#hieawareness

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🗣Shoutout to ActiveKidz & all of the amazing therapists for all the special activities they do for the kiddos they treat! 👏♥️ This Santa visit really surprised me and everyone was so sweet & patient. Jack’s OT helped Santa win Jack jack over with some little cars—scroll to see Santa’s slow progress! Haha! 🚘🎅🏽 Jack also got to make dough ornaments with his BFF, Hadelyn @macycown !🎄 So glad these babies have so many of the same therapists and can work together at Speech & OT! We LOVE LOVE LOVE our therapists. ♥️♥️ . . I was actually referred to ActiveKidz when we still thought Jack had Mito because they were one of the only places that would do in-home therapy. After the doctors advised us to take Jack out of all his therapies b/c he was going to die, I did. But after 2 months of terror and sadness, I decided that I wasn’t going to wait around for him to die anymore. I found ActiveKidz and within weeks, Jack had a new OT & PT coming to our house weekly! Those days were so important to me. And then I was so nervous to transition to the actual building when Jack started speech and feeding therapies months later, but it’s has been amazing for my brave buddy! He loves it there, he loves his therapists, and he loves all his therapy friends!! ✨🌈✨ #activekidz #therapylife #jackjacklove #physicaltherapylife #occupationaltherapylife #speechlanguagepathology #speechlanguagetherapy #feedingtherapy #rareisbeautiful #pyridoxinedependentepilepsy #hypoxicischemicencephalopathy #hopeforhie #hieawareness #inbornerrorofmetabolism #metabolicdisorder #geneticdisorder #raregeneticdisorder #epilepsyawareness #epilepsymom #epilepsywarrior #hiewarrior #developmentaldelays #morealikethandifferent #toddlerbuddies #specialneedslife #specialneedsmoms #twoandahalf #adore_able #wereallable #differentnotless
Our hearts are so full of gratitude after our Brunching for Babies fundraiser yesterday. We could not have done this without the support of so many friends who came to support our cause of supporting HIE NICU families 🙏💗💕 . . . We’d also like to thank the generous sponsors who donated so much to help make our raffle prizes possible 🙏 . . Stay tuned as we will be pulling raffle tickets for our prizes shortly 🎟 . . . . . #charity #charitywork #philanthropy #chicagocubs #cubbies #chicago #brunchingforbabies #foundation #savingbabies #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope #polarlove
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Hi Friends & Family….In the busyness of life and all the unexpected events this past week, I sort of shut out the rest of world and missed many changes that took place in our CDH community. Before I share our update, I do have one special request and it’s not for our family. I was saddened to learn that this week, three beautiful baby boys gained their wings and their families will forever be changed. My heart breaks for them …I ask that you lift them in your prayers, pray for their peace and strength to get through this time and carry them as they attempt to move forward and find understanding. CDH is such a monster; it has taken so many precious babies and continues to threaten the lives of our beautiful children still here. I hope and pray that someday, somehow the statistics change, the outcomes change, that a solution is developed to help our babies. #CDHawareness -- As for us, we are standing and I am so hopeful that this week will be so much better. I continued to be overwhelmed by the enormous amount of love and support give to us by so many near and far. One of the biggest positives I have taken away from this moment in time, and truly appreciate is the lesson learned for my children. With so much negativity and problems in the world, they have been blessed with the opportunity to see first-hand what true love and generosity looks like. My children our very much like me and I teach them to find the positive in every situation, but they also have a tendency to feel as though them accepting a gift for themselves may actually take away from someone else, or desire not to inconvenient others. I have heard them on more than one occasion expressing how thankful they are for everyone and all they have been blessed with, but also not wanting to take away from someone else or another family in need. (CONTINUE BELOW)
And the winner for longest baby legs goes to...Olivia! The winner for longest eyelashes....Olivia! The winner for best snuggles....again, Olivia! Congratulations! ❤️👶🏼
When everyday became meaningful for us in the NICU, we learned the importance of capturing even the smallest of inch stones. Scroll 👉🏼 to see our first snap! . . . When @timesnapshop offered to donate their milestone board for our Brunching for Babies fundraiser, we couldn’t be more excited! Buy your raffle tickets to win 👆🏼(link in bio) . . . All proceeds raised go towards our Hugs & Hope care packages for HIE NICU families. . . . . . . . #charity #charitywork #philanthropy #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope #polarlove #snapyourmilestones
