifebyemmett.com/wp-content/uploads/2018/01/img_0086.jpgIMG_0086During a family outing to the Long Beach Aquarium. :)https://lifebyemmett.com/wp-content/uploads/2018/01/img_0210.jpgIMG_0210Wearing one of his Xmas gifts, Captain America pjs!https://lifebyemmett.com/wp-content/uploads/2018/01/img_0218.jpgIMG_0218During one of his therapy sessions2018-01-26T20:17:53+00:00monthlyhttps://lifebyemmett.com/2017/11/23/in-pursuit-of-a-treatment/https://lifebyemmett.com/wp-content/uploads/2017/11/img_8763.jpgIMG_8763https://lifebyemmett.com/wp-content/uploads/2017/11/em.jpgEMhttps://lifebyemmett.com/wp-content/uploads/2017/11/approaches.pngApproaches2017-12-13T20:47:58+00:00monthlyhttps://lifebyemmett.com/2017/10/28/living-the-hospital-life/https://lifebyemmett.com/wp-content/uploads/2017/10/img_8280.jpgIMG_8280https://lifebyemmett.com/wp-content/uploads/2017/10/img_8225.jpgIMG_8225https://lifebyemmett.com/wp-content/uploads/2017/10/img_8207.jpgIMG_8207His face <3https://lifebyemmett.com/wp-content/uploads/2017/10/img_8193.jpgIMG_8193https://lifebyemmett.com/wp-content/uploads/2017/10/img_8088-e1509207596211.jpgIMG_8088Sick with rhinovirus... had to get covered up to take a trip to imaging.https://lifebyemmett.com/wp-content/uploads/2017/10/img_8384.jpgIMG_8384<3 his happy smiles when asleephttps://lifebyemmett.com/wp-content/uploads/2017/10/img_8344.jpgIMG_8344Trying to keep him entertained in his bedhttps://lifebyemmett.com/wp-content/uploads/2017/10/img_8343.jpgIMG_8343Resting in the hospital room2017-10-29T04:17:09+00:00monthlyhttps://lifebyemmett.com/2017/07/31/nih-wrap-up-and-another-hospital-admission/https://lifebyemmett.com/wp-content/uploads/2017/07/img_7167.jpgIMG_7167Back in the PICUhttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7166.jpgIMG_7166Respiratory treatments; this one is called Cough Assisthttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7156.jpgIMG_7156Heading back to LA; baby's third trip and first time zone change!https://lifebyemmett.com/wp-content/uploads/2017/07/img_7150.jpgIMG_7150Hanging out at Dulles in our LA outfit; the people at LAX found it more amusing than the people in D.C.https://lifebyemmett.com/wp-content/uploads/2017/07/img_7143.jpgIMG_7143Emmett's cells in a test tubehttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7139.jpgIMG_7139He didn't like the lidocaine but promptly fell asleep and stayed asleep for the actual biopsyhttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7119.jpgIMG_7119Smiles for daddyhttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7096.jpgIMG_7096Happy times in the waiting room2017-08-03T13:06:34+00:00monthlyhttps://lifebyemmett.com/2017/07/27/days-2-3-at-nih/https://lifebyemmett.com/wp-content/uploads/2017/07/img_7090.jpgIMG_7090His happiness expired about 20 minutes into the echohttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7088.jpgIMG_7088Happily waiting for our first appointment of the dayhttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7087.jpgIMG_7087Each room is assigned a personal fridge with a codehttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7084.jpgIMG_7084Lobbyhttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7052.jpgIMG_7052Children's Inn outdoor play areahttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7035.jpgIMG_7035Children's Inn outdoor play areahttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7030.jpgIMG_7030The outside of NIH's facilityhttps://lifebyemmett.com/wp-content/uploads/2017/07/img_7029.jpgIMG_7029https://lifebyemmett.com/wp-content/uploads/2017/07/img_7026.jpgIMG_7026https://lifebyemmett.com/wp-content/uploads/2017/07/img_7016.jpgIMG_7016The X-ray technician at work.2017-08-03T12:59:13+00:00monthlyhttps://lifebyemmett.com/2017/07/25/day-1-at-the-nih/https://lifebyemmett.com/wp-content/uploads/2017/07/img_6983.jpgIMG_6983Me... by the end of the day after not sleeping the night before.