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19h arjake
Normal Allison Jacobsen
arjake Hoppy Easter everyone!! I'm pretty EGGS-tra special! Just a little sneaky peak for y'all. #swadestudios #sarahswadephoto #happyeaster #smalldude #raredisease #trisomy #gtube 19h
  •   arjake Thanks all!! I just realized I spelled peek wrong! Oops! 19h
  •   allisonkate Ahhh! That's adorable!!!! 19h
  •   jaycizakaras That!!! Love. 18h
  •   gwennieh 17h
  •   ffejsgirl Zomg LOVE IT! his hair! What a doll :-) 17h
  •   bzwygart1 Love it-- and you! 11h
  •   dtreg77 Omg adorable you need to send that in for a contest he will win !!! Love it 9h
  •   lesley392 So sweet! 8h

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1d arjake
Valencia Allison Jacobsen
arjake Contemplating a hospital stay last night -- or? Just got out for lunch with a friend and fellow special needs momma whose babe is here now too. It was so good to break free! I've only been here one day and I'm not quite sure how we did this for 2 months straight! Si is doing well and getting Pedialite now. We shall see how this goes! 😬. He also needs an echo and am crossing my fingers we can do it here and not outpatient! Let's cross things off the list please and thank you! #smalldude #childrensmercy #ineedanap #istinklikecalstat 1d
  •   _lillygracee_ Stay strong!!! 1d
  •   sonjaclark Praying grace and strength for you and your precious babe! Oh my goodness even when sick he's sooo cute! 1d
  •   allisonkate He looks good to me! I think he's put on some weight since I started following you. Hospital stays stink, always at the worst time and it's never any fun playing "hurry up and wait" for the medical team to get their ducks in a row. 1d
  •   bzwygart1 Love it! 23h
  •   cljake Great picture and yes we're praying for as much to get done during the stay as possible 22h
  •   mrslingle I just LOVE this pic! What a BIG boy! And his lil legs over the edge.. 19h
  •   ffejsgirl Seriously this picture is so cute! Hope you're getting some answers. 17h

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arjake I'm sure the ER docs thought we were crazy when we brought this kid in (thankfully we had a referral!). He's happy and chilling watching Sesame Street. He hasn't had any food yet, just IV fluids. GI came by and thinks it could be post-infectious gastroparesis due to his recent viral illness. We will start feeds in a bit after rounds and orders are in. It's crazy how tired you get in the hospital doing absolutely nothing. I'm going to venture out and see some of our friends that are here and eat my fav cafeteria lunch -- cupcakes and onion rings!! They are surprisingly AMAZING! #smalldude #sickbabe #tummyissues #ticktock #childrensmercy 1d
  •   how_b_rolls So cute! I swear he's saying "yes, it is!" 1d
  •   lvacanti09 I'm melting...baby laughs make everything better! (And so do onion rings!) 1d
  •   katie_ewing Ha! What a cheeky monkey! He sure loves keeping his mommy & daddy on their toes! 1d
  •   bzwygart1 You silly little squirt! Love you! 23h
  •   cljake I love his giggle in this video. I've already watched it about 20 times 22h
  •   ofclongisland He is so sweet keep those videos coming. Love You All 22h
  •   cljake He is definitely saying "yes it is"!!! 2h
  •   testeinberg @arjake your attitude throughout every post, and in all your videos, is so radiant and uplifting. Sending your family and your sweet #smalldude many positive vibrations, prayers and love!! 2h

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1d arjake
Hudson Allison Jacobsen
arjake It's baaaack! We were admitted last night at 11:30. Hoping we can figure things out today. We will be meeting with GI and the thousand other people that think they need to be in the room as well . Sol and I slept at home and I'm on my way back -- don't judge it works for us and he was stable and sleeping like a rock. Thanks Gamma Phi Beta girls for my a.m. Starbucks!! I'm gonna need it! #smalldude #tummyissues #pleaseletthisbeshort 1d
  •   allisonkate You got the right attitude for kicking ass and getting whatever this is under control. You go momma! 1d
  •   katienickels1 Thinking of you. Hugs to Si Guy! 1d
  •   kbkuhl hope they figure out something! 1d
  •   carolynmacan Hugs! Hoping they figure something out today!!:) 1d
  •   meganburns Good Luck 1d
  •   stefanijean18 I don't blame you for not sleeping at the hospital - there is literally no comfortable place to sleep there. Hopefully they figure things out today!! 1d
  •   annedemps Happy mommy means happy baby. You have to take care of yourself in order to take care of him. He was in amazing hands. 1d
  •   bzwygart1 Hope you are all back home and feeling better soon! Love you all! 23h

