Sunday, April 17, 2016

March for Babies 2016

We had a very successful 2016 March For Babies walk this past weekend!!! First and foremost - THANK YOU for sharing our page and for donating! Together, so far, we have raised just under $700!! If you didn't donate and want to, it's not too late! Click the "March for Babies, March of Dimes" icon you see on the right of the screen and then on the orange "Donate" button.
This was one of our smallest teams to walk but we still had a blast! I felt like we had a lot working against us this year but we prevailed! First of all, I was super worried about our ability to complete the 5 mile walk. The quads, now 7 and all just a tad shy of 50lbs are getting too big and heavy for the infamous choo-choo wagon. I knew they wouldn't be able to walk the 5 miles all on foot and I knew we wouldn't be able to pull them the entire way either! Keeping with tradition, we committed to doing it one way or another!  My anxiety about completeing the walk with all of the kids intensified when Bret called from work on Friday afternoon and told me he had been hit with the stomach bug that has plagued so many in our area. I could not believe it. After discussing the situation over with Bethany and our other team members, we decided we would still march on without Bret, again, making it happen one way or another! Lastly, North Texas had some very damaging hail storms last week and the weather radar showed possibilities of more storms on Saturday for the Dallas area, because of this, just over half of our walkers opted to play it safe and stay home.
The 18 of us who walked were armed with a couple dozen umbrellas, panchos and ziplock bags and we were prepared to get wet. Despite the dark clouds that filled the sky, not a drop of rain fell during the walk!

Our little Quadlings... Kylee, Korbin, Baxlyn and Brody
I absolutely loved our shirts this year! Special thanks to Amy Horton for bringing my idea to life and to Prosper Marketing for graciously donating our shirts so that we can walk in style!
7 of the 12 kiddos who walked/rode!
Broman. Ugh, this sweet, talkative guy!
Alright yall, if you know Kylee, you know this is HUGE! She's made big progress with characters over the past few months! Mention the name "Chuck E Cheese" and she'll run for the hills, but she's making progress ;)
Luke, bless his heart. I think he had the best set up in his cute little wagon!
The Pemberton Family, seriously one of the sweetest families I know! We are so happy they're committed to walk with us each year in honor of our quads and their 5 year old triplet girls born at 30 weeks...
Not having any other option, we brought our 5 car choo-choo along so that the kids would have the ability to ride as they needed. At any given time we would have 2-4 kiddos loaded down in it and it actually wasn't that bad. Don't get me wrong there were plenty times I could be seen covered in sweat panting like a dog, bit it wasn't AS BAD as I had imagined! I was reallllllly hoping all the pulling would pay off and I'd wake up with buns of steel the morning after, but nope!
  The kids did PHENOMENAL! Thankfully, they all walked (and ran!) a lot more than I had imagined they would. We didn't have any tears or complaining from any of them. Brody & Kylee, who struggle a bit physically, had to have walked a good 2+ miles. Kylee was limping towards the end but she didn't complain one time and did a great job at keeping up. Seriously, I couldn't be more proud! We walked along side a grandpa at one point and he told me "you know, I've been watching you guys at the walk since you started when they were babies, it's just amazing to see them and how far they've come each year."
The littles lined up during one of our snack breaks...
Baxlyn holding the quads' Path of Hope sign...
Reagan and Cyndi - Thanks for participating, pretty ladies!
I love seeing all of the Path of Hope signs that are displayed throughout the 5 mile walk. Seeing signs in honor of babies like my own and other survivors as well as signs that are in memory of angel babies is a great reminder of why we walk each year. 
This sign in particular, stopped me in my tracks...
I stopped and showed the kids I had with me at that point during the walk and explained to them that THIS is why we walk. It's hard to tell the size of premature babies in pictures but when an infant is lying in the palm of his mother's hand, there's no question as to just how tiny they're born sometimes. My own babies may have a handful of challenges, they may be weaker than many, they may walk slow...but they're here to walk. For that I am so thankful.

It was right about noon that our team crossed the finish line together. We were very close, if not last to finish but we finished! Thank you to all who walked. Thank you for all who were unable to walk but supported our team in other ways. Thank you to all who read my daily status updates on facebook asking for support and didn't unfriend me! Thank you to all who shared our fundraising page and to those of you who donated to this cause that is so close to my heart. Together, we all had a hand in making a difference and helped get one step closer to being able to give all babies a healthy start at life!

