Ryanplus1 Photos & Videos on Instagram

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ryan.plus.1

Baby: @xoxo.love.tiffany & @derek.mcginnis Shirt: @alilsomethingextra321 Disposable undies: @honest 💙💛

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ryan.plus.1

We can get with this label. 😉😄

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ryan.plus.1

*Most days I’m pretty positive. But if I’m being honest, some days I feel completely guilty for thinking I don’t want to do this anymore. And I’m afraid that this is the easy part when I’m thinking that. And then I think, when you’re a parent, you don’t give up on your kid. The past couple days I have literally been falling asleep holding the bottle and waking up to realize the nipple actually shifted from his mouth to the pillow. 🤦🏻‍♀️ I think I’ll have it together by tomorrow. 🤷🏻‍♀️ Also, this is his happy place these days and we don’t do a lot in this place. Also makes me feel guilty. But, whatevs. We’re tired.

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Because TAKE US BACK TO FRIDAY when it was so sunny we couldn’t open our eyes up all the way and we could lay in the grass! 😩 #ComeBack

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ryan.plus.1

Just gonna chew on this and make a mess. 😏🤷🏻‍♂️

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Hey girl! Let’s #cuddle and watch #Disney movies. 😏😘

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Until we’re doing more, just pics of Ryan’s sweet face! Day two home was much better than yesterday. Doesn’t seem so irritated when I move him, not as much at least. Ate a little more than yesterday. The doctors really want him eating 100 mL every three hours - but after thinking and worrying - he wasn’t even eating that much when he was discharged. So, yes, that can be our goal, but crazy to expect right now. He’s having about 60 every 3.5 hours. He is ALWAYS chewing on his hands/socks on hands! I hate always having his hands covered because we can still work on grasping - but I am urging him some slack so he can heal and he just keeps digging into his face! We did have to give the cardiologist a call today because his feet were pretty blue and cold, so we’re going to get checked out tomorrow. Cleaning his cut went over a little better today - it still makes my heart feel all light and fluttery when I have to touch it. Lol. 😖 Other than that, he’s still doing good!

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April 10. 5 months old! Day 1 home from open heart surgery - this picture sums it up! Every move I made - cry. Not eating how I would like him to. The scooping to pick up is going to be the death of me. I’m more afraid to do anything to him than when he was a newborn! I’m pretty sure he’s still 12 pounds. He’s just chewing his milk! It’s driving me crazy. I get the heeby jeebies when I have to clean his incisions. The good thing is that he is so much more smiley and talkative! Today was a challenge. 😕

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I’ll give you ONE GUESS what we got to do today!! 😍

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It’s the little things, like a smile. Ryan’s smiles have been giving me life the past few days. Look how happy he is to see dad! What dad said 👇🏼 - our guy has come such a long way in a short period of time! I can’t even believe it. I had a tubal done and thought I was having a heart attack for two weeks. 🙄 #Repost @derek.mcginnis ・・・ Our boy was looking a lot like himself today! My first time seeing him since Friday and he’s come a long way in a short period of time! Hopefully checking out later this week so it’s very exciting!

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I hate leaving this guy because my mind immediately starts thinking what does he think? Does he know? What if something sudden happens? Who plays with him? Does anyone talk to him? Does he get held to be fed or just feed in his bed? Is he just listening to those Disney movies on that speaker remote all the time? Is he just an alarm? So many things. God knows I cannot wait to bring this boy home. He is too far and I am not in his face enough! I need an Eskimo kiss! I know. I k ow. He’ll come home when he’s ready. I’m just saying - I want him now! 🤣 It is so crazy that under that shirt there are still stitches! Which I know I know he’ll have for a while. It just blows my mind. He has done so much in 5 days!! He’s my hero!

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No tubes!! 😍😍 He is so stoked we’re here! Now, 3 days after coming home I bet he’ll want to be on vacation! 🤣🤣

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Ryan’s lung is 1,000 times better!! It’s open! When I was there he was coughing and spit up some funk, so I’m thinking that helped too! After he did that he was wide eyes and talking! So it was a day for him, but doing so much better! He’s got one of his chest tubes out and his pacing wires out too. He’s eating good from the bottle. So excited! They’ve got his IV drops off, so he’s not constantly getting medicine. He’ll get whatever he needs every 8 hours from his nurses. So all those things lit up green were giving him medicine, are all off now! He had that diaper on his foot because he figured out how to kick that IV on his foot out. 😂 Guys, he has pulled just about all these things off him and these nurses are fast to catch him. But that feeding tube lost the battle, he didn’t have to get it back in since he’s eating well from his bottle. 😁❤️ So all good news now! 🙌🏼 It’s because I held him today. 🤣😉

