#hieawareness

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Aiden working with his @inspiredbydrive gait trainer during physical therapy with our friends at @affiliatedtherapynv . Right before therapy started, Aiden tried on his braces (AFOs) with the new adjustments, including the extra wedge placed in his right brace. I am sure the changes felt different, which contributed to dragging his feet more, but as as therapy went on he started to get more comfortable. If you are familiar with a gait trainer, you will notice that the position Aiden is in would be considered reversed, which we typically use when he is working at a table or doing a standing activity. What I noticed is that he actually seems more comfortable moving forward and taking steps in this position as well. Instead of returning him forward, we followed his lead and allowed him to work on walking forward in the position he favored. Our little guy is getting there! . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
My daughter’s last Valentine’s Dance as an elementary schooler. Middle school here we come 🤦🏼‍♀️ #ourunicorn #kayleedawn #beatingtheodds #hieawareness #autismawareness
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Last one before I go. . . Reposted from @hopeforhie - ⬇️ Let us know how you feel about “Welcome to Holland” ⬇️ . . Love it or loathe it, Welcome to Holland is a widely shared poem when faced with an unexpected detour in your parenting journey. For five moms who connected through Hope for HIE, it took on a whole new meaning. #welcometoholland #hopeforhie #hieawareness #specialneeds #hypoxicischemicencephalopathy #holland https://www.hopeforhie.org/welcome_to_holland_part_2 - #regrann
⬇️ Let us know how you feel about “Welcome to Holland” ⬇️ . . Love it or loathe it, Welcome to Holland is a widely shared poem when faced with an unexpected detour in your parenting journey. For five moms who connected through Hope for HIE, it took on a whole new meaning. #welcometoholland #hopeforhie #hieawareness #specialneeds #hypoxicischemicencephalopathy #holland https://www.hopeforhie.org/welcome_to_holland_part_2
Most people take this for granted, not us! Let’s go Matty! 🙏🏻👏🏻🎉 #mamasboy #momlife #motherhood #proudmommy #boymom #blessed #blessedwithboys #littlebrother #hopeforhie #hypoxicischemicencephalopathy #hieawareness
Matty saw his new speech/swallow therapist today and she helped us get our formula to the right consistency for his dysphagia/silent aspiration and for the first time in months he was able to have a bottle! Hoping to get him to 100% oral feeds and get this g-tube out soon! And hoping to start baby food soon too! 🤞🏻🤞🏻🤞🏻 #mamasboy #momlife #motherhood #proudmommy #boymom #blessed #blessedwithboys #littlebrother #hopeforhie #hieawareness #hypoxicischemicencephalopathy
A little drive down memory lane....Happy Valentine’s Day ladies. Love~Aiden ❤️😘 . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
This girl ❤️ She is the best big little sister ever! She wipes his tears, kisses him goodnight every night and laughs at his endless (and missing the punchline) knock knock jokes. And now she is climbing to the highest point in Australia for him and those suffering disabilities like him. She’s amazing. #kindsoul #amazing #bestbiglittlesister #lostwithouther #hieawareness #hypoxiasurvivor #iraisewarriors
Hey Aiden....where are your shoes?! Today has been such a busy day, yet we somehow had time to fit in a visit to Aiden’s AMAZING Orthotist, Dr. Brittany Stryker at @orthopedicmotion . I have been extremely open about our decision to keep all of Aiden’s specialist in UT at @primarychildrens , but we have a couple exceptions and Dr. Stryker is definitely one! Last week I discussed with Aiden’s physical therapists at @affiliatedtherapynv my concern with his right foot leaning more, the position of his leg when he stands and possibly replacing the soles on his braces (that kiddo is a rough one😉). They suggested that a wedge in the brace could possibly help. Today we met with Dr. Stryker, told her the issues and she asked if we mind giving the braces up for a day so she could make adjustments in the office. New thicker soles, a new set of pringles (for top of braces), adjustments to Aiden’s right brace for more support/wedge and even new straps. That’s stellar service....don’t you love when you you’re blessed to work with professionals that love what they do❤️?! We’ve been blessed with an amazing team for Aiden for sure. So back to my original question...Aiden, where are your shoes? This is quite funny, because with Aiden wearing braces, I have not purchased shoes since he was maybe one. Guess I have to pick up a pair of kicks before playgroup & PT tomorrow!! Ahhh yes...little update on Aiden’s assessment this morning...he did so great!! It was a long morning, but all the therapists and nurse were amazing with him. We will return in two weeks to meet with the team for Aiden’s IEP and discuss school options. That’s all for tonight Family ❤️. