tag:blogger.com,1999:blog-23342047142838654022024-03-14T01:40:06.934-05:00baby by oakleyjust another mommy blog...Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.comBlogger448125tag:blogger.com,1999:blog-2334204714283865402.post-80150149463280124842019-06-14T16:04:00.000-05:002019-06-14T16:04:11.370-05:00Vacation :: Gulf Shores, ALResurrecting the blog to post a billion vacation photos. I want them to live forever - we had a great time on our first official family vacation to Gulf Shores, Alabama at the end of May.<br />
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We were gone 8 days, spent over 40 hours in the car and drove over 2,000 miles before it was all said and done. Sounds amazing with three small children, doesn't it?! The kids did surprisingly well and handled the long travel days like rockstars.<br />
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We had perfect weather, ate delicious food, enjoyed cocktails on the beach and soaked it all in. Our <a href="https://www.airbnb.com/rooms/878626?source_impression_id=p3_1560545763_akrRHHFwljLaeIzp" target="_blank">Airbnb condo</a> was the perfect amount of space for us and we've already talked about going back for another visit.<br />
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The beach was so clean and the sand was so soft; the girls swam in the ocean and Baker would have joined them if we let him dive head first into the water. Not too shabby, if you ask me!<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-22167727282112893952019-02-04T21:19:00.001-06:002019-02-04T21:19:13.001-06:00Leighton :: Four Years OldI'm so far behind in getting this post up! Better late than never though, right?! I owe all the kids updates for the blog so we'll start here with our LL Girl.<br />
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Happy {belated!!!} 4th birthday to our Leighton Lynn! It's crazy to me that she's already four years old. Why is everyone getting so old and big?! Ugh, it's not fair! I want my tiny babies back!<br />
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It's no secret around here that Leighton has a big and strong personality, a characteristic that continues to develop as she grows up. She's determined and as stubborn as they come. She'll pick out her outfit in the morning (a blue dress with blue pants or alternating heart patterns are some of my favorite ensembles...), insist on dressing herself and declare everything matches even if it doesn't. She barely lets me brush her hair and is in constant need of a trim thanks to a wonky cowlick in the back that grows faster than the rest of the hairs on her head.<br />
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She may be loud and aggressive but she's also sensitive and kind. She gets upset if she thinks people are laughing <i>at</i> her as opposed to <i>with</i> her or if you call her "silly" when she wasn't trying to be silly. She stops running through the room to give Baker a hug and a kiss and gently touch his cheek and tell him he's cute. If Gracyn's upset, Leighton will follow her upstairs to check on her and declare, "I'm only here to HELP you!" She loves to wrestle with Dad and play house with her baby dolls. And every once in a while, she'll come up to give me a random hug and tell me she loves me.<br />
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I love you too, sweet girl.<br />
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Leighton's favorite things include chocolate milk, dessert, annoying shows on Netflix (I'm looking at you, <i>Bo on the Go </i>and <i>Mother Goose Club</i>..), playing Barbies and running off to play with friends. She eats more yogurt and string cheese than anyone I know and at four years old, she <i>still</i> does not sleep through the night. It's fine....<br />
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No matter how many times we tell her she's free to use the restroom at her own free will, she's up at least once a night to yell about needing to go potty or to ask important questions like if she can take swimming lessons (maybe) or go to a movie theater (sure, but GTFTS first....). We've tried bribes and threatened her privileges but nothing really seems to stick. Gracyn has been sleeping in the room with her which helps a teeny tiny bit but she's still up at night more often than not. My body has adjusted to being up all night between all of the children but I wouldn't mind just a <i>little </i>more sleep mmk, kids?!<br />
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Happy birthday, sweet girl. Our house is loud and full of laughter because of you. You may make my nights shorter but my days are so much brighter. For that, I love you.<br />
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I think I missed doing this last year, but here's her interview! I've tried to ask the girls the same questions each year and record their answers. So fun to see how they change over the years!<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-53203829537039149362018-12-02T21:07:00.001-06:002018-12-02T21:07:15.459-06:00Fall 2018Nothing like a novel of a blogpost to recap an entire <i>season</i> of life. 2019 resolution - get back to blogging. Although, I think I say that every time I type up a new post, but it's good to have goals I guess. Our fall has been busy with regular life stuff, nothing too out of the ordinary for us and I'm definitely thankful for that!<br />
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<b><i>September</i></b><br />
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This month started with my <a href="https://babybyoakley.blogspot.com/2018/09/2018-dsdn-rockin-mom-retreat.html" target="_blank">Mom's Retreat</a> to Phoenix. It was a quick trip but wonderful nonetheless. Next year's retreat is in Nashville and I'm already planning and scheming to get myself there - for the entire thing this time! :)<br />
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Gracyn lost her first tooth and refused to let the Tooth Fairy come visit. She held onto that tooth for about 3 weeks until her 2nd tooth fell out. Only then was the Tooth Fairy allowed to come collect the goods - but only if she did NOT come into the house. Gracyn put her teeth in ring box on the front porch and wrote her a note. She closed the blinds and locked the door and went out to check things out the next morning. It was such a weird thing but also hilarious. She got her money and then decided to <i>be</i> the Tooth Fairy for Halloween. That girl cracks me up.<br />
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Other September things - college football watch parties, Baker started full-on playing with the girls (Leighton might be his favorite person ever...), trips to Target and my 33rd birthday!<br />
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<b><i>October</i></b><br />
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We did Fall things like visit pumpkin patches and plant mums. The weather was perfect so we spent a lot of time on the weekends outside playing with friends. Family and friends came to town to help us celebrate Baker and his Chromies at the <a href="https://babybyoakley.blogspot.com/2018/11/step-up-2018.html" target="_blank">Step Up Walk</a>. We geared up for Halloween - the Tooth Fairy (of course), a "yellow Princess" and a baby cow. It was a cool night but we managed to go Trick-or-Treating and get a bunch of candy.<br />
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<b><i>November</i></b><br />
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Annual family photos (still swooning over them...), flu shots for everyone and we headed to Tulsa for Thanksgiving. Tulsa has an amazing new park called <a href="https://www.gatheringplace.org/" target="_blank">Gathering Place</a> and we spent a few hours exploring one day. If you're in the area, check it out for sure!<br />
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Our favorite elf came back right after Thanksgiving and although we technically had the tree up before Turkey Day, we finished decorating the last week of November. It's the best time of the year - bring on all of holiday festivities! </div>
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-62881496528977226152018-11-03T23:25:00.001-05:002018-11-03T23:25:23.041-05:00Step Up | 2018Welp, October came and went, huh?! I can't believe the entire month passed us by and I didn't log a single blog post. October is, after all, <a href="https://babybyoakley.blogspot.com/2017/10/october-down-syndrome-awareness-month.html" target="_blank">Down Syndrome Awareness Month</a>. On one hand, I feel guilty for not having posts ready to share as a way to advocate for Baker and raise awareness. It's my duty as his mom to do so, right?!<br />
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On the other hand, we are busy l i v i n g l i f e. And that life, thanks to work and everything that comes along with three kids, is busy so the old blog gets neglected. Don't worry, though. I'm still a serial poster over on <a href="https://www.instagram.com/babybyoakley/" target="_blank">Instagram</a> and <a href="https://www.facebook.com/babybyoakley/" target="_blank">Facebook</a> so follow along there if you want to see just how <i>normal</i> our life really is. I'm always up for answering questions so be sure to ask if you want to know something but hopefully I'm doing him justice and advocating for him all day long by making sure he's treated like everybody else in our home. Making sure he knows and everyone around us knows that he belongs. Baker has Down syndrome but he's still a baby and we're still a regular family. His sisters still like to hold him and smother him. I still force them all to have professional photos taken every fall. We still meet up with friends to have playdates and have fun!<br />
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October flew by for sure but we did get our act together enough to celebrate Baker and his Chromies at the 2018 Step Up Walk! This was the second walk for #TeamHeartBaker. The weather was amazing compared to the blazing heat from <a href="https://babybyoakley.blogspot.com/2017/09/step-up-2017.html" target="_blank">last year</a> and we had a great group of family and friends who came out to join us and help raise some money for the <a href="https://www.kcdsg.org/" target="_blank">Down Syndrome Guild of Greater Kansas City</a>. It's pretty incredible to see 10,000 people gathering at an event to honor these amazing individuals who all just happen to have Down syndrome. We're lucky to live in a community that has so many valuable resources and a network of support.<br />
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We had people from Kansas, South Dakota, Minnesota, Oklahoma and Nebraska in attendance. Some of our dear neighbors were even celebrating from the beach while on vacation.<br />
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Our support system is unreal and we couldn't be more grateful.<br />
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Baker says "THANK YOU!" and we'll see you next year! :)<br />
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And a comparison picture from 2017 & 2018. My babies are getting so big!<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-6804195538934864652018-09-12T09:11:00.000-05:002018-09-12T09:11:11.392-05:002018 DSDN Rockin' Mom RetreatWhen we first received <a href="https://babybyoakley.blogspot.com/2017/05/baker-27-week-update.html" target="_blank">Baker's Down syndrome diagnosis</a>, I hadn't knowingly met a single person who had experienced the same thing. I hadn't met a person with Down syndrome or knew anyone who had someone with Down syndrome in their family. I don't remember seeing kids with Ds in school or in stores or on TV. Maybe I had blinders on or it just wasn't on my radar. We had friends and family supporting us but as far as I was concerned, we were alone in experiencing this first hand.<br />
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And as you can imagine, that's a pretty f'ing scary place to be. It felt like our world was caving in but after taking a day or two to process the initial news, I needed to do something. I needed to learn what this meant for Baker and our family. I needed to see what life would be like once Baker was born.<br />
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Social media is so strange but it can also be really wonderful at times, people can connect easily and hashtags are searchable so that's where I turned. I had been added to a local Facebook group the week before by a friend-of-a-friend after we learned of Baker's heart. The group was for heart moms, women who all had littles with some kind of congenital heart defect. I posted an introduction, explaining what type of defect Baker had and the fact that he'd most likely be born with Down syndrome.<br />
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Within an hour, I had received two messages from moms in that heart group who knew of <i>other</i> moms who had kiddos with Down syndrome. Those babies had the same CHD as Baker and each one offered to get me in touch with them.<br />
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Within a day, I was messaging back and forth with Blair who lives in Iowa. Her son was born the previous year and had recently recovered from open heart surgery. Her story was <i>my</i> story and all of a sudden, we weren't alone.<br />
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Not even close.<br />
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Blair introduced me to the <a href="https://www.dsdiagnosisnetwork.org/" target="_blank">Down Syndrome Diagnosis Network</a> (DSDN) whose mission is to connect and support families who have received a Down syndrome diagnosis. They have Facebook support groups for anything you need related to Down syndrome. There's a heart group and an infantile spasms group. There's an All Star Mom group filled with veteran mamas who are all raising kids with Down syndrome and have most likely seen it all. Most importantly, there are smaller birth groups divided out by year so I'm able to connect with over 300 other moms who have babies with Down syndrome that are all Baker's age.<br />
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These are all places I can go to ask questions, voice concerns, laugh and cry, because they get it. They understand what it's like to feel like your world is crashing down around you, and then getting the chance to come up for air and see the beauty in the diagnosis. They get the feeling of wanting to punch someone in the face when they tell you, yet again, that you're "blessed" and "lucky," They understand apologizing later because maybe - just maybe - they were right. They understand the stares and awkward questions and incorrect or outdated terminology and appreciate the chance to educate and advocate because these kids deserve it.<br />
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This past weekend, I traveled to Phoenix with 8 other moms from Kansas City to attend DSDN's annual Rockin' Mom Retreat. It was a chance to finally meet all of my online friends in real life and spend the weekend relaxing and taking care of ourselves. To be in a room with 400+ other women who share your story is a pretty powerful thing. Down syndrome is what we all have in common. It brought us all together and paved the way for friendships to form that will last a lifetime.<br />