Tuesday, April 12, 2016

Prematurity - Our Journey, Our Battle, Our Victory. {Written by Jamie Stephens}

I've spent the last 6 months watching some of our best friends travel their own NICU journey after delivering their precious twins, four (yes, four) months premature. Thank you, Jamie and Tye, for giving us a mere glimpse of your journey and giving raise awareness about prematurity. You and your miracle boys have inspired so many and I know will continue to do so for years to come!

"My husband and I were beyond excited when we found out after several years of fertility treatment we were finally pregnant with not just one but two boys. How exciting to be having twins! All the sonograms watching our boys move and squirm in my belly were amazing to watch as we went to one doctor appointment after the next. From the beginning doctors mentioned this thing called preeclampsia and said I posed a risk caring twins and from an IVF conception. I brushed it off and thought that could never happen to me, I am doing everything I am supposed to be doing (no caffeine, no raw fish, etc.). Then like most women my feet started swelling pretty significantly, something in my gut told me I should tell my doctor, so I did. They said to come in for a routine lab check and protein level check then to see them back in a week. That next week is one I will never forget, the doctor read my chart and told me I need to pack a bag and go up to Baylor Labor and Delivery because I was about to be admitted. At this point I was only barely 23 weeks pregnant; I was just starting to feel my little boys move inside my giant belly. I called my husband and just lost it, this thing they called preeclampsia had hit me early on and I needed to be under careful supervision and bed rest until I delivered. At the hospital I was under constant blood pressure monitoring and protein level checks, and when they were not getting under control they decided to move me to Medical Center of Plano, a level III NICU because I was still only 23.5 weeks.

My first night at the hospital, the head NICU doctor came to talk to us and basically said I needed to make it to 24 weeks if we wanted any chance of our boys surviving after birth. So that was my goal. My boys were delivered at just 24 weeks and 5 days old on one of the scariest days of my life. My sister, Lacie, made us take a picture on our way to the delivery, I was crying and scared and did not want to take it! But ultimately glad she made me. The anesthesiologist got the “margarita shot” ready in case I wanted to be knocked out after they were born. Trevor was born first and came out screaming for such tiny lungs and then out came Sebastian with his faint little cry. I remember asking my husband if they were ok and he said he watched them get hooked up to the machines and they were doing great, they even wheeled my tiny boys to see me in their incubator before being whisked off to the NICU, our next home for six months. Because of my “condition” I was on a magnesium drip and couldn’t see my boys until the next day. That’s right, after my brisk look into their beautiful eyes on delivery day; I didn’t see my boys for another 24 hours.
Born less than 2lbs, my boys were hooked up to high frequency ventilators, or oscillators, that made their tiny bodies vibrate. They had monitors stuck to their fragile skin, diapers the size of the palm of your hand, and PIC lines in their umbilical cord. The doctors and nurses would describe everything happening, the tests being run, and their percentage of oxygen they were requiring to breathe. I went from knowing hardly any medical terms to being overwhelmed with knowledge of the life saving measures being taken daily to keep our babies alive. They were so little that I was afraid the tiniest of touch would hurt them; all my husband and I wanted to do was look at our precious little babies lying in their incubator. Then soon after that I did my first diaper change through the arm holes of the incubator, was told to lift their hips and not their legs because of how fragile they were. 
Then we starting celebrating milestones most parents couldn’t even imagine. Feeding breast milk through a small syringe down a tiny little feeding tube to their stomach was how we fed our newly born babies. I still watch the video of the first time we dipped a tiny sponge the size of a Q-tip into my milk and Sebastian sucked it from the sponge to start the process of him learning how to suck, swallow, and breathe. Every night they would weigh them and the first night they asked us to hold Trevor up while they weighed him was pure happiness. Finally after over a week I could hold my baby, but only lift him a few inches off the bed and for only a brief moment. These small little moments are what got us through, and the small moments eventually turned to larger ones.
We watched Sebastian go from an oscillator, to ventilator, to CPAP, nasal cannula, to no oxygen requirements, back to nasal cannula, then off for good! Trevor, my fighter, wasn’t as lucky and developed a bad infection that led to having NEC, a common prematurity based disease, and eventually a surgery when he was only weighing 3lbs. It was a long hard recovery for Trevor and eventually led to three surgeries and an eye procedure on his tiny little eyes. If you met my Trevor now you would never know unless you looked at the scars he wears all over his body.
Sebastian had his own battles with prematurity, as well as his victories. We celebrated him moving from an incubator to an open bed/crib, taking his first bottle, and fighting bad reflux and bradycardia. As a result, his discharge date changed four times because he would keep having slowed heart rate and low oxygen spikes. When he finally was discharged it was such a happy moment to be able take one of our sweet boys home, his stay lasted 123 days but the struggle was not over as we still had one baby boy awaiting the next surgery in the NICU. How amazing it is for these surgeons, doctors and nurses to provide the care they do for such tiny babies. While Sebastian was at home, Trevor remained in NICU and so our time was constantly split. What got us through was knowing what amazing care was being provided by his nurse “buddies” who would watch over him every shift and became his blue mommies. After Trevor’s final surgery he basically was required to be able to consistently take a full bottle each feed and boy was this a struggle. But our Trevor fought and still to this day continues to fight and has overcome so much. He has had more surgeries in his life time then my husband and I have ever had, let alone the average person/baby.
We welcomed Sebastian home after 123 days in the NICU...
Trevor's NICU journey was 196 days long and we were finally able to welcome him home on April 6th!
Their NICU journey and premature birth has left permanent marks on their bodies; tape scars, surgical scars, IV sticks, you name it but has also made our family so strong. Without the expert care from the NICU staff our babies would not be here with us, and for that we are forever grateful. March of Dimes supports the research and understanding of prematurity and its many causes, along with aiding in the breakthrough lifesaving procedures being carried out by neonatal doctors across the country. Please, help us raise awareness of premature birth and its many causes and effects."
-Jamie Stephens

