Tiffany Clark Barber@pippyt07

I am ambassador for @creationsforacause code tiffanyc15 and Eli is for @ablefinder. FB Boutique Double E Botique

430 posts 265 followers 239 following

Waiting for our Butter and he’s singing to me with the radio. He’s full of it today. #myboy #rotten #sbssurvivor #tbisurvivor #ms #heloveshisbrother #countrymusic


So he’s totally digging the fact that Thomas the Train comes on Nickjr now. He’s so funny. Needless to say his temp is back up...thankfully since he refuses to keep the covers on. #thomasthetrain #nickjr #iamable #funnyboy #tbisurvivor #sbssurvivor


Starting to pack Eli up for vacation....that we leave for on the 31st. People think I’m crazy (and maybe a little neurotic 😝) but it takes a lot of planning to get baby bird 🐦 ready to be away from the nest for multiple days. Stay with me...first pic top line is his equipment: suction machine, CPAP (bag only bc we are still using the actual machine), food pump and supplies, breathing machine and supplies, cath and urinary supplies. Top line of clothes long sleeve shirts, 2nd line of clothes pants that match, 3rd line T-shirt’s that match the pants above them, last line shorts that match the shirts above them, 2 jackets in case it’s cold, one pair of jeans and a collared shirt if we go out to a nicer place. What I don’t have out yet are blankets, hats, and socks that match each outfit bc I’m washing half of them, pillows and boppies. Second pic diapers, pee pads, wipes, formula, and pedilyte. And of course his regular diaper bag, meds for 8 days, and his oh shit bag that’s always in the car. 🤔 I think that’s all. By far the most luggage in the car goes to Eli. #tbisurvivor #sbssurvivor #cpwarrior #pkdeli #vacationready #almost #specialneedslife


Double snugged up, fans off, heater on 74, and Mama sweating her ass’s temp is running low so we have to get it back up. Not super low, but low enough that I don’t like it. 🤷🏻‍♀️ just another side effect of his traumatic brain injury...his body doesn’t regulate his temp well or properly. We keep our house a consistent 70-72 degrees all year long to try and help keep him balanced. We also have to avoid extreme temps meaning we don’t get him out very much in summer or deep in winter time. #sbssurvivor #tbisurvivor #youdowhatyougottado #complicatedboy #hesworthitthough #braininjurysurvivor #braininjuryawareness


So....even with spinal rods, Eli’s curvature has increased by about 10% since his last X-rays. It’s not super bad but you can definitely see the difference in his spine. These rods are lengthened out...meaning that the bottom parts will have to come out completely and be replaced with new hardware. The bottoms are attached to his pelvic bone and have new bone growth around them so this will be a pretty heavy surgery. I told the ortho about the kidney issues that Eli has going on and the things we@know we have coming up (percutaneous nephrostomy tube placement- at least temporarily to drain his kidneys and in preparation for laser aspiration of his left kidney to remove kidney stones). He wants us to move forward and expedite that process and then heal from it before he does spine surgery....bc he doesn’t want any extra infection risks going on when he opens up Eli’s back and has to do such a major surgery. Makes total sense to me. He also wants Eli to grow a little more before replacing the rods so that we can stretch them as much as possible (to avoid having to do lengthening again so soon). He’s only 15, so we know he still has plenty of growth potential left...though I sincerely hope he’s close to being done growing...I don’t know how much bigger I can physically handle since he’s already almost outgrown me! So I messaged urology to get their ducks in a row so we can be healed and ready for back surgery for August/September of this year. 🤦🏻‍♀️ maybe they will....they’ve been sitting on plans for a bit now for reasons unknown to me. #sbssurvivor #tbisurvivor #cpwarrior #pkdeli #iamable #baclofenpump #veptrstrong #scoliosis


Made it back home! My boy is sacked out...X-rays, dr appt, client meetings w mama, property checks, and shopping will do that to a boy 🤷🏻‍♀️ #trooper #mamasreluctanthelper #sleepybear #myboy


Superman just hanging....waiting for X-ray and ortho appt. I know I’m biased but isn’t he the cutest?? #rotten #sbssurvivor #tbisurvivor #cpwarrior #hesthecutest #superman #myhero💪 #blueeyedboy💙 #iamable #disabiltyambassador #chnola


Let him sleep...for when he wakes, he will move mountains ⛰️ Ortho appt and X-rays tomorrow to see if he’s ready for another lengthening of his VEPTR rods in his back. Eli has VEPTR (Vertical Expandable Prosthetic Titanium Rib) rods affixed to his ribs to correct his scoliosis (due to his CP, due to TBI, due to SBS....yes I know it’s complicated). His spine curvature was to the point where if we did not intervene, he would have faced organ compression and ultimately death from not being able to breathe. Sounds ominous and scary bc it is. I was terrified when doctors began talking to me about surgical intervention. To make things even more complicated (😳) Eli also has osteoporosis (as a side effect of one of his seizure meds and due to the fact that his body doesn’t absorb calcium properly (poly cystic kidney disease) and his body doesn’t produce hormones properly...all of which is important to bone health)! So we weren’t sure if rods would even hold in his bones. So far so good 🤞🏻 though!! We have to have X-rays periodically and then they stretch the rods to keep up with his growth to keep him straight. So if you pray, prayers tomorrow would be appreciated. This has become pretty routine surgery for us by now, but surgery is always serious when you have a compromised, complicated boy like I do. #complicatedboy #hesworthit #sbssurvivor #tbisurvivor #childabusesurvivor #iamable #cpwarrior #osteoporosis #pkdeli


So Friday April 6th is Go Blue Day!! Go blue for child abuse!! As most of y’all know this is super important to me, raising awareness for Child Abuse, and SBS in particular. So wear blue for all kiddos, but especially for my baby boo, Eli. If you wear blue and post on IG please tag me @pippyt07 and use the tags #blueforeli #childabuseawareness #blueforchildabuse #ccswmoBLUE
#sbssurvivor #sbsawareness #myboy #myson💙 #myhero💪


Hey NOLA!! Looking for help with your Airbnb or VRBO listing?? Look no further! I work with several properties in the area in different capacities...from full management (cleaning, handling app, supplies, contractors, everything), to partial management, maintenance management, cleaning and any other services needed!! If you would like more info or pricing, DM me! All of the properties that I work with have a 4-5 star rating! I’m happy to tailor make a plan that works for you/your property. #nola⚜️ #propertymanagerlife #airbnb #vrbo #nolalove #airbnbnola #vrbonola


This is my decompression chamber, my relaxing place, my medical rest (medicated bath oils), sometimes my office 😂.... the 1 hour a day I have completely to myself to catch up and unwind. Next is a round in the massage chair! #mamastimetorelax #momtrepreneur #specialneedsmom #specialneedslife #tiredmama😴 #selfcarematters