Aiden said we are OK friends….our future is so full of blessings and so bright, he had to put on shades. In all seriousness, this pic is actually from last week during Aiden’s vision/eye exam in UT….cuteness overload, right?! -- Truthfully, we really are ok. Part of that is because of all of you; our community (our village) has stepped in and been so amazing during this time. Yesterday, I broke down and I cried….it wasn’t tears of sadness, worried or frustration, but instead I was filled with an enormous amount of gratitude. Obviously you all know what is going on with Aiden and his medical needs, the U-Haul being stolen, and to add to that we were in the process of moving as our lease/contract on our townhome ended on the 5th. The new property fell through earlier this week, which means we are staying in a hotel (yes, imagine the fun with 5 kiddos). We are working with a new realtor to find a rental property. Although we are trying to do this quickly, I don’t want to rush and settle and I have these conditions for the property which is not making it the easiest task. Vegas schools are zoned, so I need stay in the in North/Northwest zone for Shadow Ridge High School (for Q), we need a minimum of four bedrooms, and I need downstairs to be hard flooring or at least partial (tile or wood-for Aiden and his equipment/walking, etc). SO if you know of a property that is available, inbox me!!!! When I talk about community and what you guys means to us, my goodness. Levels to this is what we are experiencing, from your monetary contributions to Aiden, our family, to my kiddos teachers/schools reaching out. I know they would likely not want me to share, but how great does it make a mother feel to know that the educators and those around my children genuinely love and care for them outside of the classroom walls. Yesterday I had to handle calls and had to handle claims with insurance, but in between that, I received calls and emails from teachers and their counselors asking what could they do, what was needed and so on. (CONTINUE BELOW)
When it’s been a rough week and you just need to dance... #letloose #doitlikejackjack . . We made it to the @downtownathensga parade by the skin of our teeth & with no Fs left to give.✌🏼😎 Don’t let Jack fool you though, he had fun for like 10 total minutes until his chubby little hands got cold. We had some sweet little moments before the full blown meltdown.🎄#christmasparade2018 . . #athensga #athenschristmasparade #downtownathensga #my_athens #athensgakids #shakeyourbooty #toddlerdancemoves #jackjacklove #kayewalker #danceitout #longestweekever #christmaslightsmakeeverythingbetter #differentnotless #athensparadeoflights #delayednotdefeated #inbornerrorofmetabolism #pyridoxinedependentepilepsy #hypotoniaawareness #adore_able #weareallable #wereallable #rareisbeautiful #hieawareness #raregeneticdisorder #epilepsydoesnthavejack
Mommas and expecting mommas. We have some more awesome raffle items for you! . . . Keep your little one safe with the @owletcare Owlet Smart Sock 2. Buy your raffle tickets for a chance to win, link in bio 👆🏼 . . All proceeds raised go towards our Hugs & Hope care packages for HIE NICU families. . . . . . . . #charity #charitywork #philanthropy #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope #polarlove #owlet #owletcare
#Help Hi Everyone...the family is well and Aiden is doing great considering all that is going on. Many of you have messaged & commented via IG, FB and messenger and I will reply over the course of the day. I wanted to give a brief update. As of right now, no news or update from North Las Vegas PD or U-Haul, I am currently working on our claim and checking with Aiden's insurance to see if options are available to replace some/all of his equipment that was stolen with the truck. Again, items in the truck consisted of our belongings, housegoods, files, christmas items, ALL the kiddos clothes/shoes, and all of Aiden's mobility equipment, special adaptive car seat, seats, therapy tools, communication devices, high chair, etc. I am providing some pics here to give you an idea of what a few of these items look like, if you're in Vegas and you see these items pop up somewhere on a site for sale, please let me know! NOTE: License plate on our U-Haul that was stolen is AD01898 - Arizona plates. Thanks again everyone for all your help, love and support. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Only 3 days left until our Brunching for Babies Fundraiser! You can still help support our efforts by purchasing your raffle tickets #linkinbio . . Pamper your skin with @rodanfields hydrating skin care products! Graciously donated from #RandFConsultant @jenrobertson19 . . . . . . . #charity #charitywork #philanthropy #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope #polarlove #rodanandfields