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Unfortunately, <a href="https://www.instagram.com/p/Bnemfzpnv3P/?taken-by=babybyoakley" target="_blank">my weekend was cut short</a> after Justin called me and told me he was taking Baker to the emergency room. I flew home a day early to be with my family but not before getting the chance to share mimosas with the girls, log some hours in the lazy river, drink fancy resort cocktails, take questionable uber rides to In-N-Out and buy all the tallboys at the convenience store because fancy resort cocktails are hella expensive.<br />
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I got the chance to eat a hot breakfast that I didn't have to make and drink a hot cup of coffee all in one sitting. I was able to shut my eyes at the pool and not worry about anyone drowning on my watch. I read, like, 4 magazines. It was amazing!<br />
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I also got the chance to thank other women for sharing their stories, for sharing their children. Because of them I was able to scroll Instagram and search for those hashtags and they showed me life with Baker would be okay. It's hard at times, sure, but we're okay.<br />
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We had a running joke at the retreat while we were sitting by the pool, drinking and chatting under the palm trees as one does when they're <i>retreating</i>... *This* was Down syndrome. *This* is what you get. It may be scary at first, and you will have to process some really heavy feelings in the beginning but what you get after all of that is truly amazing. You get friendship and support, picked up when you feel sad and others to help you celebrate the happy. People who become your confidants. You get to be surrounded by hope and you get to share joy and that's pretty special.<br />
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Thank you, DSDN for putting on an amazing weekend. I hope to enjoy the entire thing next year... ;) This organization is changing lives and the way the world views Down syndrome and my family is honored to be a part of it all.Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-48265422787193812002018-08-21T21:10:00.000-05:002018-08-21T21:10:08.001-05:00Baker's First Birthday PartyFinally getting around to posting some photos from Baker's little birthday party on the old, neglected blog. I shared some of these on <a href="http://instagram.com/babybyoakley" target="_blank">Instagram</a>, too. We hosted some family for the day and it turned out to be a pretty good afternoon celebrating our superhero!<br />
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I decided last minute that we needed a "theme" so the superhero trend was a no brainer. We had everyone representing: Thor, The Justice League, Wonder Woman, Captain America and our very own Superman.<br />
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I was so impressed with Baker, he was totally into his gifts and all of the wrapping paper that came with them. He had plenty of helpers and sat back to take it all in.</div>
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He's still working on self feeding but didn't have any issues getting after that cake. Not sure how much he ate but he managed to make quite the mess!<br />
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We had the best time celebrating you, baby boy! We love you big time.Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-51874059515903755982018-08-08T22:52:00.001-05:002018-08-08T22:52:40.148-05:00Baker :: Twelve Months OldI have every intention of blogging more than once a month but this thing called life keeps getting in the way! We've had a BIG month over here... BAKER IS ONE!<br />
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Can you believe it?! I cannot. Hands down, fastest year of my life even with all we had going on with this boy. He kept us busy and the days/weeks/months seemed to fly by. At the same time, he just didn't seem like a one-year-old to me. I know it's because he's not doing everything typical kids his age are doing - he seemed so babyish to me still - but the calendar doesn't lie. He's officially a year old.<br />
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Shortly after he turned <a href="https://babybyoakley.blogspot.com/2018/07/baker-eleven-months-old.html" target="_blank">11 months old</a>, he started taking Vigabatrin to help control his infantile spasms. After a week or so on that medication, we stopped visibly seeing spasms. It was wonderful. He quickly came back to us and started smiling all day long, interacting with us on another level, actually PLAYING with toys. He was a different kid! That gave us hope that this medication was working but I couldn't breath easy until the EEG came back clean. He had an EEG scheduled for July 27th.<br />
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On July 23rd, I took Baker {and the girls} to his first appointment at the children's sleep clinic. It's recommended that kids with Down syndrome have a sleep study done before the age of 4. They're at a greater risk for sleep apnea and obstructed airways and while we were inpatient for infantile spasms, pulmonology rounded on him and recommended we start this process sooner rather than later. I figured it'd be a quick visit and that maybe we'd get a sleep study scheduled for 6 months down the road.<br />
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Silly me....<br />
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Instead, the pulmonologist questioned his noisy breathing (he was congested like always) and the mild retractions she was seeing (definitely not his normal). His oxygen levels were also low - hovering in the high 80s when he's normally in the high 90s. She was concerned he was coming down with an infection or pneumonia and recommended we make pitstop at his pediatrician's office on the way home or head to urgent care. I have no desire to try and explain Baker to yet another random doctor so I called our pediatrician.<br />
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She was out of town (BECAUSE OF COURSE SHE IS) but we could come in and see one of her partners in the practice.<br />
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The next two hours went something like this....<br />
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<i><b>Stand-in Pediatrician</b>: Why did you come here? You should have gone to the Children's Hospital</i><br />
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<i><b>Me</b>: I was just at the Children's Hospital, they told me to come here.</i><br />
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<i><b>Stand-in Pediatrician:</b> You should have gone to the ER.</i><br />
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<i><b>Me</b>: Welp, here I am, can you help me?</i><br />
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<i><b>Stand-in Pediatrician</b>: I don't know, we're not an ER.</i><br />
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<i><b>Me</b>: Perfect.</i><br />
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Meanwhile....<br />
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<i><b>Leighton and Gracyn: </b>Mommy, look! Mom! Mom! Mooooooooooom! Stop, sissy! Stoooooop! I'm hungry! I'm starving! Ugh I just wanna go hommmmmmmme!</i><br />
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<i><b>Me</b>: *trying not to sweat and texting Justin begging for help*</i><br />
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Justin arrives to save the day and takes the girls to the waiting room. By this time the stand-in pediatrician has decided to give Baker a breathing treatment to see if that helps his breathing and oxygen levels.<br />
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It doesn't. So he tries a second breathing treatment. I send Justin and the girls to go pick up our grocery order and head home, assuring him we'd be close behind.<br />
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Silly me....<br />
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<i><b>Stand-in Pediatrician: </b>The breathing treatments aren't working.</i><br />
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<i><b>Me:</b> Ok...</i><br />
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<i><b>Stand-in Pediatrician:</b> Let's put some oxygen on him and see how he does. I'm going to make some calls.</i><br />
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<i><b>Me: </b>*trying not to sweat and frantically texting Justin that HE'S MAKING CALLS OMG WE'RE GOING TO BE SENT TO THE HOSPITAL BECAUSE OF COURSE WE ARE*</i><br />
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<i><b>Stand-in Pediatrician: </b>Yep, he's gotta go to the hospital.</i><br />
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<i><b>Me</b>: I JUST CAME FROM THE HOSPITAL.</i><br />
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<i><b>Stand-in Pediatrician</b>: He's gotta go by ambulance.</i><br />
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<i><b>Me</b>: BUT I LITERALLY JUST. CAME. FROM. THE. HOSPITAL.</i><br />
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<i><b>Stand-in Pediatrician:</b> Sorry.</i><br />
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<i><b>Me</b>: *trying not to cry and texting Justin to pack a bag....*</i><br />
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What was supposed to be a quick appointment turned into his very first ambulance ride and a 4-day hospital stay thanks to these low oxygen levels. His viral panel was negative but we do think he had some sort of upper respiratory infection. And because of their anatomy, kids with Down syndrome are more likely to require oxygen support if and when they get sick. The common cold may be no big deal for the girls but for Baker, it takes a greater toll. It also didn't help that he'd just finished a strong round of steroids and was further immunosuppressed.<br />
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By the 4th day, we was off oxygen while awake but still needing it during the night. Our new pulmonologist pushed for us to be able to go home with oxygen so we could monitor Baker at home and use it as we see fit. This will hopefully also keep us <i>out</i> of the hospital should he get sick again, since we'll already have the supplies we need. We were discharged just in time to head downstairs for our previously scheduled EEG before heading home.<br />
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A few days after coming home, Baker started sitting up unassisted! Like, actually sitting on his own! It's amazing. He's been working so hard and up until a week or so ago was still pretty unsteady. It clicked seemingly overnight and we couldn't be more excited.<br />
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Baker also graduated from his helmet last week! He wore it for four months and it made a huge difference. It was a hot and sweaty summer with that bad boy so we're glad to put it behind us! Perfect timing, too, because we found out Baker needs glasses! This was his 2nd eye appointment that showed astigmatism and farsightedness so we'll see if glasses help with his tracking and focusing on things up close.<br />
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And the best news of all... his EEG results came in the other day and it showed a vast improvement. Baker's infantile spasms and seizures are gone. It was a huge weight lifted off our shoulders. The EEG still showed some abnormalities, which we expected, but the other <i>bad</i> stuff was gone. He'll continue taking Vigabatrin for the next couple of months. At that point, we'll be able to hopefully wean or switch to another maintenance drug to keep the seizures at bay.<br />
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I've told several people that infantile spasms has, by far, been the hardest diagnosis to cope with. The treatment is hard (and not guaranteed to work) and we don't know how this will affect him long term but if the progress we've seen these last few weeks is any indication of Baker's future, he's going to be just fine. We're excited to hopefully close this chapter and focus on getting back on track with his therapy and development.<br />
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Whew. I'm exhausted just recapping this last month!<br />
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You're totally worth it, cute boy. Cheers to ONE. May your next year be filled even more love and happiness, a few less hospital stays and zero ambulance rides.<br />
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12 Months of Baker. I cannot handle this!<br />
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And because I like to make myself cry, all three of my babies at one year...<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-1652322695448817132018-07-15T08:00:00.000-05:002018-07-15T08:00:18.050-05:00Baker :: Eleven Months OldE L E V E N M O N T H S<br />
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He'll be ONE in a few weeks and like always, I'm left wondering how this is even possible. It went faster than ever, even the moments where we were barely hanging on by a thread. We've had a lot going on this past year and this last month was no different.<br />
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<a href="https://babybyoakley.blogspot.com/2018/06/diagnosis-infantile-spasms.html" target="_blank">Infantile spasms</a> have consumed our days (and nights) as Baker continues to receive treatment to get rid of the seizures. He has 3 ACTH injections left and started Vigabatrin, an anti-seizure medication last week. Once he's up to the full dose of the new medication, he'll have another EEG to see if it's working. While it does seem like the spasms have drastically decreased since starting the vigabatrin, I'm hesitant to say for sure they're gone. We need the EEG to tell us that; infantile spasms cause hypsarrythmia which are abnormal, chaotic brain waves. Once the EEG comes back clean, we can breath a major sigh of relief. Until then, I'm a little on edge and possibly going crazy analyzing his every move wondering if a normal reflex is a seizure instead.<br />
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ACTH was rough and was made worse by the fact that it wasn't even working. A few days after he started, Justin and I both agreed we felt like the spasms had stopped. It was successful. Then, Baker had a really bad day right before the 4th of July, almost 2 weeks after starting ACTH. It was like all of this medicine had finally caught up to his little body and he couldn't handle it. He was inconsolable, agitated and soooooo incredibly tired but his body wouldn't let him rest. He cried for basically 13 hour straight, it was awful. That was also the day we started seeing spasms again. By the end of the day, the only thing I could do was cry right along with him. It was a very helpless, hopeless feeling.<br />
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He had a repeat EEG that confirmed the ACTH was not really helping clear up the hypsarrythmia which led to starting the vigabatrin. We went to Sioux Falls for the July 4th holiday - Baker had a few rough days there and we started to wean the ACTH that Friday. Slowly but surely, we started to get our boy back.<br />
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These smiles - I can't even tell you how good it feels to see these smiles.<br />
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You can tell he's feeling better! These last few days, he's also been more active - kicking his legs and batting his arms. He also seems to have better trunk control and more willingness to put weight on his arms during tummy time. All reasons I'm hopeful the vigabatrin is working.<br />
