1 00:01:05,280 --> 00:01:06,982 >> AND IF YOU COULD ALSO 2 00:01:06,982 --> 00:01:11,286 MAKE SURE YOU LET US KNOW IF 3 00:01:11,286 --> 00:01:13,088 YOU HAVE FEEDBACK IN THE 4 00:01:13,088 --> 00:01:14,222 QUESTION, LET US KNOW THAT 5 00:01:14,222 --> 00:01:16,758 SO THAT WOULD BE HELPFUL. 6 00:01:16,758 --> 00:01:18,327 THANKS VERY MUCH. 7 00:01:18,327 --> 00:01:19,294 GO AHEAD, KELLY. 8 00:01:19,294 --> 00:01:21,630 >> NO PROBLEM, I AM KELLY 9 00:01:21,630 --> 00:01:24,266 KING FROM THE NATIONAL 10 00:01:24,266 --> 00:01:27,135 INSTITUTE OF DEAFNESS AND 11 00:01:27,135 --> 00:01:28,036 OTHER. 12 00:01:28,036 --> 00:01:29,237 >> >>>: AND NICHD HAS BEEN 13 00:01:29,237 --> 00:01:30,005 SUPPORTING THE CLINICAL 14 00:01:30,005 --> 00:01:31,673 TRIAL YOU WILL BE HEARING 15 00:01:31,673 --> 00:01:33,909 FROM TODAY ON Dr. HARTNICK 16 00:01:33,909 --> 00:01:36,745 SO IT IS A PLEASURE TO 17 00:01:36,745 --> 00:01:38,547 INTRODUCE TODAY'S SPEAKER. 18 00:01:38,547 --> 00:01:40,949 WITH MORE THAN 15 YEARS 19 00:01:40,949 --> 00:01:49,157 EXPERIENCE IN PEDIATRIC 20 00:01:49,157 --> 00:01:51,059 OTOLARYNGOLOGY AND PEDIATRIC 21 00:01:51,059 --> 00:01:53,061 AIRWAY VOICE SPECIAL 22 00:01:53,061 --> 00:01:54,830 SWELLING CENTER. 23 00:01:54,830 --> 00:01:57,799 Dr. HARTNICK HAS BEEN 24 00:01:57,799 --> 00:01:58,867 SPEAKER AT REGIONAL, 25 00:01:58,867 --> 00:02:00,836 NATIONAL AND INTERNATIONAL 26 00:02:00,836 --> 00:02:02,003 MEETINGS AND PUBLISHED OVER 27 00:02:02,003 --> 00:02:04,005 10 PAPERS IN THE FIELD. 28 00:02:04,005 --> 00:02:07,008 HE SERVED AS DIRECTOR ON THE 29 00:02:07,008 --> 00:02:08,844 BOARD OF DIRECTORS AND 30 00:02:08,844 --> 00:02:09,878 VICE-CHAIR ON THE OUTCOMES 31 00:02:09,878 --> 00:02:16,284 OF THE DEPARTMENT OF 32 00:02:16,284 --> 00:02:16,718 OTOLARYGOLOGY. 33 00:02:16,718 --> 00:02:18,587 HE IS FEATURED IN THE 34 00:02:18,587 --> 00:02:22,157 JOURNAL OF VOICE AND OTHER 35 00:02:22,157 --> 00:02:24,159 AD HOC ORGANIZATIONS. 36 00:02:24,159 --> 00:02:27,129 HIS CLINICAL INTERESTS 37 00:02:27,129 --> 00:02:29,831 INCLUDE PEDIATRIC AIRWAY AND 38 00:02:29,831 --> 00:02:33,702 HIS PRIMARY INTERESTS 39 00:02:33,702 --> 00:02:36,338 INCLUDE THE MATURATION OF 40 00:02:36,338 --> 00:02:37,973 PEDIATRIC VOCAL FOLDS AND 41 00:02:37,973 --> 00:02:38,440 SURGERY. 42 00:02:38,440 --> 00:02:48,917 HE IS ALSO THE CHAIR IN 43 00:02:50,152 --> 00:02:51,520 OTOLARYGOLOGY VOICE SURGERY. 44 00:02:51,520 --> 00:02:52,454 SO PLEASED TO HAVE YOU WITH 45 00:02:52,454 --> 00:02:54,456 US TODAY AND I WILL TURN IT 46 00:02:54,456 --> 00:02:55,824 OVER TO YOU. 47 00:02:55,824 --> 00:02:57,659 >> THANKS, KELLY AND I WILL 48 00:02:57,659 --> 00:03:00,061 TELL YOU OUR FIRST GOAL, I 49 00:03:00,061 --> 00:03:06,334 MYSELF MESS UP OTOLARYGOLOG 50 00:03:06,334 --> 00:03:09,271 Y OVER TIME SO YOU GOT IT 51 00:03:09,271 --> 00:03:10,472 AND PRODUCTION CAN SOMETIMES 52 00:03:10,472 --> 00:03:12,040 BE THE HARDEST PART. 53 00:03:12,040 --> 00:03:14,476 I AM REALLY GLAD TO BE WITH 54 00:03:14,476 --> 00:03:16,745 EVERYBODY TODAY AS WE TALK 55 00:03:16,745 --> 00:03:17,913 ABOUT OUR WORK TOGETHER 56 00:03:17,913 --> 00:03:19,614 BECAUSE THIS IS NOT REALLY 57 00:03:19,614 --> 00:03:21,049 MY WORK BUT OUR WORK. 58 00:03:21,049 --> 00:03:23,185 THIS IS A TEAM SPORT. 59 00:03:23,185 --> 00:03:27,989 AND ALONG WITH MY FELLOW 60 00:03:27,989 --> 00:03:29,791 INVESTIGATORS, Dr. RYAN 61 00:03:29,791 --> 00:03:31,026 SATGOW WHO RUNS THE PROGRAM 62 00:03:31,026 --> 00:03:32,461 AT MASS GENERAL AND THE 63 00:03:32,461 --> 00:03:34,329 SLEEP TEAM, JUST AN 64 00:03:34,329 --> 00:03:35,864 ENORMOUS -- THIS IS A 65 00:03:35,864 --> 00:03:36,932 NATIONAL ENDEAVOR AND 66 00:03:36,932 --> 00:03:40,168 SUPPORTED BY THE NIH AND WHO 67 00:03:40,168 --> 00:03:41,269 HAVE HELPED EVERY STEP ALONG 68 00:03:41,269 --> 00:03:41,937 THE WAY. 69 00:03:41,937 --> 00:03:43,638 SO WITH THAT SAID, I WILL 70 00:03:43,638 --> 00:03:48,877 TALK TO YOU ABOUT OUR 71 00:03:48,877 --> 00:03:49,778 EXPERIENCE WITH 72 00:03:49,778 --> 00:03:50,979 PEDIATRIC-FOE GLOSS SALARY 73 00:03:50,979 --> 00:03:52,314 STIMULATION AND WHERE WE ARE 74 00:03:52,314 --> 00:03:53,849 AND I THOUGHT I WOULD TALK 75 00:03:53,849 --> 00:03:55,984 ABOUT THE STUDY ITSELF, TO 76 00:03:55,984 --> 00:03:58,286 REALLY SET THE STAGE OF WHY 77 00:03:58,286 --> 00:04:02,691 WE'RE TALKING ABOUT THIS 78 00:04:02,691 --> 00:04:02,991 AND -- 79 00:04:02,991 --> 00:04:03,792 >> Dr. HARTNICK? 80 00:04:03,792 --> 00:04:05,760 SORRY TO INTERRUPT YOU BUT 81 00:04:05,760 --> 00:04:07,562 YOU ARE NOT SHARING YOUR 82 00:04:07,562 --> 00:04:09,130 SCREEN AND NEED TO SHARE 83 00:04:09,130 --> 00:04:10,165 YOUR SLIDES. 84 00:04:10,165 --> 00:04:20,642 >> YEAH, THAT WOULD BE 85 00:04:29,918 --> 00:04:31,553 HELPFUL, HOLD ON. 86 00:04:31,553 --> 00:04:32,487 >> AM I NOW? 87 00:04:32,487 --> 00:04:32,988 >> YES. 88 00:04:32,988 --> 00:04:35,257 >> CAN YOU SEE THE FULL 89 00:04:35,257 --> 00:04:36,725 SCREEN? 90 00:04:36,725 --> 00:04:37,325 >> YES WE CAN. 91 00:04:37,325 --> 00:04:38,960 >> SO THIS IS NOT SOMETHING 92 00:04:38,960 --> 00:04:40,629 NEW TO ANYBODY ON THIS ZOOM 93 00:04:40,629 --> 00:04:43,265 CALL IN THE SENSE THAT 94 00:04:43,265 --> 00:04:44,966 CHILDREN WITH DOWN SYNDROME 95 00:04:44,966 --> 00:04:47,536 HAVE ISSUES WITH SLEEP 96 00:04:47,536 --> 00:04:47,836 APNEA. 97 00:04:47,836 --> 00:04:52,374 AND THEY WALK DOWN A VERY 98 00:04:52,374 --> 00:04:54,576 SIMILAR ROAD THAT CHILDREN 99 00:04:54,576 --> 00:04:55,977 WITHOUT DOWN SYNDROME HAVE 100 00:04:55,977 --> 00:04:58,213 WHO HAVE SLEEP APNEA, THAT 101 00:04:58,213 --> 00:04:59,414 WE OFTEN START THINKING 102 00:04:59,414 --> 00:05:04,886 ABOUT COULD IT BE THEIR 103 00:05:04,886 --> 00:05:06,321 TONSILS AND ADENOIDS ARE 104 00:05:06,321 --> 00:05:07,689 DIVERGED AND SHOULD WE 105 00:05:07,689 --> 00:05:08,323 REMOVE THEM. 106 00:05:08,323 --> 00:05:11,660 AND MAY BE CHILDREN WHO HAVE 107 00:05:11,660 --> 00:05:15,664 THEIR TONSILS AND ADENOIDS 108 00:05:15,664 --> 00:05:17,699 REMOVED HAVE THEIR SLEEP 109 00:05:17,699 --> 00:05:21,202 APNEA TREATED. 110 00:05:21,202 --> 00:05:23,705 CHILDREN WITHOUT THE DOWN 111 00:05:23,705 --> 00:05:24,639 SYNDROME PRIMARILY HAVE A 112 00:05:24,639 --> 00:05:26,608 LONG TONGUE OR TONGUE BASE 113 00:05:26,608 --> 00:05:28,643 AND THERE ARE OTHER ISSUES 114 00:05:28,643 --> 00:05:31,546 BUT PRIMELY WITH THE TONGUE, 115 00:05:31,546 --> 00:05:34,049 THE PERSISTENCE OF SLEEP 116 00:05:34,049 --> 00:05:38,853 APNEA DESPITE THE TONSIL AND 117 00:05:38,853 --> 00:05:41,890 ADENECTOMY IS A DIFFICULTY. 118 00:05:41,890 --> 00:05:45,894 AND THIS IS KNOWN THROUGH A 119 00:05:45,894 --> 00:05:48,430 LONG TIME CARING FOR KIDS 120 00:05:48,430 --> 00:05:51,066 WITH DOWN SYNDROME AND 121 00:05:51,066 --> 00:05:52,601 REALLY THINKING AS A TEAM 122 00:05:52,601 --> 00:05:53,902 THROUGH THE PRO GENESIS OF 123 00:05:53,902 --> 00:05:55,704 WORK AND THEN THE STUDY 124 00:05:55,704 --> 00:05:56,037 ITSELF. 125 00:05:56,037 --> 00:05:59,007 WHAT I WOULD SAY IS THAT AS 126 00:05:59,007 --> 00:06:08,316 WAS THE CASE WITH THE FIRST 127 00:06:08,316 --> 00:06:09,851 CHILDHOOD PRIOR TO THIS 128 00:06:09,851 --> 00:06:12,387 PARTICULAR DEVICE AND 129 00:06:12,387 --> 00:06:14,589 IMPLANTATION, WE WERE DOING 130 00:06:14,589 --> 00:06:17,826 SURGERIES WITH TONGUE BASE 131 00:06:17,826 --> 00:06:20,261 REDUCTION WHICH WE'RE STILL 132 00:06:20,261 --> 00:06:22,130 DOING AND EVEN TRACHEOTOMY 133 00:06:22,130 --> 00:06:25,333 AND THE GOAL OF THAT WAS TO 134 00:06:25,333 --> 00:06:26,668 REMOVE THE TRACHEOTOMY. 135 00:06:26,668 --> 00:06:29,204 I MENTION CPA P AS POSITIVE 136 00:06:29,204 --> 00:06:31,339 PRESSURE AND CLEARLY IT CAN 137 00:06:31,339 --> 00:06:32,040 BE TOLERATED. 138 00:06:32,040 --> 00:06:34,242 IT IS AN ABSOLUTE TREATMENT 139 00:06:34,242 --> 00:06:36,511 AND CAN BE VERY HELPFUL. 140 00:06:36,511 --> 00:06:37,679 IT TREATS THE PROBLEM AS 141 00:06:37,679 --> 00:06:39,648 LONG AS YOU WEAR THE MASK 142 00:06:39,648 --> 00:06:40,515 AND THAT IS WHERE MANY 143 00:06:40,515 --> 00:06:44,319 PEOPLE HAVE ISSUES WITH THE 144 00:06:44,319 --> 00:06:44,953 TERMS OF COMPLIANCE. 145 00:06:44,953 --> 00:06:46,855 WHEN I PUT THIS SLIDE HERE 146 00:06:46,855 --> 00:06:48,923 TO SHOW THAT THERE ARE MANY 147 00:06:48,923 --> 00:06:51,126 CHILDREN EACH YEAR WHO ARE 148 00:06:51,126 --> 00:06:52,360 BORN WITH DOWN SYNDROME AND 149 00:06:52,360 --> 00:06:53,762 AS YOU WALK DOWN THE LINE 150 00:06:53,762 --> 00:06:55,397 FROM THE NUMBER OF KIDS WHO 151 00:06:55,397 --> 00:06:56,498 HAVE DOWN SYNDROME TO THE 152 00:06:56,498 --> 00:06:58,933 NUMBER OF KIDS WHO HAVE 153 00:06:58,933 --> 00:06:59,968 PERSISTENT SLEEP APNEA AND 154 00:06:59,968 --> 00:07:02,871 NUMBER OF CHILDREN WITH 155 00:07:02,871 --> 00:07:11,646 PERSISTENT SLEEP APNEA 156 00:07:11,646 --> 00:07:12,480 DESPITE THE 157 00:07:12,480 --> 00:07:13,548 ADENOTONSILLECTOMIES WITH 158 00:07:13,548 --> 00:07:14,683 CPA P, IT IS A LARGE NUMBER 159 00:07:14,683 --> 00:07:17,419 AND WHEN YOU THINK OF PEOPLE 160 00:07:17,419 --> 00:07:18,520 FROM STATES, COUNTRIES 161 00:07:18,520 --> 00:07:20,321 ACROSS THE WORLD, THESE 162 00:07:20,321 --> 00:07:24,492 NUMBERS VARY DEPENDING ON 163 00:07:24,492 --> 00:07:27,562 WHERE YOU LIVE BUT IT IS NOT 164 00:07:27,562 --> 00:07:28,029 INCONSEQUENTIAL. 165 00:07:28,029 --> 00:07:31,166 MY PARTICULAR ROAD WITH THIS 166 00:07:31,166 --> 00:07:32,300 BEGAN IN 2014 WITH A 167 00:07:32,300 --> 00:07:39,074 PUBLICATION IN THE NEW 168 00:07:39,074 --> 00:07:40,141 ENGLAND JOURNAL, HYPOGLOSSAL 169 00:07:40,141 --> 00:07:41,376 STIMULATION IN ADULTS. 170 00:07:41,376 --> 00:07:42,744 THIS WAS TECHNOLOGY THAT WAS 171 00:07:42,744 --> 00:07:44,646 INITIALLY FUNDED IN PART BY 172 00:07:44,646 --> 00:07:45,547 THE DEPARTMENT OF DEFENSE 173 00:07:45,547 --> 00:07:47,382 BECAUSE IT WAS DIFFICULT FOR 174 00:07:47,382 --> 00:07:51,586 SOLDIERS TO DEPLOY IF THEY 175 00:07:51,586 --> 00:07:56,424 WERE WEARING CPAP VESTS AT 176 00:07:56,424 --> 00:08:01,663 NIGHT SO THIS PARTICULAR 177 00:08:01,663 --> 00:08:03,231 HYPOGLOSSAL IMPLANTATION WAS 178 00:08:03,231 --> 00:08:07,469 PERCEIVED IN THAT LIGHT AND 179 00:08:07,469 --> 00:08:08,470 CENTERED AROUND ADULT 180 00:08:08,470 --> 00:08:09,804 FOCUSED TRIAL. 181 00:08:09,804 --> 00:08:13,174 AND IT INSTRUCTION ME FROM A 182 00:08:13,174 --> 00:08:14,843 PEDIATRIC SITUATION 183 00:08:14,843 --> 00:08:17,112 ESPECIALLY KIDS WITH DOWN 184 00:08:17,112 --> 00:08:20,515 SYNDROME IS IT VARIOUS WITH 185 00:08:20,515 --> 00:08:21,616 CHILDREN WHO HAVE DOWN 186 00:08:21,616 --> 00:08:22,851 SYNDROME AND THE DOWN 187 00:08:22,851 --> 00:08:23,985 SYNDROME MAY CHANGE OVER THE 188 00:08:23,985 --> 00:08:26,988 COURSE OF THEIR LIFE BASED 189 00:08:26,988 --> 00:08:30,558 ON THEIR PHENOTYPE WHEREAS 190 00:08:30,558 --> 00:08:33,995 CHILDREN WITH LARGE TONGUE 191 00:08:33,995 --> 00:08:37,165 BASES SUFFER THROUGHOUT 192 00:08:37,165 --> 00:08:39,367 THEIR LIFE SO THIS IS A 193 00:08:39,367 --> 00:08:43,772 LARGE SITUATION AND THIS IS 194 00:08:43,772 --> 00:08:44,572 LARGELY PICTORAL BUT THE 195 00:08:44,572 --> 00:08:46,775 PREMISE IS THEY HAVE A 196 00:08:46,775 --> 00:08:48,309 SENSOR -- THINK ABOUT A 197 00:08:48,309 --> 00:08:49,644 PACEMAKER, WHICH THIS IS A 198 00:08:49,644 --> 00:08:52,013 FORM OF A PACEMAKER PACING 199 00:08:52,013 --> 00:08:53,581 THE TONGUE THAT SENSES WHEN 200 00:08:53,581 --> 00:08:55,917 THE CHILD IS TRYING TO TAKE 201 00:08:55,917 --> 00:08:59,120 A BREATH AND AT NIGHT DURING 202 00:08:59,120 --> 00:09:02,957 THE TIME ESPECIALLY OF REM 203 00:09:02,957 --> 00:09:04,492 SLEEP WHEN THE MUSCLES RELAX 204 00:09:04,492 --> 00:09:06,628 AND THE TONGUE BASE CAN FALL 205 00:09:06,628 --> 00:09:07,829 BACK AND BE A INSTRUCT. 206 00:09:07,829 --> 00:09:10,231 SO THE CHILD WILL BE TRYING 207 00:09:10,231 --> 00:09:12,333 TO TAKE A BREATH BUT CAN'T 208 00:09:12,333 --> 00:09:18,873 BECAUSE OF THE OBSTRUCTION. 209 00:09:18,873 --> 00:09:21,142 THIS CAN BE A SIGNAL THAT 210 00:09:21,142 --> 00:09:23,378 SENDS IT TO THE PROCESSOR 211 00:09:23,378 --> 00:09:25,113 UNDER THE SKIN WHICH SENDS A 212 00:09:25,113 --> 00:09:27,582 SIGNAL TO THE WIRE THAT GOES 213 00:09:27,582 --> 00:09:29,017 TO THE BRANCHES OF THE NERVE 214 00:09:29,017 --> 00:09:33,621 THAT MOVE THE TONGUE CALLED 215 00:09:33,621 --> 00:09:34,489 YOUR HYPOGLOSSAL NERVE WITH 216 00:09:34,489 --> 00:09:36,591 A CAN YOU HAVE HERE THAT 217 00:09:36,591 --> 00:09:44,098 PUSHES THE TONGUE FORWARD. 218 00:09:44,098 --> 00:09:45,600 HYPOGLOSSAL HAS NERVES WHICH 219 00:09:45,600 --> 00:09:48,169 CAN MOVE YOUR TONGUE 220 00:09:48,169 --> 00:09:50,371 FORWARD, BACKWARD AND 221 00:09:50,371 --> 00:09:51,773 SIDEWAYS SO IT WILL PUT THE 222 00:09:51,773 --> 00:09:52,941 CAN YOU HAVE UNDER THE 223 00:09:52,941 --> 00:09:55,210 TONGUE TO MAKE IT GO FORWARD 224 00:09:55,210 --> 00:09:56,244 AND NOT, INCLUDING THOSE 225 00:09:56,244 --> 00:09:58,746 THAT GO SIDE TO SIDE OR 226 00:09:58,746 --> 00:09:59,280 BACKWARDS. 227 00:09:59,280 --> 00:10:02,317 TO PUT A HUMAN FACE ON THIS 228 00:10:02,317 --> 00:10:05,186 STUDY AND ITS IMPORTANCE, 229 00:10:05,186 --> 00:10:07,922 THIS IS AN 11-YEAR-OLD 230 00:10:07,922 --> 00:10:10,291 DAUGHTER WITH DOWN SYNDROME 231 00:10:10,291 --> 00:10:14,662 WHO HAD SEVERE REFRACTORY 232 00:10:14,662 --> 00:10:18,867 SLEEP APNEA AND THE HYPOXIA 233 00:10:18,867 --> 00:10:20,602 IN CHILDREN GREATER THAN 10 234 00:10:20,602 --> 00:10:23,972 IS SEVERE SLEEP APNEA AND 235 00:10:23,972 --> 00:10:26,908 COULD NOT TOLL LATE THE CPA 236 00:10:26,908 --> 00:10:28,676 P AND HER DAD DESCRIBES SHE 237 00:10:28,676 --> 00:10:31,913 WAS ALWAYS SO TIRED, GETTING 238 00:10:31,913 --> 00:10:32,847 FRUSTRATED WHEN SPEAKING, 239 00:10:32,847 --> 00:10:35,149 COULDN'T FIND THE RIGHT WORD 240 00:10:35,149 --> 00:10:37,252 TO SAY TO MAKE HERSELF 241 00:10:37,252 --> 00:10:38,953 UNDERSTOOD, LIKE SHE KEPT 242 00:10:38,953 --> 00:10:40,321 FOR GETTING THE WORD. 243 00:10:40,321 --> 00:10:42,190 WHEN A CHILD LIKE HER 244 00:10:42,190 --> 00:10:43,825 SHOWS -- BEFORE WE PUT THE 245 00:10:43,825 --> 00:10:45,393 IMPLANT IN, WE WANT TO BE 246 00:10:45,393 --> 00:10:48,296 REALLY SURE THAT THE ANATOMY 247 00:10:48,296 --> 00:10:51,099 IS IN FACT -- THAT WE DON'T 248 00:10:51,099 --> 00:10:53,034 ASSUME KIDS WITH DOWN 249 00:10:53,034 --> 00:10:55,003 SYNDROME HAVE TONGUE 250 00:10:55,003 --> 00:10:56,938 OBSTRUCTION AND THAT IS 251 00:10:56,938 --> 00:10:57,772 THEIR PRIMARY SOURCE. 252 00:10:57,772 --> 00:11:01,442 SO THIS IS CALLED A SLEEP 253 00:11:01,442 --> 00:11:03,044 ENDOSCOPY THAT IS DONE WITH 254 00:11:03,044 --> 00:11:05,747 ANY FORM OF MEDICINE 255 00:11:05,747 --> 00:11:07,282 MIMICKING SLEEP, THIS IS A 256 00:11:07,282 --> 00:11:08,583 SCOPE GOING DOWN THE NOSE 257 00:11:08,583 --> 00:11:10,051 AND HERE YOU ARE SEEING THE 258 00:11:10,051 --> 00:11:15,556 TONGUE AND AS WE LIFT THE 259 00:11:15,556 --> 00:11:19,093 TONGUE FORWARD, IN THE THE 260 00:11:19,093 --> 00:11:20,962 EPIGLOTTIS AND THE AIRWAY 261 00:11:20,962 --> 00:11:23,131 AND AS WE LIFT IT FORWARD, 262 00:11:23,131 --> 00:11:24,165 IT OPENS. 263 00:11:24,165 --> 00:11:27,835 THIS WE LET IT GO BACK, IT 264 00:11:27,835 --> 00:11:28,269 CLOSES AGAIN. 265 00:11:28,269 --> 00:11:29,604 SO THIS MAKES SURE THERE IS 266 00:11:29,604 --> 00:11:31,239 NOTHING ON THE TONSILS AND 267 00:11:31,239 --> 00:11:35,176 THE PALATE IS NOT 268 00:11:35,176 --> 00:11:37,578 OBSTRUCTING. 269 00:11:37,578 --> 00:11:39,280 THIS SLEEP ENDOSCOPY IS JUST 270 00:11:39,280 --> 00:11:48,423 CRUCIAL FOR US TO BE ABLE TO 271 00:11:48,423 --> 00:11:50,491 DIAGNOSIS THE CONDITION AND 272 00:11:50,491 --> 00:11:52,360 THEY NEED TO BE OBSTRUCTING 273 00:11:52,360 --> 00:11:54,696 LIKE THEY WOULD WHEN THEY 274 00:11:54,696 --> 00:11:55,763 ARE GENERALLY SLEEPING SO 275 00:11:55,763 --> 00:11:57,031 YOU HAVE TO WORK TOGETHER 276 00:11:57,031 --> 00:11:58,132 WITH THE TEAM. 277 00:11:58,132 --> 00:12:06,774 SINCE ONE OF THE CONTRA 278 00:12:06,774 --> 00:12:09,377 INDICATIONS TO HYPOGLOSSAL 279 00:12:09,377 --> 00:12:10,478 IMPLANTATION, THE PAL LIT 280 00:12:10,478 --> 00:12:13,214 THAT IS CLOSING THE NOSE AND 281 00:12:13,214 --> 00:12:14,782 THE MOUTH, IF IT IS 282 00:12:14,782 --> 00:12:15,717 OBSTRUCTING, THAT IS NOT 283 00:12:15,717 --> 00:12:18,753 INNER SAID THE BY THE 12TH 284 00:12:18,753 --> 00:12:21,923 CRANIAL NERVE OF THE 285 00:12:21,923 --> 00:12:23,591 HYPOGLOSSAL NERVE SO IF WE 286 00:12:23,591 --> 00:12:25,226 SEE THAT, WE WOULD CHANGE 287 00:12:25,226 --> 00:12:26,961 THAT PALATE BEFORE WE START 288 00:12:26,961 --> 00:12:32,834 THINKING ABOUT A HYPOGLOSSAL 289 00:12:32,834 --> 00:12:33,801 IMPLANT. 290 00:12:33,801 --> 00:12:35,903 BUT FOR CHILDREN WITH 291 00:12:35,903 --> 00:12:37,772 TKHRO*EPLD, THE TUBE THAT 292 00:12:37,772 --> 00:12:39,173 CONTROLS THE FLUID FROM THE 293 00:12:39,173 --> 00:12:44,212 BACK OF THEIR NOSE AND EARS 294 00:12:44,212 --> 00:12:46,481 CALLED THE EUSTACHIAN TUBE, 295 00:12:46,481 --> 00:12:47,815 THAT IS ALSO LARGE SO IT IS 296 00:12:47,815 --> 00:12:49,250 IMPORTANT TO MAKE SURE THE 297 00:12:49,250 --> 00:12:51,052 KIDS WHO ARE CANDIDATES FOR 298 00:12:51,052 --> 00:12:53,287 THE PROCEDURE TO BE SURE YOU 299 00:12:53,287 --> 00:12:56,157 KNOW THEY HAVE ANATOMICAL 300 00:12:56,157 --> 00:12:57,392 DIFFERENCES THAN THOSE WHO 301 00:12:57,392 --> 00:12:59,427 DON'T AND TO MAKE SURE WE 302 00:12:59,427 --> 00:13:01,796 LOOK FOR THIS. 303 00:13:01,796 --> 00:13:02,730 AGAIN, THE SURGERY ITSELF 304 00:13:02,730 --> 00:13:04,532 AND THIS FORM OF TECHNIQUE, 305 00:13:04,532 --> 00:13:08,169 ALL OF THESE THINGS ARE 306 00:13:08,169 --> 00:13:09,737 UNDERNEATH AND ALL OF THE 307 00:13:09,737 --> 00:13:11,639 PROCESSES VARY. 308 00:13:11,639 --> 00:13:14,008 THERE ARE OTHER DIFFERENCES 309 00:13:14,008 --> 00:13:15,810 SPECIFIC TO PEDIATRIC 310 00:13:15,810 --> 00:13:18,780 IMPLANTATION AS OPPOSED TO 311 00:13:18,780 --> 00:13:19,380 ADULT IMPLANTATION. 