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2d arjake
Valencia Allison Jacobsen
arjake We got sent to the ER! This kid is only happy when he has nothing in his belly. Vomiting and dehydration despite our best efforts....and now we wait #wellthisisNOTfun #ionlyhave20%batteryleft 2d
  •   bzwygart1 You little squirt! We love you! Hope they can help make your tummy better! 2d
  •   cheekyalbi That smile! Hang in there!! 2d
  •   jhenak Hang in there! I love that sweet kiddo! 2d
  •   katie_ewing We love you Si! 2d
  •   jaycizakaras 3-( so sorry!!! Hang In there sister. 2d
  •   cljake Loving you and praying for you 2d
  •   sterndli98 He just loves the ER, this silly, sweet boy 2d
  •   mycolonialremodel Is everything ok?! You have me worried! 2d

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3d arjake
Sierra Allison Jacobsen
arjake Doppelgänger?! Si was sleeping on Grandma and the way he was laying made him look so chunky and I instantly thought of the classic Chris Farley scrunched up neck pose. HA! #smalldude #doppelganger 3d

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4d arjake
Video Allison Jacobsen
arjake HeHe...He does this a lot and it cracks us up! #smalldude #oxygenproblems 4d
  •   kmarps He is the sweetest thing. I love him! 4d
  •   mowilson3 He has changed so much!! Handsome boy! Love his beautiful big eyes and eyelashes! :) 4d
  •   katie_ewing I love him!!! Look at those eyes! 4d
  •   bzwygart1 Love you silly little boy! 4d
  •   lvacanti09 Look at those lashes! Heartbreaker!!! 3d
  •   ofclongisland Love You Si!!!! 3d

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4d arjake
Valencia Allison Jacobsen
arjake A week late but had to share my 11 month old #smalldude! We just can't seem to catch him without those fingers in his mouth! He's got quite the personality when he's feeling good! I can't believe he will be ONE in a few weeks -- this past year has been such a blur. #11months #15lbs11oz 4d

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arjake Completely heartbreaking . Can you all say a prayer for our neighbor? They had a major fire happen last night and [to me] it looks like total devastation. I'm so glad that they are safe but can't imagine how crushed they are this morning as they walk around surveying the damage. Life can change in a second, be thankful for what you have today. #heartbreaking #prayersneeded 4d

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5d arjake
Valencia Allison Jacobsen
arjake You like the taste of dried barf, do ya? Maybe you should try keeping it in your belly silly boy. We're gonna call today feel good Friday because maybe if we say it, it will happen?!? #wishfulthinking #smalldude #feelgoodfriday 5d

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6d arjake
Brannan Allison Jacobsen
arjake I just love this crazy little duck face. #tbt #nationalsiblingday #sistersister 6d
  •   dtreg77 Wow twins how many years apart ?? 6d
  •   bzwygart1 Love you both! 6d

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6d arjake
Mayfair Allison Jacobsen
arjake **REPOST from @gwennieh over at The Hartley Hooligans blog. I LOVE THIS QUOTE and the little addition at the end (LOL-completely agree)!! #giveuporfightlikehell #smalldude #bornfighter #defyingallodds 6d

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6d arjake
Valencia Allison Jacobsen
arjake Skull X-rays = NO FUN! #smalldude #brainbookends 6d