It was a good day at Gillette! With a medically fragile child, it speaks volumes when the place you've had some of your scariest parenting moments- is also the place you look forward to each visit because you feel like you're home. We've decided to move forward with VNS for Ro's seizures, and we'll still be keeping a close eye on those damn hips. Updates to come once the schedule is set 😊 Thank you Gillette family! . . . . . #littlewarriorronin #hopeforhie #wefoundfreddy #vagusnervestimulator #seizuredisorder #lennoxgastautsyndrome #westsyndrome #epilepsyawareness #cpwarrior #spasticquadcp #hieawareness #littlewarrior #medicallycomplex #medicalmom #dontdismyability #differentlyabled #avoiceforronin #mamashero #mamamillette
Olivia loves a good game of Peek a Boo! #hie #hieawareness #hopeforhie
Ro has a big follow up today with neuro and complex care. So send your good vibes this way!... That is- good vibes for the doctors to keep their cool when they see such a stud. ✌😎😎😎 . . . . . #littlewarriorronin #hopeforhie #allthegirlsloveme #goodvibesonly #cpwarrior #spasticquadcp #hieawareness #seizuredisorder #epilepsyawareness #cviawareness #neuroday #medicallycomplex #complexcare #welovegillette #helloladies #medicalmom #inclusionrevolution #dontdismyability #differentlyabled #theluckyfew #mamashero #littlewarrior
For those of you who enjoy fine tequila, we’re excited to be partnering with Chicago-based, women-owned @finotequila for some specialty cocktails at our Brunching for Babies fundraising event on 12.9! . . Enjoy a Polar Mule or Polarita on Dec 9 with us! . . . . . . . #charity #charitywork #philanthropy #finotequila #failureisnotanoption #fino #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope #polarlove
Aiden creating  a beautiful masterpiece during #OccupationalTherapy at home, while building fine motor skills through play  Our little guy had a blast with the glue bottle and to my surprise, this activity became a quick favorite.  I think he was intrigued with seeing the glue flow and basically used the full bottle.  Although fun and this activity concluded with a beautiful piece of artwork for mom, this activity focuses on gross hand strength and grasp. (Note: Gross grasp is used when squeezing all of the fingers shut around an object, like when holding the handle of a suitcase.  Gross grasp is important in tasks like handwriting and scissor use.  To do these activities, you need to squeeze your whole hand shut and maintain endurance to complete the activity.  Development of hand arch and thumb web space is important for these functional skills and gross grasp plays a part.  https://www.theottoolbox.com) . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
I sincerely would like to thank each of you for your generosity. Many of you have contributed via GoFundMe, while others have reached out and used other options. All have been a blessing and we appreciate you for continuing to love, support and lift our family in prayer. Many thanks....Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
We have more AMAZING raffle items to add to our list. Thank you @cubs for this autographed baseball from @javy23baez 👌🏼💗💕🙌🏼 . . Win this autographed baseball and 2 bleecher seats for a 2019 summer Chicago Cubs game. . . Instructions to purchase raffle tickets are in our FAQ section on eventbrite #linkinbio . . . . . . #charity #charitywork #philanthropy #chicagocubs #chicago #cubbies #cubs #brunchingforbabies #foundation #savingbabies #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope
Giant coloring books, top hats, wiggly magic wands, a live bird… it’s all part of Danny Orleans’ colorful magic show that you’ll see at Brunching for Babies 12.9! . . . Magician @dannyorleans will be doing roving magic from 11:30 am - 1:30 pm, with a kids show starting at ~12:15 pm. . . . . . . . . #charity #charitywork #philanthropy #magic #magicshow #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope
We came, we advocated, but we didn’t quite get the answer we were hoping for. It is not Jack’s protein restricted diet, but his brain injury (HIE—>CP) causing all physical issues. We were hoping some struggles would be related to his diet and we could find a way to help through nutrition. Not so much. 😔 . . The Geneticist said Jack has such a bad insult to his brain that he may always struggle physically and not catch up like we were hoping. Jack is 2.5 years old and he’s physically still behind about a year. The gap gets wider & wider for my guy as he struggles to catch up. Yes, he’s doing well, but it doesn’t help me to hear how perfect you think he looks or how well you think he’s doing...he deserves the be on the same level with his peers and he’s not. He was failed by so many in the beginning of his life and I will not rest until this kid gets every possible opportunity to progress & thrive despite the injury inflicted on his infant brain. 🧬🌪🧠 #hypoxicischemicencephalopathy #hopeafterhie #hopeforhie #neurometabolic #therarelife #inbornerrorofmetabolism #pyridoxinedependentepilepsy #differentlyabled #differentnotless #genetictestingsaveslives #hieawareness #geneticdisorder #metabolicdisorder #rareisbeautiful #epilepsywarrior #epilepsyfighter #epilepsymom #epilepsyadvocate #advocatelikeamother #tubielife #cpwarrior #tripletherapyforpde #arginine #proteinrestricteddiet #littlestwarrior #emorygenetics #emoryuniversity #jackjacklove #newbornscreeningsaveslives #addpdetonewbornscreening
