WEBVTT 00:00:34.834 --> 00:00:36.603 [Crystal] I’m gonna see if I can set this up 00:00:37.137 --> 00:00:39.672 in a manner that 00:00:40.740 --> 00:00:43.176 we can actually see. 00:00:43.376 --> 00:00:45.045 I don't know 00:00:45.345 --> 00:00:48.348 if that's going to work, but we'll try. 00:00:48.581 --> 00:00:50.116 Alrighty, Dwight. 00:00:50.116 --> 00:00:53.086 Okay, gotta get into bed and we gotta get dressed quickly 00:00:53.086 --> 00:00:53.987 because we gotta leave. 00:01:02.862 --> 00:01:04.798 Please. 00:01:04.798 --> 00:01:07.801 Alright, please. 00:01:07.801 --> 00:01:08.501 Come on. 00:01:08.501 --> 00:01:13.073 One, two, three. 00:01:13.073 --> 00:01:14.007 Let’s go. 00:01:24.317 --> 00:01:24.918 In the bed. 00:01:24.918 --> 00:01:27.287 Let's get dressed. Gotta change your clothes. 00:01:27.287 --> 00:01:28.755 I’m gonna take the, 00:01:28.755 --> 00:01:30.090 cut the camera off now. 00:01:30.090 --> 00:01:32.425 He's in the bed. 00:01:37.664 --> 00:01:39.032 I’m gonna cry. 00:01:39.432 --> 00:01:40.800 That's okay. 00:01:41.134 --> 00:01:44.137 Say “Merry Christmas Kiyah.” 00:01:45.805 --> 00:01:48.808 from Dwighty. 00:01:48.842 --> 00:01:50.677 Oh, she's going to cry. 00:01:50.677 --> 00:01:51.578 Let's see. 00:01:52.345 --> 00:01:56.616 [Group singing] “Happy Birthday” 00:01:57.117 --> 00:02:00.086 [Crystal] We've been in our home for five years now. 00:02:00.086 --> 00:02:03.289 Dwight was a lot smaller then, five years ago, 00:02:03.289 --> 00:02:06.292 and he had a smaller wheelchair. 00:02:07.994 --> 00:02:10.430 Hey little one. 00:02:10.730 --> 00:02:13.166 Say hi. 00:02:13.867 --> 00:02:16.302 Hello little one. 00:02:18.204 --> 00:02:21.207 So it is now 00:02:21.207 --> 00:02:24.210 almost 7:30 in the morning. 00:02:24.410 --> 00:02:29.382 He’s looking up at all of his characters. 00:02:30.216 --> 00:02:34.254 He loves looking at these stars whenever he's in the bed. 00:02:35.588 --> 00:02:39.826 We try and make sure we put those on for him. 00:02:40.226 --> 00:02:43.229 And he enjoys looking at all of his 00:02:43.463 --> 00:02:46.699 characters around his bed and looking at lights. 00:02:48.268 --> 00:02:51.271 Going to the living room. 00:02:52.238 --> 00:02:54.974 Uh oh, sorry. 00:02:55.875 --> 00:02:57.043 A really sharp 00:02:57.043 --> 00:02:58.745 turn here. 00:02:58.745 --> 00:02:59.579 Sharp turn. 00:02:59.579 --> 00:03:02.315 Uh oh, sorry Dwight. 00:03:02.315 --> 00:03:05.318 Back, back up, let’s see if we can get your 00:03:05.318 --> 00:03:07.820 hands in 00:03:07.820 --> 00:03:08.888 through there. 00:03:08.888 --> 00:03:11.324 Good. 00:03:11.324 --> 00:03:12.825 Put your feet in. 00:03:12.825 --> 00:03:15.828 Put your hand. 00:03:20.900 --> 00:03:22.135 Okay. 00:03:22.135 --> 00:03:23.303 Mommy will just pick it up... 00:03:23.303 --> 00:03:24.370 put your hand 00:03:24.370 --> 00:03:25.905 hand 00:03:25.905 --> 00:03:30.043 Let me see get your hand, please. 00:03:30.043 --> 00:03:35.081 The home that we live in is fully accessible. 00:03:35.081 --> 00:03:38.084 It’s considered a Universal Design. 00:03:38.618 --> 00:03:42.922 It has been really a blessing. We’ve been really fortunate. 00:03:42.922 --> 00:03:44.791 Still, some things that are 00:03:44.791 --> 00:03:47.794 a challenge. 