arjake It's #feedingtubeawarenessweek ️ and coincidentally I came home to this contractual agreement for his feeding supplies. Did you know it costs $3029 for him to eat EACH month ?! This is just for his #gtube button, bags, pump, extensions, and 9 cans of formula and does not include all the food/vitamins we buy to put in his food blend or any other medical supplies/meds. We are so thankful to Si's gtube for keeping him alive and fortunate to have insurance to help cover some of these expenses, but I can't wait for the day when I can run to the grocery store and buy the $12.99 daily meal special for the whole family 🏼!! #whatwetakeforgranted #tubie #specialneeds #smalldude #ilovesomeonerare 2d
  •   annedemps My middle daughter was on elecare. I cried every time I shelled out for it. Our insurance didn't cover it either. 2d
  •   arjake @annedemps @alexis.guetzlaff our insurance does cover it currently (thankfully!!) but we are waiting to see if they are going to continue to . We will try and get him on a different base if this is the case but I don't want to rock the boat. He is on Elecare because we were hospitalized for a month with chronic vomiting 1.5 yrs ago and this with BD has been the trick to getting him well! It's so expensive in general but isn't it insane what insurance charges vs. what you can buy it for at Walmart 🙄!!!! 2d
  •   alexis.guetzlaff @arjake @annedemps I used to order it on Amazon. I could usually find someone selling a 6 pack for $125 or so and I always checked the batch numbers and everything, so my main concern was making sure I ordered enough and we didn't run out. Being able to buy formula off the shelf was such a luxury. 2d
  •   christina.myhre.photography I agree :) we love our tube 2d
  •   kcassady85 I have 18 cans of elecare jr. You can have for shipping. They expire march/2017. @arjake 2d
  •   arjake Wow! @kcassady85 we would LOVE to have them! Let me DM you (if I can figure it out) and get the details! 2d
  •   vow27 We use to use elecare as well and it's crazy expensive. But we are hanging on between feeding tube or not. I always had cans left over and no one I ever new used them and they'd go to waste. Now I know I'll think of you if I have extra! 2d
  •   ofclongisland Happy Valentine's Day Si !!!!! 22h

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arjake The boys are having a Super Bowl watch party #smalldude #elmogotthebestseat #lazysunday 6d

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arjake Buying these matching @helloapparel tees for Valentine's Day and Congenital Heart Defect awareness month was a super awesome idea ️! You know what's not a super awesome idea?! Trying to take a cute picture in your matching tees, while pregnant, with your 32lb toddler 😑. #epicfail #outtakes #smalldude #helloapparel #chdawareness #chdkid #specialneedsmom #mehtacast 1w
  •   dtreg77 Love ur bump1w
  •   rnicole1183 Looking great with the little baby bump! 1w
  •   katie_ewing Ummm just text you requesting a baby bump! You look AMAZING!1w
  •   lacroley Haha love all of them! 1w
  •   bzwygart1 Well, I still love all the pictures--and you two! The shirts are really cute! 1w
  •   anovo1 Ha! Nice try! 1w
  •   cljake What cute pictures! I love them...and you all !! 7d
  •   sabinedeluxe My english is not the best!!!!but you Are not a normal mommy you Are a super hero!!!! 6d

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  •   bzwygart1 Rats! Hope you're back to your sweet smile soon! 1w
  •   ofclongisland I'm with Grandma, I hope the day gets better 1w
  •   cljake Sweet boy....you are needing both your Grandmas !! 7d

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arjake Sealife 01/29/16 #smalldude 2w

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arjake Big boy puttin' on the cheese for Grandma and Papa 🚜. #smalldude 3w

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arjake Purchased the babe's new furniture today 🏼! After talking with some other special needs moms, we decided to keep Si in his crib instead of switching him to a toddler bed (for now). After making that decision it was game on 🏼. I'm hoping to avoid painting and keeping the current room color (UR pic). I'm now stuck on which rug to pick?! Help, I need to declutter my brain ! #nurseryinprogress #imnotcutoutforthis #designdilemma 3w
  •   maryarn6 Love it all! LEFT stripe is my favorite! 3w
  •   anovo1 Left 3w
  •   bzwygart1 Love the crib! You know I'm a loser when it comes to decorating decisions. Anything you choose will look amazing! 3w
  •   katie_ewing Love bottom left! 3w
  •   jkins30 Baby boy's room is going to look gorg! I'm excited already!! 🏼🏼 3w
  •   jamiesonboden Bottom left (bottom right would be too dark with the walls) 3w
  •   cljake I usually ask for help when I decorate anything myself so no opinion here they both look cute .! 3w
  •   cljake Although papa votes for the one on the right .... He is and you know how classy is ! 3w

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arjake First time out of the house for the #smalldude since last Friday and he's freaking out !! #identitycrisis #whodressedthiskid 3w

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arjake Morning rituals 🌤...Elmo on repeat 🤗! #smalldude 3w

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arjake Peace out @childrensmercy 🏼! Someone found a friend on the way out the door ️. #smalldude #minionmonster 4w
  •   cljake 4w
  •   katie_ewing Cutie! New cast today? 4w
  •   ofclongisland So happy for the pictures. It's been awhile!! Like you nothing else to do!!! We hope little Buddy does good this time around!! It was Good seeing you on Christmas. Love You All!!! 4w
  •   bzwygart1 Yay! So glad you got to go home! Love you Buddy! 4w
  •   dk_odich27 Hey there !! I too have scoliosis(Age 17) and had to wear that same brace at the same age as your child is wearing it!! My parents made me wear it all day except for sleeping in the night.. your child is very special and has some extraordinarily talents which u will discover later,than the normal kids..dont worry about the present Bcoz future is very much bright #myexperience 4w
  •   gods_girl159 Wow small world! I read a comment on @karen446680 post and came to your page. I am seen at children's mercy as well! I am actually getting ready to schedule an admission for next week to figure out some issues I've been having! 3w