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Hey guys, so finally Ryan’s sweet face! Ryan got his breathing tube and catheter out today! That means he is breathing and peeing well! He is coming off of sedation so he is in and out of it. He’s still in the PICU but doing really well! He’s still got his central IV line, which is on his neck so he won’t move to his step down unit until that is removed. There is a study they were asking if he could be a part of, it’s nothing big, but does require an extra pole to draw blood and as much as I’d love to help with the study, I don’t want him to get an extra poke at this point. He was looking at me while we were talking about it and you guys, he was telling me don’t do it. I know it. I was talking to him after. Y’all, there is NOTHING more heartbreaking than your baby looking at you with tears eyes knowing they have the ability to smile and just looks at you like that not able to make a sound. Absolutely nothing. I cried just thinking about it again. I can NOT wait to hold this guy again. Still so proud of him. Still love his nurses. Still so happy for him. I would however be just fine if he never has to look at me like that or ever go through anything like this again. Also, swipe to see how big he’s gotten since birth. That monitor on his head looks so much smaller on his big head now. 🤣

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Good morning guys! So, Ryan made it through the night! 🙌🏼 And through his prime time. He started waking up last night so he got more sedation and pain control. His blood pressure dropped at his slump time, when if anything terrible would have happened that’s when it would happen. So thank that it was something that could be fixed and it didn’t seem like it was too critical. He has medicine to help with it now, and it’s a temporary medication. A drop in blood pressure is typical after heart surgery. When we got there this morning I just know he could hear me, his eyes were opening and looking around. It was the hardest thing to leave him. I’ll be going back soon though and hopefully/prayerfully we will be getting his breathing tube out today. He has been exceeding his goal to breathe on his own, but we are hoping that when it’s time to get it out that there won’t be too much inflammation there so he can keep breathing and not have to put it back in. When we were there, they were cleaning out some congestion from it and he didn’t seem to like that very well. He was really moving around when during that. I’m sure if he could have cried, he would have. 😢 I’ll be happy if it’s gone later! . . So that red band on his ankle is his blood transfusion band because a part of the surgery is to get blood transfusion because he’s so small. That tube next to it is his catheter. That’s important because it measures his output. Very important because if he doesn’t have a lot of output, it’s the first sign of heart failure. Good thing is, every time I look at it, he’s got a good amount collected in there. And the padding on his foot is just an ID band covering his pulse oxygen monitor. . . I will get a call when the doctors come around and decide to take the tube or not. For now we’re back in our room. The girls will get to play and swim and stay here with dad when I go back. Olivia is especially over the hospital stay. But they’re doing good. But bribery works. 🤣

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You guys, we got to go check Ryan out in the PICU where he will be for the next couple of days. In there he’s got the worlds best nurses and a doctor close by keeping an eye on him! He’s out of surgery, but we’re not out of the woods yet - the 12 hours after the surgery are most critical and if anything wants to turn sideways, it will be tonight most likely. His little body is adjusting to the surgery. So what went on in surgery was they made a patch to close the large hole he had between the bottom two chambers of his heart, also correcting the overriding aorta so that it is now only over the side it’s supposed to be over. They made that patch with his own heart! They also repaired his pulmonary valve that was stiff and thin to push blood out of his heart. This also will help his heart to be a better size on the right side because it was getting bigger from working extra to push through that stiff artery. And they also cut away some of the excess muscle that was on the right side of his heart from working extra. 😅 . . But y’all, he is looking amazing right now. We should expect some swelling later on/tomorrow. But for now the nurses have taken amazing care of him. His cords are all organized and he looks so peaceful. His tube doesn’t look horrifying. It is currently breathing for him so keep praying that through the night he transitions pretty well. Day by day they will remove the things he is connected to if he keeps doing well. So, he’s got a breathing tube, a couple of wires connecting to his heart in case it needs a pacemaker, a couple IVs, oxygen monitors, feeding tube, etc. But with it all, I’m so happy with how he is doing in there. Probably be a little anxious overnight, so I can’t wait to go check him out tomorrow. . . The girls have been as patient as they can. I won’t be surprised if 2 minutes in that place is long enough for them tomorrow. We will see. But they have the option to hang out with me or dad and they are loving the pool. So proud of them for hanging in there with us! . . Pictures, one of Ryan’s IVs - and I bet those initials are his surgery nurse Violets. She is so sweet and has been amazing to us since we met her. ❤️💙💛

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downwithaj

Today we send our thoughts and prayers with @ryan.plus.1 as he recovers from his OHS. Surgery was successful, now on to a fast and easy recovery. From one homie to the next. #homieswithextrachromies #ryanplus1 #theluckyfew #theDStribe 💙💛

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Is this not the cutest sad bunny face you’ve ever seen?? I’m melting! We got an update on Ryan. He is off bypass. There was a little bleeding after so they were getting that under control and closing him up now! The surgeon will be in soon to tell us all about it! So proud of our little guy! I miss him! My alarm to feed him keeps going off every few hours. And as I was typing this the surgeon came in! Ryan is out of surgery! He did great! Now they are transferring him to the PICU and we should be able to visit in a little bit. But we’re going to our hotel for a while to relax and let them get settled. I can’t wait to go see him, even though he will be sleeping until tomorrow. Still excited! I’m literally bawling thankful he did great and he’s doing really well right now! I had to hug his surgeon; she’s awesome. And her nurse is amazing! Well give you another update when we visit him later! Til then, we’re gonna take a break! ❤️❤️❤️ Love you all and thank you all so much!!