"Sometimes, real superheroes live in the hearts of small children fighting BIG battles." -- Some days are tough, but through it all he smiles, he is determined and works so hard....Aiden is not only a hero, he's my SuperHero!! . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Taking a play break during Speech Therapy a couple weeks ago. Classic Aiden….Hey Mom, look at me!!! (Watch till the end🙌...he demands his praise😂). . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
We made it home safely from UT and as I reflect on this trip, I really am thankful for the time spent there. Whenever I meet with Aiden’s specialists, particularly those individuals that were there from the beginning when Aiden first arrived at Primary’s Children Hospital after being airlifted from Las Vegas, it is a blessing for me. All of Aiden’s specialists hold a special place in my heart, but when I see the expressions from Aiden’s surgeon, neurologist and nurses that basically saw him at his very worst state and to now beam in awe of him when they see how far he has come, it fills me with all kind of emotions and tears flow….I am an emotional mess just writing this. Thursday, his neurologist with the biggest smile, shared how seeing Aiden gives her hope, and reminds her that good outcomes do happen and these kiddos do make it. Our sweet boy is a fighter and his name fits him so well…Aiden Mathis…our Little Fiery Gift from God. I want to say that I am in awe of each of you, because of your generosity and love, Aiden’s story has been shared almost 200 times in just (1) day via GoFundMe. I don’t have the words to express my gratitude, but I really am so thankful. Thank you for loving our sweet boy, for loving our family, some of you have been following Aiden since before he was born, for this I am so very humbled and forever thankful. -- If you desire to contribute to Aiden’s journey or want to read more about our story, please click on the link in profile. Love & Blessings~Kia Other ways to contribute: CashApp: $NikiaDyson Paypal: nikiaLdyson@yahoo.com . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
We made it home safely from UT and as I reflect on this trip, I really am thankful for the time spent there. Whenever I meet with Aiden’s specialists, particularly those individuals that were there from the beginning when Aiden first arrived at Primary’s Children Hospital after being airlifted from Las Vegas, it is a blessing for me. All of Aiden’s specialists hold a special place in my heart, but when I see the expressions from Aiden’s surgeon, neurologist and nurses that basically saw him at his very worst state and to now beam in awe of him when they see how far he has come, it fills me with all kinds of emotions and tears flow….I am an emotional mess just writing this. Thursday, his neurologist with the biggest smile, shared how seeing Aiden gives her hope, and reminds her that good outcomes do happen and these kiddos do make it. Our sweet boy is a fighter and his name fits him so well…Aiden Mathis…our Little Fiery Gift from God. I want to say that I am in awe of each of you, because of your generosity and love, Aiden’s story has been shared almost 200 times in just (1) day via GoFundMe. I don’t have the words to express my gratitude, but I really am so thankful. Thank you for loving our sweet boy, for loving our family, some of you have been following Aiden since before he was born, for this I am so very humbled and forever thankful. -- If you desire to contribute to Aiden’s journey, want to read more about our story or to learn why it was created, please click on the link in profile. Love & Blessings~Kia Other ways to contribute: CashApp: $NikiaDyson Paypal: nikiaLdyson@yahoo.com . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