00:03:53.399 --> 00:03:55.802 Maybe a year and a half ago 00:03:55.802 --> 00:03:58.271 we had to upgrade his wheelchair 00:03:58.605 --> 00:04:00.340 because he was getting a lot taller 00:04:00.506 --> 00:04:01.741 and a lot bigger. 00:04:05.178 --> 00:04:07.447 Okay, Dwight? 00:04:07.447 --> 00:04:09.449 We’re gonna go get in the car, babes 00:04:09.449 --> 00:04:11.517 okay? 00:04:12.619 --> 00:04:14.120 Oh, sorry. 00:04:14.454 --> 00:04:16.022 Oh, sorry. 00:04:16.356 --> 00:04:21.527 I had to find a welder and cut back the railings 00:04:22.228 --> 00:04:25.064 so that we now have space to maneuver. 00:04:25.064 --> 00:04:27.300 So, meant to be accessible, 00:04:27.300 --> 00:04:29.602 but it just didn’t work out 00:04:29.602 --> 00:04:31.638 the needs that we have. 00:04:32.272 --> 00:04:33.706 Okay 00:04:33.706 --> 00:04:35.241 and I’m gonna stop the camera here 00:04:35.241 --> 00:04:37.210 so that I can get him in. 00:05:15.148 --> 00:05:16.649 [Magued] We did it! 00:05:16.649 --> 00:05:17.984 High five. 00:05:17.984 --> 00:05:19.686 [Mia] Yeah. 00:05:22.488 --> 00:05:23.589 [Matthew] Okay, let's start 00:05:23.589 --> 00:05:25.692 on the main part, the body. 00:05:26.859 --> 00:05:29.529 [Magued] Health insurances just tend to want to pay for 00:05:29.629 --> 00:05:30.963 for just medical procedures, 00:05:30.963 --> 00:05:33.966 rather than pay for things like home modifications 00:05:34.367 --> 00:05:37.370 which are much cheaper on the long run. 00:05:38.538 --> 00:05:40.273 By the time we got a special chair 00:05:40.740 --> 00:05:43.309 she had already had advanced scoliosis 00:05:43.309 --> 00:05:45.578 and she ended up having a surgery. 00:05:46.746 --> 00:05:48.748 So which one was easier? 00:05:48.748 --> 00:05:54.454 To pay for a $1,500, $2,000 chair... 00:05:54.821 --> 00:06:01.060 or go through a $500,000 scoliosis surgery? 00:06:13.339 --> 00:06:14.874 [Claire] Alrighty. 00:06:15.375 --> 00:06:16.209 Ready? 00:06:17.176 --> 00:06:18.177 Let’s go in. 00:06:19.412 --> 00:06:19.979 Whoop! 00:06:21.814 --> 00:06:22.815 In you go. 00:06:24.117 --> 00:06:25.485 Close this door. 00:06:26.018 --> 00:06:27.186 Alright bud. 00:06:27.987 --> 00:06:29.722 And, we’re in. 00:06:30.757 --> 00:06:31.324 Okay. 00:06:33.326 --> 00:06:35.094 Close the door. 00:06:40.166 --> 00:06:42.101 And we’re going, 00:06:43.069 --> 00:06:44.303 we’re going, 00:06:45.438 --> 00:06:46.639 we’re going. 00:06:47.473 --> 00:06:49.175 Let’s make it through. 00:06:49.942 --> 00:06:52.912 Hang on, hang on, gosh. 00:06:54.847 --> 00:06:56.048 He’s a sweet boy. 00:06:56.048 --> 00:07:00.720 He likes touch and he enjoys cuddles. 00:07:02.755 --> 00:07:04.424 Good job! 00:07:04.891 --> 00:07:09.095 We have no idea how long we have with him. 00:07:09.395 --> 00:07:11.798 So you kind of really do 00:07:11.798 --> 00:07:13.399 try and make each day 00:07:13.399 --> 00:07:16.369 the best that it can be. 00:07:24.410 --> 00:07:28.548 He has more stuffies and squishmallows 00:07:28.548 --> 00:07:30.483 than they probably have in a store. 