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When you haven’t eaten since yesterday so you’re thinking about how good that hand might be. 🤔 Guys, Ryan just went back! I miss him already! I want him to come back now. 😢 I’ll get updates throughout the surgery, so praying for good news all day. He won’t be out of surgery until about 1 and even then, they will keep him asleep for the rest of the day and through the night. Probably the longest 6 hours of my life, but I’m going to try to sleep it away. We’ll see. Also, we want to THANK EVERYONE for your love and support for Ryan!! It makes us so happy to see all the love for him! Well let you know as soon as he’s out! 💔🔜❤️ I want to say the surgeon doing his repair has been in the game for 20+ years...I think. I’m pretty sure! This is what she does - so thankful for her and I know they’ll do great. ❤️❤️❤️

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So we were doing PAT from 9-2! We were all starving by the time we got out of there. They wanted to do an extra respiratory panel to make sure he didn’t have any viruses because he was coughing. So we just got the call that all that was negative and he is ready for tomorrow and we need to be there at 530A! *gulp. He should be out of surgery around 1 - that’s the plan anyway. Good thing is, we will get our own private waiting room while surgery is going on so hopefully I can sleep away the waiting. . . I had to put the hand cover onsie on because he about gouged his eye out! 🙄 I hate covering his hands because he loves his hands. But when he is tired he grabs at his face a lot and doesn’t know what his hands can really do. He scratched his eyeball the other day. . . So we’re on the way to the pool now so we can wear everyone out so we all can go to bed early tonight!! 😄😉 Also, glad Bella and Olivia can have some fun; they were very patient today at the hospital.

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We’re at @nortonchildrens doing preadmission testing for surgery tomorrow. So far, everything is a go and we’re just waiting on the team to come talk to us about tomorrow. They had to get some blood today. —DID YOU KNOW?! That the first try is to draw blood from the baby’s head?!?!!! Not even kidding, before they were gonna get the blood they let Bella and Olivia go to the play room. And I saw what they were about to do - I said, maybe I should go to the play room too! And cried. And then Bella said, Mommy I can hear Ryan. And thanks Bella, I already knew! She put the icing on. Lol. So I came back because I needed to see if he was okay because he wasn’t in my head. But when I got back, they were getting the blood from his hand. THANK GOD! Because I wasn’t ready for the head poke. So, at this moment, I’m glad my kid is a wiggler. Lol. He had a catheter for a little while for urine. But that’s all the mean stuff for today. Hoping we can get a little play time in at @downsyndromeoflouisville with his friend Hannah! If he’s up for it. He fell asleep waiting for the team. (It’s probably better, he doesn’t need to hear what’s going down 😉). I know I’m gonna hold him all night tighter than I do every other night. 💙💛

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Also! My sweet friend @threeislove made this awareness picture to use while Ryan is in the hospital and recovering! For the time he is having surgery and staying in the hospital we changed his hashtag from #RyanPlusOne to #RyanPlusME so whenever you post a picture and think about Ryan you can use his tag! You don’t have to be wearing red or anything. Even just a random pic of the sky. If you’re thinking about Ryan, tag us! We love all your love and support!!!

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Relaxing by the pool! It’s a spring break/hospital stay mashup! What perfect shirt for Ryan! #BraveLittleGuy We’ve got preadmission testing tomorrow, day before open heart surgery. Hoping and praying all is well and good to go tomorrow. Also, I am doing awesome guys. I am not crying my eyes out about this. I’m so proud of myself right now. We have faith in the big guy upstairs and also our little guy! 😉😌💙💛

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Did I put Ryan’s accountant outfit on just to take a picture of him reading his newspaper and drinking his coffee? Absolutely yes! He said you only have 18 days left to do your taxes and if you do your federal with him he’ll let you get your state done free! 🤣🤣

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March 28, 2017 - the day I confirmed I was pregnant with Ryan. I had already suspected it because I was working in what seemed like a baby factory because literally every woman was pregnant in that place. I was doomed. Also, @ari_arielle, my bonus child’s mom, was pregnant and that’s just how we do things I guess. Lol. Our last two pregnancies were literally within weeks of each other. She was definitely in the top two people I told. . . So this test was my “ticket to Italy” I suppose”. But I was low key freaking out about being pregnant again. I had mixed feelings. I was and wasn’t ready. I was and wasn’t happy/excited. It took a while to grow on me also literally. 🤣 Let me tell you, the sickness with this pregnancy was TERRIBLE. I threw up a number of times IN MY CAR! And one time I wasn’t even ready and had to go home and change! Attached are old Snapchat stories of the struggle, around 20 weeks along, which is funny because Ryan is 20 weeks old! As you can see, I had high hopes for him. Lol. That was before we got the diagnosis. Then I blamed his diagnosis on the Starbucks. Not even kidding. Now, I still have high hopes, just different high hopes. And, yes, we’re fun and always on the bright side. But DAILY I go through my fears for Ryan. We just choose happy and whatever hurdles come we’ll jump when we need to. And probably not jump high enough the first time. 🙄 . . The pregnancy was terrible. But I would not have even changed a thing about that. It was a vital part of this life and I am in fact thankful for that season.