💙 #Repost @lovehopefaith4aiden ・・・ Initially I was reluctant to create a GoFundMe account, but after the encouragement by so many wonderful friends/family to share our story, I took the time to do it. So here we are, read our story to learn why it was created and share (link in profile)...love you all!! ~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Initially I was reluctant to create a GoFundMe account, but after the encouragement by so many wonderful friends/family to share our story, I took the time to do it. So here we are, read our story to learn why it was created and share (link in profile)...love you all!! ~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Hi Friends & Family…Just wanted to give you guys an update on Aiden, following his Upper GI yesterday. -- The result of his report follows: IMPRESSION: 1. Small sliding hiatal hernia. 2. Small to moderate sized paraesophageal hernia. Findings: There is dilation of the esophageal vestibule. This accounts for the finding on today's chest x-ray. A small sliding hiatal hernia is intermittently seen. There is also a small to moderate sized paraesophageal hernia intermittently protruding up into the chest cavity. The stomach is distended with gas. No gastroesophageal reflux was witnessed, although contrast in the esophagus was retained for several minutes after the final swallow. -- Ok..so what does this mean!?! I provided a visual to give a better understanding, to my surprise it was determined that Aiden has both hernias (middle & right diaphragm image). As of right now, no immediate plans have been established, there are no emergent factors impeding his progress or day-to-day, so I am waiting to speak to Aiden’s surgeon to discuss what course of treatment needs to take place. Although I stated that there are no emergent factors, it is highly likely that some of the GI & feeding issues Aiden faces are directly connected to the current position of his stomach and of course the condition of his diaphragm. In addition to the news of Aiden reherniating, his initial x-ray shows a curve in his spine, which presumably could be the early development of scoliosis. This is not a confirmed diagnosis; we meet with Aiden’s Physiotherapist (comprehensive care physician) tomorrow and will likely discuss Aiden seeing a Spine Specialist to determine if it is in fact scoliosis and so on. (Continue Below)
Hey Aiden, can I get a picture?....No mom, I prefer not to, please continue as you were and I will do the same😐. #BossToddler . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
This sweet boy just melts my heart💖. God knows I wish I could take all his pain and struggles away. (Snuggles with our friend Alex the Elf makes it better though). . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Special kisses from big sister after getting some unexpected news from Aiden's surgeon. -- Following a routine chest x-ray we met with Aiden's surgeon, where it was discovered that part of his stomach is in his chest.  Currently, Aiden's stomach is above his diaphragm, which means he has reherniated and has a hole in his diaphragm.  There was always a possibility of it happening again, but being that Aiden's diaphragm was repaired with his own muscle flap and not a patch, his chances of reherniating in the future were much lower. Aiden's surgeon immediately scheduled an Upper GI for this afternoon, so they could do additional testing and imaging to know what exactly we are looking at and how severe it may be..so yes, this means surgery. It's really quite amazing, because our little guy looks great, he's smiling and acting as if nothing is wrong....but that's our boy, right!!!! Friends...Keep our little guy in your prayers and I'll keep you updated.  Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
NEVER a dull moment--I don't trust them😐. First appointment for the day is completed...ok kiddos, we are going to run by Wal-Mart really quick to get bags (for Aiden's stinky diapers🙊) and some bananas for his smoothies, before the next appointment.  I do what I do, I have a routine with unloading Aiden...so I do that and as always place keys in his cup holder (don't ask why--that's just what I do). In my routine, I place Aiden in stroller and grab my keys, which follows using my keypad to close Aiden's door and lock vehicle. While I am doing what I do, my kiddos decide to help (bless their sweet hearts🙏). As I am loading Aiden in stroller, Boy Child #1 closes Aiden's door....wrong. I go back to door to open it, because surely it is unlocked (remember my keys are in the cup holder). However, somone took it upon themselves to lock all doors...wrong. I am just about 99.9999999 % certain, that this act was again done by Boy Child #1 . I take action and go to Geico app to request roadside assistance....oh no, phone is ontnd I realize I uninstalled app about a month ago to clear space.....wrong and wrong again. We proceed to electronics to grab a charger, because my phone dies of course. Girl Child # 1 selects charger for me and we go checkout. We go to customer service to charge my phone at an open outlet. We unpackage charger, attempt to connect phone and what do you know....Girl Child #1 picked up wrong charger. ...wrong. We proceed to electronics again and I get the charger, because at this point I don't trust Boy Child #1 , 2, 3, Girl Child # 1 or any other child in the store...I am convinced they are all out to get me. We return to customer service, phone comes back on, app downloads, but I dont know my login....wrong. After about a hundred attempts, trying to reset username & password, Geico not recognizing my information, I called them directly. Every # I dial gives a busy signal, but I am determined. I finally get through, the awesome rep gets a good laugh from my story, sets me up with a pleasant local locksmith that arrived 30 mins later (super prompt). (Continue Below)