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arjake Room with a view!! This is hands down the best patient room we've been in and it's SO NICE in KS today! Back to business -- lots of things accomplished today and lots of things that need to be done. I LOVED how this clinic works and how many resources are available for us. Si's team consists of his PCP, NP, nutritionist, social worker, and care coordinator who will get to know him and work directly with his specialists -- orthopaedics, urology, ENT, and GI. We talked all things Silas and decided that he currently has bronchiolitis. If you remember, this put him in the hospital for 10 days in November but since we have O2, suction and a Gtube we can manage at home (fabulous!). This viral illness makes surgery in a month questionable. Can you say a prayer that it can still be done in hopes that tubes will cut down on the number of infections he continues to get?! Thanks! Also, it was determined that he needs to see ophthalmology to check his eyes (routine) and radiology/OT for a swallow study (no big surprise). He also had skull X-rays today to check his sutures for closures/craniosynostosis. He has positional plagiocephaly (flat head) due to laying on it so much but he also has a small "dent" that needed to be checked for closures. If indeed it is closed, we will discuss if surgery is needed with a cranio plastic surgeon (PRAY FOR NO FUSION!!). We also switched up his meds a bit --added a motility med--and will keep trying to figure out his diet (GI appt on the 18th). Thanks for the prayers...so very much appreciated! #smalldude #trisomy #clearthecalendar #childrensmercy #beaconclinic 7d
  •   snickjake always praying for that darling boy! :) and for you and Sol. 7d
  •   jaycizakaras Thinking of you guys and praying for Gods Will. Also praying for a little family enjoyment while in KC. You all deserve it! 7d
  •   prayfortay67 Hope all is well. my best friend is at children's mercy too it is her 137 day 6d
  •   rwake19 Hey, so I've been following you for a while and on Facebook too. Yesterday I finally read your story and it was unbelievably similar to ours. Like, so strangely similar. From the ultrasounds and extremely rare chromosome abnormality. It could have been our story I was reading! There is only one other known case affecting my sons same chromosome deletion/duplication. Anyway, I know we all share similarities as SN parents, but I just wanted to throw that all out there. :-) 3d
  •   arjake @rwake19 Hi! Thanks for following our journey. How old is your son and what is his deletion/duplication? I've found one other family that has a very (not exact) similar monosomy/trisomy that Si has but both girls are angels now . I've loved talking with their momma though and seeing what they were like! I'm definitely feeling overwhelmed with the number if doctor appts we have current but I'm hoping it will get better (probably wishful thinking!). Thank you for reaching out!! 2d
  •   rwake19 Lucas has a deletion of partial 13 and a duplication of 20. No trisomy or rings, but rare enough to not have a name and the one other case, the boy was way more extreme and passed away I believe. Things started going bad at his 20 week u/s, and we were told he would never survive the pregnancy. We had a fetal surgery at 22 weeks and u/s's weekly until 40 weeks. He was 5lbs 7oz and 19in. Sound familiar? LOL he had 2 surgeries in the first two weeks- a hernia repair and a mal rotation surgery. He was given a g-tube. He also had another surgery at 6 months for an obstruction.
    It was unbelievably overwhelming in the beginning. We had appts 2-3 times a weeks, therapies started at 1 month old because they told us he was blind and deaf, he'd never eat, walk, or talk. But, as he got older, his health seemed to change. He's neither blind or deaf. His g-tube is gone and he runs like lightening. Everything took a while, but it got better. Oh, he's 5 now. So, there is my brief recap of the last 6 years. 2d
  •   arjake @rwake19 yes. Very familiar! It's so, so hard!! It's toughest seeing other babes who are healthy and outside running and playing...someday !! Do you have other kiddos? 2d
  •   rwake19 It is so challenging. I was pregnant with 9 women from church at the same time. 9! 6 years later, I still struggle seeing where those kids are at compared to mine. But our journeys are all different and I I'm learning to accept that! I do have an older son. He's 8 now. Healthy as a horse and never any [health] issues. Lol 2d

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arjake Lots of info learned at our 4 hour appt.! Update to follow...we are HUNGRY! #shouldvegotaventi #smalldude #childrensmercy #beaconclinic 1w
  •   dtreg77 Awe enjoy !!! You look happy so I hope to hear exciting news @arjake 1w
  •   kmarps You are so beautiful my friend. Can't wait to hear all about it. I pray all went went. You are one amazing woman and mother. You inspire me so very much! 1w
  •   katie_ewing 7d
  •   prayfortay67 My best friend is at children's mercy too @taylorrwilhelm is her name 6d