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That moment when your kids legs are actually big enough to keep socks on snuggly! 🙌🏼 No sock gaps. 😄🤓

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I can’t stop doing this! Yes, this face is necessary. 🤷🏻‍♀️ #drippininfinesse #itdontmakenosense Guys, one week til preadmission testing and I’m not even freaking out. There will be a poll for when you think the flood gates will open! 🤣 Or I can handle this whole thing like a big girl. 🤷🏻‍♀️😂

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Rainy day and freezing out so we stayed in all day and Netflixed and napped and chilled. 🤷🏻‍♀️

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Im exhausted. It’s possible I fall asleep during this post and you get it tomorrow. 🤷🏻‍♀️ So, we had a major appointment today. Of course, it seems our appointments and terrible weather are in sync. 🙄 We drove through a snow storm this morning to Ryan’s appointment. Today we met the surgeon that will be doing Ryan’s surgery! I must say, I wasn’t surprised ether, our @thedsdn group has been an amazing road. I’ve gotten to see other sweet babies and their mommas make it through this part and kind of know what to expect. The major things they are going to do are use the outer part of his heart (the pericardium?) to make a patch to close the hold between the bottom two chambers, the other thing is they are going to check out the valve to the arteries? where blood is building up because it’s stiff and narrow and see what they need to do in there. Repairing those two things will help with all the things wrong with his heart. They will also probably take some muscle off the right side since it’s working harder than it should and it’s bigger than it should be. They will actually stop his heart and have him on oxygen and blood while they do the repairs. He’ll be getting a blood transfusion because he’s just a baby and will need it. There are so many other things the surgeon said that will surely come to me later. I’ve already almost dropped my phone in my face at least four times. I’m exhausted. I could not keep up with today! I’m so happy today was World Down Syndrome Day! I think all the positivity, love and support really helped me to not overthink this surgery and just sulk about it. It’s only A WEEK AND A HALF AWAY GUYS! I’m not freaking out yet, but it’s coming. So, the second pic is when he was about to get his chest X-ray! I’m SO THANKFUL how easy that was. Let me tell you, I have seen some terrible looking contraptions that babies have to go in for chest X-rays and was not looking forward to this at all. So I’m SO GLAD all he had to do was lay down to do it. . . Also, THANK YOU to everyone who celebrated #WDSD with us and especially thank you to everyone always loving and supporting Ryan! It really means the world to us! Happy World Down Syndrome Day!

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We are finally home! We’ve had a long day and I could use a nap! But! You guys! I had the ugliest cry, uglier than any episode of This Is Us! All the love and support for Ryan and so many crazy socks and blue and yellow just opened up the flood gates. Here are our socks and even dad participated (swipe left) at work! I’m so proud of Bella and Olivia - Bella’s been reading 47 Strings and Olivia sits and listens. They ask questions and were so excited to rock their socks and were ready to let everyone know about Down syndrome. I’m so proud of dad for wearing those crazy socks period (WITH SHORTS ON for all the world to see!) and even rocking his shirt today for Ryan!

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Let’s see em! Tag #ryanplus1 Wednesday (maybe today) (maybe tomorrow) with pics of your socks! 💙💛

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Fact (that I was gonna share the other day, but fell asleep before I could even touch my phone): check out these abortion statistics - Iceland 100%. Denmark 98%. France 77%. US 67%. Those are abortion rates for after getting a diagnosis for Down syndrome during pregnancy. While the prenatal testing is never 100% accurate, it’s gotten pretty close to being right most of the time. Let’s hope these rates dwindle down. . . A lot of parents are given the option to terminate their pregnancies after the diagnosis. And sometimes at every appointment after! Even after 20 weeks! Isn’t that crazy? I can’t help but be afraid that the reason why anyone gets a prenatal testing very early in pregnancy is to find and eliminate. Just because it happens. . . Plot twist: I think that if a woman wants to have an abortion, that’s fine. Pro-choicer here. But not just because a baby will have Down syndrome. That makes me sad. Also, I am not going to sit here and say I didn’t think terrible things on my hour long drive home from my diagnosis appointment. I did. I was so afraid of what would happen when I broke the news. I was afraid of it all. . . Truth is: Down Syndrome can NOT be eliminated. It’s a God thing. Sometimes all markers and everything is undetected and we don’t find out until birth, sometimes days, weeks, months after birth. I would say I don’t know what people are afraid of, but I do. But also, I know what 100% of people who have terminated because of a diagnosis will never know how insanely positively life changing their babies with Down syndrome could have been to them and the world around them. I’m hoping that the world will see the difference and accept it. I mean, look at this kid - I saw the back of his head in utero (because he NEVER showed his face) and would not have even done an amnio to risk his life. . . Also, TWO DAYS til World Down Syndrome Day! You MUST wear blue/yellow and or CRAZY SOCKS! And use the hashtag #RyanPlus1 so we know it’s real!! 🤣💙💛 . . Also, P.S. somebody tell Iceland that the DS fairy called and said they can’t get rid of DS. 🙄