312 00:13:19,380 --> 00:13:21,549 ONE ISSUE IS THAT IN ADULTS 313 00:13:21,549 --> 00:13:22,750 WITHOUT DOWN SYNDROME AND 314 00:13:22,750 --> 00:13:23,718 CHILDREN WITHOUT DOWN 315 00:13:23,718 --> 00:13:25,420 SYNDROME, WE CAN 316 00:13:25,420 --> 00:13:26,921 HYPER-EXTEND THE NECK TO 317 00:13:26,921 --> 00:13:28,523 REALLY BE ABLE TO FEEL UNDER 318 00:13:28,523 --> 00:13:34,062 THE JAW AND BE ABLE TO PLACE 319 00:13:34,062 --> 00:13:35,730 THE CUFF MORE READILY TO 320 00:13:35,730 --> 00:13:37,365 FIND THE NERVE WHERE FOLKS 321 00:13:37,365 --> 00:13:39,100 WITH DOWN SYNDROME CAN HAVE 322 00:13:39,100 --> 00:13:42,303 LAXITY WITH THE C1 AND C2 323 00:13:42,303 --> 00:13:46,808 LIGAMENTS AND CANNOT EXTEND 324 00:13:46,808 --> 00:13:47,408 THEIR NECKS. 325 00:13:47,408 --> 00:13:49,644 SO IT IS A SMALLER SPACE AND 326 00:13:49,644 --> 00:13:52,080 WE HAVE DEVELOPED TECHNIQUES 327 00:13:52,080 --> 00:13:53,314 WITH KIDS FOR DOWN SYNDROME 328 00:13:53,314 --> 00:13:55,416 THAN IS GENERALLY 329 00:13:55,416 --> 00:13:56,284 RECOMMENDED BY ADULTS BUT 330 00:13:56,284 --> 00:13:58,252 THEY ARE SAFE AND NOW 331 00:13:58,252 --> 00:13:58,586 TESTED. 332 00:13:58,586 --> 00:14:00,021 THE OTHER THING WE HAVE TO 333 00:14:00,021 --> 00:14:02,090 BE CAREFUL ABOUT IS WITH 334 00:14:02,090 --> 00:14:03,091 CHILDREN, THEIR CHEST CAGES 335 00:14:03,091 --> 00:14:05,760 ARE A LITTLE DIFFERENT THAN 336 00:14:05,760 --> 00:14:06,094 ADULTS. 337 00:14:06,094 --> 00:14:07,562 WITH CHILDREN WITH DOWN 338 00:14:07,562 --> 00:14:08,563 SYNDROME, THEIR RIBS MOVE UP 339 00:14:08,563 --> 00:14:10,465 A LITTLE MORE VERTICALLY AND 340 00:14:10,465 --> 00:14:11,866 THEIR MUSCLES ARE A LITTLE 341 00:14:11,866 --> 00:14:14,435 THINNER SO THE WAY THE 342 00:14:14,435 --> 00:14:17,772 IMPLANT GOES IN IN ADULTS IS 343 00:14:17,772 --> 00:14:19,207 BETWEEN MUSCULAR LEVELS. 344 00:14:19,207 --> 00:14:20,341 WHEREAS IN CHILDREN, SINCE 345 00:14:20,341 --> 00:14:21,576 MUSCLE LAYERS ARE NOT SO 346 00:14:21,576 --> 00:14:22,877 DEVELOPED AND WE DON'T WANT 347 00:14:22,877 --> 00:14:27,415 TO INJURE THE LUNGS, WE PUT 348 00:14:27,415 --> 00:14:28,683 THE SENSOR RIGHT ABOVE THE 349 00:14:28,683 --> 00:14:32,453 RIB IT IS USING IT AS AN 350 00:14:32,453 --> 00:14:34,455 ANATOMIC LANDMARK AND AS IT 351 00:14:34,455 --> 00:14:36,424 EXPANDS OUT THROUGHOUT THE 352 00:14:36,424 --> 00:14:37,725 PEDIATRIC POPULATION, IT IS 353 00:14:37,725 --> 00:14:38,392 JUST VERY IMPORTANT TO 354 00:14:38,392 --> 00:14:40,394 REALIZE THAT KIDS ARE NOT 355 00:14:40,394 --> 00:14:41,429 LITTLE ADULTS, THAT 356 00:14:41,429 --> 00:14:42,230 EVERYTHING CHANGES WITH TIME 357 00:14:42,230 --> 00:14:43,364 AND YOU HAVE TO BE SURE YOU 358 00:14:43,364 --> 00:14:45,032 KNOW WHAT YOU ARE DOING AND 359 00:14:45,032 --> 00:14:50,872 WHAT THE DIFFERENCES ARE. 360 00:14:50,872 --> 00:14:52,740 ANOTHER PART OF THE PROCESS 361 00:14:52,740 --> 00:14:56,110 IS TO REALIZE THAT 362 00:14:56,110 --> 00:14:57,712 HYPOGLOSSAL IMPLANTATION IS 363 00:14:57,712 --> 00:14:58,846 NOT JUST WHAT HAPPENS WHEN 364 00:14:58,846 --> 00:15:00,481 YOU GET ON THE TABLE AND 365 00:15:00,481 --> 00:15:02,216 FINISHING WHEN YOU GET OFF 366 00:15:02,216 --> 00:15:04,085 THE TABLE, THAT IT IS REALLY 367 00:15:04,085 --> 00:15:05,753 IMPORTANT THAT PARENTS 368 00:15:05,753 --> 00:15:06,487 PREPARE THEMSELVES FOR WHAT 369 00:15:06,487 --> 00:15:09,790 THIS WILL LOOK LIKE BEFORE 370 00:15:09,790 --> 00:15:11,692 AND AFTER AND WE'RE GOING TO 371 00:15:11,692 --> 00:15:13,895 HAVE A WONDERFUL PARENT WHO 372 00:15:13,895 --> 00:15:14,395 WILL DESCRIBE THAT 373 00:15:14,395 --> 00:15:15,830 EXPERIENCE AND I AM VERY, 374 00:15:15,830 --> 00:15:17,131 VERY GRATEFUL FOR THAT. 375 00:15:17,131 --> 00:15:21,702 BUT TO SAY THAT AFTERWARDS, 376 00:15:21,702 --> 00:15:25,106 IT IS A YEAR THAT WE GET TO 377 00:15:25,106 --> 00:15:26,674 KNOW EACH OTHER VERY WELL. 378 00:15:26,674 --> 00:15:29,544 THERE ARE SLEEP STUDIES AT 1 379 00:15:29,544 --> 00:15:31,546 MONTH, 3 MONTHS, 6 MONTHS 380 00:15:31,546 --> 00:15:34,282 AND 12 MONTHS BECAUSE WE ARE 381 00:15:34,282 --> 00:15:38,152 TRYING TO INCREASE THE 382 00:15:38,152 --> 00:15:39,353 VAULTAGE OR MONITOR OF THE 383 00:15:39,353 --> 00:15:42,356 DEVICE TO TAKE AWAY SLEEP 384 00:15:42,356 --> 00:15:44,492 APNEA BUT NOT TO AROUSE THE 385 00:15:44,492 --> 00:15:44,959 CHILD. 386 00:15:44,959 --> 00:15:46,093 THE CHILDREN HAVE TO GET 387 00:15:46,093 --> 00:15:48,829 USED TO THIS SO WE REALLY 388 00:15:48,829 --> 00:15:50,198 NEED TO DO THAT. 389 00:15:50,198 --> 00:15:53,501 THERE ARE ALSO DEVICES, JUST 390 00:15:53,501 --> 00:15:55,469 LIKE A PACEMAKER OR COCHLEAR 391 00:15:55,469 --> 00:15:57,972 IMPLANT OR OTHER DEVICE, IT 392 00:15:57,972 --> 00:16:01,209 IS A ELECTRICAL CIRCUIT THAT 393 00:16:01,209 --> 00:16:02,910 AFFECTS THE MUSCLES SO IT 394 00:16:02,910 --> 00:16:04,178 HAS TO DESCEND SO WE HAVE TO 395 00:16:04,178 --> 00:16:04,912 READ IT. 396 00:16:04,912 --> 00:16:06,480 IF THE PARENTS ARE SAYING 397 00:16:06,480 --> 00:16:08,783 WHY ARE WE DOING ALL THESE 398 00:16:08,783 --> 00:16:10,484 SLEEP STUDIES, THERE ARE 399 00:16:10,484 --> 00:16:12,753 SOMETIMES WE LOOK AT THIS 400 00:16:12,753 --> 00:16:17,658 IMPLANT, IT WASN'T WORKING 401 00:16:17,658 --> 00:16:18,326 SO WELL. 402 00:16:18,326 --> 00:16:20,394 THERE WAS A CHILD IN THE 403 00:16:20,394 --> 00:16:22,964 30s AND COULDN'T GET BELOW 404 00:16:22,964 --> 00:16:24,498 THE 20s WHICH IS SEVERE 405 00:16:24,498 --> 00:16:26,000 SLEEP APNEA AND NEEDED TO 406 00:16:26,000 --> 00:16:26,934 KNOW WHY. 407 00:16:26,934 --> 00:16:28,803 AND SO WE TEND TO LOOK IN 408 00:16:28,803 --> 00:16:30,171 THE SLEEP LAB ARE THE 409 00:16:30,171 --> 00:16:31,739 CHILDREN TRYING TO DRAW A 410 00:16:31,739 --> 00:16:34,942 BREATH BUT IT IS NOT QUITE 411 00:16:34,942 --> 00:16:38,946 WORKING AND WE CALL THAT 412 00:16:38,946 --> 00:16:41,182 HYPOXIA OR IS THE TONGUE NOT 413 00:16:41,182 --> 00:16:46,053 MOVING AT ALL, WE CALL THAT 414 00:16:46,053 --> 00:16:46,654 APNEIC. 415 00:16:46,654 --> 00:16:47,555 SO THERE ARE THINGS IF A 416 00:16:47,555 --> 00:16:53,527 CHILD IS TRYING TO MOVE THE 417 00:16:53,527 --> 00:16:58,966 TONGUE IN THE SLEEP LAB TO 418 00:16:58,966 --> 00:17:00,034 MOVE THE TONGUE. 419 00:17:00,034 --> 00:17:01,335 AND WE BRING THE CHILDREN 420 00:17:01,335 --> 00:17:05,840 BACK TO SAY WHAT 421 00:17:05,840 --> 00:17:06,674 CONFIGURATION AND AESTHETICS 422 00:17:06,674 --> 00:17:08,476 DO WE DO TO GET THAT TONGUE 423 00:17:08,476 --> 00:17:09,877 TO MOVE FORWARD SO VERY 424 00:17:09,877 --> 00:17:11,078 CLOSE FOLLOW UP WITH THE 425 00:17:11,078 --> 00:17:12,113 PARENTS TELLING YOU HOW 426 00:17:12,113 --> 00:17:13,514 THEIR CHILDREN ARE DOING IS 427 00:17:13,514 --> 00:17:15,683 SUPER IMPORTANT. 428 00:17:15,683 --> 00:17:17,084 IN THIS PARTICULAR CHILD, 429 00:17:17,084 --> 00:17:19,887 THE WAY SHE WAS SLEEPING 430 00:17:19,887 --> 00:17:23,457 EVERY TIME SHE TURNS TO THE 431 00:17:23,457 --> 00:17:25,226 POSITION SHE WAS MORE 432 00:17:25,226 --> 00:17:26,227 COMFORTABLE WITH, SHE 433 00:17:26,227 --> 00:17:27,395 HAPPENED TO INVERT THE 434 00:17:27,395 --> 00:17:28,929 SIGNAL SO THE MACHINE WAS 435 00:17:28,929 --> 00:17:30,831 READING IT WHEN SHE WAS 436 00:17:30,831 --> 00:17:32,366 TRYING TO TAKE A BREATH IN 437 00:17:32,366 --> 00:17:34,268 AS IF SHE WAS TAKING THE 438 00:17:34,268 --> 00:17:37,972 BREATH OUT AND VICE VERSA. 439 00:17:37,972 --> 00:17:40,241 WITH ADVANCED SETTINGS, YOU 440 00:17:40,241 --> 00:17:43,244 CAN FLIP THAT AND NOW IT HAS 441 00:17:43,244 --> 00:17:46,347 GONE DOWN FROM 30 TO 1.5 SO 442 00:17:46,347 --> 00:17:47,281 COMPLETELY TREATED AND WHEN 443 00:17:47,281 --> 00:17:48,649 YOU END WITH THE DAD'S 444 00:17:48,649 --> 00:17:51,452 REPORT THAT SHE WAS SO TIRED 445 00:17:51,452 --> 00:17:54,188 AND KEPT FORGETTING THE 446 00:17:54,188 --> 00:17:58,025 WORDS, NOW SHE HAS NOT 447 00:17:58,025 --> 00:18:00,294 FORGOTTEN THE WORD ANYMORE. 448 00:18:00,294 --> 00:18:01,262 SO FORGET ABOUT THE SCORE, 449 00:18:01,262 --> 00:18:02,863 IT IS HOW THE CHILDREN ARE 450 00:18:02,863 --> 00:18:03,964 DOING AFTERWARDS AND HOW 451 00:18:03,964 --> 00:18:05,066 THEY ARE LIVING THEIR LIVES 452 00:18:05,066 --> 00:18:06,834 AND THIS IS THE REASON YEAR 453 00:18:06,834 --> 00:18:10,838 DOING -- REASON WE ARE 454 00:18:10,838 --> 00:18:12,573 DOING THE STUDY TO SEE HOW 455 00:18:12,573 --> 00:18:15,443 TRUE THIS IS. 456 00:18:15,443 --> 00:18:19,747 SO FROM 2015-2019 WE DID A 457 00:18:19,747 --> 00:18:28,155 MULTIINSTITUTIONAL STUDY, A 458 00:18:28,155 --> 00:18:30,191 FDA-APPROVED IDE 459 00:18:30,191 --> 00:18:31,592 MULTIINSTITUTIONAL STUDY 460 00:18:31,592 --> 00:18:36,397 WHERE THEY HAD THE BMI UNDER 461 00:18:36,397 --> 00:18:38,499 50 PERCENT, HAD THEIR 462 00:18:38,499 --> 00:18:39,467 TONSILS REMOVED, TRIED AND 463 00:18:39,467 --> 00:18:42,636 JUST COULD NOT WEAR A CPA P. 464 00:18:42,636 --> 00:18:44,472 YOU KNOW, WE WERE LEARNING 465 00:18:44,472 --> 00:18:46,240 ABOUT THE TITRATION EFFECTS 466 00:18:46,240 --> 00:18:50,444 OF THIS AND HOW DID WE TEACH 467 00:18:50,444 --> 00:18:52,513 PARENTS TO USE THIS DEVICE 468 00:18:52,513 --> 00:18:55,683 AND HOW QUICKLY COULD WE GO 469 00:18:55,683 --> 00:18:58,018 TO TITRATE IN SLEEP APNEA. 470 00:18:58,018 --> 00:19:00,788 SO INITIALLY OUR SUCCESS 471 00:19:00,788 --> 00:19:02,556 RATE WAS JUST SHY OF 472 00:19:02,556 --> 00:19:03,157 70 PERCENT, DEFINING A 473 00:19:03,157 --> 00:19:05,760 DECREASE IN THE AHI TO 474 00:19:05,760 --> 00:19:07,027 50 PERCENT OR MORE. 475 00:19:07,027 --> 00:19:08,829 AS WE HAVE LEARNED MORE 476 00:19:08,829 --> 00:19:11,599 ABOUT THIS, WE ARE JUST SHY 477 00:19:11,599 --> 00:19:13,934 OF 90 PERCENT THAT WE HAVE A 478 00:19:13,934 --> 00:19:15,870 SUCCESS RATE OF THIS MEASURE 479 00:19:15,870 --> 00:19:19,807 NOW THAT WE HAVE CHANGED THE 480 00:19:19,807 --> 00:19:20,441 TITRATION SETTINGS. 481 00:19:20,441 --> 00:19:22,276 BUT WHILE WE WERE DOING 482 00:19:22,276 --> 00:19:23,978 THIS -- THE FIRST STUDIES WE 483 00:19:23,978 --> 00:19:26,680 WERE DOING IS TO SAY IS THE 484 00:19:26,680 --> 00:19:29,550 DEVICE SAFE AND EFFECTIVE 485 00:19:29,550 --> 00:19:32,553 DEFINED BY A CHANGE IN THE 486 00:19:32,553 --> 00:19:36,023 API INDEX. 487 00:19:36,023 --> 00:19:37,691 BUT WHILE WE WERE DOING THIS 488 00:19:37,691 --> 00:19:39,727 STUD HE COULD, PARENTS CAME 489 00:19:39,727 --> 00:19:43,898 TO US, WHICH IS WHY I SAY 490 00:19:43,898 --> 00:19:45,299 RESTORE VERSUS RESTORY, TO 491 00:19:45,299 --> 00:19:47,568 LISTEN TO THE PARENTS AND IN 492 00:19:47,568 --> 00:19:48,269 THIS STORY, THE PARENTS 493 00:19:48,269 --> 00:19:50,671 THINK SHE IS A DIFFERENT 494 00:19:50,671 --> 00:19:52,373 KID, CONNECTING WITH THINGS 495 00:19:52,373 --> 00:19:54,341 AROUND HER, A CHILD'S SPEECH 496 00:19:54,341 --> 00:19:55,643 COULD BE UNDERSTOOD IN 497 00:19:55,643 --> 00:19:56,310 SCHOOL. 498 00:19:56,310 --> 00:19:58,379 SO WE DID SMALL NESTED 499 00:19:58,379 --> 00:20:00,314 STUDIES IN THE PRIMARY STUDY 500 00:20:00,314 --> 00:20:03,717 WE WERE DOING, FIRST JUST TO 501 00:20:03,717 --> 00:20:09,089 SAY OF CAREGIVERS, HOW MANY 502 00:20:09,089 --> 00:20:12,426 CAREGIVERS WERE REPORTING 503 00:20:12,426 --> 00:20:14,428 THERE WAS NEUROCOGNITIVE AND 504 00:20:14,428 --> 00:20:15,296 EXPRESSIVE LANGUAGE TESTING. 505 00:20:15,296 --> 00:20:17,431 COULD THIS BE LOOKED AT. 506 00:20:17,431 --> 00:20:22,803 AND WHEN THIS CAME UP, OUR 507 00:20:22,803 --> 00:20:24,438 NOW CURRENT STUDY, THIS IS 508 00:20:24,438 --> 00:20:25,372 QUALITATIVE AND EXPLORATORY 509 00:20:25,372 --> 00:20:27,341 WORK BUT NOT ONLY WERE WE 510 00:20:27,341 --> 00:20:30,611 FINDING CHANGES IN THE 511 00:20:30,611 --> 00:20:31,779 NEUROCOGNITIVE EXPRESSIVE 512 00:20:31,779 --> 00:20:33,214 LANGUAGE TESTING, THIS IS 513 00:20:33,214 --> 00:20:39,220 FOR KIDS WHOSE AHI WAS STILL 514 00:20:39,220 --> 00:20:39,820 GREATER THAN 10. 515 00:20:39,820 --> 00:20:41,222 AND THIS WAS REALLY 516 00:20:41,222 --> 00:20:42,456 IMPORTANT BECAUSE A PRIOR 517 00:20:42,456 --> 00:20:43,824 WORK HAS SUGGESTED YOU WANT 518 00:20:43,824 --> 00:20:45,993 TO GET THAT AHI UNDER 2 OR 519 00:20:45,993 --> 00:20:47,862 YOU COULD HAVE A DETRIMENT 520 00:20:47,862 --> 00:20:50,030 IN YOUR IQ. AND I THINK 521 00:20:50,030 --> 00:20:52,733 THIS IS REALLY THE WORLD 522 00:20:52,733 --> 00:20:54,735 THAT WE'RE GOING TO LEARN SO 523 00:20:54,735 --> 00:20:56,570 MUCH MORE IN OVER THE NEXT 524 00:20:56,570 --> 00:20:57,771 FIVE YEARS AS TO WHAT 525 00:20:57,771 --> 00:20:59,073 ACTUALLY WE SHOULD BE 526 00:20:59,073 --> 00:21:01,842 SHOOTING FOR, IS IT THE AHI 527 00:21:01,842 --> 00:21:03,310 OR ARE THERE OTHER MEASURES 528 00:21:03,310 --> 00:21:04,812 WE SHOULD BE LOOKING AT. 529 00:21:04,812 --> 00:21:06,514 WHEN YOU LOOK AT THE 530 00:21:06,514 --> 00:21:07,715 POPULATION, AGAIN THESE ARE 531 00:21:07,715 --> 00:21:08,816 THE BASIC PRELIMINARY DATA 532 00:21:08,816 --> 00:21:10,351 TO SUGGEST THAT, YEAH, THERE 533 00:21:10,351 --> 00:21:13,254 WERE INCREASES IN MEASURES 534 00:21:13,254 --> 00:21:14,455 OF INTELLIGENCE AND 535 00:21:14,455 --> 00:21:17,224 VOCABULARY TENSION EVEN IN 536 00:21:17,224 --> 00:21:19,994 THESE KIDS WHO HAD MODERATE 537 00:21:19,994 --> 00:21:22,963 SLEEP APNEA BUT THE CHANGED 538 00:21:22,963 --> 00:21:24,131 BEEN SO DRAMATICALLY 539 00:21:24,131 --> 00:21:24,498 AFFECTED. 540 00:21:24,498 --> 00:21:28,035 AND THERE IS A WONDERFUL 541 00:21:28,035 --> 00:21:29,069 SPEECH PATHOLOGIST IN UC 542 00:21:29,069 --> 00:21:31,272 DAVIS WHO HAD VALIDATED 543 00:21:31,272 --> 00:21:32,606 EXPRESSIVE LANGUAGE SCORES 544 00:21:32,606 --> 00:21:34,074 FOR CHILDREN WHO HAD DOWN 545 00:21:34,074 --> 00:21:34,508 SYNDROME. 546 00:21:34,508 --> 00:21:37,711 LOOKING AT THESE AS A NUMBER 547 00:21:37,711 --> 00:21:40,748 OF TOTAL UTTERANCEO OR 548 00:21:40,748 --> 00:21:41,382 UNDERSTANDABLE UTTERANCES 549 00:21:41,382 --> 00:21:45,519 AND THIS WENT UP IN THIS 550 00:21:45,519 --> 00:21:45,920 POPULATION. 551 00:21:45,920 --> 00:21:48,155 SO WE KNEW FROM OUR POSITIVE 552 00:21:48,155 --> 00:21:49,690 WORK THAT MAYBE THE DEVICE 553 00:21:49,690 --> 00:21:51,692 CERTAINLY DID WORK TO 554 00:21:51,692 --> 00:21:54,094 DECREASE A CHILD'S SLEEP 555 00:21:54,094 --> 00:21:55,863 APNEA AND LIMIT THEIR NEED 556 00:21:55,863 --> 00:21:59,867 TO HAVE CPA P BUT THERE WAS 557 00:21:59,867 --> 00:22:02,970 SOME SUGGESTION THERE WERE 558 00:22:02,970 --> 00:22:03,737 NEUROCOGNITIVE AND 559 00:22:03,737 --> 00:22:04,672 EXPRESSIVE LANGUAGE CHANGES 560 00:22:04,672 --> 00:22:06,140 AND THAT IS REALLY WHAT HAS 561 00:22:06,140 --> 00:22:08,676 GOT TEN TO OUR STUDY NOW 562 00:22:08,676 --> 00:22:12,112 WHERE THE QUESTION IS DOES 563 00:22:12,112 --> 00:22:14,048 HYPOGLOSSAL NERVE 564 00:22:14,048 --> 00:22:16,417 STIMULATION AFFECT 565 00:22:16,417 --> 00:22:17,217 CHILDREN'S LANGUAGE AND 566 00:22:17,217 --> 00:22:17,851 SLEEP APNEA. 567 00:22:17,851 --> 00:22:19,820 IF THAT IS TRUE, THEN THIS 568 00:22:19,820 --> 00:22:21,655 CONNECTION OF HOW YOU LIVE 569 00:22:21,655 --> 00:22:23,123 YOUR NIGHTS AFFECTS HOW YOU 570 00:22:23,123 --> 00:22:24,758 LIVE YOUR DAY IS GOING TO BE 571 00:22:24,758 --> 00:22:26,727 SOMETHING WE LOOK VERY, VERY 572 00:22:26,727 --> 00:22:30,264 CAREFULLY AT WITH MOOD, 573 00:22:30,264 --> 00:22:31,966 ATTENTION AND SPEECH. 574 00:22:31,966 --> 00:22:33,934 AND YOU KNOW EVERY TEST, 575 00:22:33,934 --> 00:22:35,402 EVERY STUDY YOU DO, YOU HAVE 576 00:22:35,402 --> 00:22:38,172 TO THINK ABOUT WHAT YOUR 577 00:22:38,172 --> 00:22:39,306 INCLUSION CRITERIA ARE AND 578 00:22:39,306 --> 00:22:41,308 THERE ARE -- WE CERTAINLY 579 00:22:41,308 --> 00:22:41,942 COULD DEBATE AROUND THE 580 00:22:41,942 --> 00:22:43,577 EDGES IN TERMS OF WHERE WE 581 00:22:43,577 --> 00:22:46,246 LOOK, WE USE THE SAME 582 00:22:46,246 --> 00:22:48,482 CRITERIA WE HAD DONE IN 583 00:22:48,482 --> 00:22:49,483 PRIOR STUDIES AND THERE 584 00:22:49,483 --> 00:22:52,920 WOULD BE QUESTIONS OF SHOULD 585 00:22:52,920 --> 00:22:54,321 WE BE INCLUDING PATIENTS WHO 586 00:22:54,321 --> 00:22:56,423 IS API IS SLIGHTLY HIGHER, 587 00:22:56,423 --> 00:22:57,925 LIKE THE ADULTS WE HAVE 588 00:22:57,925 --> 00:23:01,962 STUDIED WHO ARE OVER 65 OR 589 00:23:01,962 --> 00:23:04,231 EVEN 100, WHETHER BMI, 590 00:23:04,231 --> 00:23:07,868 SHOULD IT BE AN INCLUSION OR 591 00:23:07,868 --> 00:23:09,370 EXCLUSION CRITERIA OR SHOULD 592 00:23:09,370 --> 00:23:14,041 IT BE BASED SLOWLY ON THE 593 00:23:14,041 --> 00:23:16,243 SLEEP ENDOSCOPY OR BASED ON 594 00:23:16,243 --> 00:23:20,948 KIDS WHO HAVE SLIGHTER AHI 595 00:23:20,948 --> 00:23:24,585 AND ARE FINE WITH CPA P BUT 596 00:23:24,585 --> 00:23:25,853 THESE ARE THE QUESTIONS AND 597 00:23:25,853 --> 00:23:27,521 WHAT WE'RE LOOKING AT. 598 00:23:27,521 --> 00:23:29,590 THESE KIDS ARE GETTING SLEEP 599 00:23:29,590 --> 00:23:33,694 STUDIES AT THE 1, 3, 6 AND 600 00:23:33,694 --> 00:23:35,429 12 MONTHS AND GETTING 601 00:23:35,429 --> 00:23:37,564 EXPRESSIVE AND LANGUAGE 602 00:23:37,564 --> 00:23:41,301 TESTING AT 3, 6 AND 12 603 00:23:41,301 --> 00:23:43,370 MONTHS AND THOSE ARE THE 604 00:23:43,370 --> 00:23:45,372 OUTCOMES OF OUR STUDIES. 