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6982.jpgIMG_6982Baby at the bistro (in Children's Inn).https://lifebyemmett.com/wp-content/uploads/2017/07/img_6972.jpgIMG_6972https://lifebyemmett.com/wp-content/uploads/2017/07/img_6964.jpgIMG_6964A look at delirious, happy baby.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6962.jpgIMG_6962QSweat, measuring his ability to sweat. https://lifebyemmett.com/wp-content/uploads/2017/07/img_6960.jpgIMG_6960Waiting for his blood draw. Of course, he doesn't know that.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6951.jpgIMG_6951Practicing tummy time during our down time.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6913.jpgIMG_6913Children's Inn has an awesome outdoor area.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6905.jpgIMG_6905They've managed to make it cozy and welcoming. So glad it's available for our stay!https://lifebyemmett.com/wp-content/uploads/2017/07/img_6903.jpgIMG_6903Our digs for the week.2017-07-26T21:49:32+00:00monthlyhttps://lifebyemmett.com/2017/07/19/nih-clinical-study/https://lifebyemmett.com/wp-content/uploads/2017/07/img_6799.jpgIMG_6799Here is Emmett getting a cast made for his orthotics. We hope this will help strengthen his legs so he can learn to stand eventually.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6798.jpgIMG_6798He seems pretty pleased about his new haircut.... mom and dad did an OK job! :-)https://lifebyemmett.com/wp-content/uploads/2017/07/img_6534.jpgIMG_6534Emmett went into a regular swimming pool for the first time and didn't seem to mind it. Probably felt good with the 100+ degree heat.https://lifebyemmett.com/wp-content/uploads/2017/07/img_6190.jpgIMG_6190Emmett had fun on his first trip to Disneyland! We actually lasted several hours and went on five rides. =D2017-07-19T20:24:17+00:00monthlyhttps://lifebyemmett.com/2017/05/24/our-intro-to-the-keto-diet-my-running-diary/https://lifebyemmett.com/wp-content/uploads/2017/05/img_5675.jpgIMG_5675Ultrasounds > Blood draws. He actually dozed off for a few seconds during the abdominal ultrasound.https://lifebyemmett.com/wp-content/uploads/2017/05/img_5673.jpgIMG_5673He's always pretty pleased with himself after he has a large poop.https://lifebyemmett.com/wp-content/uploads/2017/05/img_5671.jpgIMG_5671The hospital tries to keep the kids entertained, like this music therapy group that comes sometimes. We heard them down the hall singing Taylor Swift. :) They decided on the Beatles for us. <3https://lifebyemmett.com/wp-content/uploads/2017/05/img_5653.jpgIMG_5653I forgot how tiny he still is, though he's grown a lot over the past 5 months!https://lifebyemmett.com/wp-content/uploads/2017/05/img_5621.jpgIMG_5621A scale to measure all the ingredients since it has to be EXACT.https://lifebyemmett.com/wp-content/uploads/2017/05/img_5620.jpgIMG_5620The three things that go into the keto diet formula... we're slowly adding more KetoCal until we get to the 3:1 ratio.https://lifebyemmett.com/wp-content/uploads/2017/05/img_5616.jpgIMG_5616A kind mother donated one of these to each family starting keto. Comes with a cooler, scale and giftcard. Super thoughtful!https://lifebyemmett.com/wp-content/uploads/2017/05/img_5614.jpgIMG_56142017-05-29T01:26:24+00:00monthlyhttps://lifebyemmett.com/2017/05/26/understanding-that-sometimes-it-might-not-be-ok/2017-05-26T20:39:38+00:00monthlyhttps://lifebyemmett.com/2017/05/22/getting-a-feeding-tube/https://lifebyemmett.com/wp-content/uploads/2017/05/img_3942.jpgIMG_3942https://lifebyemmett.com/wp-content/uploads/2017/05/img_5086.jpgIMG_5086What his feeding pump looks like... we have an Infinity pump.https://lifebyemmett.com/wp-content/uploads/2017/05/img_2331.jpgIMG_2331What an NG tube looks like... this was just a few days before his