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I meant to post this yesterday! I’ve been busy, kinda. Busy in Silhouette Studio designing shirts and stuff! I’ve got 4 out of 5 shirts made! And I’m super proud/excited for them! I am pretty sure WDSD is my second favorite holiday now. 🤷🏻‍♀️ Anyway - happy belated St Patty’s Day! We are The Lucky Few! I also made this shirt too. Lol. Here’s the perfect message for St. Patty’s Day, author unknown - “Who knows why Down Syndrome occurs? Why does the extra 21st chromosome stick to the cell when the fertilized egg begins its first cell division? It can be compared to what happens in nature to a field of clover. Usually, we see 3 leaves on each clover. Once in awhile, however, we find a clover that has an extra leaf- making it a four-leaf clover. We don’t know why Mother Nature decided to add that extra leaf; she just did. There is no obvious explanation- all of the clover plants grew in the same soil, were exposed to the same sun and rain, etc. Mother Nature just decided to add an extra leaf to one of the clover in the clover patch. This doesn’t make it better or not as good as the other clover- it just makes it different. Some people even believe it brings a person good luck when they find a four-leaf clover. It is much the same way with the extra chromosome. We don’t know why Mother Nature didn’t let the cell divide evenly, but she didn’t. She decided to add another chromosome to that baby’s cells. It doesn’t make the baby better or not as good as the other babies- it just makes him or her different. And if you find one of those babies, you are truly lucky for they are very special babies- who grow into very special people.”

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Fact: I had some pretty good statistics typed out for this and then had to do other things and now it’s all gone. So today’s fact , you’ll get tomorrow because I’m salty. But, #dadtricks got me a smiley pic of Ryan!! 😍

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Fact: Down syndrome can be hard, but we love Ryan for exactly who he is! . . Remember when I got the prenatal diagnosis and then had to go to MFM every week, sometimes twice a week til Ryan got here and I HATED all the stupid ultrasound pictures they gave me because well I was so over it all and they always said like - toes, hands, ear, nose...😒 Here are just a few of the collection of pictures I have. I still saved them because even though I hated it and it was hard, even after the diagnosis, we were still excited to meet the guy. We were still in love with him. . . I’ve been working on this for like two days! I made him a shirt for World Down Syndrome Day! And working on one for his sisters too! It’s frustrating learning the machine, but I’m getting it. Lol. I’m so proud of this shirt though. Lol. 💙💛💙💛

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We got our socks delivered today!!! 😬 One step closer to #WDSD! Ryan’s socks are totally appropriate! Especially with today’s (hot poopy) mess! Sneak peek of the rest of our socks if you swipe left! Thank you @johnscrazysocks !!! 💙💛

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Fact of the day, we’re going into detail about low muscle tone - no fancy pic to go with because we are currently waiting for our car. So, let’s talk about low muscle tone not to be confused with low muscle strength! Our kiddos have low muscle tone, but believe me, that should not be mistaken for strength! Let me tell you, even I said - what low muscle tone? because he’s a strong little guy. Low muscle tone means that there is not enough tension in the muscle when it is resting. The low tone causes a slow reaction to a stimulus and can’t contract for as long as a typically developing child. Kids with low muscle tone have a hard time maintaining posture without support - so the sitting up milestone is HUGE for our kids! Muscle tone is controlled by the brain unconsciously and is not something that can be changed. HOWEVER, strengthening the muscles, actively contracting the muscles, can compensate for low muscle tone. So, when we do therapy, we are strengthening Ryan’s muscles to make up for his low muscle tone. He is going to be a strong guy. No doubt about it.

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Started our day with a LONG POINTLESS genetics appointment. 😒 Don’t even get me started. BUT, we came home to a mailbox full of goodies!! We got our sweet gift from @alilsomethingextra321 (this super cute shirt!) It’s so cute I think it warms my heart to “UP syndrome”. I’m neurotic and like things to be called what they are. Yes, I’m coo coo. But this is such a cute shirt, I couldn’t even wait to put it on Ryan! P.S. GIVEAWAY going on RIGHT NOW on their page! Go enter! 🙌🏼 We also got our information resources to give to families and healthcare providers about @dsdn! Eyan was even blessing them! 🤣 Y’all, if you have a kid with Down syndrome and don’t know about the Down Syndrome Diagnosis Network, get to know them! This has been a staple network in our journey. There are groups for ALL! Moms and dads. We literally laugh and cry together - it’s insanely crazy how you can be so connected to people all over the world and it’s not just a “connection” - there is a connection! Lol. I love this network so much! 💙💛

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First of all, there are NO WORDS for the amount of overwhelmingly loving support Ryan gets! It fills my heart. I am so so so thankful for each and every one of you all that support and follow Ryan! Y’all just don’t know! Ryan is set up for success with just that alone! BUT that’s not all! Our state has a program called First Steps which is a program for kiddos with disabilities, not just Down syndrome, that prepares our guys and gals for preschool! Our developmental interventionist (DI) will give Ryan a little therapy and if she ever feels like he needs more, then his team will grow! This DI is specifically from the @downsyndromeoflouisville - so she specializes in kiddos with Down syndrome! 👌🏼 How awesome is that! We love our DI, I even asked if she could come and talk when he’s healing from surgery - they are required to take a 6 week break. 🙁 And finally, Ryan has the upmost stimulating environment and family at home - he might turn it nutty like the rest of us! 🤭🤣

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Just got this sweet gift from @alilsomethingextra321 today!! With a sweet note included! This is just in time for our next couple of Weeks and surgery soon! Starbucks is my fuel! And that cup is venti! 😂 Thank you so much!!