605 00:23:45,372 --> 00:23:46,206 AGAIN, YOU KNOW, I KEEP 606 00:23:46,206 --> 00:23:47,341 GOING BACK TO THE CHILDREN 607 00:23:47,341 --> 00:23:49,843 OF THE PARENTS IN TERMS OF, 608 00:23:49,843 --> 00:23:52,413 YES, THE OUTCOMES WE ARE 609 00:23:52,413 --> 00:23:54,148 LOOKING AT IS NEUROCOGNITION 610 00:23:54,148 --> 00:23:55,049 AND EXPRESSIVE LANGUAGE IN 611 00:23:55,049 --> 00:23:57,985 TERMS OF THAT THEY ALLOW US 612 00:23:57,985 --> 00:24:00,854 TO HAVE VALIDATED MEASURES, 613 00:24:00,854 --> 00:24:03,424 HAVE SAMPLE SIZE, APPLY 614 00:24:03,424 --> 00:24:04,658 RIGOROUS SCIENCE BUT THERE 615 00:24:04,658 --> 00:24:06,660 IS A HUMAN FACE TO IT. 616 00:24:06,660 --> 00:24:08,262 THE GOAL IS FOR THESE KIDS 617 00:24:08,262 --> 00:24:17,137 TO BE ABLE TO NOT JUST SERVE 618 00:24:17,137 --> 00:24:19,106 BUT TO LIVE THEIR LIFE IN A 619 00:24:19,106 --> 00:24:20,207 RICHER WAY AND EMPOWER THEM 620 00:24:20,207 --> 00:24:21,875 TO GO TO SCHOOL AND 621 00:24:21,875 --> 00:24:23,477 TRANSITION FROM SCHOOL AND 622 00:24:23,477 --> 00:24:24,578 THEIR PARENTS' LIVES TO 623 00:24:24,578 --> 00:24:26,146 THEIR OWN LIVES AS THEY 624 00:24:26,146 --> 00:24:28,682 BECOME ADULTS AND FOR THEIR 625 00:24:28,682 --> 00:24:29,717 LIVES TO BE CHANGED THIS WAY 626 00:24:29,717 --> 00:24:33,020 SO THIS IS THE REASON WE DO 627 00:24:33,020 --> 00:24:35,155 THIS AND WE WORK TOGETHER. 628 00:24:35,155 --> 00:24:36,890 SO I WILL END THERE AND OPEN 629 00:24:36,890 --> 00:24:39,359 IT UP TO QUESTIONS BUT FOR 630 00:24:39,359 --> 00:24:41,762 THOSE -- YOU KNOW, FEEL FREE 631 00:24:41,762 --> 00:24:43,564 TO E-MAIL ME AFTERWARDS FOR 632 00:24:43,564 --> 00:24:43,931 QUESTIONS. 633 00:24:43,931 --> 00:24:47,701 I DID WANT TO SHOW THAT JUST 634 00:24:47,701 --> 00:24:53,774 ON YOUTUBE AND ON OUR 635 00:24:53,774 --> 00:24:59,780 WEBSITE, WE DO HAVE -- 636 00:24:59,780 --> 00:25:01,715 CREATED MULTILINGUAL AND 637 00:25:01,715 --> 00:25:03,417 CARTOONS BASICALLY THAT 638 00:25:03,417 --> 00:25:04,251 PARENTS HAVE HELPED INFORM 639 00:25:04,251 --> 00:25:06,186 US WOULD BE HELPFUL FOR 640 00:25:06,186 --> 00:25:09,223 THEIR CHILDREN AND FOR 641 00:25:09,223 --> 00:25:10,724 THEMSELVES IN TERMS OF 642 00:25:10,724 --> 00:25:12,226 EXPLAINING WHAT THE ACTUAL 643 00:25:12,226 --> 00:25:14,962 DEVICE IS AND HOW IT WORKS 644 00:25:14,962 --> 00:25:19,366 AND WHAT HAPPENS AFTER, AS 645 00:25:19,366 --> 00:25:21,268 WELL AS TO EXPLAIN WHAT A 646 00:25:21,268 --> 00:25:22,636 SLEEP STUDY IS BECAUSE FOR 647 00:25:22,636 --> 00:25:28,008 MANY OF THESE KIDS, IT IS 648 00:25:28,008 --> 00:25:30,544 NOT THE SARSERVER THAT IS 649 00:25:30,544 --> 00:25:31,578 THE HARDEST PARDON, IT IS 650 00:25:31,578 --> 00:25:32,846 ALL THE WIRES AND 651 00:25:32,846 --> 00:25:34,181 PREPARATION FOR THE SLEEP 652 00:25:34,181 --> 00:25:35,249 STUDY I THINK IS SOMETIMES 653 00:25:35,249 --> 00:25:36,750 AS IMPORTANT AS THE 654 00:25:36,750 --> 00:25:38,285 PREPARATION FOR THE SURGERY 655 00:25:38,285 --> 00:25:38,886 ITSELF. 656 00:25:38,886 --> 00:25:40,254 AND I ALSO JUST WANTED TO 657 00:25:40,254 --> 00:25:43,824 SAY THAT I AM NOT A FACEBOOK 658 00:25:43,824 --> 00:25:44,958 USER BUT ONE OF THE 659 00:25:44,958 --> 00:25:47,327 WONDERFUL MOMS OF A CHILD 660 00:25:47,327 --> 00:25:52,766 WHO UNDERWENT A CHILD WITH 661 00:25:52,766 --> 00:25:54,902 HYPOGLOSSAL IMPLANTATION HAS 662 00:25:54,902 --> 00:25:57,171 A SHARED PARENT PAGE, A 663 00:25:57,171 --> 00:25:58,238 CLOSED GROUP, SO THAT 664 00:25:58,238 --> 00:25:59,406 PARENTS WHO ARE EITHER 665 00:25:59,406 --> 00:26:01,041 THINKING ABOUT THIS 666 00:26:01,041 --> 00:26:03,443 PARTICULAR SURGERY OR HAVE 667 00:26:03,443 --> 00:26:05,012 HAD THE SURGERY, WHAT IS IT 668 00:26:05,012 --> 00:26:07,881 LIKE WHEN THEY GO HOME AND 669 00:26:07,881 --> 00:26:09,449 HAVE QUESTIONS AND HAVE 670 00:26:09,449 --> 00:26:10,284 OTHER PEOPLE EXPERIENCED 671 00:26:10,284 --> 00:26:10,584 THAT. 672 00:26:10,584 --> 00:26:14,254 I THINK THAT IS A REALLY 673 00:26:14,254 --> 00:26:14,955 WONDERFUL RESOURCE FOR 674 00:26:14,955 --> 00:26:16,323 PARENTS WHO ARE CONSIDERING 675 00:26:16,323 --> 00:26:17,858 THIS FOR THEIR CHILDREN. 676 00:26:17,858 --> 00:26:19,293 SO WITH THAT, I AM GOING TO 677 00:26:19,293 --> 00:26:22,362 STOP AND OPEN IT UP FOR 678 00:26:22,362 --> 00:26:23,997 QUESTIONS. 679 00:26:23,997 --> 00:26:27,000 AND THANK YOU. 680 00:26:27,000 --> 00:26:33,040 AND MAYBE I WILL STOP 681 00:26:33,040 --> 00:26:33,907 SHARING. 682 00:26:33,907 --> 00:26:34,741 >> THANK YOU, CHRIS, WE 683 00:26:34,741 --> 00:26:36,543 APPRECIATE IT AND WE WILL 684 00:26:36,543 --> 00:26:38,478 ACTUALLY TAKE QUESTIONS AT 685 00:26:38,478 --> 00:26:43,817 THE VERY END, AFTER I HAVE A 686 00:26:43,817 --> 00:26:45,452 CHANCE TO INTRODUCE 687 00:26:45,452 --> 00:26:47,688 MS. DOMINGUEZ AND SHE CAN 688 00:26:47,688 --> 00:26:49,857 SHARE HER EXPERIENCE AS WELL 689 00:26:49,857 --> 00:26:51,458 AND WE ENCOURAGE ALL 690 00:26:51,458 --> 00:26:52,593 PARTICIPANTS TO ENTER 691 00:26:52,593 --> 00:26:54,494 QUESTIONS IN THE Q&A 692 00:26:54,494 --> 00:26:58,699 FUNCTION AND AFTER WE 693 00:26:58,699 --> 00:26:59,766 INTRODUCE MS. DOMINGUEZ WE 694 00:26:59,766 --> 00:27:01,768 WILL OPEN UP THE FLOOR FOR 695 00:27:01,768 --> 00:27:03,036 Q&A FROM THE GROUP. 696 00:27:03,036 --> 00:27:05,305 SO ONCE AGAIN, THANK YOU 697 00:27:05,305 --> 00:27:10,110 Dr. HARTN ICK FOR A 698 00:27:10,110 --> 00:27:10,878 WONDERFUL PRESENTATION AND 699 00:27:10,878 --> 00:27:14,948 IT IS MY GREAT PLEASURE TO 700 00:27:14,948 --> 00:27:16,416 INTRODUCE MS. LOIDA 701 00:27:16,416 --> 00:27:18,785 DOMINGUEZ, THE MOTHER OF A 702 00:27:18,785 --> 00:27:20,621 19-MONTH OLD YOUNG MAN. 703 00:27:20,621 --> 00:27:22,389 HER SON WAS BORN WITH DOWN 704 00:27:22,389 --> 00:27:24,825 SYNDROME AND HE IS THE LIGHT 705 00:27:24,825 --> 00:27:25,592 OF HER LIFE. 706 00:27:25,592 --> 00:27:28,428 SHE IS A LOVING MOTHER THAT 707 00:27:28,428 --> 00:27:30,063 CREATES CHANGE IN THE WAY 708 00:27:30,063 --> 00:27:30,964 THAT PEOPLE PERCEIVE 709 00:27:30,964 --> 00:27:32,900 INDIVIDUALS FOR EXTRA 710 00:27:32,900 --> 00:27:33,800 SUPPORT. 711 00:27:33,800 --> 00:27:37,070 SHE OFFERS A PERSPECTIVE OF 712 00:27:37,070 --> 00:27:38,939 UNCONDITIONAL LOVE AND IS 713 00:27:38,939 --> 00:27:40,240 COMMITTED TO THAT JOURNEY. 714 00:27:40,240 --> 00:27:43,844 SHE IS A LIFE COACH, MENTOR, 715 00:27:43,844 --> 00:27:45,712 SINGER, SONG PRIORITY AND 716 00:27:45,712 --> 00:27:46,546 PUBLISHED AUTHOR. 717 00:27:46,546 --> 00:27:49,583 SHE USES ALL OF THESE TOOLS 718 00:27:49,583 --> 00:27:52,486 TO BETTER SUPPORT PEOPLE TO 719 00:27:52,486 --> 00:27:54,922 AWAKEN TO DO HER LAYERS OF 720 00:27:54,922 --> 00:27:58,792 LOVE WITHIN THE CELLS. 721 00:27:58,792 --> 00:28:01,361 NOTABLY, MS. DOMINGUEZ IS 722 00:28:01,361 --> 00:28:02,195 ALSO A -- 723 00:28:02,195 --> 00:28:02,930 [INDISCERNIBLE] 724 00:28:02,930 --> 00:28:04,264 AND SUPPORTS THE WELL-BEING 725 00:28:04,264 --> 00:28:06,533 OF ANIMALS AND THE WORLD AS 726 00:28:06,533 --> 00:28:07,200 A WHOLE. 727 00:28:07,200 --> 00:28:09,002 SHE IS DEVOTED TO BEING THE 728 00:28:09,002 --> 00:28:10,470 CHANGE SHE WANTS TO SEE IN 729 00:28:10,470 --> 00:28:11,672 THE WORLD AND IS COMMITTED 730 00:28:11,672 --> 00:28:14,675 TO LEAVING THE WORLD A 731 00:28:14,675 --> 00:28:15,943 BETTER PLACE THAN WHEN SHE 732 00:28:15,943 --> 00:28:17,044 JOINED IT. 733 00:28:17,044 --> 00:28:18,712 THANK YOU, WE APPRECIATE YOU 734 00:28:18,712 --> 00:28:19,212 BEING HERE TODAY. 735 00:28:19,212 --> 00:28:21,748 SO WE HAVE A FEW QUESTIONS 736 00:28:21,748 --> 00:28:22,549 FOR YOU. 737 00:28:22,549 --> 00:28:27,154 Dr. HARTNICK WENT THROUGH 738 00:28:27,154 --> 00:28:28,355 THE STUDY AND THE RESULTS. 739 00:28:28,355 --> 00:28:30,490 COULD YOU TELL US A LITTLE 740 00:28:30,490 --> 00:28:31,425 BIT ABOUT HOW YOU LEARNED 741 00:28:31,425 --> 00:28:33,527 ABOUT THE STUDY AND WHY YOU 742 00:28:33,527 --> 00:28:34,528 DECIDED TO PARTICIPATE? 743 00:28:34,528 --> 00:28:36,163 >> YES, FIRST I WANT TO SAY 744 00:28:36,163 --> 00:28:38,265 THANK YOU FOR HAVING ME. 745 00:28:38,265 --> 00:28:42,602 I LOVED JUST LISTENING TO 746 00:28:42,602 --> 00:28:43,370 Dr. HARTNICK'S EXPLANATION 747 00:28:43,370 --> 00:28:45,405 AND I THINK THAT WILL BE 748 00:28:45,405 --> 00:28:46,239 BENEFICIAL FOR PEOPLE 749 00:28:46,239 --> 00:28:49,409 THINKING OF GETTING THIS 750 00:28:49,409 --> 00:28:50,577 SYSTEM FOR THEIR CHILDREN 751 00:28:50,577 --> 00:28:53,914 AND I WANT TO EMPHASIZE MY 752 00:28:53,914 --> 00:28:55,148 THANKS FOR HIM FOR BEING 753 00:28:55,148 --> 00:28:57,284 HERE AND THANK YOU ALL FOR 754 00:28:57,284 --> 00:28:59,720 CREATING THIS SPACE. 755 00:28:59,720 --> 00:29:04,057 I HEARD ABOUT THE STUDY FROM 756 00:29:04,057 --> 00:29:06,460 Dr. HARTNICK AND MY DESIRE 757 00:29:06,460 --> 00:29:13,667 TO DO THE STUDY IS I AM 758 00:29:13,667 --> 00:29:15,869 ALWAYS OPEN TO STUDIES 759 00:29:15,869 --> 00:29:17,270 BECAUSE I FEEL LIKE THEY ARE 760 00:29:17,270 --> 00:29:18,905 BENEFICIAL TO PEOPLE WHO ARE 761 00:29:18,905 --> 00:29:19,573 THINKING OF GETTING THIS 762 00:29:19,573 --> 00:29:21,875 DONE IN THE FUTURE, TO 763 00:29:21,875 --> 00:29:22,876 ACTUALLY GET SOMETHING SOLID 764 00:29:22,876 --> 00:29:25,479 OF WHAT ARE THE BENEFITS. 765 00:29:25,479 --> 00:29:28,281 LIKE IS MY SON GONNA LEARN 766 00:29:28,281 --> 00:29:29,983 BETTER OR SPEAK BETTER AND 767 00:29:29,983 --> 00:29:33,420 PEOPLE CAN THEN SEE, YOU 768 00:29:33,420 --> 00:29:38,025 KNOW, THE OUTCOME ISN'T ONLY 769 00:29:38,025 --> 00:29:39,659 YOUR CHILD WILL SLEEP BETTER 770 00:29:39,659 --> 00:29:41,294 BUT THEY MAY LEARN BETTER, 771 00:29:41,294 --> 00:29:43,497 BE ABLE TO FOCUS BETTER, BE 772 00:29:43,497 --> 00:29:45,198 BETTER, SO I JUST WANTED TO 773 00:29:45,198 --> 00:29:46,767 DO THE STUDY BECAUSE I KNOW 774 00:29:46,767 --> 00:29:50,470 IT WOULD SERVE MORE THAN 775 00:29:50,470 --> 00:29:50,804 JUST US. 776 00:29:50,804 --> 00:29:52,973 >> PERFECT, THANK YOU SO 777 00:29:52,973 --> 00:29:53,774 MUCH. 778 00:29:53,774 --> 00:29:58,011 SO YOU TALKED A LITTLE BIT 779 00:29:58,011 --> 00:29:58,712 THAT Dr. HARTNICK INVITED 780 00:29:58,712 --> 00:30:00,347 YOU TO JOIN THE STUDY. 781 00:30:00,347 --> 00:30:02,115 CAN YOU TELL US SO FAR WHAT 782 00:30:02,115 --> 00:30:03,750 YOUR EXPERIENCES HAVE BEEN 783 00:30:03,750 --> 00:30:04,785 WITH THE STUDY AND 784 00:30:04,785 --> 00:30:07,521 INTERACTING NOT ONLY WITH 785 00:30:07,521 --> 00:30:09,022 Dr. HARTNICK BUT THE REST 786 00:30:09,022 --> 00:30:10,557 OF THE RESEARCH TEAM? 787 00:30:10,557 --> 00:30:12,759 STPWHRAOEU FEEL LIKE IT HAS 788 00:30:12,759 --> 00:30:13,860 BEEN A SHORT-LIVED PROCESS 789 00:30:13,860 --> 00:30:15,028 BECAUSE IT WASN'T THAT LONG 790 00:30:15,028 --> 00:30:17,330 AGO THAT MY SON HAD SURGERY 791 00:30:17,330 --> 00:30:20,000 BUT ONE OF THE THINGS THAT I 792 00:30:20,000 --> 00:30:21,768 HAVE APPRECIATED IS THAT I 793 00:30:21,768 --> 00:30:24,471 HAVEN'T FELT LIKE IT'S A LOT 794 00:30:24,471 --> 00:30:25,972 OF OTHER THINGS THAT I NEED 795 00:30:25,972 --> 00:30:27,707 TO DO BECAUSE I ALREADY HAVE 796 00:30:27,707 --> 00:30:29,476 A LOT ON MY PLATE SO THE 797 00:30:29,476 --> 00:30:30,977 THOUGHT OF, YOU KNOW, 798 00:30:30,977 --> 00:30:32,846 SIGNING UP FOR A STUDY THAT 799 00:30:32,846 --> 00:30:35,749 MAYBE I AM GOING TO HAVE TO 800 00:30:35,749 --> 00:30:37,250 GO TO 25 APPOINTMENTS AND 801 00:30:37,250 --> 00:30:40,487 LIKE I AM HAVING A HARD TIME 802 00:30:40,487 --> 00:30:42,189 BREATHING, IT HAS NOT BEEN 803 00:30:42,189 --> 00:30:43,390 LIKE THAT. 804 00:30:43,390 --> 00:30:46,860 THE APPOINTMENTS HAVE BEEN 805 00:30:46,860 --> 00:30:50,363 SET GRADUALLY AND IT'S A 806 00:30:50,363 --> 00:30:51,264 BREATHABLE PROCESS. 807 00:30:51,264 --> 00:30:52,966 THERE IS SPACE IN BETWEEN SO 808 00:30:52,966 --> 00:30:54,734 I HAVE APPRECIATED THAT. 809 00:30:54,734 --> 00:30:56,203 >> SO IT SOUNDS LIKE YOU 810 00:30:56,203 --> 00:30:59,306 HAVE THE OPPORTUNITY NOT 811 00:30:59,306 --> 00:31:00,540 ONLY BECAUSE WE DO HEAR THAT 812 00:31:00,540 --> 00:31:02,375 A LOT, THAT IT IS A BURDEN, 813 00:31:02,375 --> 00:31:05,078 A LOT TO ASK FOR YOU TO COME 814 00:31:05,078 --> 00:31:06,580 IN MULTIPLE TIMES BUT IT 815 00:31:06,580 --> 00:31:08,181 SOUNDS LIKE THIS IS, YOU 816 00:31:08,181 --> 00:31:10,317 KNOW, ONCE YOU HAVE THE 817 00:31:10,317 --> 00:31:12,686 SURGERY AND THE TIME PERIOD 818 00:31:12,686 --> 00:31:14,788 THAT Dr. HARTNICK OUTLINED 819 00:31:14,788 --> 00:31:16,656 FOR THE POST-OP, IT IS 820 00:31:16,656 --> 00:31:17,824 WORKING OUT WELL FOR YOU AND 821 00:31:17,824 --> 00:31:20,694 WHAT YOU HAVE TO MANAGE WITH 822 00:31:20,694 --> 00:31:21,895 YOUR LOVED ONE. 823 00:31:21,895 --> 00:31:23,029 >> YES, AND ANOTHER THING I 824 00:31:23,029 --> 00:31:26,333 WANT TO MANSION IS BECAUSE I 825 00:31:26,333 --> 00:31:28,335 AM DOING THIS FOR IN SERVICE 826 00:31:28,335 --> 00:31:30,871 TO SOMETHING GREATER, THEN 827 00:31:30,871 --> 00:31:33,473 THE OBSTACLE OF DON'T BECOME 828 00:31:33,473 --> 00:31:35,809 SO STRONG BECAUSE WHEN I 829 00:31:35,809 --> 00:31:37,577 HAVE -- WHEN SOMETHING IS 830 00:31:37,577 --> 00:31:40,347 IMPORTANT TO ME, THEN THE 831 00:31:40,347 --> 00:31:41,348 OBSTACLES -- IT IS LIKE NO, 832 00:31:41,348 --> 00:31:42,582 THIS IS A COMMITMENT I MADE 833 00:31:42,582 --> 00:31:43,884 AND IT IS FOR SOMETHING 834 00:31:43,884 --> 00:31:45,218 GREATER AND I AM GOING TO 835 00:31:45,218 --> 00:31:47,354 FIGURE IT OUT NO MATTER 836 00:31:47,354 --> 00:31:47,654 WHAT. 837 00:31:47,654 --> 00:31:50,090 >> YEAH, AND THAT IS AMAZING 838 00:31:50,090 --> 00:31:52,659 BECAUSE IT SOUNDS LIKE IT IS 839 00:31:52,659 --> 00:31:54,794 THE BENEFITS NOT ONLY FOR 840 00:31:54,794 --> 00:31:56,863 YOUR SON AND YOU BUT FOR THE 841 00:31:56,863 --> 00:31:58,298 SCIENTIFIC RESEARCH TO THE 842 00:31:58,298 --> 00:31:59,499 LARGER COMMUNITY AS WELL, 843 00:31:59,499 --> 00:32:01,368 JUST TO GET THE DATA. 844 00:32:01,368 --> 00:32:03,770 SO CAN YOU SPEAK TO YOUR 845 00:32:03,770 --> 00:32:05,005 SON'S EXPERIENCE SO FOR 846 00:32:05,005 --> 00:32:06,306 WITHIN THE STUDY AND WHAT 847 00:32:06,306 --> 00:32:08,074 ARE SOME OF THE THINGS HE 848 00:32:08,074 --> 00:32:09,776 HAS ENJOYED, WHAT ARE SOME 849 00:32:09,776 --> 00:32:10,977 OF THE CHALLENGES OR THINGS 850 00:32:10,977 --> 00:32:13,013 THAT HAVE NOT BEEN AS 851 00:32:13,013 --> 00:32:14,714 PLEASANT AND THE EXPERIENCE? 852 00:32:14,714 --> 00:32:16,416 >> WHEN YOU THINK ABOUT THE 853 00:32:16,416 --> 00:32:17,817 STUDY, YOU MEAN WITH THE 854 00:32:17,817 --> 00:32:19,152 MACHINE ITSELF? 855 00:32:19,152 --> 00:32:21,755 >> YES, THE DEVICE ITSELF. 856 00:32:21,755 --> 00:32:23,957 >> OKAY, UM IT HAS BEEN 857 00:32:23,957 --> 00:32:26,960 INTERESTING BECAUSE MY SON 858 00:32:26,960 --> 00:32:28,628 IS 19 SO I FEEL LIKE MAYBE 859 00:32:28,628 --> 00:32:30,096 WHEN A CHILD IS YOUNGER, 860 00:32:30,096 --> 00:32:31,831 MAYBE THEY WILL NOT NOTICE 861 00:32:31,831 --> 00:32:33,366 THE DIFFERENCE AS MUCH BUT 862 00:32:33,366 --> 00:32:36,403 BECAUSE MY SON IS 19, HE 863 00:32:36,403 --> 00:32:37,070 NOTICES, OKAY, THIS MACHINE 864 00:32:37,070 --> 00:32:39,406 GOES ON AND ALL OF A SUDDEN, 865 00:32:39,406 --> 00:32:40,440 MY SON IS MOVING. 866 00:32:40,440 --> 00:32:43,243 SO IT HAS BEEN A PROCESS 867 00:32:43,243 --> 00:32:44,678 BECAUSE SOMETIMES HE IS NOT 868 00:32:44,678 --> 00:32:46,713 ASLEEP WHEN IT TURNS ON. 869 00:32:46,713 --> 00:32:48,281 SOMETIMES HE TAKES LONGER TO 870 00:32:48,281 --> 00:32:49,883 FALL ASLEEP SO EVEN IF I 871 00:32:49,883 --> 00:32:52,285 HAVE IT SET FOR 30 MINUTES, 872 00:32:52,285 --> 00:32:54,487 HE IS NOT ASLEEP AND, YOU 873 00:32:54,487 --> 00:33:04,297 KNOW, HIS TONGUE IS MOVING. 874 00:33:04,297 --> 00:33:06,466 AND HE IS -- MY SON IS THE 875 00:33:06,466 --> 00:33:06,800 CUTEST. 876 00:33:06,800 --> 00:33:08,802 SO HE STARTS MESSING WITH IT 877 00:33:08,802 --> 00:33:10,637 AND I ASK IS THE MACHINE 878 00:33:10,637 --> 00:33:12,872 BOTHERING YOU AND HE SAYS NO 879 00:33:12,872 --> 00:33:15,008 SO THAT GIVES ME PEACE TO 880 00:33:15,008 --> 00:33:16,243 KNOW THAT IT IS NOT 881 00:33:16,243 --> 00:33:18,445 BOTHERING HIM, IT IS JUST 882 00:33:18,445 --> 00:33:20,180 SOMETHING DIFFERENT AND NEW. 883 00:33:20,180 --> 00:33:21,581 TYPICALLY WE MOVE OUR OWN 884 00:33:21,581 --> 00:33:22,682 TONGUES BUT WHEN THIS 885 00:33:22,682 --> 00:33:24,417 MACHINE IS ON, IT IS MOVING 886 00:33:24,417 --> 00:33:25,952 HIS TONGUE FOR HIM SO IT IS 887 00:33:25,952 --> 00:33:28,021 A PROCESS OF HIM GETTING 888 00:33:28,021 --> 00:33:32,459 USED TO IT WHEN HE IS AWAKE 889 00:33:32,459 --> 00:33:34,861 BUT OVERALL, IT HAS BEEN 890 00:33:34,861 --> 00:33:37,230 GOOD, YEAH. 891 00:33:37,230 --> 00:33:37,631 >> AMAZING. 892 00:33:37,631 --> 00:33:39,199 SO ONE OF THE BENEFITS, AND 893 00:33:39,199 --> 00:33:43,937 I KNOW DOCTOR HARTNICK 894 00:33:43,937 --> 00:33:45,238 TALKED ABOUT WITH WITH 895 00:33:45,238 --> 00:33:48,074 REGARD TO SOME OF THE PILOT 896 00:33:48,074 --> 00:33:49,142 DATA, THE ANECDOTAL 897 00:33:49,142 --> 00:33:50,343 REPORTING BACK FROM PARENTS 898 00:33:50,343 --> 00:33:52,178 IS THEY HAD SEEN IMPROVEMENT 899 00:33:52,178 --> 00:33:54,281 IN JUST OVERALL WELL-BEING, 900 00:33:54,281 --> 00:33:56,149 ABILITY TO RECALL WORDS AND 901 00:33:56,149 --> 00:33:57,417 JUST PEOPLE'S MOODS. 902 00:33:57,417 --> 00:33:58,718 HAVE YOU SEEN ANY BENEFITS, 903 00:33:58,718 --> 00:34:00,487 AND I KNOW THIS IS VERY 904 00:34:00,487 --> 00:34:03,390 EARLY AS WELL IN THE STUDY 905 00:34:03,390 --> 00:34:05,892 BUT HAVE YOU SEEN ANY 906 00:34:05,892 --> 00:34:06,660 BENEFITS SO FAR? 907 00:34:06,660 --> 00:34:08,128 >> WELL, I HAVE HEARD FROM 908 00:34:08,128 --> 00:34:11,131 SCHOOL IN THE LAST COUPLE OF 909 00:34:11,131 --> 00:34:12,799 WEEKS THAT THEY HAVE BEEN 910 00:34:12,799 --> 00:34:15,702 ABLE TO UNDERSTAND HIM A 911 00:34:15,702 --> 00:34:18,672 LITTLE BETTER, WHICH I THINK 912 00:34:18,672 --> 00:34:22,342 IS A RESULT OF THIS PROCESS. 