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arjake Trying to break out of jail ! Cast #4 is on but he didn't recover from anesthesia quite as well today and we had to go to the floor 🙄 (🏼new fav emoji!). Hoping to go home soon 🏼. #smalldude #mehtacast #childrensmercy 4w
  •   dtreg77 Praying for u !! 4w
  •   lnekola Poor buddy! Hope you make it home soon! 4w
  •   motheringupward Hope he recovers quickly!! 4w
  •   cljake Love you little buddy 4w
  •   katie_ewing Oh no! So sorry mama! So glad he's better and home now ... Gonna text you!4w
  •   maryarn6 You crack me up! ( the emoji) 4w
  •   alissa_orsten What a peanut. Hope u don't mind .e asking what's wrong?? He's so darn cut u stumble across ur profile by accident but prayers for u and your family :) 3w

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arjake Get out the way, Dad, get out the way 🙄! #smalldude #tvsandtoddlers #youmakeabetterdoor #actionshot 1mon

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arjake Happy boy this morning even though he's got a little bit of a cold . #smalldude #ithinkheansweredme 1mon

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arjake Al Bundy 🏼 all. day. long. 🙄. #allboy #icantdeal #smalldude 1mon

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arjake 01-01-16 ! Well, these two are sure chipper (one of them anyway) on this New Year's Day ️. #smalldude #lovemyboys #tubie 1mon
  •   bzwygart1 Happy new year! Love you! 1mon
  •   katie_ewing HNY! 1mon
  •   cljake Happy new year little buddy! Gramma's been MISSING you! Looks like I should have been there that morning! 1mon

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arjake What a great 2015 it has been! It looks like you all love him as much as we do ️! We are looking forward to all the changes in store for our family in 2016. Thank you for all the kind comments . Happy New Year 🍾! #2015bestnine #smalldude #happynewyear 1mon
  •   bzwygart1 Yes, we love him...and his mom and dad! Prayers for a wonderful 2016! Love you all! 1mon

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arjake Someone is super excited that he is going to be a BIG BRO to a LITTLE BRO ! We went in for our 20 week ultrasound with the perinatologist yesterday and heard nothing but good news 🏼! As many of you know, we found out that Si's heart was abnormal at his 20 week scan and it was downhill from there. I hated ultrasounds because every time we would receive another negative report or learn about a new problem. I was so anxious about this appointment and didn't even want to go! When you have a medically complex child you are so much more aware of what can happen and you realize you are not immune from life's harsh realities. Thankfully, we had a lot of people praying for us yesterday and your prayers (and ours) were answered 🏼!! #smalldude #boymom #answeredprayers #bigbrother 2mon
  •   cljake Love the news and love the hashtag! 2mon
  •   misskuy Two boys! The best! 2mon
  •   ofclongisland We're so Happy for you guys!!!! Si Buddy you are so darn cute and you'll be a Great Big Brother!!!! 2mon
  •   abbyfrettwel Congratulations I'm sure Si will be a great big brother 2mon
  •   bzwygart1 So happy for all of you!! The joy of hearing good news was an amazing answer to many prayers! Love you all! 2mon
  •   thecoppercloud Congrats!!!! 1mon
  •   auntie24 I am so happy for u and your family. This "big boy" just keeps getting more handsome. 1mon
  •   abby.ann8 YAY!!! 1mon

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arjake I'm looking to find these awesome onesies a new home for a little boy who is #gtube fed. They are mostly Gap/Old Navy onesies that have been modified with a slit by my MIL to allow easy access to the tube. You never see the slit because the top shirt covers the onesie. We LOVED them but our #smalldude isn't so small anymore ️!! There are two long-sleeved onesies that are 12-18 months and the other seven are short-sleeved 18-24 months. They are in great shape and come from a smoke-free home. I will ship them to you . Please tag someone you feel could really benefit from these and I'll let Si decide who gets them ! #smalldude #tubie #gtube #gjtube #specialneeds #thanksgrandma 2mon
  •   arjake @samstingley @thecoppercloud I had Si's nurse draw a name and it was @samstingley! Please leave me your address below and I will get them out to you. I never got your DM (maybe I don't know how to check it, but usually it notifies me?) so please leave below and I will delete after I write it down! 1mon
  •   arjake @samstingley I sent them ! Enjoy!! 1mon
  •   thecoppercloud 🏻 1mon
  •   samstingley Thank you! You rock! 1mon
  •   tanialynnc Such a lovely thing to do! Your little guy is gorgeous 1mon
  •   samstingley Just received happy mail! Thanks again! 1mon
  •   arjake @samstingley did they work at all for your little guy? 1mon
  •   samstingley Perfectly! Gives me an idea of how to start modifying some other clothes! 1mon

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arjake #Repost @mrslingle with @repostapp.
・・・
When you're just trying to take a Christmas Morning Mimosa selfie & your jerk brother-in-law thinks he's smart. 🖕🏻🍾 #merrychristmas #christmas2015 @arjake
2mon

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arjake By far his favorite present...the tooting Minion #smalldude #merrychristmas2015 #allboy 2mon

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