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Did you see that? “ALL” people with Down syndrome experience cognitive delays. That’s a hard pill to swallow. No parent wants that for their kid. However, the key word isn’t all, it’s delays. Delays just mean it could take a little longer for our kiddos to get there - not to be confused with unable. P.S. Keeping up with these daily facts is some work! As you can see, the later and later daily posts! Maybe I’ll do better tomorrow, but we’re starting our day off with an appointment! These next couple of weeks are super busy! 😕 💙💛

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I only have 45 minutes left in the day! This guy is FOUR MONTHS today! He is getting ready for his big surgery, just a few weeks away!! 😧 He is excelling at tummy time, rolling from tummy to back, and back to tummy assisted. He loves to clasp his hands together and put them in his mouth. He is a pretty happy fella. He sucks on the phantom bottle when he’s hungry and will cry when he is hangry! He’s almost got the reaching and grasping down. I think just a week or two and he’ll have it. He did an amazing smile the other day, and does them still but always too fast for me!! 😑 And he will talk your head off! He has the stinkiest gas. 😵 And he has been awake a lot more, so keeping me busy! His peak time is 6:30 AM right now, Week need to change that! I’m over it. We’re so proud of our guy and his smiles are the best! 💙💛

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People with Down syndrome can do ANYTHING you can do! I often hear rants about moms of babies/kids with Down syndrome being told unsolicited stories about how the storyteller knows that a person with Down syndrome works at the local supermarket and that said person with Down syndrome is super sweet. What’s the rant about? I’m often a little confused because the person is working and friendly, etc. I guess it’s because the storyteller might be putting a limit on the person with Down syndromes abilities? I’ve never asked, so I don’t know. I feel like it’s taboo to ask what the fuss is about. 🤷🏻‍♀️ Truth is, what would society be without our people with disabilities, not only Down syndrome, working these positions? Truth is, people like me and you are too good and prideful to accept a minimum wage position. The way I see it is these guys are so proud to work and be included and accomplish a goal, it’s not the end for them. Just like it’s not the end for me or you. World Down Syndrome Day is March 21 and the cool kid thing to do is wear crazy socks! Who is participating?? Raise your hand! I’ve got our socks ordered from @johnscrazysocks, you should too!

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It’s so crazy that when I was born the life expectancy for people with Down syndrome was only 25 years! I love how far times have come! Expected a whole nother lifetime and more! 🙌🏼 Swipe to see how we think Ryan will look at 60 years old! 🤣

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There are a few common characteristics that people with Down syndrome have (see picture). I think this is why people with Down syndrome prefer the people first language. Because the characteristics are sometimes obvious and seeing that person as Down syndrome before the person can be judgmental. The characteristics do not define the person; every person is different. Every person has their own journey. Every person will have their ow personality. (Also, NOT ALWAYS happy!) I think one of the things on the list of what NOT to say to a mom of a child with Down syndrome is that the child “doesn’t look like it”. That doesn’t matter. It doesn’t make anyone feel better. It’s an observation...most babies you probably won’t even be able to tell the characteristics. If someone says that like it’s a good thing, it can be hurtful because, what if the child did look like it? They wouldn’t be cute anymore? Ryan is the cutest baby on the planet, even when it shows. I’m in a huge group of moms with babies with Down syndrome and EVERY SINGLE one of these babies are cuties and they all look different!! So, while we have some same characteristics, it does not mean everyone is the same. What I do appreciate is when we are at an appointment and the doctors let me tell them that he has Down syndrome, and they don’t say he doesn’t look like it - they say they suspected it but weren’t sure. But I understand when people mention it or something related, it’s all in good spirits. One characteristic is upward slanting almond shaped eyes, Ryan has that...but he’s also got some Asian in him. The characteristic that I notice most, that others probably don’t, is the low muscle tone in his shoulders and arms. Let’s not look at people with Down syndrome and automatically think Down syndrome or happy. Happy is the biggest myth. Ryan is the hungriest male I know. However, we are blessed to have Ryan. Because a person with Down syndrome can really change your life. And he can’t even talk. He can barely smile! But I know when he wants to. Lol. I think that got off topic, but 🤷🏻‍♀️. The fact is the important part. The rest is opinion. Lol. Also, Ryan thinking about sleeping. Typical.

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So there is a campaign called R-word! Fact is, today is “Spread The Word to End The Word” day. The r-word is the word “retard(ed)”. This word is exclusive, offensive, and derogatory. The campaign asks people to pledge to stop saying the r-word as a starting point to creating more accepting attitudes and communities for all people. I don’t care for the word; however, I made my pledge to stop the use of the word. Why? Because it’s almost always used to describe something dumb or something a person doesn’t like. That’s offensive to our community. And if this could ever one day offend Ryan and I have to witness it - I’d be pretty heartbroken. My hope is that he will never know the word or have to hear it. The goal for his life is INclusion, not exclusion. Have you pledged to end the word?? Make your pledge at www.r-word.org ! 💙💛 Also, pic of his face because I love it. ☺️