S O L D O U T!!! We’re super grateful and humbled to report that our Brunching for Babies fundraiser is at capacity 💗🙏💕 . . . Raffle items are still available for anyone, even if you’re not able to attend. . . Instructions to purchase raffle tickets are in our FAQ section on eventbrite #linkinbio . . . . . #charity #charitywork #philanthropy #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope
Ummmm Aiden, it's 1am in the morning...why are you still up?!? -- Guess he's excited about getting his week started at PCH and seeing some familiar faces❤. . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
On the road again with these cuties, headed to Utah (our home away from home) for a busy week of appointments with our little guy Aiden .  We hope to see some of our SPECIAL extended friends & family during this trip❤❤. Praying for traveling grace🙏. . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
while it was far too short, we are beyond thankful for the time that we had with you, that you chose us to be your parents and that you continue to watch over us and your family every single day 🧡 👼🏻 🧡👼🏻#whateveretttakes #infantloss #infantlossawareness #nicu #nicubaby #hie #hieawareness
I LOVE this time of year and our holidays are always special, filled with some of my FAVORITE family traditions we started with the kiddos years ago. Every Friday after Thanksgiving we pull out the Christmas tree to decorate, rock out to Christmas music (yes finally, we don’t dare play it a minute sooner), enjoy a hot chocolate bar with way too much sugar (don't judge us—right now I am mom of the year in my kiddos eyes🏆) and end the night with a Christmas movie, which for the past two years has followed the warriors game (our FAV team—we may just get a win tonight). This time of year has always been special to our family, but especially now over the past few years, since being able to bring our sweet Aiden home. I am thankful that we are able to build more memories with our family and share these moments with him. I am thankful for this day, this year and all the days to come…regardless of what you may be facing, be sure to focus on what truly makes you happy and the people that bring you joy.... be grateful for your blessings. Make this time special and create moments that will become cherished memories. . . All my love💖💖. . . #FamilyTradition #Christmas #NoOneCaresAboutSugarTonight
Brunching for Babies fundraiser Sun Dec 9th goes up from $45 to $55 after Monday Nov 26th! . . Space is limited, and we only have a few spots left so purchase your tickets soon! . To purchase tickets, #linkinbio . . Can’t join us but would like to support our efforts? We have amazing raffle prizes available. Instructions to purchase raffle tickets are in our FAQ section on eventbrite #linkinbio . . . . . #charity #charitywork #philanthropy #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope
This good book has been the foundation of many great holidays meals for our family and friends. Perhaps someday I'll upgrade it and give it a nice cover😉. Happy cooking good people. #HappyThanksgiving
I learned today that Fetal Maternal Hemorrhage (FMH - what caused Raelynns injury) occurs 1 in 5,000 births and that 95% of babies are born still. If you feel decreased movement or feel like somethings is wrong in your pregnancy - GO IN! don’t let anyone tell you otherwise! Raelynn is truly a miracle baby in ever sense of the word. I can’t imagine our family without her in it. We are so blessed to be her parents. #fmhawareness #hieawareness #miraclebaby
ROCKED pool therapy today 😎 We had to share the news with Ro's swim buddies!-- Cooper & Connor swim laps with Ro in their hearts 💙 They help us spread awareness & inclusion! Cooper & Connor- Thank you for being my buddies 💪 Your support gives me strength in the pool! -Ronin . . . . . #littlewarriorronin #hopeforhie #cpwarrior #cerebralpalsy #swimbuddy #pooltherapy #epilepsyawareness #seizuredisorder #cviawareness #hieawareness #inclusionrevolution #medicallycomplex #medicalmom #spreadingawareness #tubie #iswimfor #avoiceforronin #cognitivedevelopment #differentlyabled #justkeepswimming #motorskills
I’m going to be running the @lamarathon next year! I’ve wanted to run a marathon for a while now, especially after being inspired by watching @jamiemiles85 do the London Marathon earlier this year. I will be running for @freddiesstory , to help him get the treatment and therapy he needs. To learn all about Freddie, and to sponsor me, please click the link on my bio. Also, to help me keep motivated (and to stop me only talking about running on here) I have set up @mitch_athon which is going to be a sort of diary as I prepare and train for this. Follow that if you want to see how hard this is going to be and watch me suffer! #lamarathon #marathon #marathonrunner #freddiesstory #novicerunner #running #26 .2 #26 .2miles #losangeles #usa #cerebralpalsy #hieawareness