To learn more about the March of Dimes and their mission you can visit their website here.  If you feel led to donate on behalf of Sebastian and Trevor or the special kids in your own life, you can do so safely and securely by clicking here.

Sunday, April 10, 2016

Suds & Salvation

It all started with a melted crayon in the dryer. Some of you who are Facebook friends with me may remember a few weeks ago me desperately seeking advice on how to save a load full of (brand new) clothes that had been stained bright orange thanks to a crayon getting stuck in the dryer vent.
It was an unusual evening in several ways. It was a Sunday evening, Bret wasn't home, the quads who are typically in bed around 6:30pm on a school night were up late...etc. After tucking them away in their beds I proceeded back to my mom-duties and went to finish up the laundry only to find an entire load ruined. Long story short, Kylee's favorite garage-sale-find lovey was a part of the catastrophe and she was NOT about to go to bed without knowing it was going to survive.
Before I knew it, it was hours past their bedtime and the girls and I sat on the laundry room floor talking while I scrubbed, soaked and scrubbed some more. Baxlyn, who I could tell has reallllly been paying attention in Kids Church lately and beginning to truly understand what Jesus did for us all on the cross, brought up salvation. After some lengthy discussion she told me "Mommy, I'm ready to ask Jesus into my heart!" She and I prayed and she did just that! Immediately afterwards she exclaimed "I'll get bath-eh-tized TOMORROW!" We held off for a few weeks and this morning, she finally got baptized with some of our closest friends and family there to witness!

For those of you who know Miss B personally, you know she is generally a shy, quiet little girl who doesn't like to draw attention to herself. In crowded, busy situations, you can usually find her tucked away under my arm or fighting for my lap. To my surprise, she never, not once, was anxious about being baptized in a room full of people. This little girl knew what she wanted and the idea of everyone watching her didn't phase her a bit. I was also seven years old when I was baptized in the same church, in the same baptismal that she was!

My Sweet Baxlyn,
It's been obvious from day one that God has a special and unique plan for your life. Your daddy and I are beyond thrilled that you made the decision to accept Jesus as your Lord and Savior and we pray that you will continue to seek His will for your life as you grow! We love you and are so so proud of you!
Love, Mom
"For God loved the world so much that he gave his one and only Son, so that everyone who believes in him will not perish but have eternal life." John 3:16
"If you declare with your mouth "Jesus is Lord," and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you profess your faith and are saved." Romans 10:9-10

Thursday, April 7, 2016

It's Time For.......