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He was sitting so well during these pictures! The ottoman was behind him for support but he did an amazing job shifting his weight and catching himself before falling forward. We're starting and intense "sitting bootcamp" this week to see if we can get him sitting by his first birthday. Ha! It'll be close but I think he can do it!<br />
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Another struggle this month (and really, just since starting ACTH) has been sleep. The poor kid hasn't napped well in weeks and his nighttime sleep is all jacked up - no paci, only bottles; no rocking, only bouncing; wide-awake parties from 1-3 am! I really hope this gets back to normal soon!<br />
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He's also made some progress with the helmet this month. The back of his head has rounded out nicely but he still has some asymmetry on the right back right side so our focus has been trying to get that area to "pop" out. A few more weeks but hopefully the end is near!<br />
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Oh, Baker. You are one tough cookie and seriously never cease to amaze me. You've been a trooper through all of this and we're so proud of you.<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-12109455529105635972018-06-29T07:54:00.001-05:002018-06-29T07:54:26.956-05:00Diagnosis :: Infantile SpasmsOur Baker boy. Keeping us on our toes from <a href="https://babybyoakley.blogspot.com/2017/08/its-boy.html" target="_blank">day one</a>. Well, <a href="https://babybyoakley.blogspot.com/2017/05/baker-heart-warrior.html" target="_blank"><i>before</i> day one</a>, actually. From the moment we learned about Baker's existence, life has become a whirlwind of sorts and we've come to learn how to roll with the punches. The last few weeks have been no exception.<br />
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Baker has added a few more specialists to his medical binder and doctor appointments to his calendar along with a diagnosis for <a href="https://www.ninds.nih.gov/disorders/all-disorders/infantile-spasms-information-page" target="_blank">infantile spasms</a>.</div>
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Infantile spasms are certain types of seizures that appear in babies, usually showing up around 4-8 months of age. IS is rare (only 1,200 or so cases are diagnosed a year), hard to recognize and is a very serious condition. The longer it goes undiagnosed and untreated, the worse a child may do developmentally.</div>
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For someone like Baker, who is already delayed when it comes to gross motor skills and could potentially face his own struggles when it comes to learning and cognitive abilities, the thought of him having damaging seizures on top of everything else was (and is!) scary. He's also been through so much already in his short little life so to add another thing that's so major seems a tad unfair. I mean, can't the kid catch a break?!</div>
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But. Roll with the punches, remember?</div>
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The way we noticed or recognized Baker's infantile spasms was kind of by mistake. We weren't <i>looking</i> for anything until I saw a video in my Facebook timeline. It was the week before Memorial Day, and another mom in one of my Facebook groups had shared a video of a baby who had been diagnosed with infantile spasms; she was asking questions about IS and her own child, who also happened to have Down syndrome. I watched the clip (over and over and over again....) and kind of thought Baker was exhibiting some of the same movements, mainly the dropping of his head that he'd do every once in awhile. I showed Justin and he agreed that it looked similar.</div>
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I always figured it was due to his low tone and learning how to hold his head up but every so often, Baker's head would drop down for a second almost like he'd gotten tired of holding it up. It'd come down and then he'd bring it right back up. The same movement would happen 3 or 4 times in a row.<br />
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We watched him over the holiday weekend and then sent a text to my brother - he's a pediatrician - and asked if he'd had much experience with infantile spasms. I explained what we'd been seeing and sent him a video that I'd recorded of Baker. He didn't necessarily think IS but agreed we should keep an eye on him and said to definitely follow up with his pediatrician if we started noticing his arms and/or legs making peculiar movements along with his head.<br />
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That was June 4th and sure enough, on June 6th, I noticed for what I feel was the first time Baker's shoulders and arms jerking up towards his ears while his head dipped. I quickly laid him down on the couch and grabbed my phone to record it. Again, the same movements happened 3 or 4 times in a row.<br />
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Over the next week or so, I tried grabbing as many recordings as I could. I ran by our pediatrician's office one day to ask her some questions and show her the videos. She wasn't 100% convinced it was IS either but agreed it'd be a good idea to follow up with neurology so she made the referral.<br />
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The children's hospital called last Wednesday morning asking if we could come down for an EEG that afternoon. The nice gal gave me a heads up that they tend to admit you from there should they find anything abnormal. By this point, I was pretty sure they'd find <i>something</i> so we packed a little overnight bag <i>juuuuuust</i> in case.<br />
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Baker hated the EEG and all of the probes being glued to his head but by the end of the test, we were able to record some of the movements we'd been seeing at home. He was admitted and spent the next 18 hours hooked up to the darn thing.<br />
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We met with a whole group of doctors the next morning and the neurologist officially diagnosed him with <a href="https://www.healthychildren.org/English/health-issues/conditions/head-neck-nervous-system/Pages/Infantile-Spasms-What-Parents-Need-to-Know.aspx" target="_blank">infantile spasms</a>. They couldn't tell us how long he'd been having the seizures or how quickly they were progressing but we're thankful everyone moved quickly to get him seen once we started having concerns.<br />
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Baker had a long day last Thursday consisting of lab draws, a chest x-ray, heart echo and MRI - all of which had to be completed before he could get the <a href="https://www.nytimes.com/2012/12/30/business/questcor-finds-profit-for-acthar-drug-at-28000-a-vial.html" target="_blank">expensive medicine</a> (and by <i>expensive</i>, I mean freaking outrageously <a href="https://gizmodo.com/the-price-of-this-drug-went-up-100-000-percent-since-20-1825819643" target="_blank"><i>hella-expensive</i></a>...) he needed to treat the IS. The nurses taught us how to give injections and for the next four weeks, Baker will get daily shots to hopefully fend off the seizures. We hope they're gone at the end of this treatment but there is always a possibility he'll need other medication to help keep them at bay. As he grows, we'll have to continue to watch him as he's now at a higher risk for developing other seizure disorders.<br />
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He's been doing well since coming home from the hospital. The shots are zero fun but we're already noticing a significant decrease in the number of spasms we're noticing. I may go as far and say we haven't seen one in a couple of days... YAY! He's been irritable and really hungry but we're still getting some smiles out of him.<br />
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He gets a repeat EEG next Tuesday followed by an appointment with the pediatric neurologist, the hope there is that they see a significant change and the abnormal brain activity that was present before has "calmed down" a bit.<br />
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I want nothing more than for Baker to be healthy, we've been fortunate so far in the fact that he hasn't faced any major illnesses, but the kid has some pretty significant diagnoses/conditions under his belt.<br />
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He's a trooper, a fighter, a warrior.<br />
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All things we knew about him and it's something he just keeps proving over and over again each time an obstacle gets in his way. Everyone always says you're not given more than you can handle but I'd personally be ok if this was the last "thing" for a bit, you know? I'm sure other things will come up (they always do!) but for now, I want these spasms gone so he can get back on track and continue to grow and thrive developmentally. He's an amazing little boy and we love him so incredibly much.</div>
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<span style="-webkit-font-smoothing: antialiased; background-color: #bd081c; background-image: url(data:image/svg+xml; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 11px; font-stretch: normal; font-style: normal; font-variant-caps: normal; font-weight: bold; left: 42px; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 378px; width: auto; z-index: 8675309;">Save</span><span style="-webkit-font-smoothing: antialiased; background-color: #bd081c; background-image: url(data:image/svg+xml; background-position: 3px 50%; background-repeat: no-repeat no-repeat; background-size: 14px 14px; border-bottom-left-radius: 2px; border-bottom-right-radius: 2px; border-top-left-radius: 2px; border-top-right-radius: 2px; border: none; color: white; cursor: pointer; display: none; font-family: "Helvetica Neue", Helvetica, sans-serif; font-size: 11px; font-stretch: normal; font-style: normal; font-variant-caps: normal; font-weight: bold; left: 42px; line-height: 20px; opacity: 1; padding: 0px 4px 0px 0px; position: absolute; text-align: center; text-indent: 20px; top: 378px; width: auto; z-index: 8675309;">Save</span>Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-40772317387260445482018-06-12T06:00:00.000-05:002018-06-12T06:00:02.302-05:00Baker :: Ten Months OldTime to recap another month with our boy! HOW IS HE ALMOST ONE!?<br />
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I'm not sure how much he weighs or how tall he is - I think we've gone a full month without any medical appointments! He has bi-weekly checks for his helmet but they don't take height/weight at that office. If I had to guess, I'd say he's close to 18 pounds. I still feel like he's a shorty and hasn't really grown much length-wise this month.<br />
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His head continues to round out nicely! I'm <i>reallllllly</i> hoping we can ditch the helmet sooner rather than later but he's not growing entirely too fast so I think we're stuck with it for a few more months. That thing hits me in the face on a daily basis and the poor kid gets so sweaty.<br />
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I'd say Baker's biggest accomplishment this month was really getting the hang of drinking out of a straw. This is something I don't think I even thought about with the girls because, like a lot of things, they just seemed to "get it" from the beginning. Kids with Down syndrome have low muscle tone and that can include weak facial and oral muscles which means getting them to close their lips around something like a straw can be a real struggle.<br />
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Baker has always been a great eater. He breastfed until 8.5 months and is able to easily eat from a bottle. He hasn't had any issues with eating baby food from a spoon but the first time we offered him a <a href="http://shopstyle.it/l/Mcsi" target="_blank">straw cup</a>, he wasn't really sure what to do with it. He'd chew on it and kind of move it around with his tongue. I offered some water to him the other day and he actually closed his lips around the straw, took a drink and then swallowed the water! It seems silly but we're totally celebrating this little milestone and we're so thankful he doesn't struggle with eating and drinking.<br />
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Another big accomplishment for mom?! Finally caught a little smile on camera. YES! He still likes chewing on those fingers of his. No teeth in sight but that thumb is a favorite! He's equally excited about his toes.<br />
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Mid roll, of course. Still slow-going with the tummy time but he's slowly tolerating longer periods of time on his tummy. And actually lifting his head to look around versus just lying there and falling asleep!<br />
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He may or may not need another haircut and he loves, loves, loves his <a href="http://shopstyle.it/l/McwT" target="_blank">Oball</a> and <a href="http://shopstyle.it/l/Mcw9" target="_blank">bolli ball</a>. He will shake those things around and they're really some of the only toys he cares about.<br />
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He's been swimming at the neighborhood pool a couple of times and definitely enjoys the water. He does NOT love getting splashed in the face when a big sister jumps in nearby, though. </div>
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Baker is also officially sleeping through the night! He's usually in bed around 7:30 or 8 and will sleep until 6:30 or 7 the next morning. He's a unicorn, I swear. </div>
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We love you, cute boy! Happy 10 months!Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-15131876327573749062018-06-04T07:00:00.000-05:002018-06-04T07:00:08.746-05:00Self Care with Smile Brilliant {+ a Giveaway!}Self care. It's all the rage these days, right?! As a mom, I fail miserably at remembering to invest a little time and effort in myself once in awhile. I barely shower, don't get nearly enough sleep and I'm ashamed to say I've eaten leftover macaroni & cheese straight from the pan and called it lunch. I've also been wearing some of the same t-shirts and sweatpants I've had since high school. They look terrible, not only because they're old, but also because I've since had three kids and as much as I don't want to admit it, I'm not sixteen anymore.<br />
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Self care is in. Ill-fitting wide leg sweats from Hollister are <i>so</i> out.<br />
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Work, kids, therapy, doctor appointments - it all takes a toll so I've recently made a few changes to my day to help carve out some "me-time" amongst the chaos that is my life. One of these things is working out. Spoiler alert: I still hate it, but I'm down almost 10 pounds since staring at the beginning of March and I'm seeing subtle changes so I guess it's worth it. Likewise, I'm trying to make a conscious effort to eat better. This is also totally lame because mac & cheese is life but at 32 years old, I can't eat like I used to and not pay for it later!<br />
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Lastly, I started whitening my teeth with <a href="https://www.smilebrilliant.com/#babybyoakley" target="_blank">Smile Brilliant</a>! I was so excited when Smile Brilliant reached out to see if I'd be interested in testing out their <a href="https://www.smilebrilliant.com/product/teeth-whitening-trays#babybyoakley%EF%BB%BF" target="_blank">at-home whitening system</a>. It was super easy to get started and I was pleasantly surprised with the results.<br />
