14h arjake
Normal Allison Jacobsen
arjake They're Back - Best T's Ever !! Shout love for Si and get yours now and a portion of your proceeds will help out Infant Toddler Services of Johnson County! We chose them as our @goshoutlove charity/organization of choice because they provide IN HOME therapy - OT, PT, & Dietetic services - to Silas!! This is HUGE for two full time working parents. LOVE THEM! . #Repost @goshoutlove with @repostapp.
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Oh my goodness check out these cool kids! We just adore @carlylskinner and her beautiful kiddos. It makes my heart so happy to see them in our first ever tee designed in honor of sweet Silas { @arjake }! You can grab our cool kids shirt now on our website! It comes in adult and kid sizes and will go to benefit an amazing cause! Make a difference with us! All the cool kids are doing it. 😎 #goshoutlove #shoutloveforsilas 14h

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1d arjake
Hudson Allison Jacobsen
arjake Days 15-17 ! Thank you @hellototes • Natalie S (again!) • Erin & The Mighty River Project • and Eric, Erin & Parker! What amazing gifts! #thankful #goshoutlove #shoutloveforsilas #goshoutlove25daysofchristmas 1d
  •   bzwygart1 So nice! Thank you all for shouting love for Silas and his folks! 1d
  •   erinreiner Yay!!! Glad you got it. Thank you for sharing your sweet boy and story with all of us! 14h

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2d arjake
Valencia Allison Jacobsen
arjake Hi . #smalldude 2d
  •   alisonroad28 OMG he looks like a big boy here! 1d
  •   anovo1 OMGosh!! So cute!! :) 1d
  •   debster_333 1d
  •   ofclongisland I just love his hair!!! The red is really coming out. And that smile!!! Love You ALL!!! 1d
  •   intothedark86 I smile every time I'm scrolling through instagram and this adorable little face pops up. :) 1d
  •   bzwygart1 Hey Squirty! Grandma loves you! 1d
  •   zoefaith81 Merry christmas .... Jesus loves u babyboy... 1d
  •   whatdoyoudodear That shirt is perfection. 12h

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5d arjake
Normal Allison Jacobsen
arjake Days 11-14 . Thank you Cody, Sarah & Brayden • Emily • The @goshoutlove gals • and Candice!! You guys are amazing!! #goshoutlove25daysofchristmas #shoutloveforsilas 5d
  •   mrslingle POUT, POUT FISH STUFFY?! 5d
  •   hensleymommyc You are so welcome! You give that precious baby boy a squeeze from me 5d
  •   arjake @hensleymommyc Thank you SO MUCH for the HUGE box of goodies! What a fun surprise! The little ornament with Si's name melted my heart! Thank you again so much for blessing our family this Christmas! 4d
  •   hensleymommyc I saw that ornament and knew I had to get it for him 4d

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arjake Can I take him home Dad? #smalldude #deckthestalls #hippotherapy 7d

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arjake Deck the Stalls at New Horizons Ranch -- Si and Bubbles. We are hoping Si will be cleared to receive #hippotherapy here in the future. #smalldude #deckthestalls #raredisease #trisomy 7d
  •   bzwygart1 I love this picture! So glad you had fun Si Buddy! 6d
  •   hillarykinnison Love it!! 6d
  •   elreeves25 Si you truly are the cutest. You make me smile every time your mommy shares your picture. 6d
  •   ofclongisland That would be so wonderful for Si !!! 6d
  •   ffejsgirl Omg he is so dang cute! 6d
  •   ashtay10 @britlan.kamstra Look how incredibly adorable this baby boy is!! 6d
  •   britlan.kamstra @daisy.paige he is! He looks so happy = ) 6d
  •   cljake These are some of my favorite pictures! 2d

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7d arjake
Sierra Allison Jacobsen
arjake First time meeting ! He was more interested in licking his coat than telling him what he wanted for Christmas . #smalldude #deckthestalls #christmasattheranch 7d

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1w arjake
Video Allison Jacobsen
arjake Because licking the steering wheel is just as fun as turning it . #smalldude #standing 1w
  •   jkins30 Cutie pie!! 1w
  •   emmelauree Cute level: 1w
  •   hillarykinnison Those cheeks! 1w
  •   sterndli98 He is so cute 1w
  •   marybrinkerhoff He's doing so good with his head control!! WTG Si! 1w
  •   katie_ewing He's the most precious thing! I showed P and she kept saying 'more!' ... So we've watched this about 6 times! 1w
  •   shortneyt I love him!! I could watch him all day. He's just amazing!! 1w
  •   maryarn6 He. Is a doll! 1w

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1w arjake
Normal Allison Jacobsen
arjake Days #7-10 of @goshoutlove's #25daysofchristmas! Thank you Stephanie • Jennifer, Ryder & Reese • The Go Shout Love girls • and Natalie!! #shoutloveforsilas #raredisease #smalldude 1w