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People with Down syndrome have an increased risk for certain medical conditions such as CHD, respiratory and hearing problems, Alzheimer’s, childhood leukemia and thyroid conditions. Many of these are treatable, so most people with DS can lead healthy lives. I’d say DS is a pretty complex condition. It’s a lot to deal with and a lot to leap up with. So, for now Ryan has a CHD and reflux issues. And as you can see how late I’m posting this! It’s been a long day! A lot of kiddos with Down Syndrome have to have open heart surgery wishing the first year of life, sometimes multiple surgeries! And what makes these guys sting is that it is unbelievable that they can even live with a heart defect! I can’t even imagine. Can you even imagine your heart working double and you’re not even working out?! That’s just one thing to think about - their immune systems are pretty vulnerable. They’ve gotta deal with reflux. I don’t even want to think about leukemia. There’s no telling what medical conditions Ryan could develop; were just thankful that for right now, it’s not the entire list! 💙💛

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A little late today! BUT, without further ado, here is your fact of the day! Down syndrome is the most commonly occurring chromosomal condition. About 1 in 700 babies are born with Down syndrome in the US. Ryan is 1 in 700. Truly the lucky few! Check out the last pic, I got him halfway smiling! He was smiling so big today, but of course it was off cam. 🤷🏻‍♀️ I also love it when his eyes are open so big!

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These teethers!! 😍😍 I’m sure Ryan is far from teething, but I still love these! I won’t only use these for teething, but touching, grasping, feeling, reaching - you name it. I hang these things on his stroller so he can look at and reach and grab at them. I hang them on the side of his pack n play so when in there can see, reach, and grab, especially while doing tummy time. I use them when he’s laying on his back to place on his tummy and lips so he can feel a different texture. I pry his hands open to hold them because it’s so cute! But more importantly he needs to learn to grasp and open and close his hands and hold things. I love them, next thing I’m gonna get is a wooden teether with crinkle paper! I just can’t decide between the elephant or the cute bunny ears! They’re on @hellomylovedesigns !

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So, now that tummy time has improved, we’re working on realizing we have arms and hands that actually do things!! Let me just tell you about Ryan and his hands. First of all, when he knows he’s getting a paci or bottle, if he gets his hands together and to his mouth, you WILL be fighting to get them apart or him to move them away. This is a time when I’m thinking who lied about the low muscle tone?! 🤔 He has a TIGHT grip and you will be prying his arms and fists out. And second of all, Ryan’s legs are much stronger than his arms, so I think when he wants to grab something, he kicks his legs around and that’s why he’s so wiggly! 😑 I think so because when his toys are hanging and he is focused on them and thinking about them, he kicks uncontrollably and I think it’s because he actually wants to touch them. He doesn’t always know what to do with his hands as seen in these pictures, he only reaches in the center when there is a bottle or pacifier there. So I’m working hard to get him to grab and touch and reach.

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There are three types of Down syndrome! Trisomy 21 - most common, 95% of cases. This is when there are three, rather than two, number 21 chromosomes in every cell of the body. This is what Ryan was diagnosed with. Translocation - 4% of cases. This is when a part of the 21st chromosome breaks off and stick to another chromosome, typically number 14. Mosaicism - 1%. This is when the extra chromosome 21 is not present in all cells of the body, causing a mixture of some cells having 46 chromosomes and some having 47. Here’s the kicker. I’d be lying if at first I didn’t feel like I wanted Ryan to have Mosaicism Down syndrome because I thought it would be easier. But guess what, it doesn’t matter - you either have Down syndrome or you don’t. There’s no in between or meter on how easy or hard it will be. You’re either gonna work hard or you’re not. I think that’s the same with typical kids. Also, pic of Ryan because I gotta keep your attention!! 🤣🤩💙💛

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And, this is Bella now! The baby in the previous post! 😍

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I feel like I have slacked on the gram today! I posted on Facebook! And I was napping with Ryan! Lol. Anyway, so in light of World Down Syndrome Day coming up, I’m sharing a fact a day until then! So the first fact is that World Down Syndrome Day (WDSD) is on March 21 - 3/21! The reason why is because when Down Syndrome occurs, there are three copies of the 21st chromosome when typically there are two. It’s also called Trisomy 21 or T21. So, typically we have 46 chromosomes in our DNA, but in Down Syndrome there are 47 chromosomes. #swipeleft for a NEVER BEFORE SEEN picture of Ryan’s DNA also called karyotype. I have been saving this picture for months to share with you all! I thought it was so cool to see his DNA all paired up. Check out the 21, there are three there. 😉🤟🏼✌🏼☝🏼 💙💛

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Ryan did a WHOLE HOUR of therapy today without whining! He did awesome. I do think he tried to stop the session a few times by tooting - they are potent. Poor Hannah. Nothing compares. It’s terrible. She knows his tricks. Our next milestone is knowing what our hands can do, arm strength, and side lying. P.S. This nap is from yesterday!! 😉 Still cute though!

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We got a new toy today also! He is doing so good and has improved so much with his tummy time; he deserves it! 😉 There are so many things to do here! I love it!

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Ryan had an echo/cardiology appointment today!! The big news - surgery may be sooner than anticipated. Everything is still looking good, it’s just getting close to that time and the idea to get it done during spring break would probably be helpful while the girls are out of school. I definitely had to swallow a huge lump when Dr. Wright mentioned doing it earlier! And she knew it because she was already telling us that he would do fine. On another note, look at him pushing that paci back in! That is a big deal for us. He is doing so good, it’s hard to believe sometimes that he even has a heart defect.