I'm a little late to say the very least but here goes! We have just over ONE WEEK before our March for Babies 2016 Dallas walk!
For those of you who may not know, the March of Dimes has led the way to discover the genetic causes of birth defects, to promote newborn screening, and to educate medical professionals and the public about best practices for healthy pregnancy.

After decades of increases, the rate of premature birth in the United States has now been on a steady decline for the last several years thanks to the research funded by the March of Dimes. This decline – to 9.6 percent today – has saved thousands of babies from being born too soon. Despite this progress, about 380,000 babies are born prematurely each year... four of those babies belong to us which is why we are so passionate about helping make a difference!

Here is the question. How can YOU help? I've got THREE ways that each and every one of you can help us make a difference...

1) Donate. Yup, we are asking for your money. Plain and simple, without funding, these studies can't be done and we can't continue to help save babies like our very own. Please don't think that because you cannot give a large donation you shouldn't at all. Even $5 can help this great cause!

2) Walk with us! If you are local and are interested in joining us, let me know!

3) SHARE! Now this one everyone can do! Share this page on Facebook with your friends and family to help raise awareness. Prematurity, birth defects and infant mortality affect so many people and often changes lives forever.

Here is the link to our 2016 Team Page. Here you can register to walk, learn more about the mission of the March of Dimes and donate safely & securely.

Stay tuned! Lots coming your way including my first Guest Blogger - eeek!

Tuesday, March 29, 2016

Hope After Heartache, Baby Noah

If you've followed our blog for a while, you likely remember Jen & Chris Petersen. Jen was added to our close-knit online support group that is made up of mothers of quadruplets, quintuplets and sextuplets, just over two years ago when she learned she was carrying quadruplets. Not quite half way through her pregnancy, Jen was forced to deliver all four of her precious babies and all four were immediately called to be with Jesus.
I have continued to watch both Chris & Jen as they've continued to struggle with the loss of their babies and the pain that comes along with the uphill battle of infertility. Despite the heartache that many can only imagine, Jen & Chris never lost hope or took their eyes off of their Heavenly Father or His plan for their life.
I am so happy to share with you (with their permission, of course!) that today, Jen & Chris are welcoming home their sweet, healthy baby boy, Noah Petersen. Although I have never met Jen & Chris in person, I can assure you that Baby Noah is one lucky little dude to have them as parents. I'm so excited to watch as he grows and know he has his own little army of siblings looking after him from above! God is so, so good!
To learn more about their journey, click here.

"For this child we have prayed, and the Lord has granted the desire of our hearts."
1 Samuel 1:27

Thursday, January 21, 2016

All That Medical Stuff....

Ahh, where do I start? It's been a relatively low key year as far as medical concerns go. Thankfully nothing major like last winter (seen here and here) has been thrown our way. All but Baxlyn still see their developmental pediatrician, who we depend greatly on for guidance  with overall development, on a regular basis. Thanks to Dr. Roberts, our awesome pediatrician, Dr. Reyes, and the team of specialists we have, our fantastic four are thriving as they grow despite obstacles along the way!

Celiac Disease
Many of you know that Baxlyn was diagnosed with Celiac Disease last March after several years of tummy discomfort. Shortly after her diagnosis, Dr. Russo wanted to have all four of the quads tested as they were all at risk for having it. After simple bloodwork at our pediatrician's office, we were told that Kylee had Celiac Disease as well. We immediately started Kylee on the gluten free diet along with her sister. In November I took both girls back to Dr. Russo to discuss our progress and get results on follow up bloodwork for Baxlyn. Good news we learned that we're doing something right with her diet! Her "number" went from over 100 down to a 9. Ideally we would like it under a 4, but a nine is phenomenal considering where we were less than a year ago. Not so great news is we are STILL dealing with tummy discomfort. Baxlyn went from complaining of her tummy hurting DOZENS of times everyday to only 3-5 times a day, 5 days out of the week. Huge progress but still indicates something is still going on in that little body of hers. I know cross contamination is inevitable sometimes but there are times I am 99.9% sure her meal is free of gluten and she still has issues afterwards. So frustrating! We plan to do another follow up with the GI in a few weeks to discuss further options. We also learned in November that Kylee was MISdiagnosed Celiac months before. He said while one number that is often elevated with Celiac was a bit high, other results from the bloodwork along with the fact that she has zero symptoms, leads him to believe she doed NOT have Celiac. She and the others are all at risk for developing it at any point, but right now, they're all clear. B and Kylee celebrating Kylee's misdiagnosis at Blue Goose with flour tortillas for Kylee!
Baxlyn continues to amaze me with her great attitude while dealing with Celiac. While I've learned a ton over the past 10 months, I still have a long ways to go in helping her learn to cope and learn to live on the special diet. I try to keep a stock of special treats she can have when the other kids are treated to things such as cupcakes, cookies and pizza. Occasionally we find ourselves in situations where she just misses out altogether, and she NEVER (ever) complains. Seriously, yall, she is one special girl with a heart of gold and I'm so glad she is mine!