913 00:34:22,342 --> 00:34:26,646 MY SON ALSO DID HAVE A 914 00:34:26,646 --> 00:34:28,548 SURGERY PRIOR TO THIS WHICH 915 00:34:28,548 --> 00:34:31,785 WAS TO REDUCE HIS TONGUE 916 00:34:31,785 --> 00:34:33,086 BUT -- SO I THINK THAT 917 00:34:33,086 --> 00:34:36,856 HELPED HIM BE A LITTLE MORE 918 00:34:36,856 --> 00:34:37,590 CLEAR, TOO. 919 00:34:37,590 --> 00:34:43,096 BUT SO I THINK THAT IS A 920 00:34:43,096 --> 00:34:43,530 PLUS. 921 00:34:43,530 --> 00:34:46,066 THIS IS A TONGUE REDUCTION 922 00:34:46,066 --> 00:34:47,233 BUT IF HIS TONGUE WAS 923 00:34:47,233 --> 00:34:49,803 GETTING IN THE WAY OF HIM 924 00:34:49,803 --> 00:34:51,638 BEING ABLE TO JUST SPEAK 925 00:34:51,638 --> 00:34:53,506 CERTAIN WORDS AND BE 926 00:34:53,506 --> 00:34:54,641 UNDERSTOOD, IF THIS MACHINE 927 00:34:54,641 --> 00:34:56,476 IS HELPING HIM GET THE REST 928 00:34:56,476 --> 00:34:58,878 THAT HE NEEDS IN ORDER FOR 929 00:34:58,878 --> 00:35:01,348 HIM TO THINK AND BE MORE 930 00:35:01,348 --> 00:35:05,018 PRESENT IN SCHOOL SO THAT HE 931 00:35:05,018 --> 00:35:06,286 CAN LEARN, THOSE ARE PLUSES 932 00:35:06,286 --> 00:35:07,887 AND SO FOR ME TO HEAR FROM 933 00:35:07,887 --> 00:35:10,190 THE SCHOOL OVER THE LAST 934 00:35:10,190 --> 00:35:11,424 COUPLE OF WEEKS THAT THEY 935 00:35:11,424 --> 00:35:13,193 HAVE BEEN ABLE TO UNDERSTAND 936 00:35:13,193 --> 00:35:15,795 HIM MORE AND HE SEEMS A 937 00:35:15,795 --> 00:35:17,297 LITTLE MORE SETTLED, IS 938 00:35:17,297 --> 00:35:18,264 EXCITING TO ME BECAUSE THIS 939 00:35:18,264 --> 00:35:22,969 IS JUST THE BEGINNING. 940 00:35:22,969 --> 00:35:30,110 >> ALL RIGHT, AND Dr. 941 00:35:30,110 --> 00:35:31,444 HARTNICK CAN SPEAK TO THAT. 942 00:35:31,444 --> 00:35:33,246 I KNOW WE ARE ALWAYS 943 00:35:33,246 --> 00:35:34,080 PRESENTING THE POSITIVE SIDE 944 00:35:34,080 --> 00:35:36,116 BUT I THINK IT IS REALLY 945 00:35:36,116 --> 00:35:38,785 IMPORTANT TO SEE A 946 00:35:38,785 --> 00:35:40,320 WELL-ROUNDED PICTURE AND 947 00:35:40,320 --> 00:35:42,956 OBTAIN A WELL-ROUNDED 948 00:35:42,956 --> 00:35:43,556 PICTURE. 949 00:35:43,556 --> 00:35:45,792 HAVE THERE BEEN CHALLENGES 950 00:35:45,792 --> 00:35:47,660 AT ALL WITH REGARD TO THE 951 00:35:47,660 --> 00:35:49,262 DEVICE OR JUST IN TERMS OF 952 00:35:49,262 --> 00:35:50,430 BEING OPEN? 953 00:35:50,430 --> 00:35:52,399 AND IF THERE AREN'T ANY, 954 00:35:52,399 --> 00:35:53,333 WONDERFUL, WE DEFINITELY 955 00:35:53,333 --> 00:35:56,636 DON'T WANT TO CREATE ONE 956 00:35:56,636 --> 00:35:57,570 WHERE THERE ISN'T. 957 00:35:57,570 --> 00:35:58,872 >> YEAH, I THINK THE ONE 958 00:35:58,872 --> 00:36:00,907 THAT I MENTIONED WHERE, YOU 959 00:36:00,907 --> 00:36:03,743 KNOW, SOMETIMES HE IS JUST 960 00:36:03,743 --> 00:36:06,045 LIKE WEIRDED OUT ABOUT THE 961 00:36:06,045 --> 00:36:07,714 TONGUE BUT I DON'T THINK 962 00:36:07,714 --> 00:36:09,783 THAT'S A HUGE -- I THINK 963 00:36:09,783 --> 00:36:11,284 THAT'S JUST A NORMAL ONE. 964 00:36:11,284 --> 00:36:14,854 I DID WANT TO MENTION THAT 965 00:36:14,854 --> 00:36:18,391 THERE WAS AN APPOINTMENT -- 966 00:36:18,391 --> 00:36:19,826 I WENT TO A STUDY AND THIS 967 00:36:19,826 --> 00:36:21,761 WAS ONE OF THE FIRST STUDIES 968 00:36:21,761 --> 00:36:23,263 AND FOR WHATEVER REASON, ONE 969 00:36:23,263 --> 00:36:26,599 OF THE MACHINES DIDN'T WORK 970 00:36:26,599 --> 00:36:28,668 AND SO WHATEVER TESTING HE 971 00:36:28,668 --> 00:36:30,136 HAD TO TAKE, THEY WEREN'T 972 00:36:30,136 --> 00:36:33,506 ABLE TO GET IT SO THEY 973 00:36:33,506 --> 00:36:35,008 CALLED ME TO RESCHEDULE 974 00:36:35,008 --> 00:36:37,110 WHICH FELT LIKE I HAVE TO GO 975 00:36:37,110 --> 00:36:38,812 BACK INTO BOSTON, LIKE IT IS 976 00:36:38,812 --> 00:36:40,480 OVER 30 MINUTES AND ON A 977 00:36:40,480 --> 00:36:43,082 WORKING DAY, IT IS AN HOUR, 978 00:36:43,082 --> 00:36:45,752 LIKE WHAT THE HECK. 979 00:36:45,752 --> 00:36:49,756 BUT WHAT I DID APPRECIATE IS 980 00:36:49,756 --> 00:36:52,358 THAT Dr. HARTNICK AND THE 981 00:36:52,358 --> 00:36:53,993 STUDY TEAM, THE TEAM, WORKED 982 00:36:53,993 --> 00:36:55,295 TOGETHER IN ORDER FOR ME TO 983 00:36:55,295 --> 00:37:01,334 BE ABLE TO COME IN AND SEE 984 00:37:01,334 --> 00:37:02,535 Dr. HARTNICK ON THE SAME 985 00:37:02,535 --> 00:37:04,003 DAY TO GET THE MACHINES 986 00:37:04,003 --> 00:37:06,039 TURNED ON AND THEN IT WAS A 987 00:37:06,039 --> 00:37:08,074 10-MINUTE PROCESS FOR ME TO 988 00:37:08,074 --> 00:37:10,844 GO THROUGH THE STUDY TO GET 989 00:37:10,844 --> 00:37:11,911 THESE QUESTIONS ASKED. 990 00:37:11,911 --> 00:37:13,279 SO IT WASN'T LIKE OH MY GOD, 991 00:37:13,279 --> 00:37:17,884 I HAVE TO GO TWICE, LIKE 992 00:37:17,884 --> 00:37:19,886 THEY WORKED TOGETHER AND I 993 00:37:19,886 --> 00:37:21,387 APPRECIATE THAT THEY SEE ME 994 00:37:21,387 --> 00:37:22,689 AS A PARENT AND WORKED 995 00:37:22,689 --> 00:37:24,591 TOGETHER TO MAKE A SMOOTH 996 00:37:24,591 --> 00:37:25,158 PROCESS. 997 00:37:25,158 --> 00:37:26,159 >> NOT ONLY AS A PARENT BUT 998 00:37:26,159 --> 00:37:28,228 PART OF THE STUDY, RIGHT, 999 00:37:28,228 --> 00:37:29,128 BECAUSE AGAIN, WE WOULDN'T 1000 00:37:29,128 --> 00:37:31,431 BE ABLE TO GET THE DATA 1001 00:37:31,431 --> 00:37:33,099 WITHOUT PARTICIPANTS LIKE 1002 00:37:33,099 --> 00:37:36,102 YOURSELF AND WITH NICHOLAS. 1003 00:37:36,102 --> 00:37:38,171 SO JUST IN TO THAT, I THINK 1004 00:37:38,171 --> 00:37:39,906 ALSO THERE IS A RESEARCH 1005 00:37:39,906 --> 00:37:48,681 TEAM THAT WORKS WITH YOU AND 1006 00:37:48,681 --> 00:37:51,217 NOT NECESSARILY WORKING WITH 1007 00:37:51,217 --> 00:37:56,823 YOUR SCHEDULE, RIGHT? 1008 00:37:56,823 --> 00:37:59,526 SO ARE THERE SOME 1009 00:37:59,526 --> 00:38:02,395 SUGGESTIONS YOU HAVE WITH 1010 00:38:02,395 --> 00:38:03,162 FUTURE STUDIES? 1011 00:38:03,162 --> 00:38:04,597 >> I WROTE SOME NOTES. 1012 00:38:04,597 --> 00:38:05,999 JUST BE AWARE THAT PEOPLE 1013 00:38:05,999 --> 00:38:07,734 LIVE IN DIFFERENT PLACES AND 1014 00:38:07,734 --> 00:38:08,868 CONSIDER PEOPLE'S TIME SO 1015 00:38:08,868 --> 00:38:11,871 THAT YOU ALL ARE 1016 00:38:11,871 --> 00:38:12,906 ACCOMMODATING PARENTS AND 1017 00:38:12,906 --> 00:38:20,013 THAT THIS DOESN'T BECOME A 1018 00:38:20,013 --> 00:38:22,448 STRESSFUL PROCESS. 1019 00:38:22,448 --> 00:38:24,183 AND THAT THE PROCESS, WE 1020 00:38:24,183 --> 00:38:27,387 KNOW IT IS GOING TO SERVE 1021 00:38:27,387 --> 00:38:28,655 FOR THE FUTURE. 1022 00:38:28,655 --> 00:38:30,323 SO THAT -- BECAUSE IF THE 1023 00:38:30,323 --> 00:38:31,591 FOCUS BECOMES ON MY STRESS, 1024 00:38:31,591 --> 00:38:37,063 THEN IT IS LIKE AGH, IT IS 1025 00:38:37,063 --> 00:38:38,464 LIKE WE'RE MISSING THE POINT 1026 00:38:38,464 --> 00:38:38,765 HERE. 1027 00:38:38,765 --> 00:38:42,468 SO IF PEOPLE CAN JUST THINK 1028 00:38:42,468 --> 00:38:43,136 AND CONSIDER PARENTS' 1029 00:38:43,136 --> 00:38:44,938 SCHEDULES AND THEIR ADDED 1030 00:38:44,938 --> 00:38:46,973 STRESS AND DO WHAT WAS DONE 1031 00:38:46,973 --> 00:38:48,341 FOR ME ESSENTIALLY, WHAT WAS 1032 00:38:48,341 --> 00:38:51,678 DONE FOR ME WAS LIKE WE GOT 1033 00:38:51,678 --> 00:38:51,945 YOU. 1034 00:38:51,945 --> 00:38:53,046 YOU KNOW, YOU MADE A 1035 00:38:53,046 --> 00:38:54,280 COMMITMENT TO DO SOMETHING 1036 00:38:54,280 --> 00:38:57,617 AND WE GOT YOU, WE'RE NOT 1037 00:38:57,617 --> 00:38:59,152 TRYING TO MAKE THIS MORE 1038 00:38:59,152 --> 00:39:00,420 CHALLENGING THAN IT HAS TO 1039 00:39:00,420 --> 00:39:02,422 BE, YOU CAN COME IN A AWOKE 1040 00:39:02,422 --> 00:39:05,158 TO SEE Dr. HARTNICK AND 1041 00:39:05,158 --> 00:39:07,627 COME HERE AND YOU ARE DONE. 1042 00:39:07,627 --> 00:39:18,104 THANK YOU, THANK YOU SO 1043 00:39:22,342 --> 00:39:22,909 MUCH. 1044 00:39:22,909 --> 00:39:23,810 [LAUGHTER] 1045 00:39:23,810 --> 00:39:26,980 >> AND I CAN IMAGINE BECAUSE 1046 00:39:26,980 --> 00:39:29,449 D.C. TRAFFIC IS HORRIBLE. 1047 00:39:29,449 --> 00:39:31,451 ONE MORE QUESTION, I KNOW 1048 00:39:31,451 --> 00:39:32,819 INVOLVED AS AN ARTIST. 1049 00:39:32,819 --> 00:39:34,921 CAN YOU TELL ME YOUR 1050 00:39:34,921 --> 00:39:35,788 MOTIVATION BEHIND WRITING 1051 00:39:35,788 --> 00:39:37,256 YOUR BOOK AND IF YOU HAVE AN 1052 00:39:37,256 --> 00:39:38,591 EXAMPLE OF YOUR BOOK NEARBY, 1053 00:39:38,591 --> 00:39:41,961 I WOULD LIKE YOU TO SHARE IT 1054 00:39:41,961 --> 00:39:44,230 BUT JUST TELL US THE 1055 00:39:44,230 --> 00:39:45,431 MOTIVATIONS BEHIND YOUR 1056 00:39:45,431 --> 00:39:45,898 BOOK. 1057 00:39:45,898 --> 00:39:47,233 >> THANK YOU, THANK YOU FOR 1058 00:39:47,233 --> 00:39:47,600 ASKING. 1059 00:39:47,600 --> 00:39:49,469 I WILL SHOW YOU MY BOOK REAL 1060 00:39:49,469 --> 00:39:49,769 QUICK. 1061 00:39:49,769 --> 00:39:53,506 SO THE NAME IS "AWAKENED 1062 00:39:53,506 --> 00:39:55,975 WINNERS" AND THE SUBTITLE IS 1063 00:39:55,975 --> 00:39:56,542 WE ALREADY WON. 1064 00:39:56,542 --> 00:39:58,611 AND THIS IS A PICTURE OF MY 1065 00:39:58,611 --> 00:40:00,146 BEAUTIFUL SON, LIKE I AM 1066 00:40:00,146 --> 00:40:02,982 JUST OBSESSED WITH HIM. 1067 00:40:02,982 --> 00:40:06,452 SO MY MOTIVATION IN WRITING 1068 00:40:06,452 --> 00:40:08,021 A BOOK, SO MY EXPERIENCE 1069 00:40:08,021 --> 00:40:09,389 AFTER I HAD NICHOLAS WAS 1070 00:40:09,389 --> 00:40:11,190 VERY INTERESTING TO ME 1071 00:40:11,190 --> 00:40:14,894 BECAUSE I NEVER FELT GRIEF 1072 00:40:14,894 --> 00:40:16,396 AROUND HIS DIAGNOSIS, BUT 1073 00:40:16,396 --> 00:40:18,898 WHAT I EXPERIENCED WAS OTHER 1074 00:40:18,898 --> 00:40:20,433 PEOPLE PROJECTING THAT 1075 00:40:20,433 --> 00:40:21,801 SOMETHING WAS REALLY BAD, 1076 00:40:21,801 --> 00:40:23,336 LIKE YOU KNOW PEOPLE WOULD 1077 00:40:23,336 --> 00:40:25,104 SAY THINGS LIKE WHY DO YOU 1078 00:40:25,104 --> 00:40:26,639 THINK THAT HAPPENED TO YOU, 1079 00:40:26,639 --> 00:40:27,674 YOU ARE SUCH A GOOD PERSON 1080 00:40:27,674 --> 00:40:29,275 AND I STILL HAVE A HARD TIME 1081 00:40:29,275 --> 00:40:32,512 SAYING THAT BECAUSE IT JUST 1082 00:40:32,512 --> 00:40:33,479 BREAKS MY HEART. 1083 00:40:33,479 --> 00:40:34,447 OR DO YOU THINK THAT 1084 00:40:34,447 --> 00:40:36,883 HAPPENED TO YOU BECAUSE OF 1085 00:40:36,883 --> 00:40:40,687 HIS DAD OR YOU, JUST IT WAS 1086 00:40:40,687 --> 00:40:48,327 FIGURING OUT HOW THIS ERROR 1087 00:40:48,327 --> 00:40:49,062 OCCURRED. 1088 00:40:49,062 --> 00:40:50,029 BUT FOR ME, I NEVER THOUGHT 1089 00:40:50,029 --> 00:40:52,432 IT HAVE AS AN ERROR, I DON'T 1090 00:40:52,432 --> 00:40:54,834 SEE MY SON AS AN ERROR, I 1091 00:40:54,834 --> 00:40:56,869 THINK OF HIM AS A WHOLE 1092 00:40:56,869 --> 00:40:59,038 HUMAN BORN PERFECT AND 1093 00:40:59,038 --> 00:40:59,839 COMPLETE. 1094 00:40:59,839 --> 00:41:02,575 AND ONE DAY I GOT A MESSAGE 1095 00:41:02,575 --> 00:41:03,910 OF THE AWAKENED WINNERS AND 1096 00:41:03,910 --> 00:41:06,179 FELT IT WAS A DOWNLOAD TO BE 1097 00:41:06,179 --> 00:41:07,680 SHARED WITH THE WORLD. 1098 00:41:07,680 --> 00:41:09,982 NOT ONLY TO EXPRESS THAT MY 1099 00:41:09,982 --> 00:41:12,151 SON IS A WINNER LIKE WE ALL 1100 00:41:12,151 --> 00:41:14,954 ARE BUT TO HELP PEOPLE 1101 00:41:14,954 --> 00:41:17,356 AWAKEN TO THEIR OWN 1102 00:41:17,356 --> 00:41:18,324 MAGNIFICENCE BECAUSE ANYONE 1103 00:41:18,324 --> 00:41:21,060 WHO DOESN'T SEE MY SON'S 1104 00:41:21,060 --> 00:41:22,228 MAGNIFICENCE DOESN'T SEE 1105 00:41:22,228 --> 00:41:24,664 THEIR OWN. 1106 00:41:24,664 --> 00:41:29,936 >> THAT IS PROFOUND AND I 1107 00:41:29,936 --> 00:41:36,409 WISH I COULD -- 1108 00:41:36,409 --> 00:41:38,311 [INDISCERNIBLE] 1109 00:41:38,311 --> 00:41:39,812 [LAUGHTER] 1110 00:41:39,812 --> 00:41:41,114 [INAUDIBLE]-- THANK YOU 1111 00:41:41,114 --> 00:41:43,349 AGAIN AND APPRECIATE YOUR 1112 00:41:43,349 --> 00:41:45,051 PARTICIPATING IN Dr. 1113 00:41:45,051 --> 00:41:46,853 HARTNICK'S STUDY AND AT THIS 1114 00:41:46,853 --> 00:41:51,858 TIME I WELCOME BACK Dr. 1115 00:41:51,858 --> 00:41:54,460 HARTNICK AND ASK KELLY KING 1116 00:41:54,460 --> 00:41:56,295 AND LAURIE RYAN TO JOIN US 1117 00:41:56,295 --> 00:41:56,796 AS WELL. 1118 00:41:56,796 --> 00:41:59,232 I OPEN IT UP TO Q&A AND SEE 1119 00:41:59,232 --> 00:42:00,199 THERE ARE QUESTIONS THAT 1120 00:42:00,199 --> 00:42:01,234 COME IN. 1121 00:42:01,234 --> 00:42:02,668 >> I WANT TO SAY THANK YOU 1122 00:42:02,668 --> 00:42:05,271 FOR THOSE BEING A PART AND 1123 00:42:05,271 --> 00:42:07,106 SHARING AND JUST HOW 1124 00:42:07,106 --> 00:42:08,541 WONDERFUL NICK IS BUT HOW 1125 00:42:08,541 --> 00:42:12,378 WONDERFUL BOTH OF YOU ARE 1126 00:42:12,378 --> 00:42:13,179 AND THESE STUDIES WORK 1127 00:42:13,179 --> 00:42:15,248 BECAUSE YOU ARE SUCH A 1128 00:42:15,248 --> 00:42:16,482 PARTICIPANT IN THE STUDY AND 1129 00:42:16,482 --> 00:42:17,683 IT IS A SHARED EXPERIENCE. 1130 00:42:17,683 --> 00:42:19,252 SO THANK YOU FOR SHARING 1131 00:42:19,252 --> 00:42:19,852 YOUR STORY. 1132 00:42:19,852 --> 00:42:25,558 >> THANK YOU SO MUCH, THANK 1133 00:42:25,558 --> 00:42:26,125 YOU. 1134 00:42:26,125 --> 00:42:27,960 >> GO AHEAD, KELLY. 1135 00:42:27,960 --> 00:42:29,395 >> YEAH, ABSOLUTELY, SORT OF 1136 00:42:29,395 --> 00:42:34,033 IN MY MOMENT OF BEING MOVED 1137 00:42:34,033 --> 00:42:35,168 BY MS. DOMINGUEZ' WORDS 1138 00:42:35,168 --> 00:42:37,470 THERE AND I SHARE IN 1139 00:42:37,470 --> 00:42:38,271 EVERYONE'S GRATITUDE SO WE 1140 00:42:38,271 --> 00:42:40,239 WILL MOVE TO THE QUESTION 1141 00:42:40,239 --> 00:42:43,142 AND ANSWER QUESTION, THIS IS 1142 00:42:43,142 --> 00:42:45,545 FOR Dr. HARTNICK OR 1143 00:42:45,545 --> 00:42:46,579 MS. DOMINGUEZ SO FEEL FREE 1144 00:42:46,579 --> 00:42:48,147 TO PUT YOUR QUESTIONS IN THE 1145 00:42:48,147 --> 00:42:49,715 Q&A AND WE SHOULD BE ABLE TO 1146 00:42:49,715 --> 00:42:51,651 GET TO ALL OF THEM. 1147 00:42:51,651 --> 00:42:53,653 SO Dr. HARTNICK, COULD YOU 1148 00:42:53,653 --> 00:42:55,254 REVISIT THE AGE CRITERIA FOR 1149 00:42:55,254 --> 00:42:56,756 PARTICIPATING IN THE STUDY? 1150 00:42:56,756 --> 00:43:04,197 >> SO THE AGE CRITERIA IS 1151 00:43:04,197 --> 00:43:09,001 FOR KIDS 10-21 AND IN THE 1152 00:43:09,001 --> 00:43:09,902 STUDY ITSELF. 1153 00:43:09,902 --> 00:43:11,003 IT IS IMPORTANT FOR 1154 00:43:11,003 --> 00:43:14,607 PEOPLE -- WHEN WE STARTED 1155 00:43:14,607 --> 00:43:17,610 THIS STUDY THIS WAS NONFDA 1156 00:43:17,610 --> 00:43:23,049 APPROVED FOR THAT AGE 1157 00:43:23,049 --> 00:43:25,218 POPULATION. 1158 00:43:25,218 --> 00:43:28,054 AS OF WORLD ALDERMEN LAST 1159 00:43:28,054 --> 00:43:29,889 YEAR, PART OF THE WORK WE 1160 00:43:29,889 --> 00:43:32,959 COULD HAVE DONE, IT IS NOW A 1161 00:43:32,959 --> 00:43:35,127 FDA-APPROVED DEVICE FOR THIS 1162 00:43:35,127 --> 00:43:45,671 POPULATION OF KIDS AGE 1313. 1163 00:43:46,806 --> 00:43:48,374 1 3 -- AGE 13. 1164 00:43:48,374 --> 00:43:52,945 BUT FOR KIDS UNDER 13, IT 1165 00:43:52,945 --> 00:43:58,985 WAS NOT APPROVED TO BE 1166 00:43:58,985 --> 00:43:59,652 IMPLANTED -- [ INDISCERNIBLE 1167 00:43:59,652 --> 00:44:00,119 ]. 1168 00:44:00,119 --> 00:44:00,753 [INAUDIBLE] 1169 00:44:00,753 --> 00:44:01,454 >> THAT TIES INTO ANOTHER 1170 00:44:01,454 --> 00:44:02,822 QUESTION THAT WAS ASKED 1171 00:44:02,822 --> 00:44:04,790 WHETHER WE ANTICIPATE THE 1172 00:44:04,790 --> 00:44:06,158 CHILDREN YOUNGER THAN 10 MAY 1173 00:44:06,158 --> 00:44:08,194 EVENTUALLY BE ABLE TO HAVE 1174 00:44:08,194 --> 00:44:09,528 THAT IMPLANTATION IF THEY 1175 00:44:09,528 --> 00:44:14,834 MOOT -- MEET THE CRITERIA 1176 00:44:14,834 --> 00:44:18,170 AND WHY OR WHY NOT YOU MAY 1177 00:44:18,170 --> 00:44:19,639 MAKE THAT PREDICTION? 1178 00:44:19,639 --> 00:44:22,041 >> SO MANY PARENTS ASK THAT. 1179 00:44:22,041 --> 00:44:23,643 I AM OLD ENOUGH TO HAVE BEEN 1180 00:44:23,643 --> 00:44:27,280 PART OF THE COCHLEAR IMPLANT 1181 00:44:27,280 --> 00:44:33,419 EXPERIENCE WHERE WE STARTED 1182 00:44:33,419 --> 00:44:35,121 OLDER AND WORKED OUR WAY 1183 00:44:35,121 --> 00:44:39,725 YOUNGER, WE WANTED TO BE 1184 00:44:39,725 --> 00:44:41,360 SAFE AND IMPROVE SAFETY. 1185 00:44:41,360 --> 00:44:44,797 WE HAVE IMPLANTED A 1186 00:44:44,797 --> 00:44:45,965 4-YEAR-OLD WITH DOWN 1187 00:44:45,965 --> 00:44:47,300 SYNDROME WHOSE PARENTS ARE 1188 00:44:47,300 --> 00:44:51,304 JUST AS LOVELY AS CAN BE AND 1189 00:44:51,304 --> 00:44:52,705 WERE SUFFERING TERRIBLY. 1190 00:44:52,705 --> 00:44:59,278 SO I KNOW, A, HAVING DONE 1191 00:44:59,278 --> 00:45:05,217 IT, THE HYPOGLOSSAL IS BIG 1192 00:45:05,217 --> 00:45:07,486 ENOUGH FOR KIDS TO HAVE THAT 1193 00:45:07,486 --> 00:45:09,755 IMPLANTATION AT A FAR 1194 00:45:09,755 --> 00:45:11,023 EARLIER AGE. 1195 00:45:11,023 --> 00:45:12,591 I HAVE STRONG FEELINGS IT 1196 00:45:12,591 --> 00:45:14,226 WILL BE IMPLANTED OVER TIME 1197 00:45:14,226 --> 00:45:15,227 BECAUSE THERE ARE SO MANY 1198 00:45:15,227 --> 00:45:18,431 YEARS OF KIDS BEING ABLE TO 1199 00:45:18,431 --> 00:45:19,565 HAVE INCREASED NEURO-- IT IS 1200 00:45:19,565 --> 00:45:20,633 TRUE THAT THEY CERTAINLY 1201 00:45:20,633 --> 00:45:24,003 WILL SLEEP BETTER AND HAVE 1202 00:45:24,003 --> 00:45:24,637 BETTER NEUROCOGNITION AND 1203 00:45:24,637 --> 00:45:25,171 EXPRESSIVE LANGUAGE. 1204 00:45:25,171 --> 00:45:27,273 SO I THINK WE ARE IN EARLY 1205 00:45:27,273 --> 00:45:29,775 DAYS BUT WE HAVE TO WORK 1206 00:45:29,775 --> 00:45:31,811 TOGETHER SLOWLY AND SAFELY 1207 00:45:31,811 --> 00:45:33,412 AND WELL AND LEARN FROM OUR 1208 00:45:33,412 --> 00:45:34,613 EXPERIENCE AS WE GO SLOW. 1209 00:45:34,613 --> 00:45:37,416 SO I THINK THAT IS MY SUPER 1210 00:45:37,416 --> 00:45:38,751 LONG-WINDED WAY OF SAYING 1211 00:45:38,751 --> 00:45:41,454 YES, IT WILL HAPPEN EARLIER, 1212 00:45:41,454 --> 00:45:46,392 JUST IN SMALL BABY STEPS. 