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This may not sound like much of a "self care" item but it totally counts! Along with the fact that I don't get a proper shower on a regular basis (thanks, kids!), I've also been using the same beauty products and makeup routine since the beginning of time. Brightening up my pearly whites was a great starting point when it came refreshing my appearance so I don't look like a total mess! I'm still on the hunt for a good under eye concealer (again... thanks, kids!) and anti-aging regimen so if you have any recommendations, hit me up.<br />
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Anyway, whitening my teeth has also given me a way to check some other things off my to-do list and focus on things I wanted to accomplish.<br />
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Here are 5 things you can do while you wait for those stubborn <a href="https://www.smilebrilliant.com/articles/at-home-teeth-whitening-reverses-tooth-discoloration#babybyoakley" target="_blank">coffee stains to disappear</a>...<br />
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<b>1. Organize a closet. </b><br />
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Our master closet is usually in complete disarray so during my first 45-minute whitening sesh, I tackled that beast. It was super productive; everything got folded or hung up, things were thrown away and clothes were put into a donation bin! By the time I was ready to change over to Smile Brilliant's <a href="https://www.smilebrilliant.com/product/sensitive-teeth-gel#babybyoakley" target="_blank">desensitizing gel</a>, everything was in order.</div>
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<b>2. Read a magazine. </b></div>
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To maximize results, I usually whiten right before bed so I'd set my timer, climb into bed and just read. It's relaxing and glorious and I need to make it a point to do it more often!</div>
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<b>3. Work out. </b></div>
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Two birds, one stone! The <a href="https://www.smilebrilliant.com/articles/benifits-of-choosing-custom-fitted-teeth-whitening-trays#babybyoakley" target="_blank">custom whitening trays</a> fit perfectly and I hardly notice them while I'm cursing at the TV during a cardio workout!</div>
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4. <b>Put the kids to bed.</b> </div>
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Alright, moms. You <i>know</i> bedtime is an ordeal, right? My girls are the absolute queens of stalling bedtime and it easily takes 45 minutes to an hour to get them tucked in at night. I found the start of their bedtime routine to be the perfect time to start a <a href="https://www.smilebrilliant.com/frequently-asked-questions#babybyoakley" target="_blank">whitening session</a>.<br />
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<b>5. Blog</b>! </div>
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You can't tell, but I'm whitening <i>right now</i>... ;)</div>
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I had used <a href="https://www.smilebrilliant.com/articles/at-home-teeth-whitening-products-which-is-best#babybyoakley" target="_blank">whitening strips</a> in the past but never saw any real results. I think I even slept in them a couple of times in college - yikes! Smile Brilliant's system is great because you're using a product that's safe and effective, developed and recommended by dental professionals and <a href="https://www.smilebrilliant.com/product/teeth-whitening-trays#babybyoakley%EF%BB%BF" target="_blank">customized to fit your mouth</a>. Better yet, it's all done within the comfort of your own home!<br />
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The kit arrives with clear instructional cards that explains each step of the process. The first thing you need to do is make your impressions using the trays and mixing the base and catalyst paste together. I was little intimidated at first because I didn't to mess it up but the instructions are very helpful and give you examples on how to make the best impressions. The paste does not have any flavor so don't worry about having a yucky taste in your mouth.<br />
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{And side note - the paste is NOT the same as playdoh so I'd advise against giving the leftover paste to your children to play with for a few minutes... not my brightest parenting idea!}<br />
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Once your molds are set, you'll mail them back to <a href="https://www.smilebrilliant.com/#babybyoakley" target="_blank">Smile Brilliant</a> in the postage paid envelope provided in your kit. I wasn't sure what to expect when my custom whitening trays arrived in the mail but they fit perfectly. They're made out of a flexible plastic which ensures the <a href="https://www.smilebrilliant.com/product/teeth-whitening-gel#babybyoakley" target="_blank">whitening gel</a> is evenly distributed on your teeth during a session.<br />
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<a href="https://www.smilebrilliant.com/teeth-whitening-facts#babybyoakley" target="_blank">Smile Brilliant</a> recommends whitening every other day at first, with each session lasting anywhere from 45 minutes to 3 hours. I found my teeth became a tad <a href="https://www.smilebrilliant.com/articles/how-to-whiten-sensitive-teeth#babybyoakley" target="_blank">sensitive</a> if I wore the trays longer than an hour or so. Also, my gums would be sensitive if I whitened every day so I stuck to the every-other-day schedule. Once whitening is done, follow up immediately with the <a href="https://www.smilebrilliant.com/product/sensitive-teeth-gel#babybyoakley" target="_blank">desensitizing gel</a> for 15 minutes to help cut down on sensitivity. I was a big fan of this step - it helped so much!<br />
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I started seeing results after just 3 or 4 applications, which was crazy. The <a href="http://www.smilebrilliant.com/teeth-whitening-reviews#babybyoakley" target="_blank">results</a> were subtle - <a href="https://www.youtube.com/watch?v=U8cKK9eQGMY" target="_blank">no Ross Geller moments here</a>! - but definitely noticeable!<br />
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<b>BEFORE</b>. And sorry, I know the lighting is terrible in these pictures - I took them on my iPhone in our master bathroom at night. No editing has been done...<br />
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<b>AFTER</b>. Same bathroom, same iPhone but these photos were taken in the morning with natural light. Still no editing...<br />
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Definitely a change, right?! I was impressed.<br />
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And good news! If you want to get in on the action, <a href="https://www.smilebrilliant.com/#babybyoakley" target="_blank">Smile Brilliant</a> is offering a discount code for Baby By Oakley readers! Use <b>babybyoakley15</b> for 15% off your order!<br />
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And <i>better</i> news! Smile Brilliant is partnering with me on a giveaway for you to win a <a href="https://www.smilebrilliant.com/#babybyoakley" target="_blank">whitening system</a> of your very own! Entering is super easy - <a href="https://www.smilebrilliant.com/g/babybyoakley" target="_blank">click here</a> and enter your name and email address. Follow Smile Brilliant on Instagram for an extra entry! Good Luck!<br />
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<i>This post is sponsored by Smile Brilliant. All opinions and fresh pearly whites are my own!</i></div>
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<!-- SMILE BRILLIANT ARTICLE WIDGET END -->Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-68425197850695506812018-05-10T23:23:00.000-05:002018-05-10T23:23:11.107-05:00Baker :: Nine Months OldBetter get this update posted before he turns 10 months old... WHERE IS THE TIME GOING!?!?!<br />
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Nine whole months with this cute boy. Same old story here - he's still amazing and cool and cute! After getting ear tubes, we really saw his personality shine through but then he got sick (a cold and then some yucky tummy bug) that had him feeling kind of crummy for about two weeks. But, he's now healthy and back to his happy self!<br />
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Even if he STILL won't smile for me and the camera...<br />
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Stinker.. ;)<br />
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Our goals this month continue to be working on rolling over back to front, pushing up with his arms while on his tummy and sitting up. We've been playing patty cake and practicing clapping as well. He loooooooves to chew on his hands but he's still trying to figure out how to work them! He watches us closely, though, so I know he's absorbing things like a sponge.<br />
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We've started using a bit of sign language on a consistent basis. Mostly "eat" and "more" while he's in the high chair. We'll show him the sign and then move his arms/hands to act it out before he gets a bite. He's doing so well with food, too. He gobbles the baby food right up and likes to try new things. Some newer foods include strawberries, scrambled eggs, cheerios, ground beef and chicken. He's trying hard to figure out how to pick up the food from his tray but he's not self-feeding yet. He has no issues taking bites offered from a spoon and if I feed him small bites from my plate he does a good job of moving the food around with his tongue, chewing and swallowing which is huge. Another big change this month was the switch to formula full time. We made it 8.5 months with nursing and I'm so proud of him/us. He was my longest and best nursling!<br />
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It's sometimes hard for me to accept that he doesn't have all of the gross motor skills that a typically developing 9 month old usually has but I count my blessings because we don't have feeding or growing issues some babies with Down syndrome can struggle with. It puts things in perspective for sure.<br />
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He's still rocking his helmet and continues to make progress! We can see a visible change already but I think he'll have it a couple more months so we can really get the back rounded out. Should make for a nice, sweaty summer! Ha.<br />
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His toes in that above picture crack me up. Little monkey.<br />
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At 9 months, he's 16 lbs 9 oz (he lost almost a pound when he was sick and has started gaining some of it back) and 26.75 inches long. He's in size 3 diapers and 9 month clothes. I'd love to ditch the infant carrier and move him to a convertible carseat but we'll wait a little bit longer until he can sit unassisted to make running errands a little easier. He usually naps 3 times a day (morning, afternoon and late afternoon before dinner) and typically goes to bed around 7:30 or 8. He was sleeping through the night but has been waking up to eat around 2am for the last week or so. Again, trying to gain some weight back or maybe headed into a growth spurt!<br />
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We skipped spring and went right into summer so we've been spending a lot of time outside playing and going on walks. I'm sure he'll be loving the pool once it opens for the season, too!<br />
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Happy 9 months, Baker boy! We sure love you!Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com2tag:blogger.com,1999:blog-2334204714283865402.post-89380752074033905962018-05-04T06:00:00.000-05:002018-05-04T06:00:06.755-05:00Five on Friday | April RecapWelp, April sure flew on by, huh?! We're keeping busy so I figured today was as good as any to recap the last month or so of life...<br />
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<b>{ONE}</b><br />
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We celebrated Easter with my parents, which I now realized never made it to the blog. It was pretty low key - it was snowing after all - so we just did an egg hunt around the house for the girls and had my aunt and uncle in for dinner.<br />
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We got up early the next day for Baker's surgery for ear tubes and circumcision. He recovered quickly, is all healed up and he seems to be hearing better which makes me so happy. We're getting some good smiles and facial expressions as he learns to interact with us on that level. It's so fun to watch him experience these new sounds.<br />
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<b>{TWO}</b><br />
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After a few weeks of weather delays, both girls finally started soccer! This is Gracyn's third year playing and she still loves it. Leighton got in on the action, too, with a little Mini + Me session that has parent involvement. Basically all of the 3 year olds run around for 5 minutes and then spend the rest of the practice asking for snacks and/or crying. Good times all around!<br />
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<b>{THREE}</b><br />
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Baker had some follow-up appointments for his helmet. He continues to make progress in the right direction and we can definitely notice his head shape improving. The darned thing gets pretty stinky some days so I always look forward to taking it off and letting him air out a bit. We wash the helmet every night with his baby shampoo and wipe it down with rubbing alcohol. I'm still hoping he can graduate from it before we get too far into summer.<br />
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His early intervention therapist came by a few times in April to experiment some more with taping his abs and back with kinesiology tape to help "wake up" those muscles. In theory the tape is supposed to help make him more "aware" so those muscles become engaged and he starts using them to roll over and sit up. I don't know that we see a ton of difference when he's taped versus without it but it's definitely not hurting anything. He's making some good progress when it comes to holding steady in the sitting up position but still has no interest in rolling or becoming mobile!<br />
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<b>{FOUR}</b><br />
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Sickness! We made it pretty much all winter without any major illnesses which I'm so thankful for but Baker caught a nasty virus last week and spent several days vomiting and having super gross diapers. Poor kid was not feeling well at all. He slept a lot and would wake up to eat only to start coughing/gagging/throwing up after each bottle and going through outfits like it was some sort of contest to see just how much laundry one person could do in a single day.<br />
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The girls didn't have it as bad but they were tired and not eating much so it made for a long week..<br />
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<b>{FIVE}</b><br />