surgery.https://lifebyemmett.com/wp-content/uploads/2017/05/img_1004.jpgIMG_1004Back in the day when we used to feed Emmetthttps://lifebyemmett.com/wp-content/uploads/2017/05/img_2521.jpgIMG_25212017-05-22T23:48:12+00:00monthlyhttps://lifebyemmett.com/2017/05/22/visiting-seattle-childrens-hospital/https://lifebyemmett.com/wp-content/uploads/2017/05/img_5151.jpgIMG_5151https://lifebyemmett.com/wp-content/uploads/2017/05/img_5150.jpgIMG_5150Seattle Children's Hospitalhttps://lifebyemmett.com/wp-content/uploads/2017/05/img_5148.jpgIMG_5148https://lifebyemmett.com/wp-content/uploads/2017/05/img_5141.jpgIMG_5141In the hospital's courtyard waiting for him to pee =/https://lifebyemmett.com/wp-content/uploads/2017/05/img_5139.jpgIMG_5139Post blood draw, which is never fun for him (or anyone)https://lifebyemmett.com/wp-content/uploads/2017/05/img_5130.jpgIMG_5130https://lifebyemmett.com/wp-content/uploads/2017/05/img_5128.jpgIMG_51282017-05-22T23:45:18+00:00monthlyhttps://lifebyemmett.com/2017/04/24/new-challenges-but-freed-from-the-hospital/https://lifebyemmett.com/wp-content/uploads/2017/04/img_0670.jpgIMG_0670Happy easter!https://lifebyemmett.com/wp-content/uploads/2017/04/img_0663.jpgIMG_0663Happy easter!https://lifebyemmett.com/wp-content/uploads/2017/04/img_0488.jpgIMG_0488Emmett celebrated his birthday over a couple different weekends; thanks everyone who came out!https://lifebyemmett.com/wp-content/uploads/2017/04/img_0515.jpgIMG_0515Another picture from one of his happy moods because I try to capture as many as I canhttps://lifebyemmett.com/wp-content/uploads/2017/04/img_0462.jpgIMG_0462Party look #1https://lifebyemmett.com/wp-content/uploads/2017/04/img_4743.jpgIMG_4743One of his happy moodshttps://lifebyemmett.com/wp-content/uploads/2017/04/img_4450.jpgIMG_4450He got his first haircut in the hospital by daddyhttps://lifebyemmett.com/wp-content/uploads/2017/04/img_0568.jpgIMG_0568Party look #2https://lifebyemmett.com/wp-content/uploads/2017/04/img_0566.jpgIMG_05662017-05-11T00:20:46+00:00monthlyhttps://lifebyemmett.com/2017/03/27/back-in-the-hospital/https://lifebyemmett.com/wp-content/uploads/2017/03/img_4379.jpgIMG_4379A mobile made by the hospital's Child Life Services volunteers. We told them he seems to like yellow so they made sure he has plenty to look at. :-)https://lifebyemmett.com/wp-content/uploads/2017/03/img_4373.jpgIMG_4373Our hospital room at UCLA Mattel's Santa Monica hospital. Tubes and machines beeping 24/7 get a little tiresome. :/2017-03-27T18:05:17+00:00monthlyhttps://lifebyemmett.com/2017/03/14/thanks-and-my-random-thoughts/https://lifebyemmett.com/wp-content/uploads/2017/03/img_4228.jpgIMG_4228https://lifebyemmett.com/wp-content/uploads/2017/03/img_4227.jpgIMG_4227https://lifebyemmett.com/wp-content/uploads/2017/03/img_4202.jpgIMG_4202https://lifebyemmett.com/wp-content/uploads/2017/03/img_4122.jpgIMG_4122Steve was out of town for work for a few days so we had to send him daily pictures to let him know how we were doing! Here's one. =)https://lifebyemmett.com/wp-content/uploads/2017/03/img_4096.jpgIMG_4096We put a swing up in our backyard. He didn't hate it. ;)https://lifebyemmett.com/wp-content/uploads/2017/03/img_4025.jpgIMG_4025And this is the Chicco Urban. Thanks to his physical therapist for doing some research on his behalf and recommending this!https://lifebyemmett.com/wp-content/uploads/2017/03/img_4023.jpgIMG_4023We got a new car seat and stroller for Emmett since he's starting to outgrow his infant stuff. Challenge? Getting stuff that offers enough support for his low muscle tone. This is the Maxi Cosi 85. So far, so good!2017-03-14T22:20:40+00:00monthlyhttps://lifebyemmett.com/2017/02/21/emmetts-journey-diagnosis/2018-03-01T00:27:37+00:00monthlyhttps://lifebyemmett.com/2017/02/21/emmetts-first-time-flying/2017-02-21T20:55:44+00:00monthlyhttps://lifebyemmett.comdaily1.02021-04-11T14:03:29+00:00