Eyes, Patches and Glasses - Oh My!
Last update I left you on this subject was that Brody was getting glasses and Miss B was instructed to be patched for three months after being diagnosed with Strabismus (him) and Astigmatism (her). Other than taking a hard fall down the stairs on day one with glasses, he's done great and his eyes are slowwwly looking better as time goes on.
Baxlyn happily did her daily patching for three months, went back and had made no progress so earned herself a pair of glasses herself. She wasn't too bummed and enjoyed picking out both a pink and purple pair. If it were up to her, she would have a pair to match each and every outfit she had!
Several months into glasses, Dr. Chen is still concerned with Baxlyn's left eye. While she's making progress, it's not at the expected rate. Baxlyn is currently back to patching after school each day, for four months this time, in addition to wearing her glasses.

CP/Botox/Physical Therapy
If you've followed us, you know Brody and Kylee have had routine Botox injections for several years now in an attempt to help with their tone issues linked to Cerebral Palsy. I have a love/hate relationship with Botox and always have. We've had times, in the beginning where we didn't see much difference and on the flip side, we've seen it work.... almost too well which tends to cause more harm than good. While Kylee has been allowed a break over the past year thanks to her SPOTT surgery, Brody was scheduled for another round in October. Long story short, after discussing history, concerns and seeing how utterly terrified Brody was to go through it yet again, Dr. Acosta decided to let Brody have a break from Botox and suggested we try an alternative treatment for his CP, an oral medication called Baclofen.
After doing some research, talking with some of our other docs and our fabulous physical therapist, Bret and I opted against the new medication. For that and other reasons, we decided to get a second opinion from Dr. Delgado, a highly recommended neurologist at Texas Scottish Rite Hospital for Children. We had seen Dr. Delgado when they were toddlers, but it had been a while. Here Brody is before the doctor came in "I'm gonna go ahead and stretch so the doctor doesn't say I have to have surgery." Break my heart :(
I was blown away with the initial visit we had with Dr. Delgado regarding Brody in November. They spent hours evaluating him (sure that sounds like a huge hassle, but believe me, it's so reassuring to me) and everything was checked from his balance, his tone, his reflexes, flexibility, strength, response to vibration stimulation...etc. They took multiple videos of him as well, walking, running...etc. Dr. Delgado wanted to hold off for a few months and then bring Brody back to reevaluate and repeat everything we did in November to see how he changed and if he weakend at all with the extended amount of time between  botox injections.  Brody is scheduled to go back the first week of February where we will decide the next plan of action. If the neurologist feels like Botox may be beneficial, we will have the injections the following week. *I'll explain more on that if we decide to move forward with injections.*

Meanwhile, we are working hard at home with Mrs. Ashley, our physical therapist. I CAN'T say enough about this sweet lady and the love she has for my kids. My heart will shatter into bits and pieces if she ever leaves us, no doubt. We've had a lot of great therapists in our years but none that have ever connected with my kids like Ashley does.  There's something to be said when your child asks EVERY day after school if Mrs. Ashley is coming.... hate the therapy, love the therapist! Currently, Brody and Kylee have (in home) PT twice a week. Love this picture of her and Kylee after she drove out to watch Kylee cheer at one of her football games!
Kylee and Dr, Mayfield, her orthopedic surgeon.
Kylee has her follow up with Dr. Mayfield at Cooks in July, her little left foot is looking GREAT! Since her surgery, we can see a big difference in her strength, her speed and ability to run, jump...etc. Her surgery (linked at the top of this post) has been nothing but successful and we are SO glad we made the decision to go through with it, even though some believed she was too little and young for such a big surgery. For now, and hopefully forever, she is doing good without Botox and is cleared until July when she goes back for a follow up. Dr. Mayfield wants to keep a close eye on her as kids with CP often face new challenges as they grow and develop. Regardless of what happens, I know this girl is in the best of hands with Dr. Mayfield!