After failing to get a place on the @londonmarathon I have been looking for a marathon to register for and focus on. I am very happy to say that I will be running the @lamarathon next year! I will be raising money for my little friend @freddiesstory , to help him get all the treatment and therapies he requires. Please follow the link in my bio to learn all about him and sponsor me. Thank you. #lamarathon #marathon #marathonrunningtraining #novicerunner #marathontraining #marathonrunner #running #freddiesstory #run #26 .2 #cerebralpalsy #hieawareness
We're baaaaaack! It was a snuggle-filled weekend with Grandma Lois in town! She loves to see my progress in therapy, and told me about 700 times how perfect I am- just by being myself. So yeah, I'm feeling pretty good 😊 She's the best! ... But now, it's time to get serious. We have 3 days to pregame for Thanksgiving. So much gravy, so few sweatpants. But we will be ready. . . . . . #littlewarriorronin #hopeforhie #thanksgiving2018 #gravytrain #itsallgravy #passthegravy #gravyboatcaptain #ketokid #hieawareness #epilepsyawareness #seizuredisorder #spasticquadcp #cpwarrior #tubie #microcephaly #failuretothrive #medicallycomplex #medicalmom #cviawareness #differentlyabled #developmentaldelay #dontdismyability #inclusionrevolution #tubiethanksgiving
Some days there are no words that can help and no words you even want to hear at all. Epilepsy sucks; it’s a thief in the night that takes away everything and leaves you completely exposed & vulnerable. But even when you want to crumble, be brave because you are not alone and your fight is so important! 💜🧬💜 . . . p.s. I’m going to go ahead and apologize for overusing the double helix from this day forward! I CAN’T BELIEVE @apple ADDED A DNA EMOJI!!!!!!!!! 🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬🧬 #epilepsyawarenessmonth #NEAM2018 #epilepsyawareness #endepilepsy #epilepsywarriors #pyridoxinedependentepilepsy #epilepsy #inbornerrorofmetabolism #bebrave #hypoxicischemicencephalopathy #hieawareness #hopeforhie #bloomwhereplanted #epilepsysucks #epilepsylife #seizuredisorder #purpleforepilepsy #seizuredisorders #allbrainsarebeautiful
Hope everyone’s having a great week so far! I’m poorly with a horrible cold 🤒 hopefully I’ll be back to my smiley self soon ❤️ @nancycollinsphotography #zebedeemanagement #zebedeemodel #teamzebedee #quadriplegic #hieawareness #HIE #hopeforhie #braininjury #braininjuryawareness #epilepsy #epilepsyawareness #wheelchair #portfolioupdate
My sweet boy is not feeling so well, not eating, can't keep down what he attempts to eat, slight fever, lots of tears and only wants mommy. -- First nap since yesterday and it didn't last very long....sleep deprived...Yes, we are!  Thankfully we are home all day and he can rest. #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Life Hack: A Jimmy John's sandwich is a great therapy tool. 😆 It's the ideal size for holding in both hands, engages multiple senses, and when you're done, you can hand it to your mom! Guaranteed it will make her happy AND she won't have to cook. 🙌(We recommend the #5 w/extra oregano for best results.) ...(and a cookie.) @jimmyjohns . . . . #littlewarriorronin #hopeforhie #jimmyjohns #epilepsyawareness #seizuredisorder #hieawareness #cviawareness #cpwarrior #cerebralpalsy #failuretothrive #microcephaly #differentlyabled #developmentaldelay #medicallycomplex #littlewarrior #tubielife #gjtube #medicalmom #dontdismyability #occupationaltherapy #motorskills #therapymom #waytomamasheart #throughherstomach
Happy 1st Birthday Little Princess ❤. . Thank you Allah for this special gift. Thank you husband, mak, and my family for being my strongest support system. Thank you everyone for the emotional and financial supports, & for your prayers. . When first we found that Hani was diagnosed with HIE stage 3, i googled alot! I even search #hiebaby on IG and alhamdulillah i found picture of amin (arwah) and i dm @fazilah_ila told her about Hani and she adds me on WhatsApp group. I received a lot of moral support from that group. Thankyou Ila, Caroline, Ju and everyone. From this social media platform, I also have new friends from all over the world. Stay strong everyone. Thank you allah. I love you Hani. I love you sooo much! #hypoxicischemicencephalopathy #hiebaby #hieawareness #cerebralpalsy #infantilespasms #globaldevelopmentaldelay Feel free to ask about her HIE condition Awareness makes things normal. 🤗
This Kid, "Nope, not today mom!!"…..#AidensLife 😂😂😎😎 total savage!! -- -- Just a little Saturday Morning Humor for you!!! . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
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