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These cute little gray sweatpants! They have pockets! We’re on the way to his echo appointment today. He’s been doing really great so we’ve just been checking in every 6 weeks to make sure everything is still doing fine in there until surgery maybe April! 😬 I say that just fine now, but just wait.

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Ryan was really feeling this tummy time swing for a while at @downsyndromeoflouisville in todays infant exercise class! He was doing good with tummy time and was even showing off some side lying. That or Ms Dawn is an angel. Lol. He proved me wrong! He has improved so much with his tummy time over the past few weeks, so proud of this guy!

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I #mustache you a question - if Ryan’s not the cutest kid on the planet, then who is? #trickquestion A. I wished I looked that cute when I yawned; instead, I look like some sort of scary creature. B. I did not know which one of these pictures was the best, so, all!! 😍 #ladiesman

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I meant to post this yesterday. We finally went to meet a friend from HIGH SCHOOL - like...that’s many moons ago. Anyway, we hope to meet her little guy soon, he’s got Down Syndrome and is 9! Let me tell you, Down Syndrome is ONE condition with so many different stories and differences! Every heart story is different, every diagnosis is different, every person is different! It really blows my mind. I have grown to LOVE diagnosis stories and my first concern is always how baby’s hearts are! So meet Ryan’s new friend! It only took me months to talk myself into reaching out because I was afraid she wouldn’t even remember me. And everyone kept telling me it’s fine it’s fine. Lol. 😍

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I love it when he puts his hands on the bottle. No, he doesn’t hold it yet. Just sometimes puts his hands there. But it’s so much more than when we had to just incline him to feed him and his arms would just flopped back. Also, his pinky there, it’s a little bent - that’s a marker of Down Syndrome, did you know? But just because someone has a bent pinky finger doesn’t mean they have Down Syndrome. It’s just a significant amount of people with Down Syndrome have that feature. Let’s all look at our pinkies now! 😆😉

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Y’all! I am seriously loving this kids motivation the past few days. #ryanstummytimesaga I’m gonna need this weather to stick around so I can keep these windows open. It’s working wonders. He was even reaching for things WHILE on his tummy today. This is a breakthrough. So proud of this guy! Rolled to his back a few times. Now I’m looking forward to him pushing up with them arms! 💪🏼💪🏼

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We are killin the tummy time. I think he deserves a nap. 😂

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What ya thinkin about Ryan?

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This will be Ryan’s 3 month picture because, well, everywhere we went people asked how old he was. And my response every time was - oh, he’ll be three months on the 10th. Well, guess what, it’s past the tenth!! How did that even happen??? And nobody even corrected me! Lol. He’s like halfway to heart surgery! 😩 He still hates tummy time. He talks back and smiles and I think he has a few hidden chuckles in there. He does great with head and neck support while sitting, but in the tummy will just cry or lay it down. He can definitely tell you he loves you with his eyes. Still loves sleeping. Eating every 4 hours now, which doesn’t seem like much better than 3, but it is! Unless we’re on some weird rotation, then it still sucks. He puts his hands in his mouth and I think is learning how to work his mouth. Lol. It’s funny to see. 💙💛

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Well. Typical. Pic of Ryan sleeping. But I had to post because he is so freakin cute and also he looks like a turtle. Lol. Also, I did reposition him because I don’t want him to reflux all over the place, in his own face, choke, anything and everything that I thought would end in tragedy. I also saw a swaddle blanket in Target (of course) that I think I’m getting on the next trip. It’s an arms up swaddled....anyone seen it yet??? I’ll post in our FB group if I can find a link to it. Because I swaddle him still, but he breaks out most of the time so I don’t want to, but I think he sleeps better swaddled. And this just went on for longer than I planned. My apologies. 💙

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So, let me ask you this, are you all surprised at all that Ryan is sleeping? 😂 We are heading out today and we’re bringing two little to go toys. (Kids aren’t allowed to bring things in the car. 🙄) #McGinnisRules Including Ryan. Anyway, paci counts as a toy because it has a giraffe on it, which is awesome with grasping and feeling. And, trying out Ryan’s NEW EARLY Valentines Day gift, his @hellomylovedesigns teether. It’s more for us to work on grasping and since it clips to him, we won’t drop it! 🙌🏼 And he can bring it to his mouth etc. etc. P.S. We did actually win some tummy time this morning, I think we’re gonna have to use the window technique more and let him look outside for a bit every morning. 🤗 #RyansTummyTimeSaga

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So this is how one of our tummy time sessions went today. Babies born with Down Syndrome have low muscle tone. While I’ve heard from so many that Ryan has great muscle tone, I love it. His biggest struggle is core/neck strength and that’s what tummy time develops. Also, arm strength, he doesn’t really push up when on his tummy, but I’m not sure what the typical development for that is. 🤷🏻‍♀️ And we’re always hit or miss. This morning, lasted all about 15 seconds. We’re working on it. It’s definitely a struggle. #SwipeLeft #RyansTummyTimeSaga

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