Both Kylee and Brody had another neuropsychological evaluation before first grade started. They had evaluations last year before kindergarten and it gave us great insight as to where they were and potential challenges that could come with school as well as some great tools we can take moving forward into the classroom setting to help them succeed. Something I've yet to mention "publicly" is that our little Brodster was officially diagnosed with ADHD last year. Our sweet guy isn't an overactive, hyper kid like many associate with ADD/ADHD kids, but he struggles... a lot... with focusing. He struggled quite a bit during the first semester of kinder and we ended up trying a medication last December. It took some tweaking and a change of medicines but ultimately we have seen some very positive changes in his ability to focus and complete tasks that are given to him at home and at school. Since starting the medicine, our only struggle is appetite. Unfortunately when he's had his meds, he loses his appetite altogether so we're keeping a close eye on his weight gain. Below, a picture of giggly Kylee and Brody before a long day of testing...

Several local news reporters interviewed us in November in honor of Prematurity Awareness Month. You can read two online articles here and here. I love being able to share our journey and to hopefully inspire families who find themselves walking a similar road all while raising awareness about prematurity!

Tuesday, January 19, 2016

All about Blade!

Our sweet Blade turned THREE at the end of October! This boy (for the most part) is at such a fun age. His vocabulary is huge and his perception of the world at this age is adorable...yet trying at times.  He's "big nuff" to do it all and has no idea he's the youngest of the bunch. To think that the quads were this age when he was born is insane. I felt like we had a decent age gap between the four and Blade but now, sometimes I look at Blade and can't imagine having FOUR his age and about to welcome a fifth...he's just a baby himself!
The summer and fall brought some big things for our little guy. You probably remember the quads' beaming with pride when they encouraged and successfully coached Blade in climbing out of his crib a while back. We ended up dropping his mattress to the floor after that and finally transitioned him to an actual toddler bed when his siblings got their new beds over the summer.

Another huge success was....POTTY TRAINING! I did the three day method with Blade, just like we did with the quads and he was a total rock star. Having just one toddler to train, we altered our approach a bit this time. We didn't quite put our entire lives on hold like we did last time (who can with four other kids?) and we didn't feel the need to tarp the entire house like before! A potty, a sticker chart and some skittles was all he needed and before we knew it, we were diaper free and never looked back. Like his siblings, Blade didn't night train at the same time, but did on his own within a few months.
The girls were sick at the time, but here are all three boys enjoying some bowling at a friend's birthday party...
Blade's three year stats:
Weight: 33lbs (70th percentile)
Height: 40 inches (95th percentile)
He passed his hearing and vision with flying colors and is one healthy little dude, which we won't take for granted ;)
Another first for our lil dude was the movie theatre! We saw Inside Out... it was the best nap he ever did have ;)

To celebrate his big number 3, we rented several bounce house/obstacle course things and invited friends over to play. He still LOVES "Mouse" (not Mickey Mouse, it's just "Mouse") and so that's the theme we went with. He loved seeing all the balloons, piƱata and party loot just for him!

Some of Blade's favorite things:
-His little pink blankets (yes) also known as his "mimis". He is attached and can't be without one at all times.
-He eats just about anything...with the exception of tomatoes.
-Like his siblings, he loves rain boots, being outside, anything that goes and playing in the creek.
-Like mentioned above, Mouse. The dude would watch Mickey Mouse 24/7 if I allowed him.
-He has a slight obsession with smelling things (like his blankets, for example) and he encourages others to use their sense of smell as well. He is constantly asking people to "nose it" when he wants them to smell something.

At three, I'm thankful he's still a faithful napper. Due to the quads being in school, he's up by 7am and takes a 2 hour nap or so after lunch and goes back down around 7pm. I'm SO thankful God gave me some good sleepers :)

Blade and Korbin

Love this sweet boy!

Now if time could just slow down a bit, that would be great!

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