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We rallied, though, and went to Oklahoma last weekend to celebrate our niece's wedding. Gracyn and Leighton were flower girls and it was good to get down and see Justin's family. And bonus! We ended dup with a decent family pic!<br />
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And that was our April in a nutshell. May is here and so are these gigantic, wonderful smiles...<br />
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Happy Friday!Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com1tag:blogger.com,1999:blog-2334204714283865402.post-28447652656418937792018-04-23T08:27:00.001-05:002018-04-23T08:27:17.385-05:00Everything’s Gonna Be Alright<div class="separator" style="clear: both; text-align: center;">
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On Saturday, Gracyn asked me why I used to cry when we went to doctor appointments while I was pregnant with Baker. I’m not sure what triggered those memories but she definitely remembers that season of life. We’ve always talked a lot about Down syndrome and heart defects with her so I told her she was right.<br />
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I did cry.<br />
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I had a <a href="https://babybyoakley.blogspot.com/2017/06/thoughts-on-prenatal-down-syndrome.html" target="_blank">rough couple of weeks</a> when we first learned of <a href="https://babybyoakley.blogspot.com/2017/05/baker-heart-warrior.html" target="_blank">Baker’s diagnosis</a> and often times those emotions played out in front of the girls, whether it was during a nerve wracking follow up with my OB or after a phone call with the geneticist when they <a href="https://babybyoakley.blogspot.com/2017/09/the-official-diagnosis.html" target="_blank">delivered test results</a>. I cried because I was scared about our family’s future and Baker’s future. I was worried about his heart. I was sad, thinking our life would be drastically different.<br />
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I also told her that it was okay that I cried, that it was okay to have <i>all the feels</i> because now look at us. Almost a year has passed since we learned of Baker's heart and his Ds diagnosis. I’m not worried about our family’s future. Baker’s heart is fixed. Sure, I may have moments where I'm hard on myself, thinking we could be doing more with him or times when I'm feeling discouraged when I see him working so hard towards the next milestone that hasn’t quite clicked yet, but deep down, I know he’ll get there.<br />
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I look at pictures like these and am instantly reminded that our life isn’t that different at all. One of the best big sisters reading to her baby brother while another pretty great big sis plays nearby, always close to her bubba. Gracyn calls him "my little boyfriend." They fight over who gets to give him bedtime kisses first. I still cry every now and then but they're mostly happy tears knowing he’ll be alright.<br />
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They’re all gonna be alright. Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com2tag:blogger.com,1999:blog-2334204714283865402.post-32011468028285146302018-04-07T22:20:00.001-05:002018-04-07T22:20:06.164-05:00Baker :: Eight Months OldEight months! March was busy and filled with doctor appointments. Baker continues to be a rockstar and takes each one with stride. There hasn't been a ton of progress developmentally but he still had a big month!<br />
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First things first, he got a haircut. Like a big boy. I was so nervous I actually said swear words while the gal was buzzing the back because I was scared she'd accidentally take too much off the top. He looked so old afterwards but so, so handsome.<br />
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He had a few pre-op appointments with ENT and urology regarding his combo procedure. The surgery for ear tubes and circumcision went as planned and he's slowly getting back to his old self! He took some extra time sleeping off the anesthesia on Monday but we were home later that afternoon to rest up. I feel like I can already tell a difference in how much he's hearing thanks to the tubes helping drain off excess fluid so I'm excited to get another hearing test in a few weeks to confirm.<br />
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Baker has also adjusted really well to his new hardware. The helmet is a nuisance but he's a trooper for sure. He's up to wearing it 23 hours a day with a quick break in the evenings so we can wash it and let his head breathe a bit. He woke up quite a few times the other night when he had to sleep in it for the first time but after trying a few different positions, he finally found a way that was comfortable. I'm hoping his head cooperates and we can graduate from that thing sooner rather than later!<br />
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Slowly but surely (I have to remind myself it's a marathon, not a race!) he's inching his way towards sitting up and rolling back to tummy. Just yesterday he kicked his legs up and rolled onto his side before realizing what was happening and threw himself backwards again. Silly boy.<br />
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This picture with his chalkboard is probably the most legit sit we've had from him so far! He was trying to hard to balance himself. He loves his hands, is a fan of patty-cake and is always chomping on his fingers. No teeth yet but he may be starting the teething process.<br />
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Another month down and he keeps getting better and better! We love you, cute boy!Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com2tag:blogger.com,1999:blog-2334204714283865402.post-72734303078527718322018-03-30T06:00:00.000-05:002018-03-30T06:00:56.413-05:00Five on Friday, Finally!I've been meaning to get a Five on Friday post published since what feels like the beginning of the year. Life, man.<br />
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Justin's been out of town all week, the kids have been well behaved for the most part (minus a few tantrums about the flavor of granola bars left in the pantry) and my parents arrived last night to spend the Easter weekend with us.<br />
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<b>{ONE}</b><br />
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We're gearing up for Easter and I've gotten the kids' baskets all squared away. I tried getting Baker a basket to match the girls but couldn't find anything so naturally, had to buy three brand new ones. Target to the rescue!<br />
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We don't go overboard on Easter baskets or anything like that - the girls will get some candy and they're each getting a new book, a shirt and/or dress and a few other small things. We have a neighborhood hunt on Saturday morning and the Easter Bunny will make a stop so they can hunt eggs at home on Sunday.<br />
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<b><i>Gracyn's Basket:</i></b><br />
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Leighton's Basket:</i></b><br />
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<b><i>Baker's Basket:</i></b><iframe frameborder="0" height="215px" seamless="" src="//shopsensewidget.shopstyle.com/#/?options=%7B%22widgetId%22%3A%225abdae5761d1ddca5d52109c%22%2C%22version%22%3A1%2C%22pid%22%3A%22uid9761-32866319-8%22%2C%22size%22%3A140%2C%22columns%22%3A4%2C%22rows%22%3A1%2C%22url%22%3A%22https%3A%2F%2Fapi.shopstyle.com%2Fapi%2Fv2%22%2C%22iframeHeight%22%3A215%2C%22iframeWidth%22%3A680%7D" style="border-width: 0px; text-align: center;" width="680px"></iframe><br />
<b>{TWO}</b><br />
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Helmet hair, don't care!<br />
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Poor little dude received his helmet this week. He's not sure what to think but he's handling it like a champ. I know it's for the best but I'm super bummed I can no longer easily kiss his head and face all day long. The big old helmet gets in the way so it'll be an adjustment for everyone involved.<br />
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We hope to have him out of by his first birthday in August. In the meantime, his hair will be sticking straight out the top while we support the Boys in Blue.<br />
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<b>{THREE}</b><br />
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And as if this kid didn't have enough going on, Baker is scheduled to get ear tubes placed on Monday morning. He'll be put under anesthesia for the procedure but we're hoping its quick and easy and we're back home by lunch time. He's had fluid built up in his ears I'm guessing since birth and it's affecting his hearing. I'm hopeful the tubes will help drain out that fluid and make it so he can hear us and the world around him and that it'll only help further his development.<br />
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If you could send us positive vibes come Monday, we'd surely appreciate it!<br />
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<b>{FOUR}</b><br />
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I started working out. Like, for real this time. I successfully completed my first <a href="https://www.beachbody.com/product/fitness_programs/21-day-fix-simple-fitness-eating.do?code=SEMB_21D_GOOGLE&utm_campaign=Google_Brand_21%20Day%20Fix_Alpha&utm_term=21%20day%20fixed&trackingid=sNMLyJLEd&gclid=Cj0KCQjwnfLVBRCxARIsAPvl82GTabDnnFwUMkOm7aObytWUugd1PhigaCK9ihNSJ5lrwDpE4duJuZAaApaPEALw_wcB" target="_blank">21 Day Fix</a> program and definitely saw some changes! The scale only went down about 2.5 pounds but I lost a total of nine inches as well! Pretty crazy. I started out strong on my nutrition and drinking the chocolate shakeology but about midway through I got totally burned out on the flavor.<br />
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I tried following the recommended eating plan and while I wasn't as strict as I probably should have been (I'm looking at you, Easter candy...) I was definitely more conscious about what I was eating throughout the day. Still needed my coffee, still needed my one diet coke a day but cut back on stuffing my face with leftover mac & cheese from the kids' lunches and only ate ice cream once in the 21 days. Totally winning, right!?<br />
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I need to decide what workout program to do next. Any one else do Beachboy on Demand and have a fave?!<br />
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<b>{FIVE}</b><br />
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Justin's birthday is next Sunday - any gift suggestions for a middle aged man?! ;) He asked for new lawn chairs like any normal 36 year old would so I think I can handle that. His birthday always coincides with the beginning of baseball season so maybe we can hit up a Royals game sometime soon to celebrate some more!<br />
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That's all I have for today. And I know why I can't manage to blog more often these days - this one post took me like, three hours! Again, LIFE.<br />
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Hope you all have a very Happy Easter!<br />
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Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com4tag:blogger.com,1999:blog-2334204714283865402.post-72941448191275081442018-03-21T08:05:00.001-05:002018-03-21T08:05:09.022-05:003:21 // World Down Syndrome Day<div class="separator" style="clear: both; text-align: center;">
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Hey girl, it's World Down Syndrome Day!<br />
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Baker's smirk and his belly are ready to celebrate 3:21! World Down Syndrome Day comes around each year on March 21st, celebrating and honoring those with three copies of the 21st chromosome like our own resident homie.<br />
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Last March, I was in the second trimester of pregnancy and we hadn't even learned if we were having a boy or a girl yet. Down syndrome wasn't on our radar at all. We didn't know we were about to be thrown into doctor visits and <a href="https://babybyoakley.blogspot.com/2017/05/baker-heart-warrior.html" target="_blank">heart surgery</a> and developmental delays. We were getting ready to welcome a new baby into our family, thinking life would carry on just the same as it had twice before.<br />
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In the year since, we've learned all we can about Down syndrome and heart defects. We've worked with doctors and therapists to get Baker the care the needs to thrive. We've participated in <a href="https://babybyoakley.blogspot.com/2017/08/step-up-for-down-syndrome.html" target="_blank">walks and fundraising events</a> for our local <a href="http://kcdsg.org/" target="_blank">Down Syndrome Guild</a> and joined other new parents at support breakfasts. Justin gets together with other dads who all have kids with Down syndrome to race go-karts and play poker; I sneak away for dinner with mom friends who just "get it." We've been introduced to a whole new beautiful world and have met lifelong friends.<br />
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And the best part? Life carried on.<br />
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It was scary and then it wasn't. <a href="https://babybyoakley.blogspot.com/2017/06/thoughts-on-prenatal-down-syndrome.html" target="_blank">For a brief moment it even felt sad, but then it was so, so happy</a>. It was overwhelming and then we adapted. We brought this gorgeous boy home and it all just became the norm - he fits into our family perfectly.<br />
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We can't imagine a world without Baker and those like him so we're so excited to be celebrating <i>our</i> first World Down Syndrome Day. We have so much to learn from Baker and other individuals with Down syndrome and we plan on taking advantage of this gift we've been given. We'll continue sharing our story and connecting with others so everyone can see what life with Ds is <i>really</i> like. So when the next mom gets a Ds diagnosis, she's met with positivity and encouragement and resources instead of scary, outdated statistics and sad stereotypes.<br />
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To kick off #WDSD18, I reached out to my good friends at <a href="http://www.kansascitymomsblog.com/" target="_blank">Kansas City Moms Blog</a> and they published <a href="https://kansascity.citymomsblog.com/world-syndrome-day/" target="_blank">an article</a> for me today so be sure to check it out! It covers a little bit of our history and some facts about Down syndrome, along with a list of resources if you or someone you know is needing/wanting to connect. I miss being on the team but feel so fortunate that I'm still able to call on that group of women for support.<br />
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You can easily celebrate World Down Syndrome Day, too, by supporting businesses run by people with Down syndrome and their allies (<a href="https://johnscrazysocks.com/" target="_blank">John's Crazy Socks</a>, <a href="https://graciesdoggiedelights.com/" target="_blank">Gracie's Doggie Delights</a>, or <a href="https://www.reevestees.com/" target="_blank">Reeve's Tees</a>), donating to organizations that support individuals with Ds and their families (<a href="https://www.kcdsg.org/supportkcdsg.php" target="_blank">Kansas City DSG</a>, <a href="https://dsdn.networkforgood.com/projects/23277-dsdn-annual-campaign" target="_blank">DSDN</a> and <a href="https://321pledge.org/" target="_blank">Ruby's Rainbow</a>) or spreading the love with random acts of kindness in honor of someone you know who rocks an extra chromosome.<br />