1213 00:45:46,392 --> 00:45:51,831 >> SO WE HAVE AN AUDIENCE 1214 00:45:51,831 --> 00:45:54,000 MEMBER SHARE THAT THEIR SON 1215 00:45:54,000 --> 00:45:55,668 WHO WILL TURN 6 NEXT MONTH 1216 00:45:55,668 --> 00:45:56,902 ALREADY HAD ONE SLEEP STUDY 1217 00:45:56,902 --> 00:45:59,772 AND IT WAS A TERRIBLE 1218 00:45:59,772 --> 00:46:00,306 EXPERIENCE. 1219 00:46:00,306 --> 00:46:04,677 THEY DID WIND UP REMOVING 1220 00:46:04,677 --> 00:46:05,344 THEIR TONSILS AND ADENOIDS 1221 00:46:05,344 --> 00:46:07,346 BUT HE IS STILL RESTLESS AND 1222 00:46:07,346 --> 00:46:09,181 TOSSES AND TURNS ALL NIGHT 1223 00:46:09,181 --> 00:46:11,484 AND IS A SUPER LINE LIGHT 1224 00:46:11,484 --> 00:46:12,818 SLEEPER. 1225 00:46:12,818 --> 00:46:13,619 THEY ARE INTIMIDATED AND 1226 00:46:13,619 --> 00:46:14,987 SCARED OF ANOTHER SLEEP 1227 00:46:14,987 --> 00:46:16,622 STUDY AND CURIOUS IF YOU 1228 00:46:16,622 --> 00:46:18,624 HAVE ANY ADVICE FOR HOW TO 1229 00:46:18,624 --> 00:46:21,527 GET A BETTER OUTCOME OR 1230 00:46:21,527 --> 00:46:22,561 BETTER PREPARATION FOR NOT 1231 00:46:22,561 --> 00:46:24,096 ONLY THE CHILD BUT THE 1232 00:46:24,096 --> 00:46:26,165 FAMILY IF THEY WERE TO ENTER 1233 00:46:26,165 --> 00:46:27,666 ANOTHER STUDY. 1234 00:46:27,666 --> 00:46:29,468 >> FIRST OF ALL, HOPEFULLY 1235 00:46:29,468 --> 00:46:37,977 THAT CARTOON HELPS A LITTLE 1236 00:46:37,977 --> 00:46:38,611 BIT. 1237 00:46:38,611 --> 00:46:41,647 MOST LABS ALLOW THE KIDS TO 1238 00:46:41,647 --> 00:46:43,215 TOUR THE LAB IF THAT IS 1239 00:46:43,215 --> 00:46:44,717 HELPFUL AT ALL BUT I FEEL 1240 00:46:44,717 --> 00:46:45,785 AND SHARE YOUR PAIN. 1241 00:46:45,785 --> 00:46:48,687 IT IS A LOT OF WIRES, IT 1242 00:46:48,687 --> 00:46:50,923 REALLY IS. 1243 00:46:50,923 --> 00:46:52,658 AND SOMETIMES IT IS HARD TO 1244 00:46:52,658 --> 00:46:56,062 HAVE A SLEEP LAB AND SLEEP 1245 00:46:56,062 --> 00:46:57,363 STUDY AS A CHILD WHETHER OR 1246 00:46:57,363 --> 00:46:58,297 NOT THEY HAVE DOWN SYNDROME 1247 00:46:58,297 --> 00:47:03,969 OR NOT AND HARD TO BE A 1248 00:47:03,969 --> 00:47:05,738 PARENT DURING A SLEEP STUDY 1249 00:47:05,738 --> 00:47:08,407 AS WELL SO I KNOW IT IS HARD 1250 00:47:08,407 --> 00:47:14,246 AND FEEL YOUR PAIN. 1251 00:47:14,246 --> 00:47:17,683 >> ALSO KELLY, I HAVE A 1252 00:47:17,683 --> 00:47:19,185 QUESTION FOR MS. DOMINGUEZ, 1253 00:47:19,185 --> 00:47:20,686 CAN YOU TELL ABOUT YOUR 1254 00:47:20,686 --> 00:47:22,288 DECISION TO PARTICIPATE IN A 1255 00:47:22,288 --> 00:47:25,191 SLEEP STUDY PRIOR TO Dr. 1256 00:47:25,191 --> 00:47:27,093 HARTNICK OR IN ADDITION TO? 1257 00:47:27,093 --> 00:47:28,160 >> I WAS ALREADY THINKING 1258 00:47:28,160 --> 00:47:29,795 BECAUSE YES, IT IS NOT A 1259 00:47:29,795 --> 00:47:30,729 EASY PROCESS. 1260 00:47:30,729 --> 00:47:35,167 AND ONE THING I MENTIONED TO 1261 00:47:35,167 --> 00:47:38,404 Dr. HARTNICK TOO IS MY SON 1262 00:47:38,404 --> 00:47:39,672 IS TYPICALLY ASLEEP BY NINE 1263 00:47:39,672 --> 00:47:41,774 AND FOR SOME REASON HE WAS 1264 00:47:41,774 --> 00:47:43,242 SCHEDULED FOR NINE FOR A 1265 00:47:43,242 --> 00:47:44,577 SLEEP STUDY AND I WAS LIKE 1266 00:47:44,577 --> 00:47:46,312 NO, BECAUSE BY THE TIME THEY 1267 00:47:46,312 --> 00:47:48,848 GOT THE WIRES ON MY SON, IT 1268 00:47:48,848 --> 00:47:51,016 WAS 10:00 AND MY SON WAS 1269 00:47:51,016 --> 00:47:52,084 EXHAUSTED AND I WAS VERY 1270 00:47:52,084 --> 00:47:54,153 UPSET AND I WAS LIKE THIS IS 1271 00:47:54,153 --> 00:47:54,753 NOT IT. 1272 00:47:54,753 --> 00:47:56,622 SO NOW THEY ARE MAKING IT A 1273 00:47:56,622 --> 00:47:58,324 POINT TO MAKE SURE THE 1274 00:47:58,324 --> 00:48:00,392 APPOINTMENTS ARE SET AT 1275 00:48:00,392 --> 00:48:01,827 EIGHT BUT YES, THAT IS A LOT 1276 00:48:01,827 --> 00:48:03,562 OF WIRES TO BE PLACED ON 1277 00:48:03,562 --> 00:48:03,863 HIM. 1278 00:48:03,863 --> 00:48:05,197 HE IS NOT SLEEPING THE WAY 1279 00:48:05,197 --> 00:48:06,565 HE WOULD SLEEP AT HOME, 1280 00:48:06,565 --> 00:48:07,166 RIGHT? 1281 00:48:07,166 --> 00:48:09,668 LIKE HE IS NOT COMFORTABLE, 1282 00:48:09,668 --> 00:48:11,737 LIKE, WITH THESE THINGS ON 1283 00:48:11,737 --> 00:48:12,104 HIS HEAD. 1284 00:48:12,104 --> 00:48:15,407 SO HE HAS HAD A LOT OF SLEEP 1285 00:48:15,407 --> 00:48:16,876 STUDIES SO I FEEL LIKE HE IS 1286 00:48:16,876 --> 00:48:18,077 KIND OF USED TO THE PROCESS 1287 00:48:18,077 --> 00:48:20,246 BUT IT IS STILL NOT 1288 00:48:20,246 --> 00:48:21,147 COMFORTABLE. 1289 00:48:21,147 --> 00:48:24,283 SO I TOTALLY FEEL COMPASSION 1290 00:48:24,283 --> 00:48:25,818 FOR CHILDREN OR ADULTS AND 1291 00:48:25,818 --> 00:48:29,555 PARENTS GOING THROUGH THIS 1292 00:48:29,555 --> 00:48:29,922 PROCESS. 1293 00:48:29,922 --> 00:48:32,258 >> BUT I THINK AS YOU 1294 00:48:32,258 --> 00:48:34,026 MENTIONED, Dr. HARTNICK 1295 00:48:34,026 --> 00:48:36,262 AND HIS TEAM WAS WILLING -- 1296 00:48:36,262 --> 00:48:36,929 GIVEN THE EXPERIENCE THAT 1297 00:48:36,929 --> 00:48:39,999 YOU HAD THAT WAS NOT 1298 00:48:39,999 --> 00:48:40,900 NECESSARILY PLANET THE FIRST 1299 00:48:40,900 --> 00:48:41,800 TIME, THEY WERE WILLING TO 1300 00:48:41,800 --> 00:48:43,369 WORK WITH YOU TO FIND A 1301 00:48:43,369 --> 00:48:44,537 STUDY TEAM THAT WAS ABLE TO 1302 00:48:44,537 --> 00:48:45,938 WORK WITH YOU AND UNDERSTAND 1303 00:48:45,938 --> 00:48:48,440 YOU AND YOUR CHILD'S NEEDS 1304 00:48:48,440 --> 00:48:49,808 AS IMPORTANT. 1305 00:48:49,808 --> 00:48:52,311 >> YES, AND Dr. HARTNICK 1306 00:48:52,311 --> 00:48:53,546 WASN'T EVEN AWARE, RIGHT, 1307 00:48:53,546 --> 00:48:58,017 LIKE THERE IS SCHEDULING, 1308 00:48:58,017 --> 00:48:59,952 THERE IS DIFFERENT THINGS, 1309 00:48:59,952 --> 00:49:03,355 AND TOTALLY HE UNDERSTOOD 1310 00:49:03,355 --> 00:49:05,891 THAT AT 9:00, IT WOULD BE A 1311 00:49:05,891 --> 00:49:06,158 LOT. 1312 00:49:06,158 --> 00:49:07,826 BUT YES, THEY ARE NOW 1313 00:49:07,826 --> 00:49:09,295 WILLING TO ACCOMMODATE AND 1314 00:49:09,295 --> 00:49:10,162 THE SAME THING THAT HAPPENED 1315 00:49:10,162 --> 00:49:13,465 WITH THE OTHER APPOINTMENT, 1316 00:49:13,465 --> 00:49:15,301 RIGHT, LIKE I SPEAK AND 1317 00:49:15,301 --> 00:49:15,801 SOMETHING SHIFTS. 1318 00:49:15,801 --> 00:49:18,370 LIKE I HAVE TO BE MY OWN 1319 00:49:18,370 --> 00:49:19,505 ADVOCATE AND SAY HEY, THIS 1320 00:49:19,505 --> 00:49:21,574 IS NOT GOING TO WORK OR THIS 1321 00:49:21,574 --> 00:49:24,143 IS GOING TO WORK AND THINGS 1322 00:49:24,143 --> 00:49:29,481 SHIFT ACCORDINGLY TO THAT. 1323 00:49:29,481 --> 00:49:31,016 >> Dr. HARTNICK, ARE THERE 1324 00:49:31,016 --> 00:49:33,052 ANY OTHER HOSPITALS AROUND 1325 00:49:33,052 --> 00:49:35,020 THE COUNTRY THAT ARE ABLE TO 1326 00:49:35,020 --> 00:49:36,322 DO THIS SURGERY BESIDES YOUR 1327 00:49:36,322 --> 00:49:38,023 OWN AND ALONG WITH THAT, IS 1328 00:49:38,023 --> 00:49:39,592 IT POSSIBLE TO DO THE 1329 00:49:39,592 --> 00:49:40,192 PROCEDURE OUTSIDE OF THE 1330 00:49:40,192 --> 00:49:41,627 UNITED STATES OR TO LEARN 1331 00:49:41,627 --> 00:49:42,861 MORE ABOUT IT? 1332 00:49:42,861 --> 00:49:44,363 YOU HAVE ANY EXPERIENCE WITH 1333 00:49:44,363 --> 00:49:46,799 THIS BEING DONE GLOBALLY? 1334 00:49:46,799 --> 00:49:49,101 >> YEAH, IN THE STATES, THIS 1335 00:49:49,101 --> 00:49:51,637 IS A MULTI-- WELL ON FOR THE 1336 00:49:51,637 --> 00:49:55,808 STUDY ITSELF, IT IS A 1337 00:49:55,808 --> 00:49:56,909 MULTI-CENTERED STUDY AND 1338 00:49:56,909 --> 00:49:58,877 THERE ARE SITES, 1339 00:49:58,877 --> 00:50:01,213 PARTICULARLY IN 1340 00:50:01,213 --> 00:50:02,548 PHILADELPHIA, PITTSBURGH, 1341 00:50:02,548 --> 00:50:04,216 ATLANTA, IN CINCINNATI, AND 1342 00:50:04,216 --> 00:50:06,085 IN TEXAS, SO THERE ARE 1343 00:50:06,085 --> 00:50:07,720 MULTIPLE SITES ALONG THE 1344 00:50:07,720 --> 00:50:09,755 WAY. 1345 00:50:09,755 --> 00:50:11,557 THERE ARE CENTERS THAT 1346 00:50:11,557 --> 00:50:13,192 ARE -- AND TO BE CLEAR, IF 1347 00:50:13,192 --> 00:50:16,662 YOU ARE DEPENDING ON YOUR 1348 00:50:16,662 --> 00:50:21,100 FEE YO GRAPH CALL CLINIC, IF 1349 00:50:21,100 --> 00:50:22,635 YOU CONTACT US, WE WOULD BE 1350 00:50:22,635 --> 00:50:23,936 HAPPY TO DIRECT YOU BECAUSE 1351 00:50:23,936 --> 00:50:27,172 THE CLOSER YOU CAN BE TO 1352 00:50:27,172 --> 00:50:29,108 HOME, IT IS BETTER. 1353 00:50:29,108 --> 00:50:32,278 SO THERE ARE STUDIES 1354 00:50:32,278 --> 00:50:34,280 BUILDING OFF THE CENTERS AND 1355 00:50:34,280 --> 00:50:34,880 BUILDING EXPERIENCE. 1356 00:50:34,880 --> 00:50:36,849 I KNOW THEY ARE DOING THE 1357 00:50:36,849 --> 00:50:37,883 FIRST IMPLANTATIONS IN 1358 00:50:37,883 --> 00:50:40,919 ENGLAND NEXT WEEK WITH A 1359 00:50:40,919 --> 00:50:43,555 WONDERFUL GROUP ON NORMAL 1360 00:50:43,555 --> 00:50:44,990 STREET AND I KNOW I HAVE 1361 00:50:44,990 --> 00:50:45,824 BEEN INVOLVED WITH THE 1362 00:50:45,824 --> 00:50:47,960 BEGINNINGS OF THE PROGRAM IN 1363 00:50:47,960 --> 00:50:52,631 SINGAPORE SO IT IS GAINING 1364 00:50:52,631 --> 00:50:53,732 TRACTION ELSEWHERE BUT IT IS 1365 00:50:53,732 --> 00:50:57,970 IN TERMS OF LITTLE STEPS. 1366 00:50:57,970 --> 00:51:04,143 >> I WAS GOING TO SAY Dr. 1367 00:51:04,143 --> 00:51:06,011 HARTNICK, WE MAY HAVE TO 1368 00:51:06,011 --> 00:51:07,713 DISTRIBUTE YOUR E-MAIL TO 1369 00:51:07,713 --> 00:51:09,048 THE GROUP BECAUSE THERE IS 1370 00:51:09,048 --> 00:51:11,950 DEFINITELY INTEREST IN 1371 00:51:11,950 --> 00:51:13,552 LEARNING MORE ABOUT THAT AS 1372 00:51:13,552 --> 00:51:14,119 WELL. 1373 00:51:14,119 --> 00:51:14,453 >> SURE. 1374 00:51:14,453 --> 00:51:16,355 >> THIS IS A GOOD QUESTION 1375 00:51:16,355 --> 00:51:22,428 FOR BOTH Dr. HARTNICK AND 1376 00:51:22,428 --> 00:51:28,000 MS. DOMINGUEZ, CAN YOU TALK 1377 00:51:28,000 --> 00:51:29,501 ABOUT THE ONGOING WORK WITH 1378 00:51:29,501 --> 00:51:30,569 THE DEVICE AND WHAT PARENTS 1379 00:51:30,569 --> 00:51:31,670 HAVE TO DO EVERY DAY? 1380 00:51:31,670 --> 00:51:32,938 >> YOU WANT TO GO FIRST AND 1381 00:51:32,938 --> 00:51:35,307 I WILL GO SECOND? 1382 00:51:35,307 --> 00:51:36,709 >> WELL, FOR ME, AS A 1383 00:51:36,709 --> 00:51:38,377 PARENT, THERE IS NO 1384 00:51:38,377 --> 00:51:39,345 MAINTENANCE REALLY. 1385 00:51:39,345 --> 00:51:40,546 EVERYTHING IS SELF 1386 00:51:40,546 --> 00:51:41,146 EXPLANATORY. 1387 00:51:41,146 --> 00:51:42,748 LIKE YOU LITERALLY PRESS A 1388 00:51:42,748 --> 00:51:43,248 BUTTON. 1389 00:51:43,248 --> 00:51:45,050 I EVEN GIVE THE MACHINE TO 1390 00:51:45,050 --> 00:51:48,187 MY SON AND HE PUTS IT ON HIS 1391 00:51:48,187 --> 00:51:52,257 CHEST, IT MAKES A SOUND, IT 1392 00:51:52,257 --> 00:51:54,193 TURNS ON AND THEY PROGRAM IT 1393 00:51:54,193 --> 00:51:57,196 SO THAT IT IS SHUTTING OFF 1394 00:51:57,196 --> 00:51:59,598 AFTER A CERTAIN AMOUNT OF 1395 00:51:59,598 --> 00:52:01,567 HOURS AND IF HE WAKES UP 1396 00:52:01,567 --> 00:52:03,836 BEFORE THAT TIME, THERE'S A 1397 00:52:03,836 --> 00:52:06,105 BUTTON I CAN PRESS SO I CAN 1398 00:52:06,105 --> 00:52:07,940 SHUT IT OFF MYSELF. 1399 00:52:07,940 --> 00:52:09,942 IT IS A PRETTY SIMPLE 1400 00:52:09,942 --> 00:52:11,810 PROCESS. 1401 00:52:11,810 --> 00:52:12,644 I THINK THAT THERE'S -- 1402 00:52:12,644 --> 00:52:14,046 BECAUSE THIS WAS A QUESTION 1403 00:52:14,046 --> 00:52:17,216 I HAD AND MAYBE THIS WILL 1404 00:52:17,216 --> 00:52:17,950 BRING CLARITY, TOO, IS THAT 1405 00:52:17,950 --> 00:52:21,720 IT HAS TO BE REPLACED, 1406 00:52:21,720 --> 00:52:23,455 RIGHT, AND LIKE HOW MANY 1407 00:52:23,455 --> 00:52:25,290 YEARS AFTER HE HAS IT DOES 1408 00:52:25,290 --> 00:52:28,594 IT HAVE TO BE REPLACED. 1409 00:52:28,594 --> 00:52:30,796 >> RIGHT, SO IT DOES HAVE A 1410 00:52:30,796 --> 00:52:34,066 REMOTE CONTROL AND IT IS 1411 00:52:34,066 --> 00:52:38,604 TRUE THAT, YOU KNOW, AT 1412 00:52:38,604 --> 00:52:41,573 FIRST BEFORE WE USED REMOTE 1413 00:52:41,573 --> 00:52:42,941 CONTROL DEVICES, IT WAS AN 1414 00:52:42,941 --> 00:52:45,144 ON AND OFF BUTTON. 1415 00:52:45,144 --> 00:52:50,015 AND THIS IS A SIMPLE DEVICE, 1416 00:52:50,015 --> 00:52:52,451 WITH UP AND DOWN AND NOT ALL 1417 00:52:52,451 --> 00:52:55,454 THE THINGS YOU HAVE ON A 1418 00:52:55,454 --> 00:52:56,555 NORMAL TV REMOTE. 1419 00:52:56,555 --> 00:52:58,757 IT DOES HAVE BATTERIES AND 1420 00:52:58,757 --> 00:53:01,894 FLASHES A LIGHT WHEN IT 1421 00:53:01,894 --> 00:53:02,494 NEEDS REPLACEMENT. 1422 00:53:02,494 --> 00:53:05,197 AND IN THE PACEMAKER, THERE 1423 00:53:05,197 --> 00:53:07,833 IS AN INTERNAL BATTERY WHICH 1424 00:53:07,833 --> 00:53:12,704 IS A SAME DAY PROCEDURE SO 1425 00:53:12,704 --> 00:53:13,605 THE PROCESSOR CAN BE 1426 00:53:13,605 --> 00:53:14,006 CHANGED. 1427 00:53:14,006 --> 00:53:16,375 I THINK SO FAR I HAVE 1428 00:53:16,375 --> 00:53:19,344 CHANGED FIVE IN KITS 1429 00:53:19,344 --> 00:53:20,679 INPLANTED SINCE 201 OR THAT 1430 00:53:20,679 --> 00:53:21,246 GROUP. 1431 00:53:21,246 --> 00:53:24,283 SO WE THINK THE BATTERY WILL 1432 00:53:24,283 --> 00:53:25,451 LAST SOMEWHERE BETWEEN 10 OR 1433 00:53:25,451 --> 00:53:29,655 15 YEARS, WE HOPE THERE WILL 1434 00:53:29,655 --> 00:53:30,756 BE RECHARGEABLE BATTERIES BY 1435 00:53:30,756 --> 00:53:31,490 THEN. 1436 00:53:31,490 --> 00:53:32,858 SEEMS LIKE WITH ALL 1437 00:53:32,858 --> 00:53:33,759 PACEMAKERS, THEY CHANGE WITH 1438 00:53:33,759 --> 00:53:35,627 TIME BUT THAT PROCEDURE IS 1439 00:53:35,627 --> 00:53:38,197 NOT AT ALL LIKE THE FIRST 1440 00:53:38,197 --> 00:53:39,264 PROCEDURE WHICH IS ABOUT AN 1441 00:53:39,264 --> 00:53:40,632 HOUR AND A HALF PROCEDURE. 1442 00:53:40,632 --> 00:53:45,370 IT IS A PROCEDURE BUT IT IS 1443 00:53:45,370 --> 00:53:47,573 SHORTER AND ABOUT EVERY 10 1444 00:53:47,573 --> 00:53:47,973 TO 15 YEARS. 1445 00:53:47,973 --> 00:53:53,512 >> SO I THINK THAT CUES UP 1446 00:53:53,512 --> 00:53:54,780 THE NEXT QUESTION, YOU 1447 00:53:54,780 --> 00:53:57,583 TALKED ABOUT THE 1448 00:53:57,583 --> 00:53:58,350 LONGITUDINAL EXPERIENCE 1449 00:53:58,350 --> 00:54:00,052 PATIENTS HAVE HAD THAT HAVE 1450 00:54:00,052 --> 00:54:00,752 BEEN IMPLANTED. 1451 00:54:00,752 --> 00:54:02,988 DO YOU HAVE EXPERIENCE WITH 1452 00:54:02,988 --> 00:54:04,089 WAITERS WHO ARE TWO YEARS OR 1453 00:54:04,089 --> 00:54:05,524 MORE AND I THINK YOU HAVE 1454 00:54:05,524 --> 00:54:06,592 TALKED ABOUT THAT BUT CAN 1455 00:54:06,592 --> 00:54:08,026 YOU TALK ABOUT THE LONG-TERM 1456 00:54:08,026 --> 00:54:09,828 USE OF THE DEVICE, IF THERE 1457 00:54:09,828 --> 00:54:11,697 HAVE BEEN ANY LESSONS 1458 00:54:11,697 --> 00:54:13,031 LEARNED, ANY PROBLEMS THAT 1459 00:54:13,031 --> 00:54:15,501 CROPPED UP, YOU KNOW, THE 1460 00:54:15,501 --> 00:54:16,768 GENERAL MAINTENANCE AND 1461 00:54:16,768 --> 00:54:19,071 SUSTAINABILITY OF IT, 1462 00:54:19,071 --> 00:54:20,839 ANYTHING LIKE THAT? 1463 00:54:20,839 --> 00:54:22,541 >> YEAH, WELL, I THINK THAT 1464 00:54:22,541 --> 00:54:25,544 WE HAVE PUBLISHED ON THIS 1465 00:54:25,544 --> 00:54:31,383 AND WE HAVE LOOKED AT AT 1466 00:54:31,383 --> 00:54:32,484 LEAST THE 5-YEAR EXPERIENCE 1467 00:54:32,484 --> 00:54:35,287 FOR A BUNCH OF KIDS WHO WERE 1468 00:54:35,287 --> 00:54:37,089 10-13 AND THIS WAS THE PART 1469 00:54:37,089 --> 00:54:42,294 OF THE STUDY WHERE WE WERE 1470 00:54:42,294 --> 00:54:43,228 STILL IMPLANTING REPUBLICANS 1471 00:54:43,228 --> 00:54:48,901 SORE -- IMPLANTING THE 1472 00:54:48,901 --> 00:54:51,370 SENSOR UNDER THE NIPPLE AND 1473 00:54:51,370 --> 00:54:53,071 WORRIED ABOUT THROUGH TIME, 1474 00:54:53,071 --> 00:54:56,141 HOW WOULD THAT DO AS KIDS 1475 00:54:56,141 --> 00:54:57,309 GREW AND EVEN THEN THERE WAS 1476 00:54:57,309 --> 00:54:58,877 THINKING THAT THE WIRE WOULD 1477 00:54:58,877 --> 00:55:01,813 GROW WITH THE KIDS SO IN 1478 00:55:01,813 --> 00:55:05,150 THAT SMALL EXPERIENCE OF 1479 00:55:05,150 --> 00:55:08,820 KIDS 10-13, I THINK IT WAS 4 1480 00:55:08,820 --> 00:55:10,055 1/2 YEARS OF FOLLOW UP AND 1481 00:55:10,055 --> 00:55:11,523 THEY WERE STABLE AFTERWARDS 1482 00:55:11,523 --> 00:55:12,858 WITH NO CHANGE IN THE 1483 00:55:12,858 --> 00:55:13,191 DEVICE. 1484 00:55:13,191 --> 00:55:16,895 WE HAVE NOW LOOKED AT THE 1485 00:55:16,895 --> 00:55:20,566 LAST 42 KIDS, IT IS 1486 00:55:20,566 --> 00:55:25,337 UNPUBLISHED BUT ABOUT TO BE 1487 00:55:25,337 --> 00:55:26,538 PUBLISHED, THEIR 5-YEAR 1488 00:55:26,538 --> 00:55:29,741 EXPERIENCE AND IF ANYTHING, 1489 00:55:29,741 --> 00:55:33,912 THEY HAVE GOT GOTTEN BETTER. 1490 00:55:33,912 --> 00:55:34,913 THERE ARE KIDS ONCE THEY ARE 1491 00:55:34,913 --> 00:55:38,850 OUT OF THE STUDY HAVE GAINED 1492 00:55:38,850 --> 00:55:42,421 A LOT OF WEIGHT AND WITH ANY 1493 00:55:42,421 --> 00:55:44,523 SLEEP APNEA WEIGHT CAN BE AN 1494 00:55:44,523 --> 00:55:45,824 IMPORTANT FACTOR. 1495 00:55:45,824 --> 00:55:48,927 SO THE SETTING MAY BE FOR A 1496 00:55:48,927 --> 00:55:50,762 CHILD'S CERTAIN WEIGHT AND 1497 00:55:50,762 --> 00:55:53,198 PHENOTYPE AND IT IS NOT IN 1498 00:55:53,198 --> 00:55:55,300 THOSE KIDS THAT IT DOESN'T 1499 00:55:55,300 --> 00:55:56,935 WORK BUT THAT THERE ARE SOME 1500 00:55:56,935 --> 00:55:58,470 OF THOSE KIDS WE HAVE TO GO 1501 00:55:58,470 --> 00:56:08,981 BACK AND REPEAT THE SLEEP 1502 00:56:09,414 --> 00:56:13,785 ENDOSCOPY AND AS KIDS BECOME 1503 00:56:13,785 --> 00:56:16,755 ADULTS, REPORT THEIR NEW 1504 00:56:16,755 --> 00:56:18,390 BODY HABITS AND SOME OF US 1505 00:56:18,390 --> 00:56:19,758 DO GET A LITTLE OVERWEIGHT 1506 00:56:19,758 --> 00:56:22,394 SO WE NEED TO WORK ON THAT. 1507 00:56:22,394 --> 00:56:25,364 THE OTHER THING WITH RESPECT 1508 00:56:25,364 --> 00:56:27,165 TO NICHOLAS, WITH THE SORT 1509 00:56:27,165 --> 00:56:29,301 OF TRANSITION, AND THIS IS 1510 00:56:29,301 --> 00:56:30,435 TRUE OF EVERYBODY, WHOEVER 1511 00:56:30,435 --> 00:56:32,571 YOUR CHILD IS, AS YOU 1512 00:56:32,571 --> 00:56:34,940 TRANSITION THEM TO YOU 1513 00:56:34,940 --> 00:56:36,141 HAVING CONTROL AND THEM 1514 00:56:36,141 --> 00:56:38,076 HAVING CONTROL AND GIVE THEM 1515 00:56:38,076 --> 00:56:39,544 THE REMOTE, SOME KIDS LIKE 1516 00:56:39,544 --> 00:56:42,080 THE FEELING OF THE REMOTE. 