00:07:30.716 --> 00:07:33.186 So there’s squishmallows all over the place 00:07:33.186 --> 00:07:36.155 and I don’t really clear them up. 00:07:37.857 --> 00:07:39.459 He has seizures everyday 00:07:39.459 --> 00:07:43.729 so a lot of the stuffies kind of act as a cushion for him. 00:07:44.397 --> 00:07:48.167 It’s kind of a mess, but at the same time it works for us and for him. 00:07:50.169 --> 00:07:51.838 [Crystal] Momma and sissy gonna put you up 00:07:51.838 --> 00:07:53.172 One. 00:07:53.172 --> 00:07:54.874 Two. 00:07:54.874 --> 00:07:55.608 Wait, he’s gonna fall. 00:07:56.676 --> 00:08:01.380 When it comes to actually giving him a bath in the shower, 00:08:01.380 --> 00:08:02.748 in his shower chair, 00:08:02.782 --> 00:08:04.650 I have to do that when I have help. 00:08:05.751 --> 00:08:08.754 And it takes two people to pick him up and 00:08:08.754 --> 00:08:10.990 put him in the chair. 00:08:11.290 --> 00:08:14.260 It’s Sunday, shower day! 00:08:16.562 --> 00:08:21.133 Sundays, we usually do our shower in the bathroom 00:08:21.367 --> 00:08:23.503 and then the other nights, we, 00:08:23.503 --> 00:08:26.472 you know, I just bath him in his bed. 00:08:27.073 --> 00:08:30.042 Shower day! 00:08:32.345 --> 00:08:35.314 [Magued] We’re struggling with the bathroom situation a lot. 00:08:37.283 --> 00:08:40.520 It’s not a zero entry, walk-in shower. 00:08:40.520 --> 00:08:43.523 It has a big threshold. 00:08:45.925 --> 00:08:48.895 There are these shower systems where people can actually 00:08:49.395 --> 00:08:52.365 take a shower chair, and then they sit with it. 00:08:53.266 --> 00:08:56.769 Then you pull that out and then push it into the shower 00:08:56.769 --> 00:08:59.138 and they can take the shower there. 00:09:01.307 --> 00:09:04.277 We were never approved for that. 00:09:05.511 --> 00:09:07.747 Nobody would pay for it. 00:09:09.615 --> 00:09:10.816 I'm a physician. 00:09:10.816 --> 00:09:12.885 Both me and my wife are physicians 00:09:12.885 --> 00:09:15.154 but, even I feel like 00:09:15.254 --> 00:09:17.623 this is a little bit too much. 00:09:21.861 --> 00:09:24.830 It shouldn’t be that it takes us years and years and years 00:09:25.197 --> 00:09:29.035 and by, usually by the time we finally get something we actually need, 00:09:29.135 --> 00:09:32.104 it’s probably too late. 00:09:38.044 --> 00:09:39.612 [Claire] Up, up, up. 00:09:39.979 --> 00:09:44.350 We applied for what’s called a “self waiver.” 00:09:44.951 --> 00:09:46.886 You are allocated 00:09:46.886 --> 00:09:49.789 a portion of money every year 00:09:49.789 --> 00:09:51.324 to help with 00:09:51.324 --> 00:09:52.825 things that you need, 00:09:52.825 --> 00:09:54.694 specifically around your house. 00:09:54.694 --> 00:09:56.329 So for modifications. 00:09:57.430 --> 00:09:59.865 Gotta push this button the whole way. 00:10:02.902 --> 00:10:07.073 It takes six months to a year for anything to actually happen 00:10:07.106 --> 00:10:08.908 and then when you’ve had issues with it like we’ve had, 00:10:08.908 --> 00:10:10.610 you know, it takes even longer. 00:10:11.344 --> 00:10:14.914 It’s like you almost have to apply before you need it, 00:10:14.914 --> 00:10:17.750 but then they won’t allow you to apply for the thing 00:10:17.750 --> 00:10:19.485 because you don’t need it yet. 00:10:19.619 --> 00:10:22.588 Alright, Mommy is going to creep around you. 00:10:25.358 --> 00:10:27.393 Creep around you. 00:10:27.460 --> 00:10:30.129 Come to Mommy, one, two, three, up we go. 00:10:30.129 --> 00:10:31.030 Ooof. 00:10:31.163 --> 00:10:32.098 Okay. 00:10:32.798 --> 00:10:34.000 And we’re going in. 00:10:35.034 --> 00:10:36.135 In we go. 00:10:37.003 --> 00:10:39.071 [ Claire kissing Jacob ] 00:10:40.539 --> 00:10:43.042 [Magued] Who's your favorite princess, Mia? 00:10:43.042 --> 00:10:45.611 [Mia] Belle. [Magued] Belle? 