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Baker and I have a big day planned with a few appointments this morning and then getting back to weekly therapy after spring break. It'll be so good to see our friends after a little time off! And yes, we'll be wearing our matching <i>Nothing Down About It</i> t-shirts and sharing his awesomeness along the way... ;)<br />
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<tr><td class="tr-caption" style="text-align: center;">so teeny tiny!!!</td></tr>
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Oh! And we also can't forget the <i>other</i> great thing about today! Grandpa Warren's birthday! Happy birthday, Daddio - we sure love you!<br />
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Our Baker Man is S E V E N months old!<br />
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<a name='more'></a>Seventeen pounds. The juiciest thighs. A legit combover. Yup, he's still the best thing ever!<br />
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At seven months old, B is wearing 6-9 month clothing and we're about to move up to size 4 diapers. Baker is legitimately rolling over from tummy to back like he's been doing it all along. Seriously, one day it just clicked and he's pushing off with purpose to get off his tummy and onto his back. I feel like you can literally see him getting a little stronger every day. He'll maybe reach a little further or put a little more weight on those arms and while it seemed slow-going over here in terms of development, it's so cool to see him finally "get" it.<br />
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Now, if we could just motivate him to go in the other direction and get onto his tummy!<br />
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He's finding his voice more and more each day, too. He has the "mmm" and the "buh" sounds and likes to let out some low growls every now and then. I think I want to start incorporating some sign language with him, too, to help with communication later on. Simple words like <i>more</i>, <i>eat</i>, <i>milk</i>, <i>please</i>, <i>play</i> and <i>all done</i> I think will be a good place to start!<br />
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Baker is still doing a great job with solids - he's had bananas, sweet potatoes, apples, peas, prunes, green beans and some other random nibbles off our plates here and there. He's not quite reaching for food on his own or bringing it to his mouth but we're trying to have him sit in his highchair during meals and play around with the food on his tray.<br />
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He's still nursing but daycare days make it a little harder so frequency has gone down which means he's getting a few more bottles mixed in. He'll nurse first thing in the morning and then late afternoon/early evening and through the night if needed. He's usually waking at least once in the night but we did have one glorious 11.5 hour stretch of sleep last week! I'll take it.<br />
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Therapy is going really well, we love seeing our friends every week and learning new things. Health-wise, he continues to impress and we've made it through cold/flu season without any major illness (thank goodness!!!!!). We had a little bit of downtime when it came to doctor appointments last month but it seems they've picked up again.<br />
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He had his eyes checked (a little farsightedness, follow up in 6 months), a cardiology check up (cleared until his birthday, yay!!), we fired his hematologist after they poked him 5 times and <i>still</i> failed to find a vein, got a new hematologist who is SO MUCH better, had labs draw to check CBC and his thyroid (all good!), had a consult about getting him circumcised (sorry, dude..) and he goes to back to the ENT on Friday for a hearing check and to possibly discuss ear tubes.<br />
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Baker is also in the process of getting fitted for a cranial helmet to help with his head shape. He has a pretty noticeable flat spot on the back of his head so the helmet will hopefully correct it over the course of the next 3-6 months. Helmet hair, don't care <i>am I right</i>?!<br />
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He and the girls keep us busy (and exhausted), that's for sure, but it's a fun chaos. I'm excited the weather will be warming up soon and we an emerge from our hole again and spend time outside on a regular basis. Fresh air will do us all some good!<br />
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Oh, sweet Bubba. Your sissies <i>l o v e </i>you and one of them is always close by. You don't seem to mind the invasion of personal space, which is good I suppose. You are the chillest kid, happy to just sit back and observe and very go-with-the-flow. We adore you and we're so, so proud of you!<br />
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Happy 7 months!<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com1tag:blogger.com,1999:blog-2334204714283865402.post-29851304464664440482018-02-20T11:03:00.001-06:002018-02-20T11:03:30.496-06:00Leighton Says<div class="separator" style="clear: both; text-align: center;">
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I cannot believe I haven't done a "Leighton Says" post yet! My <a href="https://babybyoakley.blogspot.com/search/label/Gracyn%20Says" target="_blank">Gracyn Says</a> posts are some of my favorites because I love going back and reading the funny stuff she says. It's about time Lei-Lei got her own post - girlfriend does not disappoint now that she's talking so well!<br />
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<i>As I followed her up the street to the neighbor's house, in a very annoyed voice...</i><br />
<b>Leighton</b>: Mom, go way. Go home, mom.<br />
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<i>After Justin asked her to stop doing something...</i><br />
<b>Leighton</b>: it's ok, dad. dad, it's ok!<br />
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<i>Driving Gracyn to school one day...</i><br />
<b>Leighton</b>: oh my gosh it's so soggy out!<br />
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<i>Through tears while potty training...</i><br />
<b>Leighton</b>: ...but I don't wanna wear big girl undies forever!<br />
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<i>After I asked Gracyn to talk to Leighton about said potty training...</i><br />
<b>Gracyn</b>: Leighton, I just wanna talk to you about the potty...<br />
<b>Leighton</b>: no, sissy! I don't wanna talk bout that right now.<br />
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<i>After I asked her when she was going to start pooping in the potty...</i><br />
<b>Leighton</b>: um, maybe on Friday?<br />
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<i>Playing by herself...</i><br />
<b>Leighton</b>: oh bless her little heart.<br />
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<i>Randomly as I was getting ready one day...</i><br />
<b>Leighton</b>: mom, is that a bad word?<br />
<b>Mackenzie</b>: is what a bad word?<br />
<b>Leighton</b>: psycho.<br />
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<i>Trying to get my attention:</i><br />
<b>Leighton</b>: MOTHER!<br />
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<i>Stalling bedtime, yet again...</i><br />
<b>Leighton</b>: but I have to brush my teeth! I'm going to the dentist and her will be mad at me!<br />
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<i>Pointing (and speaking very loudly!) to a stranger at the store...</i><br />
<b>Leighton</b>: mom, what's her name?!<br />
<b>Mackenzie</b>: oh, I'm not sure!<br />
<b>Leighton: </b>hm.. maybe Cinderella.<br />
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Yes, maybe. ;)Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com1tag:blogger.com,1999:blog-2334204714283865402.post-8821279346347443872018-02-09T06:00:00.000-06:002018-02-09T06:00:12.616-06:00Five on FridayHeyyyyy Friday! I'm so glad to see you.<br />
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{ONE}<br />
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We survived the first week of daycare for all three kiddos. Baker joined the girls on Tuesday and Thursday this week while I worked in the office. I got up for the day at 5 am because Baker woke up to eat and somehow that still wasn't enough time to get out the door by 7:30 - ha! Getting out the door with three kids also requires 47 bags of crap (backpacks, lunch bag, diaper bag, breast pump..). There was minimal whining and only one kid had their shoes on the wrong feet. I call that winning, folks.<br />
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Baker did so well - he ate his bottles and managed to get in a few naps. Poor guy was sooooo tired on Wednesday, though. He barely made it through therapy and went to bed early. I let myself be all sad and weepy during the drive into work but once I got there, the days actually passed pretty quickly. I was glad to get home to my babies for sure!<br />
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{TWO}<br />
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Um.... did you see the new Gerber Baby of the Year?!?!<br />
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<a href="https://www.instagram.com/p/Be5djURhrDV/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Congratulations to our 2018 Gerber Spokesbaby Lucas! Welcome to the family Lucas, send him 💙love! #AnythingForBaby</a></div>
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A post shared by @<a href="https://www.instagram.com/gerber/" style="color: #c9c8cd; font-family: Arial,sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px;" target="_blank"> gerber</a> on <time datetime="2018-02-07T13:53:00+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Feb 7, 2018 at 5:53am PST</time></div>
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How amazing is this?! Out of tens of thousands of entries, this little homie walks away with the grand prize. Yay, Lucas! There are so many wonderful things about this but the most important thing is how this will affect families dealing with a new diagnosis. They'll be able to see this beautiful baby being included and celebrated and it will hopefully help calm some of the fears or concerns they're dealing with.<br />
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One mama I follow on social media likened this to being one step closer to families giving their doctor a high-five upon learning their kiddo will be born with Down syndrome rather than being overcome with anxiety and uncertainty (like I was last year!). Knowing what I know now, a high-five definitely seems like a better reaction!<br />
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This little cutie on the <a href="https://www.today.com/parents/2018-gerber-baby-first-gerber-baby-down-syndrome-t122258" target="_blank">Today</a> show the other morning and at the end, Savannah Guthrie said, "...the Gerber baby represents the ideal baby and Lucas, you <i>are</i> the ideal baby!" Amen to that.<br />
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{THREE}<br />
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When I'm not crying in my minivan because I just left my kids at daycare or swooning over brands that practice inclusion, I'm on the hunt for some new clothes. I'll have to pretend to be a real human two days a week and my wardrobe seriously screams "stay/work-at-home-mom." Gracyn came down the stairs on Tuesday morning and asked, "Mom. <i>What</i> are you wearing?!"<br />
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Jeans. These are called jeans, child.<br />
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As you can imagine, leggings and sweats have been my life these last three years so I'm in need of a little closet refresh. I'm definitely on the hunt for a new pair of gray or taupe booties. I've tried on a few pairs but haven't bit the bullet quite yet. I'm on a very strict (basically nonexistent) budget because daycare is taking up an obnoxious chunk of change, but I'm hoping I can find a good deal. Some of my favorites so far...<br />
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{FOUR}</div>
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I took the day off today to relax a bit and take B to an appointment later this afternoon. We're getting a consult regarding the shape of his poor head. It's a tad flat in the back on his right side so a helmet may be in his future. We should know more after today.<br />
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{FIVE}<br />
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Helmet or not, he'll be the cutest little valentine ever!<br />
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Happy weekend!<br />
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Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com0tag:blogger.com,1999:blog-2334204714283865402.post-80538841314775945852018-02-05T22:29:00.001-06:002018-02-05T22:29:43.736-06:00Baker :: Six Months OldS I X M O N T H S O L D.<br />
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Half a year. Someone hold me, please. I say this every month but I'm not quite sure how we got here so quickly. He was just born, right?! Time is a thief, I tell you.<br />
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We had a relatively low key month around here which was kind of nice. You know, no <a href="https://babybyoakley.blogspot.com/2017/12/baker-brave-open-heart-surgery.html" target="_blank">major heart surgeries</a> to contend with or anything like that! January felt like the longest month in history but I'll blame that on the cold dreary weather. Winter is such a drag after the holidays! We live for the semi-warm days when we can get out of the house to get some fresh air for a few minutes. I like to take the kids on walks whenever I can and we were luckily able to sneak a few in this month.<br />
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<a name='more'></a>Our Baker Man is doing amazingly well at 6 months old! He managed to stay healthy while Leighton and I battled head colds two weeks ago and I'm so thankful he didn't get it. He is wearing 6 months clothes, weighs 15 pounds and is 24.5 inches long. He was finally able to get his 4-month vaccines a few weeks ago so his 6-month well check will be delayed a bit. We should be back on track by the time he needs his 9 month well visit.<br />
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One of my favorite things this month was the start of his weekly baby class at a local infant development center. He goes every Wednesday afternoon and gets to play with other babies his age while they all work on gross motor skills and learning things we can do to help further his development. He also gets a private 30-minute physical therapy session and he's continuing to work on learning how to roll over both ways and sitting up. One of his goals is to also start extending those arms when he's on his tummy and applying some weight through his arms and wrists.<br />
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He also gets some music therapy every week during his group class and once a month he gets to go swimming for some aquatic therapy! He LOVED the pool last week, it was so fun to see the little babes kicking and playing in the water.<br />