1517 00:56:42,080 --> 00:56:44,016 I HAD TWO PARENTS WHO SAID 1518 00:56:44,016 --> 00:56:46,818 THE DEVICE DIDN'T WORK AND 1519 00:56:46,818 --> 00:56:49,888 THE KIDS TURNED THE REMOTE 1520 00:56:49,888 --> 00:56:52,557 ON AND OFF ALL NIGHT LONG SO 1521 00:56:52,557 --> 00:56:56,261 WE HAD TO BE A LITTLE DICK 1522 00:56:56,261 --> 00:56:57,796 TRACY TO FIGURE THAT OUT SO 1523 00:56:57,796 --> 00:56:59,431 YOU LIVE AND LEARN. 1524 00:56:59,431 --> 00:57:02,601 >> AND TO CLARIFY WHAT YOU 1525 00:57:02,601 --> 00:57:04,603 ARE SAYING, THE PROBLEMS 1526 00:57:04,603 --> 00:57:06,038 CONNECTED TO INDIVIDUALS IS 1527 00:57:06,038 --> 00:57:07,372 NOT THE DEVICE THEMSELVES 1528 00:57:07,372 --> 00:57:08,874 BUT WAYS TO MANAGE THE 1529 00:57:08,874 --> 00:57:11,343 DEVICE AS YOU MOVE DOWN THE 1530 00:57:11,343 --> 00:57:11,710 ROAD? 1531 00:57:11,710 --> 00:57:12,811 >> YES, THE DEVICE HAS 1532 00:57:12,811 --> 00:57:14,413 NOTHING TO DO WITH GAINING 1533 00:57:14,413 --> 00:57:17,616 WEIGHT, IT IS JUST AS PEOPLE 1534 00:57:17,616 --> 00:57:20,352 DO GAIN WEIGHT, IF THE 1535 00:57:20,352 --> 00:57:21,186 CHILDREN GAIN WEIGHT, WE 1536 00:57:21,186 --> 00:57:25,323 HAVE TO MANAGE THAT OR 1537 00:57:25,323 --> 00:57:27,059 FACTOR THAT INTO THE ACTUAL 1538 00:57:27,059 --> 00:57:28,660 DEVICE AND SETTINGS. 1539 00:57:28,660 --> 00:57:29,761 >> IS THE EXPECTATION WHEN 1540 00:57:29,761 --> 00:57:31,530 PEOPLE GET THIS DEVICE 1541 00:57:31,530 --> 00:57:32,297 IMPLANTED THAT THEY WILL 1542 00:57:32,297 --> 00:57:35,367 HAVE IT FOR THE REST OF 1543 00:57:35,367 --> 00:57:35,767 THEIR LIVES? 1544 00:57:35,767 --> 00:57:39,004 >> YEAH, SUPER IMPORTANT 1545 00:57:39,004 --> 00:57:39,604 QUESTION. 1546 00:57:39,604 --> 00:57:41,773 AND THE STAR TRIAL WAS 1547 00:57:41,773 --> 00:57:43,642 IMPORTANT IN THAT. 1548 00:57:43,642 --> 00:57:49,181 BUT THIS DEVICE IS NOT -- IT 1549 00:57:49,181 --> 00:57:50,882 IS CURRENT WHEN THE DEVICE 1550 00:57:50,882 --> 00:57:52,684 IS ON. 1551 00:57:52,684 --> 00:57:54,186 WE HAVE LOOKED AT THAT AND 1552 00:57:54,186 --> 00:57:56,788 IF YOU DIDN'T TURN THE 1553 00:57:56,788 --> 00:57:58,724 DEVICE OFF -- EXCUSE ME, IF 1554 00:57:58,724 --> 00:58:01,560 YOU DIDN'T TURN THE DEVICE 1555 00:58:01,560 --> 00:58:03,195 ON, YOUR CHILD WOULD STILL 1556 00:58:03,195 --> 00:58:04,763 HAVE SLEEP APNEA. 1557 00:58:04,763 --> 00:58:07,165 THE REASON WE FELT 1558 00:58:07,165 --> 00:58:07,966 COMFORTABLE WITH CHILDREN 1559 00:58:07,966 --> 00:58:09,835 WITH DOWN SYNDROME IN THIS 1560 00:58:09,835 --> 00:58:12,037 IS WHEN YOU LOOK 1561 00:58:12,037 --> 00:58:13,038 LONGITUDINALLY AT CHILDREN 1562 00:58:13,038 --> 00:58:14,940 AND ADULTS WITH DOWN 1563 00:58:14,940 --> 00:58:16,108 SYNDROME, THE PHENOTYPE, THE 1564 00:58:16,108 --> 00:58:18,710 ACTUAL TONGUE BASE AS THE 1565 00:58:18,710 --> 00:58:20,278 PRIMARY SOURCE OF 1566 00:58:20,278 --> 00:58:21,680 OBSTRUCTION, DOESN'T SEEM TO 1567 00:58:21,680 --> 00:58:23,381 CHANGE OVER TIME. 1568 00:58:23,381 --> 00:58:24,449 WHEREAS THE CHILD WITHOUT 1569 00:58:24,449 --> 00:58:25,784 DOWN SYNDROME, THEY MAY HAVE 1570 00:58:25,784 --> 00:58:32,390 THEIR TONSILS AND ADENOIDS 1571 00:58:32,390 --> 00:58:36,695 OR NOT AND AS THEY BECOME 1572 00:58:36,695 --> 00:58:38,530 TEENAGERS, THINGS CHANGE AND 1573 00:58:38,530 --> 00:58:40,665 THINGS BECOME LESS OR MORE 1574 00:58:40,665 --> 00:58:41,533 DOMINANT. 1575 00:58:41,533 --> 00:58:44,703 SO THIS IS WHY WE FELT IT 1576 00:58:44,703 --> 00:58:46,037 WAS APPROPRIATE AND 1577 00:58:46,037 --> 00:58:47,639 REASONABLE DECISION FOR 1578 00:58:47,639 --> 00:58:50,809 IMPLANTATION IN THIS DOWN 1579 00:58:50,809 --> 00:58:52,077 SYNDROME POPULATION. 1580 00:58:52,077 --> 00:58:54,446 >> CAN YOU COMMENT ON 1581 00:58:54,446 --> 00:58:55,881 OVERCOMING LANGUAGE BARRIERS 1582 00:58:55,881 --> 00:58:57,616 FOR FAMILIES THAT DON'T 1583 00:58:57,616 --> 00:58:58,784 SPEAK ENGLISH IN THEIR 1584 00:58:58,784 --> 00:58:59,851 HOUSEHOLD AND HOW YOU ARE 1585 00:58:59,851 --> 00:59:01,153 ABLE TO GET INFORMATION TO 1586 00:59:01,153 --> 00:59:02,654 THEM NOT ONLY ABOUT THE 1587 00:59:02,654 --> 00:59:05,957 STUDY OR HOW THEY CAN HAVE 1588 00:59:05,957 --> 00:59:08,527 THEIR QUESTIONS ANSWERED 1589 00:59:08,527 --> 00:59:09,261 BOTH PRE-SURGERY, 1590 00:59:09,261 --> 00:59:10,595 POST-SURGERY, ALL THE FOLLOW 1591 00:59:10,595 --> 00:59:14,232 UP INVOLVED? 1592 00:59:14,232 --> 00:59:15,367 >> YEAH, THAT IS A GOOD 1593 00:59:15,367 --> 00:59:17,235 QUESTION AND WE REALLY WANT 1594 00:59:17,235 --> 00:59:22,707 THIS, ON THE ONE HAND, 1595 00:59:22,707 --> 00:59:27,145 DEVICE AND THIS THERAPY TO 1596 00:59:27,145 --> 00:59:29,447 BE SOMETHING THAT EVERYBODY 1597 00:59:29,447 --> 00:59:32,350 CAN HAVE AND REALLY TO BE 1598 00:59:32,350 --> 00:59:33,985 THIS -- REGARDLESS OF YOUR 1599 00:59:33,985 --> 00:59:35,353 LANGUAGE AND WHO YOU ARE, IT 1600 00:59:35,353 --> 00:59:37,622 IS JUST IF YOUR CHILD HAS 1601 00:59:37,622 --> 00:59:38,223 DOWN SYNDROME. 1602 00:59:38,223 --> 00:59:39,424 ON THE OTHER HAND, WE WANT 1603 00:59:39,424 --> 00:59:41,493 TO BE SURE THERE ARE 1604 00:59:41,493 --> 00:59:42,761 QUESTIONS THAT COME UP AND 1605 00:59:42,761 --> 00:59:44,930 WE WANT TO BE SURE THAT WE 1606 00:59:44,930 --> 00:59:48,600 HAVE -- FOR EXAMPLE, BEFORE 1607 00:59:48,600 --> 00:59:53,605 WE OFFERED THIS TO, AT LEAST 1608 00:59:53,605 --> 00:59:55,707 ON THE STUDY, FOR CHILDREN 1609 00:59:55,707 --> 01:00:00,879 WHO CAN SPEAK -- ARE 1610 01:00:00,879 --> 01:00:03,982 BILINGUAL AND UNDERSTAND 1611 01:00:03,982 --> 01:00:05,417 ENGLISH AND REPRODUCE IT AND 1612 01:00:05,417 --> 01:00:06,418 THERE ARE STUDIES OPEN FOR 1613 01:00:06,418 --> 01:00:06,885 THEM. 1614 01:00:06,885 --> 01:00:13,725 THERE IS A HOTLINE 24/7 IN 1615 01:00:13,725 --> 01:00:14,926 SPANISH AND ENGLISH RIGHT 1616 01:00:14,926 --> 01:00:18,630 NOW AND WITH THAT WE FEEL 1617 01:00:18,630 --> 01:00:19,531 COMFORTABLE BECAUSE PARENTS 1618 01:00:19,531 --> 01:00:20,632 WILL HAVE QUESTIONS AND WE 1619 01:00:20,632 --> 01:00:22,000 NEED TO WORK ON OTHER 1620 01:00:22,000 --> 01:00:22,567 LANGUAGES AS WELL. 1621 01:00:22,567 --> 01:00:25,036 SO IT IS A SORE POINT WE 1622 01:00:25,036 --> 01:00:27,072 HAVE TO KEEP WORKING ON BUT 1623 01:00:27,072 --> 01:00:28,874 AT LEAST IN SPANISH AND 1624 01:00:28,874 --> 01:00:33,778 ENGLISH, IT IS AVAILABLE AT 1625 01:00:33,778 --> 01:00:34,913 THIS POINT. 1626 01:00:34,913 --> 01:00:37,616 >> I HAVE A QUESTION OF 1627 01:00:37,616 --> 01:00:38,850 MS. DOMINGUEZ, KIND OF 1628 01:00:38,850 --> 01:00:40,185 JUMPING A LITTLE BIT IN 1629 01:00:40,185 --> 01:00:42,220 TERMS OF ARE THERE SOME 1630 01:00:42,220 --> 01:00:43,321 THINGS YOU WISH YOU WOULD 1631 01:00:43,321 --> 01:00:46,291 HAVE KNOWN ABOUT THE STUDY 1632 01:00:46,291 --> 01:00:50,862 PRIOR TO SIGNING NICHOLAS UP 1633 01:00:50,862 --> 01:00:51,830 AND PARTICIPATING? 1634 01:00:51,830 --> 01:00:53,064 >> HONESTLY I WISH I WOULD 1635 01:00:53,064 --> 01:00:55,267 HAVE KNOWN ABOUT IT SOONER. 1636 01:00:55,267 --> 01:00:57,936 I FEEL LIKE MY -- YOU KNOW, 1637 01:00:57,936 --> 01:01:01,973 MY SON HAD HIS ADENOIDS OUT, 1638 01:01:01,973 --> 01:01:03,608 TONSILS OUT, HE HAD SOME 1639 01:01:03,608 --> 01:01:06,478 OTHER SKIN REMOVED FROM HIS 1640 01:01:06,478 --> 01:01:08,546 NOSE, SOMETHING ELSE REMOVED 1641 01:01:08,546 --> 01:01:11,316 FROM HIS THROAT AND THEN HIS 1642 01:01:11,316 --> 01:01:13,285 TONGUE REDUCED, IT WAS LIKE 1643 01:01:13,285 --> 01:01:14,853 A LOT AND I DON'T KNOW IF, 1644 01:01:14,853 --> 01:01:16,087 YOU KNOW, HE WOULD HAVE 1645 01:01:16,087 --> 01:01:17,622 STILL HAD TO GO THROUGH ALL 1646 01:01:17,622 --> 01:01:20,125 OF THAT BUT I FEEL LIKE HE 1647 01:01:20,125 --> 01:01:21,760 WENT THROUGH A LOT OF 1648 01:01:21,760 --> 01:01:24,262 SURGERY THAT MAY HAVE NOT 1649 01:01:24,262 --> 01:01:26,665 BEEN AS NECESSARY HAD I 1650 01:01:26,665 --> 01:01:34,005 KNOWN ABOUT THIS DEVICE 1651 01:01:34,005 --> 01:01:34,506 PRIOR. 1652 01:01:34,506 --> 01:01:36,474 >> THANK YOU, THEN, FOR 1653 01:01:36,474 --> 01:01:37,542 SAYING THAT BECAUSE I THINK 1654 01:01:37,542 --> 01:01:39,077 THAT IS ALSO PART OF THE 1655 01:01:39,077 --> 01:01:40,812 REASON FOR THIS WEBINAR, 1656 01:01:40,812 --> 01:01:43,481 TOO, TO MAKE SURE THAT THE 1657 01:01:43,481 --> 01:01:46,918 HARD WORK THAT Dr. 1658 01:01:46,918 --> 01:01:49,321 HARTNICK AND OTHER DOCTORS 1659 01:01:49,321 --> 01:01:51,790 AND THE RESEARCH TEAM ARE 1660 01:01:51,790 --> 01:01:52,724 DOING, TO SHARE THE 1661 01:01:52,724 --> 01:01:54,025 INFORMATION SO MORE FAMILIES 1662 01:01:54,025 --> 01:01:56,728 ARE AWARE OF THE STUDIES AND 1663 01:01:56,728 --> 01:01:58,463 THE TRIALS. 1664 01:01:58,463 --> 01:02:05,837 Dr. HARTNICK MAY HAVE A 1665 01:02:05,837 --> 01:02:06,738 WHOLE SLEW OF INFORMATION 1666 01:02:06,738 --> 01:02:09,507 COMING OUT IN THE NEXT FEW 1667 01:02:09,507 --> 01:02:13,345 DAYS BUT YEAH, I THINK THAT 1668 01:02:13,345 --> 01:02:13,845 IS IMPORTANT. 1669 01:02:13,845 --> 01:02:18,883 >> AND GETTING A SHOUT OUT 1670 01:02:18,883 --> 01:02:20,085 Dr. HARTNICK, SOMEONE WAS 1671 01:02:20,085 --> 01:02:23,688 VERY HAPPY WITH THE STUDY, 1672 01:02:23,688 --> 01:02:26,024 HAD THEIR SON WHO WAS 4 WHEN 1673 01:02:26,024 --> 01:02:29,594 HE ENTERED THE STUDY AND 1674 01:02:29,594 --> 01:02:31,463 IMPLANTED AT 5 AND THEY ARE 1675 01:02:31,463 --> 01:02:33,198 VERY HAPPY WITH WHAT HAS 1676 01:02:33,198 --> 01:02:35,500 HAPPENED SO FAR -- 1677 01:02:35,500 --> 01:02:36,101 [INAUDIBLE] 1678 01:02:36,101 --> 01:02:37,369 >> Dr. HARTNICK, HAVE YOU 1679 01:02:37,369 --> 01:02:39,637 ALL THOUGHT ABOUT THE 1680 01:02:39,637 --> 01:02:40,705 UNDERLYING MECHANISM, 1681 01:02:40,705 --> 01:02:41,306 ASSUMING THE POSITIVE 1682 01:02:41,306 --> 01:02:43,208 RESULTS YOU HAVE SEEN AROUND 1683 01:02:43,208 --> 01:02:44,676 LANGUAGE, COGNITION AND 1684 01:02:44,676 --> 01:02:45,610 EXPRESSIVE LANGUAGE, HAVE 1685 01:02:45,610 --> 01:02:49,114 YOU ALL THOUGHT ABOUT THE 1686 01:02:49,114 --> 01:02:49,547 MECHANISM? 1687 01:02:49,547 --> 01:02:53,118 I THINK ONE EASY HYPOTHESIS 1688 01:02:53,118 --> 01:02:58,223 TO SORT OF WRAP OUR BRAINS 1689 01:02:58,223 --> 01:02:59,691 AROUND IS IF YOU ARE 1690 01:02:59,691 --> 01:03:01,926 SLEEPING BETTER, YOU ARE 1691 01:03:01,926 --> 01:03:08,500 ABLE TO EXPRESS YOURSELF 1692 01:03:08,500 --> 01:03:12,037 BETTER BUT THE QUESTIONS 1693 01:03:12,037 --> 01:03:14,406 AROUND THE TONGUE, IS THAT A 1694 01:03:14,406 --> 01:03:15,006 CONSIDERATION? 1695 01:03:15,006 --> 01:03:16,908 >> YES, IT IS AN OPEN 1696 01:03:16,908 --> 01:03:19,544 HYPOTHESIS THAT AS WE SLEEP, 1697 01:03:19,544 --> 01:03:21,513 WE INCORPORATE SHORT AND 1698 01:03:21,513 --> 01:03:23,648 LONG-TERM MEMORY AND ARE 1699 01:03:23,648 --> 01:03:26,184 SORT OF RELIVING OUR DAYS TO 1700 01:03:26,184 --> 01:03:27,719 NOTE LESSONS LEARNED AND 1701 01:03:27,719 --> 01:03:29,220 HOPEFULLY GOOD AND BAD 1702 01:03:29,220 --> 01:03:32,323 LESSONS BUT WE CAN 1703 01:03:32,323 --> 01:03:33,525 MEMORIALTIZE AND INCORPORATE 1704 01:03:33,525 --> 01:03:35,794 THEM IN SHORT AND LONG-TERM 1705 01:03:35,794 --> 01:03:36,561 MEMORY, THAT WOULD MAKE 1706 01:03:36,561 --> 01:03:38,730 SENSE WITH WHAT WE'RE SEEING 1707 01:03:38,730 --> 01:03:39,998 WITH THE NEUROCOGNITIVE 1708 01:03:39,998 --> 01:03:40,765 CHANGES. 1709 01:03:40,765 --> 01:03:42,367 WITH REGARD TO EXPRESSIVE 1710 01:03:42,367 --> 01:03:44,069 LANGUAGE, IT IS SOMETHING WE 1711 01:03:44,069 --> 01:03:46,604 ARE REALLY INTERESTED IN 1712 01:03:46,604 --> 01:03:47,572 BECAUSE, YOU KNOW, WHETHER 1713 01:03:47,572 --> 01:03:51,409 THAT IS BECAUSE WE NEED 1714 01:03:51,409 --> 01:03:52,343 RECEPTIVE AND EXPRESSIVE 1715 01:03:52,343 --> 01:03:54,512 LANGUAGE ARE TIED AND 1716 01:03:54,512 --> 01:03:55,413 THEREFORE OUR NEUROCOGNITIVE 1717 01:03:55,413 --> 01:03:57,415 LANGUAGES WILL BE REFLECTED 1718 01:03:57,415 --> 01:04:01,853 OR BASICALLY ARE WE WORKING 1719 01:04:01,853 --> 01:04:06,124 OUR TONGUES MORE AND GETTING 1720 01:04:06,124 --> 01:04:07,258 PHYSICAL THERAPY FOR OUR 1721 01:04:07,258 --> 01:04:08,093 TONGUES AND I THINK THAT IS 1722 01:04:08,093 --> 01:04:09,561 SOMETHING WE NEED TO LOOK AT 1723 01:04:09,561 --> 01:04:11,896 A LITTLE BILL. 1724 01:04:11,896 --> 01:04:13,832 IN OTHER STUDIES, THERE HAVE 1725 01:04:13,832 --> 01:04:14,799 BEEN POPULATIONS OF CHILDREN 1726 01:04:14,799 --> 01:04:17,669 WHOA HAVE A WEALTH OF 1727 01:04:17,669 --> 01:04:18,336 NEUROMUSCULAR DISORDERS 1728 01:04:18,336 --> 01:04:21,005 WHERE PARENTS HAVE COME AND 1729 01:04:21,005 --> 01:04:24,242 ASK ME IF THEIR ISSUE IS 1730 01:04:24,242 --> 01:04:24,909 PRIMARILY FOR TONGUE BASED 1731 01:04:24,909 --> 01:04:26,444 OBSTRUCTION AS WELL AND 1732 01:04:26,444 --> 01:04:28,546 WOULD THEY BE CANDIDATES FOR 1733 01:04:28,546 --> 01:04:29,114 THIS. 1734 01:04:29,114 --> 01:04:31,082 AND WE HAVE WORRIED ABOUT 1735 01:04:31,082 --> 01:04:33,885 KIDS WHO ARE OBSTRUCTING ALL 1736 01:04:33,885 --> 01:04:35,620 DAY AND ALL NIGHT, FOR 1737 01:04:35,620 --> 01:04:40,758 INSTANCE WITH THE KIDS WITH 1738 01:04:40,758 --> 01:04:41,459 NEUROMUSCULAR HIGHOPATHY, IF 1739 01:04:41,459 --> 01:04:42,760 THEY WERE TO USE THE DEVICE 1740 01:04:42,760 --> 01:04:44,896 AND WOULD THERE BE 1741 01:04:44,896 --> 01:04:46,898 EXHAUSTION OF THE TONGUE AND 1742 01:04:46,898 --> 01:04:48,633 THEN A POINT OF SWITCHING 1743 01:04:48,633 --> 01:04:50,435 AND THAT IS A SITUATION 1744 01:04:50,435 --> 01:04:53,538 WHERE CLINICAL WORK AND 1745 01:04:53,538 --> 01:04:58,409 SCIENCE HAVE TO BENEFIT AND 1746 01:04:58,409 --> 01:04:59,477 BE INTUITIVE BUT BE SAFE SO 1747 01:04:59,477 --> 01:05:02,714 IF THERE IS A PHASE CALL 1748 01:05:02,714 --> 01:05:04,649 THERAPY INTERVENTION, FOR IT 1749 01:05:04,649 --> 01:05:06,384 TO ONLY BE ON DURING CERTAIN 1750 01:05:06,384 --> 01:05:14,325 PERIODS OF DAY MAY BE A 1751 01:05:14,325 --> 01:05:14,826 STRENGTH. 1752 01:05:14,826 --> 01:05:16,861 >> SO WE HAVE A COMMENT THAT 1753 01:05:16,861 --> 01:05:18,163 ALLUDES TO A RECOMMENDATION 1754 01:05:18,163 --> 01:05:20,532 AND OF COURSE YOU CAN'T 1755 01:05:20,532 --> 01:05:21,966 OFFER DIRECT MEDICAL ADVICE 1756 01:05:21,966 --> 01:05:23,768 TO ANYONE HERE BUT WE HAVE A 1757 01:05:23,768 --> 01:05:25,370 PARTICIPANT WHO HAS A 1758 01:05:25,370 --> 01:05:27,105 2-YEAR-OLD DAUGHTER WITH 1759 01:05:27,105 --> 01:05:35,813 APNEA, SHE UNDERWENT THE 1760 01:05:35,813 --> 01:05:37,849 SURGERY WITH LINGUOALAYSIA 1761 01:05:37,849 --> 01:05:39,851 BUT STILL PERSISTS, YOU HAVE 1762 01:05:39,851 --> 01:05:43,021 ANY RECOMMENDATIONS FOR THE 1763 01:05:43,021 --> 01:05:43,354 FAMILY? 1764 01:05:43,354 --> 01:05:44,088 >> JUST HAVE A GOOD 1765 01:05:44,088 --> 01:05:45,890 RELATIONSHIP WITH YOUR 1766 01:05:45,890 --> 01:05:47,992 HEALTHCARE PROVIDERS AND A 1767 01:05:47,992 --> 01:05:49,093 SOLID RELATIONSHIP WITH 1768 01:05:49,093 --> 01:05:49,561 THEM. 1769 01:05:49,561 --> 01:05:51,029 IF THEY HAVE EXPERIENCE WITH 1770 01:05:51,029 --> 01:05:53,898 THAT, THEY WILL AND IF THEY 1771 01:05:53,898 --> 01:05:55,033 CAN'T, MOST HEALTHCARE 1772 01:05:55,033 --> 01:05:57,068 PROVIDERS WILL PWOUBS THAT 1773 01:05:57,068 --> 01:06:03,641 OUT TO -- BOUNCE THAT OUT 1774 01:06:03,641 --> 01:06:04,909 TO OTHERS WHO HAVE MORE 1775 01:06:04,909 --> 01:06:06,844 EXPERIENCE SO MAKE SURE YOU 1776 01:06:06,844 --> 01:06:11,416 HAVE A GOOD SOLID HEALTHCARE 1777 01:06:11,416 --> 01:06:11,783 PROVIDER. 1778 01:06:11,783 --> 01:06:12,917 >> AND THIS SHOULD BE A 1779 01:06:12,917 --> 01:06:13,918 SHORT ONE, A QUESTION ABOUT 1780 01:06:13,918 --> 01:06:16,087 THE AGE OF THE OLDEST 1781 01:06:16,087 --> 01:06:17,222 PARTICIPANT IN THE CHILD 1782 01:06:17,222 --> 01:06:22,260 THAT YOU HAVE STUDIED. 1783 01:06:22,260 --> 01:06:24,629 >> WELL, 21, YOU CAN'T GO 1784 01:06:24,629 --> 01:06:27,031 -- I MEAN I HAVE IMPLANTED 1785 01:06:27,031 --> 01:06:28,466 OLDER BUT NOT FOR THE TRIAL 1786 01:06:28,466 --> 01:06:31,402 AND IT IS LIKE A RACE 1787 01:06:31,402 --> 01:06:34,739 AGAINST TIME IN YOUR 20s, 1788 01:06:34,739 --> 01:06:37,375 21, WE HAVE TO GET THE SLEEP 1789 01:06:37,375 --> 01:06:38,610 DECIDED AS AN ISSUE. 1790 01:06:38,610 --> 01:06:41,012 SO AGAIN IT GETS TO THE 1791 01:06:41,012 --> 01:06:41,980 POINT OF INCLUSION. 1792 01:06:41,980 --> 01:06:44,215 STUDIES ARE -- AND I AM 1793 01:06:44,215 --> 01:06:45,617 REALLY DEEPLY GRATEFUL TO 1794 01:06:45,617 --> 01:06:47,619 THE NIH FOR THIS OPPORTUNITY 1795 01:06:47,619 --> 01:06:50,088 HERE TO TALK TO PEOPLE BUT 1796 01:06:50,088 --> 01:06:51,623 TO ALSO WORK TOGETHER TO 1797 01:06:51,623 --> 01:06:53,324 MAKE SURE WE'RE DEVELOPING 1798 01:06:53,324 --> 01:06:54,659 GOOD, SAFE AND SOLID 1799 01:06:54,659 --> 01:06:57,562 RESEARCH BUT THERE ARE 1800 01:06:57,562 --> 01:06:58,563 QUESTIONS ABOUT INCLUSION 1801 01:06:58,563 --> 01:06:59,897 CRITERIA THAT ARE MEANT TO 1802 01:06:59,897 --> 01:07:01,799 BE SAFE AND GROUNDED IN 1803 01:07:01,799 --> 01:07:03,234 SCIENCE BUT LIKE EVERYTHING 1804 01:07:03,234 --> 01:07:05,303 ELSE, YOU KNOW, THEY HAVE 1805 01:07:05,303 --> 01:07:06,404 THEIR LIMITATIONS, RIGHT IN 1806 01:07:06,404 --> 01:07:08,072 TERMS OF WE START THE 1807 01:07:08,072 --> 01:07:10,141 STUDIES AND SAY I WISH I 1808 01:07:10,141 --> 01:07:11,909 COULD HAVE CHANGED THAT BY 1809 01:07:11,909 --> 01:07:14,212 SIX MONTHS OR THREE MONTHS 1810 01:07:14,212 --> 01:07:18,182 BUT 21 IS AS OLD AS WE GO 1811 01:07:18,182 --> 01:07:19,450 FOR THE STUDY. 