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1w arjake
Valencia Allison Jacobsen
arjake I think he vomits so he doesn't have to wear clothes, so we've stopped wearing clothes -- worth a shot, 'ey?! This kid had a 104 temp and needed a liter of O2 last night -- not good. The doc says he has...drumroll...an EAR INFECTION! We were just at the ENT on Friday and he had no infection! He went from being super happy to a cranky, coughy, mucusy, pukey, snotty, sweaty, smelly HOT MESS! Ugh. Bring on the meds -- preferably for us both . #smalldude #canigetsomeambien #exhausted #feelbettersoonbuddy 1w
  •   sterndli98 Poor little guy 1w
  •   ksab09 Poor guy. Thinking of you all. 1w
  •   lindseyleif Allison. Oh girl. Is this so wearing on you?? Are you getting any sleep?? Can I help in any way?? (Serious) love you sweetie. 1w
  •   arjake @allisonkate no kidding. Didn't realize they would cause this much havoc! Maybe all this vomiting for the past month was from his ears? We could only hope! When is that babe coming? 1w
  •   arjake @annedemps ruptured ear drum?! Yikes! Too much Metallica in the mini?! 1w
  •   arjake @ksab09 can't wait to see you!!! EEEK! 1w
  •   annedemps All of my kids got the stomach bug 2 times in a 2 week span. Ry got sick only in the middle of the night for about 5 nights in a row and if course we were on vacation. 1w
  •   katie_ewing Praying 1w

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1w arjake
Sierra Allison Jacobsen
arjake Silas, did you keep mommy and daddy up ALL NIGHT because you were sick? Oh you're not going to talk now, huh -- lips are sealed? You little squirt. #smalldude #hopingforabetterday #comebackgrandma #thankfulitstheweekend 1w
  •   peridot784 Get well little man!!! 1w
  •   wild_isthewind Feel better sweet boy! 1w
  •   lvacanti09 Such a cute squirt! Prayers for healing and sleep! Xoxo 1w
  •   breeloverly Poor buddy:( He's so darn adorable, though! 1w
  •   katie_ewing Oh no so sorry to hear he's not feeling well:( BUT man he looks CUTE!!! 1w
  •   bzwygart1 We love our little boy--and his mom and dad too! Hope you all get good naps today and you feel better Si Buddy! 1w
  •   cljake Get better sweet one! 1w
  •   ofclongisland Hay little man I hope your feeling better. We want you well so you can come for Vivi and Moms b-day!! Can't wait to see our sweet boy!! 1w

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arjake Fitting right #milksnob?! Just thought I'd update you on our ENT appt. we had yesterday. Si does need tubes in his ears and we will be doing it at the same time he has his other surgery! YAY! Bad news -- He woke up this morning with a cough that sounds a bit mucusy. Bib c/o @faasdesign. #smalldude #faas 2w
  •   dtreg77 He's so handsome praying for ya go away cough !!! 2w
  •   bzwygart1 No cough--go away! Love you Si Buddy! 2w
  •   meganburns Sounds like a roller coaster with sweet little Si guy! There's ups...there's downs...there's joy...there's fear...sometimes you're thrown for a loop...but when it comes down to it...it's all worth it and you would do it all over again! I know that's kinda cheese, but it's life Praying for your cute fam!!! 2w
  •   arjake @meganburns Thanks friend -- I like cheese . You're prayers and wisdom (umm, momma of three -- how do ya do that?!) are so very much much appreciated! . P.S. I 1w
  •   arjake Oops...I'm still waiting on a pic of Esther girl's long locks!! 1w
  •   meganburns I know I know 😬 but every time I go to take a pic, she's got something sticky or nasty in her hair! 1w

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2w arjake
Earlybird Allison Jacobsen
arjake Papa trying to take someone for a walk but he wasn't having it! #lazydogproblems #englishbulldog 2w

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arjake Date night (thanks Gramma and Papa!). So we're done eating and he says, "you wanna just go to the Walmart parking lot and take a nap?" Bahahahahaha! #lifechange #tiredparents #fullbellies 2w
  •   dineanddish Ha!!! 2w
  •   bzwygart1 Sounds like a perfect idea! :) See Sol, that Walmart does come in handy! 2w
  •   ofclongisland Looks like it was good!!!! 2w
  •   katie_ewing Ha! That sounds like an excellent date night!😴 2w
  •   rwake19 Hahahaha!!!! Perfect. 2w
  •   arjake @ofclongisland It was so yummy! Too much food! 2w
  •   arjake @katie_ewing Sol had to work yesterday (I didn't) and I asked his mom is she wouldn't mind if I took a nap! So, I wasn't quite as tired as him 😬 2w
  •   faasdesign Lol 2w

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