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I'm so thankful we can take advantage of a center like this that offers these types of services. All of these little skills that he's working so hard to master came so easily to the girls. I didn't even think twice about what it takes for a little baby to lift their head or reach for a toy or engage the muscles needed to sit up - they just <i>did</i> it. Baker's therapists have been so great at explaining how his low muscle tone affects his ability to do some of those things but also gives us so much hope that he <u><i>will</i></u> meet all of those milestones eventually.<br />
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I've spent a lot of time this month thinking about Down syndrome and comparing Baker to the girls. Something that I <i>know</i> I shouldn't be doing but those thoughts creep in once in a while! Both girls were rolling over and sitting independently at 6 months (Gracyn <a href="https://babybyoakley.blogspot.com/2013/07/six-months-old.html" target="_blank">here</a> and Leighton <a href="https://babybyoakley.blogspot.com/2015/06/leighton-six-months-old.html" target="_blank">here</a>!) and I was getting a little bummed out that Baker isn't doing those things quite yet. It's so silly because he's gone though SO MUCH these first few months of life, things that are way bigger than rolling over or sitting up, so I just have to remind myself that it's all good. He has some ground to make up for after his extended sleepy newborn stage (the first 4 months of life!) and that broken heart but he's definitely moving in the right direction. He's going to do things in his own time and it'll all work out perfectly for Baker.<br />
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And, after working so hard on those milestones, we make sure to celebrate every single one! Homeboy giggled for the first time this month and I legit started crying. It was the best! He of course hasn't really done it since but we know it's there!<br />
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Baker is still predominately nursing every 3-4 hours during the day. When he gets a bottle he's taking 4-5 ounces. He's usually in bed by 7:30 or 8 pm and will get up somewhere between 1-3 am to eat. Luckily he gets a snack and gets back down relatively quickly so I can't complain. We're still having issues with getting Leighton to sleep through the night so we're no where near getting decent sleep but I'm thankful the baby isn't waking more often than once or twice a night.<br />
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He also tried bananas for the first time the other day and did so well! I was so excited to see how he did with real food. He doesn't necessarily watch us while eating or grab for our food but I wanted to start solids so he could get used to different textures and flavors. Kiddos with Down syndrome can have oral aversions so we were ready to get started. I think he'll really catch on after a few more meals - he'd open for the spoon and had no issues using his tongue to taste and swallow which are all good things! Sweet potatoes are next!<br />
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Baker also starts daycare this month! Mama isn't too excited about that one but we've been going back and forth with my work about me transitioning back into the office a few days a week so I'm hopeful our new schedule works for everyone. The girls started daycare at the beginning of January and go Tuesdays, Wednesdays and Thursdays. Baker will join them on Tuesdays/Thursdays starting tomorrow! I'm hoping to keep this schedule until Gracyn starts kindergarten in August and then we can reevaluate at that time.<br />
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I'm hoping Baker really benefits from interacting with his teachers all day long and getting to play with other kids his age. I'll be counting down the minutes until I can get home to him and his sissies for some extra snuggles.<br />
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Oh, Baker! Six months old is such a big deal! You're growing so quickly and I love watching you learn and take in your surroundings. You light up when you see your sisters - Leighton in particular - and always flash a smile for me and daddy. You rarely fuss and like to be held so you can look around. I'll miss you on those stinking daycare days but I know you'll rock it. We're so proud of you and couldn't imagine a world without you in it.<br />
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Happy 6 months, sweet boy!Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com3tag:blogger.com,1999:blog-2334204714283865402.post-50745075129227374682018-01-24T20:58:00.001-06:002018-01-24T20:58:26.989-06:00Gracyn :: Five Years OldYou guys. I can't deal. MY BABY IS FIVE. I've successfully kept someone alive and well for five whole years. I still don't know what I'm doing half the time but this is something to celebrate! A whole hand. Almost in kindergarten.<br />
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She stated the other night that once she's five, she's going to start doing "five year old things" like taking showers and putting herself to bed. Like I said, I CAN'T EVEN.</div>
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Wanna know what else I can't even handle? Gracyn's totally amazing sense of style...<br />
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<a name='more'></a>This girl is FIERCE.<br />
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Yep. She came downstairs the other morning dressed to impress with all of the appropriate accessories for a cold, rainy Monday at home. Ha! She likes to wear something "beautiful" every day, whether it's an overly fancy dress or some of her play jewelry. She's might even try and sneak some makeup every now and then, too. And she's been very into picking out her own outfits and while we intervene sometimes, we mostly just roll with it. Patterns on patterns (on patterns) are in, right?<br />
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At five years old, Gracyn is the sweetest girl. She is funny and sensitive and pretty much follows the rules. She's definitely a lover, not a fighter, and I'd say she behaves 90% of the time, usually listening or doing what we ask. The other 10% of the time she can be a typical kid with meltdowns when her emotions run high. And high emotions are definitely becoming the norm around here! If she disobeys or thinks she's in trouble, she knows it immediately and will run up to her room in tears (dramatic stomping and slamming of the door included!) until we go up and have a chat. She gets upset when her friends have to leave or they aren't home to play and can be very dramatic when a day at home equates to her "<i>never</i> being able to do anything FUN!" She likes to know what's next on the agenda and would eat at McDonald's every day if she could.<br />
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She is smart and has a very good memory. She'll randomly talk about things that happened years ago. It really surprises me what she can drum up from memory. She adjusted well to preschool last year and did the same when we started at her new daycare earlier this month. I'm so excited for her to start school in the fall! She's been talking about kindergarten for about a year now so I know she'll love it.<br />
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If she is having apprehensions about something or is feeling a little down, we can always tell because she'll ask for "special alone time" with either me or Justin. Usually all it takes is a solo trip to the store or something like that to make her feel better - and it's a nice reminder for us to carve out a little one-on-one time with her and the other two kids.<br />
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Gracyn has always been a great big sister and she continues to be a big help with her sister and brother. We're slowly but surely starting to see her and Leighton play well together. Some days are better than others but as Leighton matures, I'm looking forward to seeing them get even closer. No matter how crazy Leighton can be, Gracyn is patient with her and never pushes or hits back.<br />
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She's quick to grab a diaper or hold Baker if I need a minute with my hands free. She will entertain him by dancing and singing and even made sure to ask, "Baker, don't you just love my dress?!" after waltzing downstairs in this number.<br />
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My Goose. You are one of my favorites. You made me a mama and while I don't claim to have it all figured out, I'm so proud of the young lady you are becoming. I love you more than words, girlfriend.<br />
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Happy 5th Birthday, baby!<br />
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Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com1tag:blogger.com,1999:blog-2334204714283865402.post-55756431021673931232018-01-16T13:36:00.001-06:002018-01-16T13:36:39.639-06:00Five on.... Tuesday.Oh, hey, 2018! Halfway through January and I still don't have my life figured out, guys. Yep, I've been trying to publish this post since last Friday. Finally getting my act together now on my lunch break while the girls are at daycare and Baker naps (in his crib!).<br />
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But really, I wanted to pop in today just so I could share this picture of Baker...<br />
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What a goober.<br />
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Gracyn was being extra sweet with him the other day and held and played with him for a solid 20 minutes while I drank coffee (and took pictures, duh..). It was beyond cute. She's such a great big sister.<br />
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I started working out last week. That sentence is almost laughable because while I actually did work out on Sunday night (and took the kids for a walk the next day!) my body still hurt three days later and by Thursday of last week, I was eating puppy chow for lunch. So....... yeah. Baby steps, people, baby steps.<br />
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{THREE}<br />
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The girls started daycare! They got one whole day in last week on Tuesday before the center closed due to inclement weather on Thursday. Bad timing on our part since daycare follows the school district's weather policy but they had a great first day!<br />
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Leighton did SO well. She was tad nervous but handled it like a champ. Its their second day today and she marched right into her room, gave me a hug and went about her business. So glad they seem to be adjusting well.<br />
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This mama is also enjoying a little break at home with just Baker. It's amazing how much work I got done the day the older girls were gone... ha! We might even be changing up their schedule so they go three days a week - Tuesday, Wednesday, Thursday - mostly to help accommodate Baker's therapy schedule.<br />
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Speaking of therapy - this little hambone started his new baby class last week, too! It'll be so good to be around little babes his age and getting to see them on a weekly basis. In addition to the group class, he also gets a private physical therapy session to work on some individualized skills. More tummy time and rolling are in our future. He also wants to SIT so we'll be working on that as well!<br />
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{FIVE}<br />
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Gracyn turns F I V E next week! I truly can't believe it. She's the sweetest girl and is SO EXCITED for her birthday. She's been talking about it for months and we can't wait to celebrate our girl!<br />
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That's all for now. Baker's nap lasted 52 minutes, which is a new record up in his room! Making progress!<br />
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Happy Tuesday!Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com2tag:blogger.com,1999:blog-2334204714283865402.post-7443309730994989562018-01-09T22:28:00.004-06:002018-01-09T22:35:57.936-06:00Baker :: Five Months OldHappy New Year! We've been hunkering down these first few days of January. We had a quick trip up north to Sioux Falls for New Years (where it was even colder than it was in Kansas City...) and came back in time to dismantle Christmas, organize and clean the house.<br />
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We're slowly getting back into a routine after the holidays and in the mix, Mr. Baker turned 5 months old!<br />
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Big shocker, but he continues to be the sweetest, cutest boy around. It's been a big month revolving around <a href="https://babybyoakley.blogspot.com/2017/12/baker-brave-open-heart-surgery.html" target="_blank">heart surgery</a> and his first <a href="https://babybyoakley.blogspot.com/2017/12/christmas-2017.html" target="_blank">Christmas</a>. He continues to heal amazingly well and I can't believe it's been four whole weeks since surgery. </div>
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You can see how well his scar is healing in the picture below. Since I took these, the very bottom of his incision looks a little red so we're keeping an eye on it. I don't think it's infected and it's not getting any worse at the moment, it just looks a little irritated either by clothing or by how much he moves around. Boyfriend doesn't like to sit still! But overall, his little zipper looks great!</div>
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At 5 months, Baker is 14 pounds, about 24 inches long and is wearing 3-6 month and 6 month clothes. He's still breastfeeding like a champ but has also decided to take a bottle again here and there (woo hoo!) which is great news considering he starts daycare in a couple of weeks! Mama was stressing that he'd be starving during the day when I have to be at work but I think he's come around. We're waiting until 6 months to introduce any solids and I'm excited to see how he does with real food! He hasn't shown any real interest in our food yet so we won't rush it but it'll be fun to play around a bit!<br />
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Baker (finally!) starts his weekly physical therapy on Wednesday! I'm so excited to get him started and learn some new things we can be doing with him to help him reach his full potential. He really wants to sit up so I'm looking forward to helping him hit this milestone! </div>
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He tolerates tummy time for short increments of time and has rolled front to back a couple of times but nothing consistent so that's another goal of ours along with bearing weight through his arms when he is on his tummy. He likes to lay on his playmate and bat at toys and he's really into kicking those legs and is close to finding his toes! </div>
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He's also a pro at letting me know when he's totally <i>over</i> picture-taking... haha!<br />