1812 01:07:19,450 --> 01:07:22,453 >> AND A REQUEST -- 1813 01:07:22,453 --> 01:07:23,888 >> GO AHEAD, ERIKA. 1814 01:07:23,888 --> 01:07:29,027 >> QUESTION FOR MS. TKPHUPBG 1815 01:07:29,027 --> 01:07:29,594 DOMINGUEZ. 1816 01:07:29,594 --> 01:07:30,528 BASED ON YOUR EXPERIENCE 1817 01:07:30,528 --> 01:07:32,230 WORKING WITH Dr. HARTNICK, 1818 01:07:32,230 --> 01:07:33,665 WOULD YOU BE WILLING TO 1819 01:07:33,665 --> 01:07:35,900 PARTICIPATE IN THE FUTURE IN 1820 01:07:35,900 --> 01:07:38,703 CLINICAL RESEARCH OR 1821 01:07:38,703 --> 01:07:40,204 CLINICAL STUDIES? 1822 01:07:40,204 --> 01:07:40,738 >> ABSOLUTELY, YES. 1823 01:07:40,738 --> 01:07:41,906 >> WHAT THEY WANT TO HEAR. 1824 01:07:41,906 --> 01:07:44,642 AND THE SIMPLE ANSWER TOO, 1825 01:07:44,642 --> 01:07:45,543 RIGHT, TO PINPOINT. 1826 01:07:45,543 --> 01:07:45,877 >> YES. 1827 01:07:45,877 --> 01:07:47,445 >> AND COULD YOU TELL US A 1828 01:07:47,445 --> 01:07:48,079 LITTLE BIT MORE? 1829 01:07:48,079 --> 01:07:49,681 I KNOW YOU MENTIONED A 1830 01:07:49,681 --> 01:07:51,382 LITTLE BIT THAT THE TEAM HAS 1831 01:07:51,382 --> 01:07:56,321 BEEN WILLING TO WORK WITH 1832 01:07:56,321 --> 01:07:58,089 YOU AND TAKE CARE OF YOUR 1833 01:07:58,089 --> 01:08:05,930 NEEDS AND I DON'T -- AND 1834 01:08:05,930 --> 01:08:08,066 YOUR SON'S NEEDS AND IT IS A 1835 01:08:08,066 --> 01:08:09,567 TEAM EFFORT, RIGHT, BUT IF 1836 01:08:09,567 --> 01:08:10,568 THERE ARE OTHER THINGS YOU 1837 01:08:10,568 --> 01:08:13,204 WOULD LIKE TO ADD TO? 1838 01:08:13,204 --> 01:08:15,306 >> FOR Dr. HARTNICK, IT 1839 01:08:15,306 --> 01:08:16,874 IS IMPORTANT FOR ME AS A 1840 01:08:16,874 --> 01:08:18,810 MOTHER THAT THE DOCTOR HAS 1841 01:08:18,810 --> 01:08:20,078 MY SON'S BEST INTEREST AND 1842 01:08:20,078 --> 01:08:21,279 THEY ARE EXCITED THAT 1843 01:08:21,279 --> 01:08:22,880 SOMETHING IS WORKING AND NOT 1844 01:08:22,880 --> 01:08:28,553 JUST LIKE OKAY, HAVE A GOOD 1845 01:08:28,553 --> 01:08:29,954 DAY, CHECK. 1846 01:08:29,954 --> 01:08:30,321 [LAUGHTER] 1847 01:08:30,321 --> 01:08:31,622 BUT SEEING HIS EXCITEMENT 1848 01:08:31,622 --> 01:08:32,924 WHEN THE THING WAS TURNING 1849 01:08:32,924 --> 01:08:34,292 ON AND HE IS LIKE OH IT IS 1850 01:08:34,292 --> 01:08:37,929 GOING TO BE WORKING, 1851 01:08:37,929 --> 01:08:40,098 KNOWING, FINDING OUT AFTER 1852 01:08:40,098 --> 01:08:44,068 THE SLEEP STUDY THAT HE 1853 01:08:44,068 --> 01:08:44,902 DOESN'T HAVE SLEEP APNEA 1854 01:08:44,902 --> 01:08:46,671 WHEN THE MACHINE IS ON AND 1855 01:08:46,671 --> 01:08:49,173 JUST HEARING HIS EXCITEMENT, 1856 01:08:49,173 --> 01:08:51,943 ALMOST AS EXCITED AS ME, I 1857 01:08:51,943 --> 01:08:53,678 AM LIKE OKAY, THANKS. 1858 01:08:53,678 --> 01:08:55,847 AND SO I JUST THINK THAT IS 1859 01:08:55,847 --> 01:08:58,549 AN IMPORTANT POINT, THAT THE 1860 01:08:58,549 --> 01:09:00,051 PATIENTS MATTER OVERALL, 1861 01:09:00,051 --> 01:09:00,551 RIGHT? 1862 01:09:00,551 --> 01:09:04,322 THAT THAT'S THE GOAL, RIGHT, 1863 01:09:04,322 --> 01:09:08,059 CREATING THINGS THAT HELP 1864 01:09:08,059 --> 01:09:09,026 PEOPLE'S HEALTH IS THE GOAL 1865 01:09:09,026 --> 01:09:11,062 AND IF YOU ARE HAVING THAT 1866 01:09:11,062 --> 01:09:15,199 VISION AND DOING SOMETHING 1867 01:09:15,199 --> 01:09:17,602 FOR IT, THAT THAT STAYS THE 1868 01:09:17,602 --> 01:09:20,538 FOCUS BECAUSE PEOPLE CAN DO 1869 01:09:20,538 --> 01:09:23,941 THINGS FOR DIFFERENT REASONS 1870 01:09:23,941 --> 01:09:25,243 AND LIKE WHEN SOMEONE IS 1871 01:09:25,243 --> 01:09:29,013 DOING IT MORE FOR THEIR EGO. 1872 01:09:29,013 --> 01:09:34,752 AND NOT THAT HE DOES THAT 1873 01:09:34,752 --> 01:09:38,656 BECAUSE HE PROBABLY GOES 1874 01:09:38,656 --> 01:09:40,691 HOME AND -- 1875 01:09:40,691 --> 01:09:41,159 [INDISCERNIBLE] 1876 01:09:41,159 --> 01:09:42,493 >> OUR KIDS WOULD STAND UP 1877 01:09:42,493 --> 01:09:45,029 STRAIGHT IF I DID THAT. 1878 01:09:45,029 --> 01:09:45,396 [LAUGHTER] 1879 01:09:45,396 --> 01:09:46,531 >> BUT I AM GRATEFUL JUST 1880 01:09:46,531 --> 01:09:55,940 TO HAVE THAT TYPE OF 1881 01:09:55,940 --> 01:09:57,775 EXPERIENCE WHERE I LOVE -- 1882 01:09:57,775 --> 01:09:59,911 THE LOVE IS FELT. 1883 01:09:59,911 --> 01:10:01,045 >> GO AHEAD, LAURIE. 1884 01:10:01,045 --> 01:10:03,581 >> I WAS GOING TO LEAVE THAT 1885 01:10:03,581 --> 01:10:04,515 FOR Dr. HARTNICK, MAYBE 1886 01:10:04,515 --> 01:10:07,285 YOU COULD TALK ABOUT HOW 1887 01:10:07,285 --> 01:10:09,754 REALLY THE RESEARCH IS 1888 01:10:09,754 --> 01:10:10,822 COLLABORATIVE, A PARTNERSHIP 1889 01:10:10,822 --> 01:10:11,656 WITH PARTICIPANTS AND HOW 1890 01:10:11,656 --> 01:10:12,990 IMPORTANT IT IS THAT THE 1891 01:10:12,990 --> 01:10:15,426 STUDY WORK WELL FOR 1892 01:10:15,426 --> 01:10:15,793 EVERYBODY. 1893 01:10:15,793 --> 01:10:17,895 >> YOU KNOW, STUDY WOULDN'T 1894 01:10:17,895 --> 01:10:23,334 HAPPEN IF YOU HAD ANSWERS. 1895 01:10:23,334 --> 01:10:24,602 STUDIES HAPPEN BECAUSE WE 1896 01:10:24,602 --> 01:10:28,606 REALLY WANT TO HELP CHILDREN 1897 01:10:28,606 --> 01:10:31,909 AND HELP PARENTS BUT TO TAKE 1898 01:10:31,909 --> 01:10:33,478 THIS DEVICE, WE WON'T KNOW 1899 01:10:33,478 --> 01:10:34,512 IF IT IS WORKING JUST 1900 01:10:34,512 --> 01:10:35,947 BECAUSE THE NUMBER GOES UP 1901 01:10:35,947 --> 01:10:37,148 AND DOWN. 1902 01:10:37,148 --> 01:10:38,783 WE WILL KNOW IT IS WORKING 1903 01:10:38,783 --> 01:10:41,619 IF PARENTS WHO KNOW THEIR 1904 01:10:41,619 --> 01:10:44,555 CHILDREN BEST NIGHT IN AND 1905 01:10:44,555 --> 01:10:46,824 NIGHT OUT, WILL SAY HIGH 1906 01:10:46,824 --> 01:10:48,559 CHILD, IT IS HELPING OR THEY 1907 01:10:48,559 --> 01:10:50,228 ARE MORE IN PAIN, YOU KNOW 1908 01:10:50,228 --> 01:10:54,532 THIS IS NOT A CHECK-IN AT 1909 01:10:54,532 --> 01:10:56,934 THE 1, 3, 6 AND 12-MONTH, 1910 01:10:56,934 --> 01:10:57,902 YOU HAVE TO WORK TOGETHER 1911 01:10:57,902 --> 01:10:59,203 AND PARENTS HAVE TO BE ABLE 1912 01:10:59,203 --> 01:11:00,972 TO FEEL THEY CAN REACH OUT 1913 01:11:00,972 --> 01:11:02,874 AT ANY POINT AND SAY I AM 1914 01:11:02,874 --> 01:11:04,542 HAVING TROUBLE WITH THIS OR 1915 01:11:04,542 --> 01:11:05,576 I DON'T UNDERSTAND THIS AND 1916 01:11:05,576 --> 01:11:08,579 THAT IT IS A OUT AND OUT -- 1917 01:11:08,579 --> 01:11:09,981 I MEAN CLINICAL TRIALS ARE 1918 01:11:09,981 --> 01:11:11,315 SHARED TRIALS AND I ACTUALLY 1919 01:11:11,315 --> 01:11:13,117 THINK THAT IS TRUE ABOUT 1920 01:11:13,117 --> 01:11:14,385 CLINICAL CARE FOR CHILDREN 1921 01:11:14,385 --> 01:11:17,955 AND MAYBE THAT IS MY 1922 01:11:17,955 --> 01:11:20,358 PEDIATRIC BIAS. 1923 01:11:20,358 --> 01:11:22,026 CONTRIBUTE FOR EVERYBODY BUT 1924 01:11:22,026 --> 01:11:25,897 MORE SO FOR MY BIAS FOR 1925 01:11:25,897 --> 01:11:30,134 CHILDREN BUT I THINK WE'RE 1926 01:11:30,134 --> 01:11:31,435 LEARNING TOGETHER. 1927 01:11:31,435 --> 01:11:32,370 >> MS. DOMINGUEZ YOU HAVE 1928 01:11:32,370 --> 01:11:37,475 HIGHLIGHTED A NUMBER OF YOUR 1929 01:11:37,475 --> 01:11:38,409 MOTIVATIONS FOR 1930 01:11:38,409 --> 01:11:39,610 PARTICIPATION, INCLUDING 1931 01:11:39,610 --> 01:11:40,645 KNOWING THAT NICHOLAS' CARE 1932 01:11:40,645 --> 01:11:41,913 WAS A PRIORITY BUT ALSO THIS 1933 01:11:41,913 --> 01:11:45,550 SENSE YOU HAVE HAD ALL ALONG 1934 01:11:45,550 --> 01:11:46,183 OF CONTRIBUTING TO THE 1935 01:11:46,183 --> 01:11:47,084 GREATER GOOD. 1936 01:11:47,084 --> 01:11:50,421 CAN YOU TELL US A LITTLE BIT 1937 01:11:50,421 --> 01:11:51,255 ABOUT NICHOLAS' MOTIVATION 1938 01:11:51,255 --> 01:11:52,356 FOR WANTING TO PARTICIPATE 1939 01:11:52,356 --> 01:11:53,925 IN THE STUDY AND WHETHER OR 1940 01:11:53,925 --> 01:11:55,393 NOT HE HAD ANY TROPICAL 1941 01:11:55,393 --> 01:12:00,998 SYSTEM TREPIDATION OR 1942 01:12:00,998 --> 01:12:01,365 FEARS? 1943 01:12:01,365 --> 01:12:04,769 >> I AM NOT SURE OF 1944 01:12:04,769 --> 01:12:05,870 NICHOLAS' AWARENESS OF 1945 01:12:05,870 --> 01:12:07,238 CERTAIN THINGS BUT I DO TELL 1946 01:12:07,238 --> 01:12:08,973 HIM HE IS GOING TO BE 1947 01:12:08,973 --> 01:12:10,608 THROUGH SURGERY AND 1948 01:12:10,608 --> 01:12:12,243 SOMETHING IS GOING TO HURT, 1949 01:12:12,243 --> 01:12:14,979 YOU KNOW LIKE THINGS ARE 1950 01:12:14,979 --> 01:12:16,447 GOING TO HURT. 1951 01:12:16,447 --> 01:12:17,548 HE IS PRETTY OPEN. 1952 01:12:17,548 --> 01:12:20,685 YOU KNOW WHEN YOU GO INTO 1953 01:12:20,685 --> 01:12:22,520 SURGERY, HE IS SUPER-RELAXED 1954 01:12:22,520 --> 01:12:24,288 AND I AM LIKE OKAY YOU FEEL 1955 01:12:24,288 --> 01:12:26,524 GOOD, WHEN YOU COME OUT YOU 1956 01:12:26,524 --> 01:12:28,392 ARE NOT GOING TO FEEL THAT 1957 01:12:28,392 --> 01:12:30,194 GOOD, YOU MIGHT BE IN SOME 1958 01:12:30,194 --> 01:12:32,129 PAIN BUT HE LIVES IN THE 1959 01:12:32,129 --> 01:12:33,664 MOMENT AND THAT IS ONE OF 1960 01:12:33,664 --> 01:12:36,000 THE THINGS I LOVE ABOUT MY 1961 01:12:36,000 --> 01:12:36,968 SON, ALTHOUGH THERE ARE MANY 1962 01:12:36,968 --> 01:12:40,838 THINGS BUT HE IS MY BUDDHA. 1963 01:12:40,838 --> 01:12:43,474 I LOVE BUDDHA, HAVE MANY 1964 01:12:43,474 --> 01:12:46,177 BUDDHAS BUT HE IS MY BUDDHA, 1965 01:12:46,177 --> 01:12:48,212 HE LIVES IN THE MOMENT. 1966 01:12:48,212 --> 01:12:50,014 AND I HAVE GOT TEN SOMETHING 1967 01:12:50,014 --> 01:12:52,717 WRONG, LIKE MY SON IS THE 1968 01:12:52,717 --> 01:12:53,117 WHOLE GOAL. 1969 01:12:53,117 --> 01:12:54,819 PEOPLE WANT TO BE WHERE MY 1970 01:12:54,819 --> 01:12:55,353 SON IS. 1971 01:12:55,353 --> 01:12:57,054 HE IS JUST LIVING IN THE 1972 01:12:57,054 --> 01:12:58,889 MOMENT, LIKE I AM NOT 1973 01:12:58,889 --> 01:12:59,457 BOTHERED RIGHT NOW. 1974 01:12:59,457 --> 01:13:00,858 MAYBE I WILL BE BOTHERED 1975 01:13:00,858 --> 01:13:03,861 LATER BUT RIGHT NOW I AM 1976 01:13:03,861 --> 01:13:06,931 CHILLING. 1977 01:13:06,931 --> 01:13:15,506 SO YEAH, THAT'S MY SON. 1978 01:13:15,506 --> 01:13:16,774 >> WE WOULD INVITE ANYONE 1979 01:13:16,774 --> 01:13:17,808 WITH ADDITIONAL QUESTIONS TO 1980 01:13:17,808 --> 01:13:20,311 PLACE THEM IN THE Q & -- OH, 1981 01:13:20,311 --> 01:13:21,746 WE HAVE A COUPLE MORE. 1982 01:13:21,746 --> 01:13:23,848 >> I CAN TAKE THE FIRST ONE. 1983 01:13:23,848 --> 01:13:26,584 SO THIS LOOKS LIKE IT IS FOR 1984 01:13:26,584 --> 01:13:27,785 Dr. HARTNICK. 1985 01:13:27,785 --> 01:13:32,089 AT WHAT POINT IN THE CHILD'S 1986 01:13:32,089 --> 01:13:37,628 SLEEP APNEA CONSIDER THE 1987 01:13:37,628 --> 01:13:38,262 HYPOGLOSSAL SURGERY, 1988 01:13:38,262 --> 01:13:39,397 BASICALLY BEFORE ALL THE 1989 01:13:39,397 --> 01:13:43,801 OTHER SURGERY OPTIONS OR 1990 01:13:43,801 --> 01:13:44,168 AFTER? 1991 01:13:44,168 --> 01:13:50,675 >> RIGHT, I GUESS I AM GOING 1992 01:13:50,675 --> 01:13:52,009 TO PUT FORTH -- SONG IN 1993 01:13:52,009 --> 01:13:54,378 SCIENCE YOU ALWAYS WANT TO 1994 01:13:54,378 --> 01:13:56,247 PUT FORTH YOUR BIAS AND 1995 01:13:56,247 --> 01:13:58,482 SINCE I AM THE PERSON WHO 1996 01:13:58,482 --> 01:13:59,817 DROPPED THE IMP PLANTATION 1997 01:13:59,817 --> 01:14:02,853 AND I KNOW IT WORKS IN 1998 01:14:02,853 --> 01:14:06,524 CHILDREN AND ADULTS, PART OF 1999 01:14:06,524 --> 01:14:09,126 ME WOULD SAY IF YOUR CHILD 2000 01:14:09,126 --> 01:14:12,930 STILL HAS AN ISSUE AFTER 2001 01:14:12,930 --> 01:14:15,066 DOING THE SURGERIES, IT IS 2002 01:14:15,066 --> 01:14:15,499 SO EFFECTIVE. 2003 01:14:15,499 --> 01:14:17,568 ON THE OTHER HAND, IT IS A 2004 01:14:17,568 --> 01:14:19,770 NEW DEVICE AND IT DEPENDS ON 2005 01:14:19,770 --> 01:14:21,205 YOUR PARTICULAR THRESHOLD OF 2006 01:14:21,205 --> 01:14:22,973 BEING PART OF THE PROJECT 2007 01:14:22,973 --> 01:14:23,808 TOGETHER. 2008 01:14:23,808 --> 01:14:25,509 AND, YOU KNOW, IF CPA P 2009 01:14:25,509 --> 01:14:30,414 WORKS WELL AND THE MASK 2010 01:14:30,414 --> 01:14:32,149 WORKS WELL AND THINGS ARE -- 2011 01:14:32,149 --> 01:14:34,285 IF YOUR HEART SAYS I AM NOT 2012 01:14:34,285 --> 01:14:36,220 READY TO BE PART OF THE 2013 01:14:36,220 --> 01:14:37,855 STUDY, YOU SHOULD EXPLORE 2014 01:14:37,855 --> 01:14:39,457 ALL OF THOSE DIFFERENT 2015 01:14:39,457 --> 01:14:39,790 OPTIONS. 2016 01:14:39,790 --> 01:14:40,991 BUT AT LEAST GETTIC THE 2017 01:14:40,991 --> 01:14:42,693 INFORMATION SO YOU CAN 2018 01:14:42,693 --> 01:14:44,428 INFORM YOURSELF KNOWING IT 2019 01:14:44,428 --> 01:14:45,796 IS AN OPTION, PROBABLY 2020 01:14:45,796 --> 01:14:47,898 EARLIER THAN SOME ARE AWARE 2021 01:14:47,898 --> 01:14:50,801 IT COULD BE AN OPTION. 2022 01:14:50,801 --> 01:14:55,239 I THINK ALL INFORMATION IS A 2023 01:14:55,239 --> 01:14:56,173 GOOD THING. 2024 01:14:56,173 --> 01:14:57,942 >> ARE YOU AWARE OF ANY 2025 01:14:57,942 --> 01:15:00,611 OTHER STUDIES THAT ARE 2026 01:15:00,611 --> 01:15:01,979 ONGOING LOOKING AT OUTCOMES 2027 01:15:01,979 --> 01:15:10,521 RELATED TO SPEECH WITH THIS 2028 01:15:10,521 --> 01:15:13,090 DEVICE OR THIS CONSPIRED 2029 01:15:13,090 --> 01:15:13,424 DEVICE? 2030 01:15:13,424 --> 01:15:16,227 >> NOT TO THE LEVEL OF 2031 01:15:16,227 --> 01:15:18,429 ACADEMIC RIGOR THAT THIS 2032 01:15:18,429 --> 01:15:19,997 STUDY IS DESIGNED FOR 2033 01:15:19,997 --> 01:15:22,333 BECAUSE I THINK THE QUESTION 2034 01:15:22,333 --> 01:15:25,736 WITH STUDIES IS TO BE ABLE 2035 01:15:25,736 --> 01:15:29,006 TO ENSURE HOW DO YOU 2036 01:15:29,006 --> 01:15:30,241 DISCRIMINATE ON THE BASELINE 2037 01:15:30,241 --> 01:15:32,209 OF CHANGE AND HOW YOU CAN 2038 01:15:32,209 --> 01:15:34,979 ACTUALLY -- THERE CAN BE A 2039 01:15:34,979 --> 01:15:36,113 RECALL BIAS WHERE SOMEONE 2040 01:15:36,113 --> 01:15:38,082 COULD SAY I THINK MY CHILD 2041 01:15:38,082 --> 01:15:38,482 DOES BETTER. 2042 01:15:38,482 --> 01:15:39,750 SO THIS IS ONE OF THE 2043 01:15:39,750 --> 01:15:42,753 REASONS WE HAVE SPENT AN 2044 01:15:42,753 --> 01:15:44,054 ENORMOUS AMOUNT OF TIME 2045 01:15:44,054 --> 01:15:46,056 WORKING WITH THE NIH AND 2046 01:15:46,056 --> 01:15:47,691 OTHERS IN THE STUDY THAT WE 2047 01:15:47,691 --> 01:15:50,494 FEEL LIKE WE CAN STAND BY -- 2048 01:15:50,494 --> 01:15:52,463 AND BY THE WAY, I DON'T KNOW 2049 01:15:52,463 --> 01:15:54,765 YET THAT IT WORKS, I HOPE IT 2050 01:15:54,765 --> 01:15:56,734 WORKS AND IF IT WEREN'T FOR 2051 01:15:56,734 --> 01:15:58,636 PEOPLE LIKE YOU, WE WOULDN'T 2052 01:15:58,636 --> 01:15:59,737 BE DOING THE STUDY BUT I 2053 01:15:59,737 --> 01:16:01,605 THINK IT IS IMPORTANT TO 2054 01:16:01,605 --> 01:16:04,842 KNOW AND IMPORTANT TO ASK 2055 01:16:04,842 --> 01:16:07,244 THE QUESTION WELL. 2056 01:16:07,244 --> 01:16:08,846 >> CAN I SAY SOMETHING REAL 2057 01:16:08,846 --> 01:16:09,346 QUICK? 2058 01:16:09,346 --> 01:16:11,916 SO AS FAR AS LIKE HAVING SO 2059 01:16:11,916 --> 01:16:13,484 MANY DIFFERENT SURGERIES, 2060 01:16:13,484 --> 01:16:16,387 BECAUSE MY SON HAD SO MANY, 2061 01:16:16,387 --> 01:16:18,889 I WOULD HEAR THE SURGEON 2062 01:16:18,889 --> 01:16:20,691 ALWAYS SAYING, YOU KNOW, BUT 2063 01:16:20,691 --> 01:16:23,227 HE IS STILL GOING TO NEED 2064 01:16:23,227 --> 01:16:25,196 THE MACHINE, I THINK IT IS 2065 01:16:25,196 --> 01:16:27,565 CALLED THE CPA P MACHINE. 2066 01:16:27,565 --> 01:16:29,400 HE WOULD STILL -- NO MATTER 2067 01:16:29,400 --> 01:16:30,835 ANY OF THESE SURGERIES, HE 2068 01:16:30,835 --> 01:16:32,469 WAS GOING TO NEED THIS 2069 01:16:32,469 --> 01:16:34,538 MACHINE WHICH MY SON DID NOT 2070 01:16:34,538 --> 01:16:35,339 TOLERATE. 2071 01:16:35,339 --> 01:16:37,374 HE DID NOT TOLERATE THE 2072 01:16:37,374 --> 01:16:37,708 MACHINE. 2073 01:16:37,708 --> 01:16:39,176 AND FOR ME ALTHOUGH THIS 2074 01:16:39,176 --> 01:16:41,111 SURGERY REQUIRED HIM TO HAVE 2075 01:16:41,111 --> 01:16:42,680 TWO INCISIONS THAT FOR ME 2076 01:16:42,680 --> 01:16:44,782 WERE HARD TO SEE BECAUSE 2077 01:16:44,782 --> 01:16:46,984 THAT'S MY BABY AND LIKE YOU 2078 01:16:46,984 --> 01:16:49,386 ARE CUTTING INTO MY SON, BUT 2079 01:16:49,386 --> 01:16:53,457 THERE IS NO MACHINE AND I 2080 01:16:53,457 --> 01:16:56,827 NOW DON'T HEAR THIS GURGLING 2081 01:16:56,827 --> 01:16:57,595 SOUND SOMETIMES I WOULD HEAR 2082 01:16:57,595 --> 01:17:00,164 WHEN HE WAS SLEEPING, LIKE 2083 01:17:00,164 --> 01:17:03,968 HIS TONGUE WAS CLAPSED, LIKE 2084 01:17:03,968 --> 01:17:06,303 I DON'T EXPERIENCE THAT 2085 01:17:06,303 --> 01:17:06,871 ANYMORE. 2086 01:17:06,871 --> 01:17:08,973 AND FOR ME, IF IT MEANS HE 2087 01:17:08,973 --> 01:17:11,108 IS GOING TO SLEEP MORE 2088 01:17:11,108 --> 01:17:13,944 COMFORTABLY, IT IS GOING TO 2089 01:17:13,944 --> 01:17:15,646 IMPROVE HIS BREATHING WHILE 2090 01:17:15,646 --> 01:17:17,848 HE SLEEPS, THE INCISIONS ARE 2091 01:17:17,848 --> 01:17:18,215 WORTH IT. 2092 01:17:18,215 --> 01:17:25,222 SO I JUST WANT TO MENTION 2093 01:17:25,222 --> 01:17:27,258 THAT. 2094 01:17:27,258 --> 01:17:31,262 >> NO, I THINK THAT IS 2095 01:17:31,262 --> 01:17:34,899 IMPORTANT, THE OUTCOME IS 2096 01:17:34,899 --> 01:17:39,169 BETTER THAN THE POTENTIAL -- 2097 01:17:39,169 --> 01:17:39,570 [INAUDIBLE]. 2098 01:17:39,570 --> 01:17:41,772 SO I KNOW WE MAY HAVE A FEW 2099 01:17:41,772 --> 01:17:43,073 MORE MINUTES -- 2100 01:17:43,073 --> 01:17:44,408 >> YES, ANOTHER QUESTION 2101 01:17:44,408 --> 01:17:45,643 ACTUALLY ON THIS. 2102 01:17:45,643 --> 01:17:46,176 >> JUST BEFORE. 2103 01:17:46,176 --> 01:17:48,612 >> YES, JUST CAME IN. 2104 01:17:48,612 --> 01:17:48,979 [LAUGHTER] 2105 01:17:48,979 --> 01:17:52,917 AND THIS ONE IS ACTUALLY FOR 2106 01:17:52,917 --> 01:17:55,286 MS. DOMINGUEZ, DO YOU KNOW 2107 01:17:55,286 --> 01:17:57,755 IF INSURANCE COVERS THE 2108 01:17:57,755 --> 01:17:58,722 PROCEDURE? 