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2w arjake
Amaro Allison Jacobsen
arjake We've been super blessed this week by people that have followed our journey and LOVE ️ our boy! I've posted days 2-6 of @goshoutlove's 25 days of Christmas. Thank you to Katie, Mindy, Kelsy & family, 3+3 Handmade Shop, and Heidi for shouting love for Si! Obviously, he's pretty smitten with all of the surprises GSL had in store for him ️. He is still fighting off a virus and is having trouble with recurring fevers and even some sparse vomiting (despite our fundo) but currently seems better and is hopefully on the mend! Maybe I should blend up some saltines and sprite and shoot it in his gtube!? JK ! Thanks for all your continued prayers for our family and our #smalldude! #raredisease #trisomy #shoutloveforsilas #goshoutlove25daysofchristmas #amazedbykindness 2w

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arjake Pure JOY radiating from this picture. We are #choosingjoy today...or at least working on it @goshoutlove! Thank you Nella girl @bowenandnellasmama for bringing JOY to so many of us and reminding us that we have so much to be thankful for! Did you #choosejoyfornella today? #curesma #smalldude #raredisease #christmaspicturefail 2w

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2w arjake
Mayfair Allison Jacobsen
arjake This is Si's new back brace . I seriously want to cry. It's huge and he's supposed to wear 10+ hours a day and MAYBE it will help his spine from progressing. No guarantees. Oh, and I believe that his clothes go on the outside so wrinkles don't cause pressure points and skin breakdown . Oh, and he can't wear it in the car seat . Oh, and it serves no benefit if he is laying flat. Huh? I'm over this already! Why can't he just be a kid? Deep breaths!!! #smalldude #medicalmess #spineprobs #trisomy 2w
  •   garnerwifey Remain positive mama! You are doing everything you can even when it seems crazy to do what's best for The Si Guy! #prayers 2w
  •   annedemps You are seriously such a strong amazing mom. Your outlook and sense of humor had taught me so much as a mom. You guys have come so far and this is just another hurdle you guys will conquer with grace and humor. 2w
  •   jkins30 Oh, SiBear, another hoop to jump through. Good thing he specializes in just that! Prayers for you three! Love you, dear friend! You are doing great! 2w
  •   bowenandnellasmama Hugs, mama 2w
  •   bericson25 Hugs and prayers for peace. This kid is gonna move mountains I can just feel it. 2w
  •   goshoutlove wish we could mail you a thousand hugs! always thinking and praying for you guys 2w
  •   ksab09 No one tougher than si buddy! What a trooper. 2w

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2w arjake
Normal Allison Jacobsen
arjake #Repost @jessicasanto with @repostapp.
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#mightysi with his amazing @moniquedong illustration! I just LOVE this little man!! @arjake @goshoutlove #goshoutlove #goshoutlove25daysofchristmas 2w
  •   bzwygart1 What an amazing gift! 2w
  •   jkins30 That is seriously the coolest thing!! So awesome! 😀 2w
  •   houkd Alison, you are a beautiful strong person. (mom) I love seeing your pictures and reading your little blurbs I hope you and your family have a Merry Christmas. 2w
  •   jamesvincentdesignco His little face in this pic is too much cute!! 😬 5d

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3w arjake
Normal Allison Jacobsen
arjake Day 1 - This amazing picture of all seven of the Go Shout Love kids. Can you pick out Silas!? #Repost @goshoutlove with @repostapp.
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Well, our Christmas Surprise is off with a bang! Because of the overwhelming love and support from people across the WORLD we were able to put together #goshoutlove25daysofchristmas ! Each family has a special gift to open from now until December 25! We could not have put this together without all the outpouring of love and support from everyone who participated! There was so much behind the scenes work and we owe so many thanks to so many people and we will get there, BUT we first wanted to show the first present that was gifted to all seven families that we have featured this year. This is a custom print by @moniquedong depicting each of our Go Shout Love kiddos at a picnic! We just know they would all be the best of friends and we like to imagine that in a perfect world this is what their day spent together would look like! Can you tell which kiddo is which?! So fun! #goshoutlove #goshoutlove25daysofchristmas make sure to tune into the families social media accounts to see what fun goodies they get each day! 3w
  •   arjake Thank you @moniquedong! We ️ what you did for us and will cherish it always! 3w
  •   arjake @katie_ewing Do you see that P is too busy reaching for that darn cupcake that she isn't even paying attention to that giraffe! LOL! 3w
  •   krisestok hahaha @arjake that cracked me up. i mean can you blame her?! it's a WHOLE platter of cupcakes! i like to think that she is thinking "i will eat one cupcake for every doctor and person that ever doubted me! take that!" 3w
  •   joshmyersband They could have just gave us all this and stopped!! It's so amazing. As much as it may sound silly it makes us feel good that they included Lennon playing on the giraffe with his little pointy hat even though he's no longer with us. Makes us smile when we see it. 3w
  •   lynds_bolis @arjake @goshoutlove oh my... This made me cry. Such an amazing organization you have. Supporting such a great cause. I have grown to love these kiddos so much (in a not creepy way) and my love and prayers go out to all of you every night. 3w
  •   moniquedong I am so happy to have been a part of this! @arjake love to you and your family! 3w
  •   bzwygart1 Love it sooo much! Thank you! 3w
  •   katie_ewing @arjake @krisestok !!! Love it! 3w