00:10:45.611 --> 00:10:52.051 [Ella] And the Belle princess dress is too small for her. 00:10:52.051 --> 00:10:53.586 [Magued] Mm, I see. 00:10:53.586 --> 00:10:56.589 [Ella] And that's why they're only for me. 00:10:59.392 --> 00:11:02.361 [Magued] Here we have Mia’s 00:11:04.497 --> 00:11:05.631 bookshelf. 00:11:05.631 --> 00:11:08.634 But it also has her 00:11:09.402 --> 00:11:10.736 medical devices. 00:11:11.170 --> 00:11:14.140 So, this is her cough assist device 00:11:14.140 --> 00:11:17.209 and this is her suction device. 00:11:17.209 --> 00:11:21.247 Then we have the nebulizer, and then all these are the electrical connection 00:11:21.247 --> 00:11:26.652 to all of these devices, as well as the hospital bed. 00:11:26.652 --> 00:11:29.155 In this bookshelf you also have 00:11:29.455 --> 00:11:31.524 some wound care supplies. 00:11:31.524 --> 00:11:32.658 She used to have a wound. 00:11:32.658 --> 00:11:34.794 Here in her closet, 00:11:35.094 --> 00:11:40.099 we keep some of her diapers and pads. 00:11:40.599 --> 00:11:43.636 In this closet here, we have 00:11:43.636 --> 00:11:43.669 diapers and pads, 00:11:44.670 --> 00:11:47.606 a lot of more of her diapers and some wound care supplies. 00:11:48.574 --> 00:11:50.443 [Crystal] Our children, 00:11:50.443 --> 00:11:56.282 they have lots of equipment, lots of supplies, 00:11:56.282 --> 00:11:59.652 from standers to activity chairs 00:11:59.652 --> 00:12:02.455 to gait trainers, wheelchairs. 00:12:02.455 --> 00:12:06.759 Really large, bulky, supplies that we get. 00:12:06.759 --> 00:12:09.361 Then you have the diapers and the formula 00:12:09.361 --> 00:12:12.364 and the syringes and the feeding bags. 00:12:12.798 --> 00:12:15.668 Trying to find a place to just store it all 00:12:15.668 --> 00:12:17.136 can be overwhelming. 00:12:18.104 --> 00:12:21.107 I know families who live in apartments 00:12:21.107 --> 00:12:23.743 who have a child with medical complexity. 00:12:23.743 --> 00:12:26.312 And if you don't have a really, really large home, 00:12:26.312 --> 00:12:28.380 just an average size home, 00:12:28.380 --> 00:12:31.417 it’s often a big challenge. 00:12:38.090 --> 00:12:40.693 Hey! 00:12:40.693 --> 00:12:41.927 Hi! 00:12:42.862 --> 00:12:47.333 A lot of us get really creative and, and we make it work. 00:12:47.466 --> 00:12:50.436 Just making the best of it. 00:12:50.803 --> 00:12:55.307 You just have to find ways to adapt and adjust. 00:12:56.675 --> 00:12:59.678 [Claire] The typical person who doesn't live this life 00:12:59.779 --> 00:13:02.748 just really has no idea how much it entails 00:13:06.418 --> 00:13:09.388 or just how much we have to advocate and fight. 00:13:10.389 --> 00:13:11.757 [Magued] Our children 00:13:11.757 --> 00:13:14.760 they make it our home in a sense 00:13:14.760 --> 00:13:17.363 that it’s their home too. 00:13:17.463 --> 00:13:19.698 Mia, she also has the right 00:13:19.698 --> 00:13:22.668 to have her home as well 00:13:22.668 --> 00:13:25.638 where she’s comfortable, where she’s safe 00:13:25.704 --> 00:13:31.377 where she enjoys herself, where she can live her life to the fullest. 00:13:31.377 --> 00:13:35.548 If home is not gonna provide that for her, I’m not sure what will.