2109 01:17:58,722 --> 01:17:59,657 >> FOR -- 2110 01:17:59,657 --> 01:18:00,991 >> THE SIMILARITY, YES. 2111 01:18:00,991 --> 01:18:03,494 >> FOR US, YES, IT DID, SO I 2112 01:18:03,494 --> 01:18:05,329 AM SUPER GRATEFUL. 2113 01:18:05,329 --> 01:18:14,104 WE HAD BLUE CROSS BLUE 2114 01:18:14,104 --> 01:18:15,539 SHIELD AND THEN ANOTHER 2115 01:18:15,539 --> 01:18:17,975 HEALTH INSURANCE THAT COVERS 2116 01:18:17,975 --> 01:18:19,576 ANYTHING BLUE CROSS BLUE 2117 01:18:19,576 --> 01:18:20,210 SHIELD DOESN'T. 2118 01:18:20,210 --> 01:18:22,579 I DON'T KNOW IF OTHER 2119 01:18:22,579 --> 01:18:24,214 INSURANCE MIGHT NOT -- 2120 01:18:24,214 --> 01:18:26,050 >> SOMETIMES IT IS VERY 2121 01:18:26,050 --> 01:18:26,951 STRAIGHTFORWARD AND EASY AND 2122 01:18:26,951 --> 01:18:28,719 SOMETIMES IT IS REALLY 2123 01:18:28,719 --> 01:18:29,920 PAINFUL AND TAKES A WHILE. 2124 01:18:29,920 --> 01:18:32,256 SO IT CAN BE THE MOST 2125 01:18:32,256 --> 01:18:33,524 FRUSTRATING PART OF THIS AND 2126 01:18:33,524 --> 01:18:35,793 OFTEN I HAVE TO WRITE A LOT 2127 01:18:35,793 --> 01:18:42,866 OF LETTERS FOR A LOT OF 2128 01:18:42,866 --> 01:18:44,501 DENIALS AND SOME PARENTS 2129 01:18:44,501 --> 01:18:45,970 JUST HAVE TO BREATHE WHILE 2130 01:18:45,970 --> 01:18:47,604 THEIR CHILD IS SUFFERING AND 2131 01:18:47,604 --> 01:18:49,106 CAN BE QUITE A EXPERIENCE. 2132 01:18:49,106 --> 01:18:50,641 BUT IT WORKS WELL AND I HAVE 2133 01:18:50,641 --> 01:18:52,543 HAD A COUPLE OF KIDS WHO 2134 01:18:52,543 --> 01:18:56,647 COULD NOT GET APPROVED SO IT 2135 01:18:56,647 --> 01:18:59,616 IS A RARITY BUT IT IS 2136 01:18:59,616 --> 01:19:06,757 REALITY. 2137 01:19:06,757 --> 01:19:12,229 >> THAT WAS BE AN IMPORTANT 2138 01:19:12,229 --> 01:19:14,264 QUESTION TO ASK FOR PARENTS 2139 01:19:14,264 --> 01:19:17,301 COMING IN, THAT THAT IS ONE 2140 01:19:17,301 --> 01:19:22,339 HURDLE THEY MAY OR MAY NOT 2141 01:19:22,339 --> 01:19:23,107 HAVE TO FACE. 2142 01:19:23,107 --> 01:19:28,379 ARE THERE OTHER THINGS, 2143 01:19:28,379 --> 01:19:29,880 MS. DOMINGUEZ, OF LESSONS 2144 01:19:29,880 --> 01:19:31,015 LEARNED ALONG THE WAY OR 2145 01:19:31,015 --> 01:19:32,216 THINGS YOU SHOULD BE 2146 01:19:32,216 --> 01:19:35,486 THINKING ABOUT, EITHER FROM 2147 01:19:35,486 --> 01:19:38,956 YOUR SIDE OR Dr. HARTNICK, 2148 01:19:38,956 --> 01:19:42,126 AS YOU CONSIDER THIS AND 2149 01:19:42,126 --> 01:19:43,861 TAKE INTO CONSIDERATION THE 2150 01:19:43,861 --> 01:19:44,595 OPTIONS? 2151 01:19:44,595 --> 01:19:47,131 >> WHAT I SAID ABOUT HIM 2152 01:19:47,131 --> 01:19:48,932 HAVING SO MANY SURGERIES, 2153 01:19:48,932 --> 01:19:54,138 LIKE I AM NOT TELLING NUN 2154 01:19:54,138 --> 01:19:56,306 ANYONE NOT TO GET THE 2155 01:19:56,306 --> 01:19:57,908 REDUCTION BUT IT WAS 2156 01:19:57,908 --> 01:19:58,876 TRAUMATIC. 2157 01:19:58,876 --> 01:20:01,779 MY SON HAD SOME BLEEDING AND 2158 01:20:01,779 --> 01:20:03,814 THEY DIDN'T KNOW WHAT WAS 2159 01:20:03,814 --> 01:20:05,049 HAPPENING, IT WAS IN HIS 2160 01:20:05,049 --> 01:20:06,650 MOUTH AND HE WAS SWALLOWING 2161 01:20:06,650 --> 01:20:09,286 THE BLOOD AND ENDED UP 2162 01:20:09,286 --> 01:20:11,789 THROWING UP THE BLOOD CLOTS 2163 01:20:11,789 --> 01:20:14,525 AND I AM STILL TRAUMATIZED. 2164 01:20:14,525 --> 01:20:16,427 WHEN HE COUGHS, HE THINKS HE 2165 01:20:16,427 --> 01:20:18,095 WILL SPIT OUT BLOOD TO THIS 2166 01:20:18,095 --> 01:20:20,431 DAY AND IT MAY NOT BE 2167 01:20:20,431 --> 01:20:21,765 EVERYONE'S EXPERIENCE BUT IF 2168 01:20:21,765 --> 01:20:23,867 I HAD KNOWN ABOUT SOMETHING 2169 01:20:23,867 --> 01:20:25,469 LIKE THIS, I WOULD HAVE WENT 2170 01:20:25,469 --> 01:20:28,072 DIRECTLY TO IT RATHER THAN 2171 01:20:28,072 --> 01:20:30,541 HAVING HIM GO THROUGH 2172 01:20:30,541 --> 01:20:31,175 APPROXIMATELY UNNECESSARY 2173 01:20:31,175 --> 01:20:31,508 TRAUMA. 2174 01:20:31,508 --> 01:20:32,676 ALTHOUGH HE WENT THROUGH IT 2175 01:20:32,676 --> 01:20:33,844 AND EVERYTHING IS MEANT TO 2176 01:20:33,844 --> 01:20:37,314 BE WHAT IT IS, IT IS DONE, 2177 01:20:37,314 --> 01:20:40,350 RIGHT, BUT IF I HAD A CHOICE 2178 01:20:40,350 --> 01:20:43,187 TO REDO IT AND HEAR ABOUT 2179 01:20:43,187 --> 01:20:45,089 THIS, I WOULD SAY YOU KNOW 2180 01:20:45,089 --> 01:20:48,192 WHAT, LET'S DO THIS AND WE 2181 01:20:48,192 --> 01:20:49,860 DON'T HAVE TO DO THAT, THEN 2182 01:20:49,860 --> 01:20:53,630 I WOULD BE LIKE OKAY. 2183 01:20:53,630 --> 01:20:53,997 YEAH. 2184 01:20:53,997 --> 01:20:56,166 >> I WOULD JUST SAY IN TERMS 2185 01:20:56,166 --> 01:21:00,771 OF A POINT OF VIEW FOR 2186 01:21:00,771 --> 01:21:04,708 PARENTS, THIS IS A DEVICE IF 2187 01:21:04,708 --> 01:21:07,244 DONE WELL IS SAFE AND THE 2188 01:21:07,244 --> 01:21:08,812 PARENTS AND KIDS TOLERATE IT 2189 01:21:08,812 --> 01:21:09,113 WELL. 2190 01:21:09,113 --> 01:21:10,314 BUT I THINK IF YOU THINK OF 2191 01:21:10,314 --> 01:21:12,683 IT AS YOU ARE GOING TO GO 2192 01:21:12,683 --> 01:21:14,718 THROUGH THE SURGERY AND IT 2193 01:21:14,718 --> 01:21:17,321 IS DONE, THAT IS IT, IT IS A 2194 01:21:17,321 --> 01:21:18,288 YEAR EXPERIENCE, A SHARED 2195 01:21:18,288 --> 01:21:19,523 EXPERIENCE TOGETHER AND I 2196 01:21:19,523 --> 01:21:21,158 THINK IT IS SUPER IMPORTANT 2197 01:21:21,158 --> 01:21:22,659 THROUGHOUT ALL OF THIS, IT 2198 01:21:22,659 --> 01:21:25,863 IS THAT NETWORKS SUSPECT AND 2199 01:21:25,863 --> 01:21:29,967 NOT JUST A YEAR BUT IT WILL 2200 01:21:29,967 --> 01:21:30,634 TAKE TENDING AFTERWARDS. 2201 01:21:30,634 --> 01:21:31,902 BUT IT IS IMPORTANT TO KNOW 2202 01:21:31,902 --> 01:21:39,576 IT IS A RELATIONSHIP. 2203 01:21:39,576 --> 01:21:41,445 >> AND EVEN JUST THINKING 2204 01:21:41,445 --> 01:21:43,380 ABOUT THE CPA P MACHINE, 2205 01:21:43,380 --> 01:21:46,216 LIKE OH MY GOD, LITERALLY I 2206 01:21:46,216 --> 01:21:50,220 WAS TOLD BECAUSE OF MY SON'S 2207 01:21:50,220 --> 01:21:50,954 OBSTRUCTION, THE CPA P 2208 01:21:50,954 --> 01:21:52,756 MACHINE HAD TO BE ALL THE 2209 01:21:52,756 --> 01:21:55,058 WAY UP AND I WAS TOLD BY THE 2210 01:21:55,058 --> 01:21:57,628 SURGEON, NOT Dr. HARTNICK 2211 01:21:57,628 --> 01:21:58,595 BUT ANOTHER SURGEON, HAVING 2212 01:21:58,595 --> 01:22:01,031 IT ALL THE WAY HIGH IS THE 2213 01:22:01,031 --> 01:22:02,733 EQUIVALENT OF BEING ON THE 2214 01:22:02,733 --> 01:22:04,234 HIGHWAY DRIVING AND HAVING 2215 01:22:04,234 --> 01:22:07,504 MY SON'S FACE OUT OF THE 2216 01:22:07,504 --> 01:22:08,305 WINDOW LIKE TYPE OF SPEED 2217 01:22:08,305 --> 01:22:10,741 AND I WAS LIKE WHAT? 2218 01:22:10,741 --> 01:22:12,075 THAT SOUNDS CRAZY. 2219 01:22:12,075 --> 01:22:13,510 SO WHEN NICHOLAS WAS HAVING 2220 01:22:13,510 --> 01:22:15,979 IT AT NIGHT HE WASN'T 2221 01:22:15,979 --> 01:22:17,714 TOLERATING IT AND I PUT THIS 2222 01:22:17,714 --> 01:22:20,384 ON AND FELT LIKE I WAS 2223 01:22:20,384 --> 01:22:21,585 SUFFOCATING SO I WAS LIKE 2224 01:22:21,585 --> 01:22:25,789 NO, WE WILL LOOK FOR ANOTHER 2225 01:22:25,789 --> 01:22:26,156 SOLUTION. 2226 01:22:26,156 --> 01:22:30,494 AND I AM GREATFUL HE HAD 2227 01:22:30,494 --> 01:22:30,761 ONE. 2228 01:22:30,761 --> 01:22:33,130 >> NO, I AGREE, I THINK IT 2229 01:22:33,130 --> 01:22:33,830 IS A WONDERFUL OPPORTUNITY 2230 01:22:33,830 --> 01:22:37,501 TO BE ABLE TO BE PART OF 2231 01:22:37,501 --> 01:22:38,602 Dr. HARTNICK'S STUDY. 2232 01:22:38,602 --> 01:22:41,405 GLAD YOU FOUND OUT ABOUT IT, 2233 01:22:41,405 --> 01:22:45,442 YOU KNOW, AS WELL, BUT DOING 2234 01:22:45,442 --> 01:22:48,845 BETTER NOT ONLY FOR 2235 01:22:48,845 --> 01:22:49,580 NICHOLAS' WELL-BEING BUT 2236 01:22:49,580 --> 01:22:51,281 DOING BETTER IN SCHOOL AND 2237 01:22:51,281 --> 01:22:53,283 YOU ARE AN ADVOCATE AS WELL, 2238 01:22:53,283 --> 01:22:54,818 NOT ONLY FOR NICHOLAS BUT 2239 01:22:54,818 --> 01:22:56,186 ALSO FOR THIS STUDY. 2240 01:22:56,186 --> 01:22:58,021 AND I KNOW WE'RE GETTING 2241 01:22:58,021 --> 01:23:01,391 CLOSE TO TIME SO I DO WANT 2242 01:23:01,391 --> 01:23:04,027 TO JUST TAKE THE TIME TO 2243 01:23:04,027 --> 01:23:05,762 MAKE SURE WE DON'T RUN UP TO 2244 01:23:05,762 --> 01:23:07,264 THE LAST MINUTE BEFORE WE 2245 01:23:07,264 --> 01:23:12,569 HAVE AN OPPORTUNITY TO SAY 2246 01:23:12,569 --> 01:23:12,970 THANK YOU. 2247 01:23:12,970 --> 01:23:14,805 AND THERE WAS SOMETHING THAT 2248 01:23:14,805 --> 01:23:16,340 CAME CAME IN. 2249 01:23:16,340 --> 01:23:17,341 >> YEAH, PLEASE. 2250 01:23:17,341 --> 01:23:18,275 >> THE AUDIENCE HAS TO SAY 2251 01:23:18,275 --> 01:23:19,977 AND I THINK THEY ECHO WHAT 2252 01:23:19,977 --> 01:23:22,279 WE FEEL AS WELL, THAT YOU 2253 01:23:22,279 --> 01:23:24,114 ARE AN INSPIRING MOTHER AND 2254 01:23:24,114 --> 01:23:26,783 REALLY TAKING CARE OF 2255 01:23:26,783 --> 01:23:29,152 EVERYTHING, HAVE WRITTEN THE 2256 01:23:29,152 --> 01:23:32,322 BOOK, YOU HAVE SUCH CALM AND 2257 01:23:32,322 --> 01:23:34,625 POISE, EVEN IN THE MIDST OF 2258 01:23:34,625 --> 01:23:35,859 THINGS THAT MAYBE OTHERS 2259 01:23:35,859 --> 01:23:38,662 WOULD FACE AND PROBABLY BE 2260 01:23:38,662 --> 01:23:38,996 BROKEN. 2261 01:23:38,996 --> 01:23:40,364 SO WE APPLAUD YOU FOR ALL 2262 01:23:40,364 --> 01:23:42,132 THAT YOU DO AND THANK YOU 2263 01:23:42,132 --> 01:23:43,267 FOR CONTINUING TO INSPIRE 2264 01:23:43,267 --> 01:23:45,202 ALL OF US AND VALIDATE THE 2265 01:23:45,202 --> 01:23:49,072 WORK THAT WE DO HERE AT NIH 2266 01:23:49,072 --> 01:23:51,742 AND AS PART OF THE INCLUDE 2267 01:23:51,742 --> 01:23:52,743 PROGRAM AND REALLY 2268 01:23:52,743 --> 01:23:54,311 SUPPORTING Dr. HARTNICK 2269 01:23:54,311 --> 01:23:55,245 AND HIS RESEARCH. 2270 01:23:55,245 --> 01:23:57,014 BECAUSE AS YOU MENTIONED, 2271 01:23:57,014 --> 01:23:58,548 THIS ISN'T POSSIBLE 2272 01:23:58,548 --> 01:23:59,916 WITHOUT -- [INAUDIBLE]. 2273 01:23:59,916 --> 01:24:01,852 THEY CREATE THE SCIENCE BUT 2274 01:24:01,852 --> 01:24:06,056 IF THERE IS NO 2275 01:24:06,056 --> 01:24:07,424 PARTICIPATION, THE STUDY 2276 01:24:07,424 --> 01:24:08,692 WOULDN'T BE THERE. 2277 01:24:08,692 --> 01:24:10,394 SO Dr. HARTNICK, THANK YOU 2278 01:24:10,394 --> 01:24:11,461 FOR THE RESEARCH YOU ARE 2279 01:24:11,461 --> 01:24:14,665 DOING, IT IS SUCH AN 2280 01:24:14,665 --> 01:24:16,867 IMPORTANT TOPIC AND 2281 01:24:16,867 --> 01:24:18,969 HOPEFULLY WILL PUSH FORWARD 2282 01:24:18,969 --> 01:24:20,871 FOR THE FDA APPROVAL OF 2283 01:24:20,871 --> 01:24:22,606 OTHER DEVICES AND AS WE LOOK 2284 01:24:22,606 --> 01:24:23,874 AT OTHER POPULATIONS AS 2285 01:24:23,874 --> 01:24:24,174 WELL. 2286 01:24:24,174 --> 01:24:26,276 SO THANK YOU FOR ALL OF THE 2287 01:24:26,276 --> 01:24:27,377 WORK YOU ARE DOING. 2288 01:24:27,377 --> 01:24:30,647 I WILL TURN IT OVER TO 2289 01:24:30,647 --> 01:24:32,015 MS. DOMINGUEZ TO SEE IF YOU 2290 01:24:32,015 --> 01:24:33,116 HAVE ANY LAST WORDS OR 2291 01:24:33,116 --> 01:24:34,651 ANYTHING YOU WOULD LIKE TO 2292 01:24:34,651 --> 01:24:39,356 SHARE WITH THE AUDIENCE? 2293 01:24:39,356 --> 01:24:41,992 >> WELL I AM SO GRATEFUL, 2294 01:24:41,992 --> 01:24:43,360 HEARING YOU SAY THOSE WORDS 2295 01:24:43,360 --> 01:24:45,295 MEANS A LOT TO ME BECAUSE MY 2296 01:24:45,295 --> 01:24:50,033 MISSION IN THE WORLD IS TO 2297 01:24:50,033 --> 01:24:54,071 BREAK BARRIERS AROUND PER 2298 01:24:54,071 --> 01:24:55,605 CEPTION AND TO BE IN LOVE 2299 01:24:55,605 --> 01:24:57,007 BECAUSE THAT IS WHERE WE ARE 2300 01:24:57,007 --> 01:24:57,908 MEANT TO BE. 2301 01:24:57,908 --> 01:25:00,644 AND I LOVE THAT MY SON 2302 01:25:00,644 --> 01:25:02,112 AWAKENS ME TO THAT 2303 01:25:02,112 --> 01:25:02,579 OPPORTUNITY. 2304 01:25:02,579 --> 01:25:03,880 AND SOME PEOPLE THINK I SAY 2305 01:25:03,880 --> 01:25:05,749 THAT BECAUSE MY SON WAS BORN 2306 01:25:05,749 --> 01:25:06,783 WITH DOWN SYNDROME BUT 2307 01:25:06,783 --> 01:25:08,552 REALLY IT IS BECAUSE I LOVED 2308 01:25:08,552 --> 01:25:10,053 HIM BEFORE I HEAD MINIMUM. 2309 01:25:10,053 --> 01:25:11,988 I LOVED HIM BEFORE I SAW 2310 01:25:11,988 --> 01:25:12,489 HIM. 2311 01:25:12,489 --> 01:25:17,027 AND I AM NOT GOING TO CRY. 2312 01:25:17,027 --> 01:25:17,494 [LAUGHTER] 2313 01:25:17,494 --> 01:25:19,830 WAIT A MINUTE, THE TEARS ARE 2314 01:25:19,830 --> 01:25:20,864 EMERGING, THEY ARE RIGHT AT 2315 01:25:20,864 --> 01:25:25,702 THE TIP OF MY EYELIDS. 2316 01:25:25,702 --> 01:25:28,638 >> JUST SO YOU KNOW YOU ARE 2317 01:25:28,638 --> 01:25:31,842 NOT ALONE, MINE ARE HERE 2318 01:25:31,842 --> 01:25:32,142 TOO. 2319 01:25:32,142 --> 01:25:33,877 >> BUT TO REALLY GET TO 2320 01:25:33,877 --> 01:25:37,381 EXPERIENCE WHAT 2321 01:25:37,381 --> 01:25:39,049 UNCONDITIONAL LOVE IS AND TO 2322 01:25:39,049 --> 01:25:43,053 HAVE EXPERIENCE IN MY 2323 01:25:43,053 --> 01:25:45,222 LIFETIME WHAT UNCONDITIONAL 2324 01:25:45,222 --> 01:25:47,524 LOVE ISN'T PROVIDED ME ALSO 2325 01:25:47,524 --> 01:25:49,226 THE TOOLS TO BE WHAT I 2326 01:25:49,226 --> 01:25:52,529 NEEDED TO BE FOR MYSELF AND 2327 01:25:52,529 --> 01:25:54,931 MY SON NOW WHICH, YOU KNOW, 2328 01:25:54,931 --> 01:25:58,635 THAT IS WHY FOR ME, SOME OF 2329 01:25:58,635 --> 01:26:01,438 IT, DID I PASS ALL OF THOSE 2330 01:26:01,438 --> 01:26:04,841 EXPERIENCES TO BE WHO I AM, 2331 01:26:04,841 --> 01:26:07,744 BECAUSE COULDN'T THERE HAVE 2332 01:26:07,744 --> 01:26:09,246 BEEN AN EASY BUTTON? 2333 01:26:09,246 --> 01:26:13,617 BUT I ALSO WANT TO MENTION 2334 01:26:13,617 --> 01:26:14,584 THE AWAKEN WINNERS, I WILL 2335 01:26:14,584 --> 01:26:17,554 SHARE, IT IS ON AMAZON BUT 2336 01:26:17,554 --> 01:26:19,956 ALSO AT THE AWAKENED 2337 01:26:19,956 --> 01:26:21,792 WINNERS.COM AND IF YOU BUY 2338 01:26:21,792 --> 01:26:25,095 ONE THROUGH THE 2339 01:26:25,095 --> 01:26:25,862 AWAKENEDWINNERS.COM, I WILL 2340 01:26:25,862 --> 01:26:27,063 SEND YOU A COPY MYSELF. 2341 01:26:27,063 --> 01:26:29,699 I ALSO HAVE A COUPLE OF 2342 01:26:29,699 --> 01:26:31,601 SONGS ON YOUTUBE, ONE OF 2343 01:26:31,601 --> 01:26:32,869 THEM IS CALLED ALDERMEN AND 2344 01:26:32,869 --> 01:26:36,072 ONE OF THEM IS CALLED I 2345 01:26:36,072 --> 01:26:38,642 ALREADY WON, BOTH SONGS HAVE 2346 01:26:38,642 --> 01:26:41,144 MY SON IN THEM AND THE ONE 2347 01:26:41,144 --> 01:26:42,412 THAT IS CALLED DOWN 2348 01:26:42,412 --> 01:26:43,480 SYNDROME, I AM THINKING 2349 01:26:43,480 --> 01:26:48,385 DON'T YOU KNOW I ALREADY 2350 01:26:48,385 --> 01:26:51,154 WON, I RAP DOWN SYNDROME TO 2351 01:26:51,154 --> 01:26:53,623 21 AND MY SON SAYING DON'T 2352 01:26:53,623 --> 01:26:56,593 YOU KNOW I ALREADY WON, I 2353 01:26:56,593 --> 01:26:58,195 ROCK DOWN SYNDROME TILL 21 2354 01:26:58,195 --> 01:26:59,863 AND IT IS A REALLY GREAT 2355 01:26:59,863 --> 01:27:01,431 VIDEO IF YOU WANT TO CHECK 2356 01:27:01,431 --> 01:27:01,998 IT OUT. 2357 01:27:01,998 --> 01:27:04,835 WE ARE WORKING ON NEW MUSIC 2358 01:27:04,835 --> 01:27:07,037 AND MY VISION IS TO KEEP 2359 01:27:07,037 --> 01:27:10,407 SPREADING LOVE AND I 2360 01:27:10,407 --> 01:27:12,342 DIGRESS, THANK YOU FOR 2361 01:27:12,342 --> 01:27:13,777 HAVING ME HERE AND MUCH WILL 2362 01:27:13,777 --> 01:27:15,245 HAVE TO ALL OF YOU AND THANK 2363 01:27:15,245 --> 01:27:17,614 YOU FOR WHAT YOU ARE DOING. 2364 01:27:17,614 --> 01:27:19,049 >> THANK YOU, TRULY 2365 01:27:19,049 --> 01:27:20,050 APPRECIATE IT AND I 2366 01:27:20,050 --> 01:27:22,352 DEFINITELY WILL BE CHECKING 2367 01:27:22,352 --> 01:27:25,822 OUT THE MUSIC BECAUSE I LOVE 2368 01:27:25,822 --> 01:27:27,357 THAT AND Dr. HARTNICK WE 2369 01:27:27,357 --> 01:27:29,726 WILL GIVE YOU A CHANCE TO 2370 01:27:29,726 --> 01:27:31,394 GIVE A FINAL COMMENT AS 2371 01:27:31,394 --> 01:27:31,695 WELL. 2372 01:27:31,695 --> 01:27:32,662 >> THANKS TO THE TEAM AND I 2373 01:27:32,662 --> 01:27:34,965 WILL SAY I HAVE THOSE SONGS 2374 01:27:34,965 --> 01:27:37,100 AND I LOVE THEM, AND 2375 01:27:37,100 --> 01:27:38,368 LISTENING TO THOSE SONGS IT 2376 01:27:38,368 --> 01:27:40,637 IS INCREDIBLE SO THANKS, 2377 01:27:40,637 --> 01:27:41,004 EVERYBODY. 2378 01:27:41,004 --> 01:27:42,305 >> THANK YOU, AND Dr. 2379 01:27:42,305 --> 01:27:46,576 RYAN, YOU HAVE THE LAST 2380 01:27:46,576 --> 01:27:47,077 COMMENT? 2381 01:27:47,077 --> 01:27:48,912 THANK YOU AGAIN FOR JOINING 2382 01:27:48,912 --> 01:27:52,716 US IN THIS WEBINAR. 2383 01:27:52,716 --> 01:27:54,251 IT WAS RECORDED AND BE 2384 01:27:54,251 --> 01:27:56,319 AVAILABLE ON THE NIH 2385 01:27:56,319 --> 01:27:58,455 VIDEOCAST AND WE WILL SEND 2386 01:27:58,455 --> 01:27:59,789 AROUND A LINK FOR ALL OF 2387 01:27:59,789 --> 01:28:01,858 THOSE ABLE TO JOIN US FOR 2388 01:28:01,858 --> 01:28:04,528 THE WEBINAR. 2389 01:28:04,528 --> 01:28:05,762 AND Dr. HARTNICK IF YOU 2390 01:28:05,762 --> 01:28:08,131 DON'T MIND WE WILL SHARE 2391 01:28:08,131 --> 01:28:10,367 YOUR E-MAIL ADDRESS SO THAT 2392 01:28:10,367 --> 01:28:11,034 THOSE INTERESTED WILL REACH 2393 01:28:11,034 --> 01:28:12,769 OUT TO YOU AS WELL. 2394 01:28:12,769 --> 01:28:13,270 SO Dr. RYAN? 2395 01:28:13,270 --> 01:28:17,774 >> I WILL JUST ECHO WHAT 2396 01:28:17,774 --> 01:28:20,010 YOU SAID ERIKA, THANKS FOR A 2397 01:28:20,010 --> 01:28:21,711 REALLY WONDERFUL AND 2398 01:28:21,711 --> 01:28:25,415 INSPIRING WEBINAR AND JUST 2399 01:28:25,415 --> 01:28:26,816 CAN'T THANK YOU ENOUGH. 2400 01:28:26,816 --> 01:28:28,251 >> GRATEFUL FOR YOU ALL, 2401 01:28:28,251 --> 01:28:30,520 THANK YOU FOR WILL THING ME 2402 01:28:30,520 --> 01:28:31,821 PARTICIPATE. 2403 01:28:31,821 --> 01:28:34,224 >> THANK YOU ALL VERY, VERY 2404 01:28:34,224 --> 01:28:34,658 MUCH. 2405 01:28:34,658 --> 01:28:35,325 >> YOU TOO, HAVE A 2406 01:28:35,325 --> 01:28:38,962 WONDERFUL REST OF THE DAY. 2407 01:28:38,962 --> 01:28:41,097 BYE. 2408 01:28:41,097 --> 01:28:51,508 [ END OF SESSION ]