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Baker is usually in bed around 9 PM and will give me a decent stretch the first part of the night. Some nights he's up around 1 AM and then every two hours after that, other nights he'll sleep until 2 or 3 AM, wake up to eat quick and then will go back down until 7 or so. I'm going to try and work towards a 7am - 7pm eat/play/sleep schedule, making sure he eats every three hours during the day (he sometimes stretches it to 4 hours) and takes more "scheduled" naps. Another big goal this month is to get those naps to happen in his crib. He slept for about 35 minutes up there this afternoon and played around for another 15 minutes or so before getting mad so it's a start I guess!<br />
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Another prominent change this month has been Baker's voice - he is really starting to babble and squeal! He also likes to "growl" and will carry on with the noises for extended periods of time. I even got his <a href="https://www.instagram.com/p/BdwJu2HBZ19/?taken-by=babybyoakley" target="_blank">first true laugh</a> on camera! It was THE BEST!<br />
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I could keep having babies and never get tired of watching them grow these first few months of life. I'm still amazed at how fast they change and learn new things. We love you, Baker. You continue to bring so much joy to our family and we're so lucky you're ours!<br />
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com1tag:blogger.com,1999:blog-2334204714283865402.post-3281719256766144212017-12-29T06:00:00.000-06:002017-12-29T06:00:21.669-06:00Baker the Brave | Open Heart SurgeryWe've had a crazy couple of weeks around here with Baker's surgery and wrapping up the holiday season. It's been 2.5 weeks since B's operation and while that's hardly any time at all, it also seems like it was ages ago. I think it's because life has picked up where it left off, like surgery almost never even happened. Baker has completely amazed us with his recovery - he spent 5 nights in the hospital and went back to life as we knew it, the noticeable changes being his emerging personality and heightened energy levels!<br />
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Doctors and other families who had gone through surgery before us talked about how fast these kiddos rebound but to see it firsthand is pretty amazing. We're so thankful for the team at <a href="http://www.stlouischildrens.org/">St. Louis Children's Hospital</a> and Baker's doctors here at home who all helped him have the best possible outcome. His repair looks great with only slight leakage around his reconstructed valves, which they'll continue to monitor for the rest of Baker's life. His heart defect usually only requires one surgery but should the valves worsen as he grows, it's possible he'd require another procedure years down the road but it shouldn't be anything to worry about now.<br />
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I posted to <a href="https://www.instagram.com/babybyoakley/">Instagram</a> and <a href="https://www.facebook.com/babybyoakley/">Facebook</a> during our hospital stay but wanted to document everything here, too, along with about 534256 more pictures... ;) This is long and there are a few pictures below that show his little body with tons of wires and tubes coming out so fair warning if you're not up for seeing those - just scroll on past!<br />
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<a name='more'></a><b>Monday, December 11, 2017</b><br />
After <a href="http://babybyoakley.blogspot.com/2017/12/kindness-is-cool.html">finally making it to our hotel</a> late Sunday night, I fed Baker one last time and got him back to sleep around 1 AM. He could eat up until 2:30 that morning and could have pedialyte until 4:30. We did a test run of the pedialyte which he promptly spit up so I knew I wanted to fill him up and let him sleep as long as possible before leaving for the hospital. We had to check in at 6:15 and had a long day ahead of us.<br />
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Baker woke up around 5:30 and was not a happy camper. He was hungry and we weren't able to feed him so it was tough. We tried to keep him distracted and he actually fell asleep again once we got in the car. The hospital was maybe 10 minutes down the road so it wasn't long before we needed to wake him up again for pre-op stuff like a weight check and getting his vitals taken.<br />
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I should have known he'd handle it like a champ but Baker was so incredibly calm. He blew me away. We checked in right at 6:15 and for the next hour and 15 minutes, B was so chill. He didn't cry. He didn't fuss. He wasn't upset.<br />
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His brave was showing and I couldn't have been more proud.<br />
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It was almost like he knew that we (I) needed him to be strong. Like he knew everything would be okay. It was incredible. Because he was calm, we were calm and comforted knowing he wasn't stressing. It also made it easier to say goodbye when it was time for him to go back to get prepped for surgery.<br />
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Letting him go was still the hardest thing I've ever had to do but the way the hospital handled everything and the fact that Baker wasn't crying made it bearable. We had our own private room and instead of having a dramatic handoff at the end of the hallway in front of the automatic double doors, like the ones you see in movies except THIS IS MY REAL LIFE, we were able to hug and kiss him before the anesthesiologist simply carried him down the hall.<br />
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We had time to collect ourselves before heading back to the waiting room where we sat for the next 4.5 hours. The hospital uses an app that allows a nurse in the operating room to update the family by sending text messages, photos and videos. We received an update every so often along with an actual phone call from his nurse about every hour letting us know how things were going and what the next steps were. It helped pass the time and was reassuring that we kind of knew exactly what was going on with our little man.<br />
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The app was handy because we could add our other family members (parents, brothers, sisters, etc.) so they received the same updates. It helped them stay in the loop and let us focus on Baker and not worry too much about updating everyone every time we got an update. We received some pretty incredible photos and videos from within the operating room, one being of Baker's beating heart after it had been repaired and he had come off bypass. I saw the video and immediately started crying - it was HIS FREAKING HEART and it was BEATING. On it's own. Like it should. I saved the video to my phone and still watch it every now and then.<br />
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After a bit, the surgeon came down to the waiting room to give us an update - everything went smoothly. We were moved up to the Cardiac Intensive Care Unit while we waited to see Baker.<br />
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It felt like we waited up there f o r e v e r and after Justin finally tracked a nurse down we were reunited with our boy. I had prepared myself for what he'd look like by following other kids' stories and seeing their pictures but it was still overwhelming. We both kind of stood back from his bed, peering through the wires and over the sides until his nurse told us we could touch him.<br />
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Music to my ears.<br />
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We held his hand and stroked his feet. I cried some more (shocker..) and told him how amazing he was. He was sedated and comfortable. They removed his breathing tube initially right after surgery. Our doctor explained that they try and do this so the child is intubated for as short amount of time as possible. Some kiddos do fine and don't have any issues while others struggle a bit to breathe on their own. After a few hours, the swelling in Baker's throat wasn't going down and because of his "floppy" airway (thanks to the low muscle tone associated with Down syndrome), he was having a bit of trouble so they reinserted his breathing tube. It kind of felt like a setback but it definitely needed to happen to give his little body some more time to rest and start the path to recovery.<br />
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They had put him back to sleep and given him a paralytic in order to reinsert the tube so he was definitely out of it afterwards but we knew he wasn't in pain. Poor kid had an IV line in each limb along with a central line up near his right shoulder. His chest tube and pacer wires were coming out of his chest along with his feeding tube, catheter, pulse ox and several other stickers for monitoring.<br />
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Justin and I were both able to sleep in the room with him at night which was good because neither one of us felt like leaving him. It was a long day but we were so glad to have him sail through with flying colors!<br />
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<b>Tuesday, December 12, 2017</b><br />
The next morning was hard for me, realizing that he was still hooked up to all of the machines and relying on the breathing tube. I had to keep reminding myself that it hadn't even been 24 hour since he got out of surgery and to give it time. We spent the quiet day next to him in his room while he rested up.<br />
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<b>Wednesday, December 13, 2017</b><br />
Slowly but surely Baker continued to improve! His chest tube and pacer wires were removed on Wednesday afternoon with talks that they'd remove the breathing tube that night. His labs were all coming back clean and his x-rays looked good.<br />
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For every poke and prod and test done, Baker earned a bead for his <a href="http://beadsofcourage.org/">Beads of Courage</a>. This is an amazing organization that allows kids to tell their story by collecting beads as symbols of their courage during treatment. We strung Baker's beads in a way that tells of his operation and hospital stay and I'm so glad we'll have this to show him when he's older.<br />
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By Wednesday night, Baker was continuing to make progress so they decided it was time to remove the breathing tube. He did really well and had a nasal cannula helping supply some additional oxygen.<br />
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This also meant we were able to HOLD him again! It was just as wonderful as I had imagined it would be. I mean, he's like legit smiling at me, right?! Happy to be back in mama and daddy's arms!<br />
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<b>Thursday, December 14, 2017</b><br />
By Thursday morning, Baker looked like a whole new kid. You could literally see him coming back to us as the hours passed. Wires were being removed, he was getting weaned off the oxygen and was moved from the CICU down the hall to the step-down unit.<br />
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He was also allowed to eat orally for the first time since surgery on Thursday afternoon. He wasn't liking the bottle but took to breastfeeding like no time had passed. I can't imagine nursing with a NG tube down your throat and a cannula in your nose was easy but he didn't seem to mind. After proving he was able to breath on room air, we ditched the cannula and we were one step closer to seeing that sweet face wire and tape-free. We also took this opportunity to give him a little sponge bath and change him into some clothes we brought from home. These <a href="https://www.carters.com/carters-baby-boy-sale-bodysuits-5/V_126G919.html?dwvar_V__126G919_color=Color&dwvar_V__126G919_size=3M#q=kimono&prefn1=websiteBrand&prefv1=Carter's&start=1">side snap tops</a> and <a href="https://www.amazon.com/Mombebe-Baby-Football-Leg-Warmers/dp/B0784S9JKD/ref=sr_1_1_sspa?ie=UTF8&qid=1514521788&sr=8-1-spons&keywords=football+leg+warmers&psc=1">leg warmers</a> were perfect for keeping him cozy.<br />
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<b>Friday, December 15, 2017</b><br />
Baker continued to eat well into Friday morning and even got some play time when the occupational therapist stopped by to hang out for a bit.<br />
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We also pushed that morning for his NG tube to be removed since he was nursing well. The doctors obliged which meant it was time for another photoshoot...<br />
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After rounds on Friday afternoon, there was talk of sending us home the next day. WHAT!? YES. As long as he had an uneventful night, we were outta there come Saturday.<br />
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<b>Saturday, December 16, 2017</b><br />
We woke up early on Saturday morning to Baker's beautiful smile. Seriously, this kid. Again, it was like he <i>knew</i> we'd get to bring him home this day. Never in his life had we seen smiles like this. It was like you could just tell he felt <u>good</u>. You could look in his direction and his face would just immediately light up. It was the best thing ever, ever, ever.<br />
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The cardiologist on staff that morning quickly cleared him to be released. Just like that. 5 days after open heart surgery.<br />
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We couldn't have packed our stuff faster! We anxiously waited around for our nurse to get our discharge papers and go over a couple of things with us. We were giddy and sooooo ready to get him home.<br />
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He was ready, too!<br />
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It was a whirlwind and we even made it home in time for <a href="https://babybyoakley.blogspot.com/2017/12/leighton-three-years-old.html">Leighton's birthday</a> the next day. Baker continues to do well here at home. We've seen both his regular cardiologist and pediatrician since getting back. He's now officially off all medications, his scar is healing well and he continues to thrive!<br />
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It was truly amazing to see him bounce back after such a major operation and I'm still in awe of him and the way he handled everything. We're glad the staff stayed on top of his pain medication, we never once thought he was in pain or agitated. Even once he was extubated and the sedatives wore off, he didn't really whine or cry the entire time. Again, showing off that brave of his...<br />
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We sure do love you, warrior boy, and we're so glad you're ours.<br />
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-vjBV47wykfc/WkXLdz2fj3I/AAAAAAAAJpk/KlBNbZBLDLo4DCF3StpEXRkhy823ofE1wCLcBGAs/s1600/IMG_6262.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" src="https://1.bp.blogspot.com/-vjBV47wykfc/WkXLdz2fj3I/AAAAAAAAJpk/KlBNbZBLDLo4DCF3StpEXRkhy823ofE1wCLcBGAs/s1600/IMG_6262.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">one week post op (December 18th) </td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-kvYpIXHBwds/WkXLd8sPeqI/AAAAAAAAJpo/XrzZATjtatAso9f4QioUgIf9aPV-ATUpwCLcBGAs/s1600/IMG_6554.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1202" data-original-width="1600" src="https://2.bp.blogspot.com/-kvYpIXHBwds/WkXLd8sPeqI/AAAAAAAAJpo/XrzZATjtatAso9f4QioUgIf9aPV-ATUpwCLcBGAs/s1600/IMG_6554.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">two weeks post op (christmas day!)</td></tr>
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<br />Mackenzie Oakleyhttp://www.blogger.com/profile/01609546964037421374noreply@blogger.com1