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arjake @jessicasanto from @goshoutlove had a special delivery for Silas and our family yesterday. She played Elf and brought some serious JOY with her - 25 gifts for 25 days of Christmas from people who love to GSL for Si! Un•BELIEVE•able. Not only did GSL visit Si this Christmas, but they also did the same for the other six families that were featured! What a HUGE surprise! Thank you GSL! #goshoutlove #shoutloveforsilas #thankful 3w
  •   k_schriner So wonderful!!! You deserve it!:):) be blessed! 3w
  •   bzwygart1 Truly amazing! Thank you Go Shout Love and everyone who helped make this possible for these families! Bless you! 3w

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arjake We just did our first blend of greens for Si 😬. That bowl of green goodness smells terrible . We usually use stage 2 baby foods for his blends but are wanting more variety. I'm now trying to figure out dividing and storing. Any great tips? #blendtec #blendeddiet #tubefed #gtube #tubie 3w
  •   snickjake we used muffin trays for freezing portions for Isaac. :) 3w
  •   arjake @snickjake and I just read that they are 3.5 ounces a piece! Yes! 3w
  •   katie_ewing Go mama go! 3w
  •   adcoop I loved using breast milk storage bags for our homemade baby food. They are sterile, disposable, and store super easy! 3w
  •   annedemps You are such an awesome momma. Si is one lucky little dude. 3w
  •   gwennieh Good job, mama! We just make fresh and never freeze and store in glass lock containers. Works the best for us!!!! The only thing I freeze is bone broth in ice cube trays. I use 3-4 cubes to make 2.5 or so oz of broth for Lola. :) let me know if you have any questions! We do organic, raw blends for Claire - works great! 3w
  •   arjake @annedemps This may not last long! LOL! 3w
  •   arjake @gwennieh I was hoping to prep things and just be able to pull stuff out, thaw and mix with his formula. This is more complicated than I was anticipating 😬. I need easy! 3w

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arjake The day after Thanksgiving. #stuffed 3w

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arjake What a difference a year makes! Happy Thanksgiving! #thankful #smalldude 3w

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4w arjake
Normal Allison Jacobsen
arjake Si Update: We had a big week with good news and not so good news. This one's a doozy....
Cardiology: Si's heart is functioning well it seems, but his PDA has remained open and will probably at some point need to be closed. They also said that his left ventricle and atrium looked larger this time but function and pressures seemed fine. Hmmmm?? We will continue to monitor and reevaluate in 6 months.
Neurosurgery: The most unexpected news was given at this appointment. Si has kyphoscoliosis (hunch back + s-shape curve) and his spine is quite the mess. It is very curved in his head and neck region. Dr. K is concerned that he will eventually, as he grows, have basilar invagination. ***Side note - I think this is the medical term he used but at the time when he was explaining all I heard was vagina. Don't ask me why I didn't ask him to write the medical term down for me but I didn't. Googling vagina/vagimus (or anything similar) + brain got me nowhere, so finally I texted his nurse to see if she caught the correct terminology...yep, INVAGINATION! LOL! Okay, glad we got that cleared up!*** Basically, he is concerned that his spine might eventually start protruding into his brainstem - NOT GOOD. This controls your breathing, your heart, your swallowing, etc. The surgery sounds very high risk and he also would not be a candidate at this time because of his age. There has not been any change since the last imaging and things are okay now, but the concern is with growth. We were not expecting this and just pray new symptoms don't present themselves as time goes on. We follow up in 6 months.
Endocrinology: I thought this appointment would be a disaster and it was the best one of the week! Si had some abnormal labs and there was concern that he might be starting puberty early. What the heck!? Genetic kiddos like him can have issues like this but fortunately he is not starting puberty - phew. Thankfully, if he did need treatment, all that would need to be done is to administer a medication to keep his hormones in check. I really don't need the attitude that comes along with an 18 month old teenager! Okay, this got a bit long....rest in comments.
4w

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4w arjake
Valencia Allison Jacobsen
arjake We're getting into the Christmas spirit this weekend in this house ! #christmasspirit #littleelf #santaslittlehelper 4w

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