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Bedtime Can Wait...I Have To Fight Crime! #SuperHeroIssues May have to be placed on hold tonight, because we have a BIG day tomorrow. On the agenda, we have an early appointment with Child Find for Aiden’s assessment to start the process of getting him enrolled in school....Can you believe that, Yes...School! I am still trying to wrap my head around the idea and accept it, but I am totally not there yet. Where did the time go, my sweet boy turns 3yrs old next month?! . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Hypoxic Ischemic Encephalopathy (HIE) occurs in 3-20 per 1,000 live births. Many babies have lifelong challenges such as developmental and speech delays, sensory issues, Cerebral Palsy and sadly even death. . . . . We’re working hard on rolling out our Hugs & Hope care packages for HIE NICU families. We’re so grateful to everyone who supported our Brunching for Babies fundraiser. Here are a few pics from the event. More can be viewed on our blog (link in bio) 😁 . . . . . . . #charity #charitywork #philanthropy #chicago #brunchingforbabies #foundation #savingbabies #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #polarlove #hugs &hope #carepackages #cerebralpalsy
This little love bug is 5 months today! I can’t believe how far we have come in 5 short months. She loves smiling, people, food, her paci, and pretty much everything. She’s very content and happy with her life. We love you little one. #raelynngraceelliott #5monthsold #happybaby #hiewontstopme #hieawareness #raisingraelynn #littlepoppyco
Always learning! I just researched this book on amazon to purchase this morning, but decided to hold off to look at other recommendations and look at that....it was the first book I saw at the library!! The kiddos joined in and decided to change their library cards, because of all the cool new options, Vegas Golden Knights #VegasBorn was a no brainer!!!! Check out Auri’s book selection, that’s my girl...Forget being a princess, she’s going to be a scientist. #AstrophysicistsInTheMaking . . Can you tell it’s windy in Vegas today? . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Finishing up #feedingtubeawarenessweek with some pictures of Olivia and us on the day of her #gtube surgery and I remember thinking about David Letterman’s interview with Barack Obama and how he compared with tears in his eyes dropping Malia off to college like having open heart surgery. When they wheeled Olivia away for surgery and her final hearing test to determine just how deaf she was, I thought, “I’m not supposed to feel this way yet!” About an hour into the surgery, the Audiologist came into the room and looked like she had been crying. She explained that Olivia was severely to profoundly deaf. While she was explaining everything I was shooting daggers at her with my eyes (anger IS my go to emotion...) while nodding my head as I heard zero words that she said. She gave us some papers and some phone numbers and mumbled some apologies and left the room and then we waited and waited. Surgeon comes in. Everything went great! Go to room # blah blah and be with your baby. We run. We wait. Finally she’s wheeled in and I barely recognize her because she’s so swollen. Eventually she wakes up and is yelping in pain. The nurses tell us she’s not handling the pain well but they’re giving her the max amount of morphine possible. I am mean to the nurses and scrutinize every way they touch my baby. We ended up staying 3 days instead of going home the next day like we had hoped. Anyway...it sucked. It really did. But Cas and I bonded over the miserable feelings we were experiencing and we got to take her home and eventually things got better. It takes a while for a baby to adjust to having their stomach anchored to the wall of their abdomen with a hole in it that delivers their food. Her reflux went out of control so I made more angry phone calls. She now takes 2 different reflux meds, one of which she can’t live without that we call The Pink Sauce. The Pink Sauce literally makes Olivia open her clenched jaw for her bottle! We’ve created a solution but also a Pink Sauce Monster! It’s like Tim Gunn looked at our family and said, “make it work!” so that’s what we are doing. Every. Damn. Day. ❤️ #advocatelikeamother #hie #hieawareness #hearingimpairedkids #imissbarack
Hey Family....I have a serious issue that I need to discuss regarding Aiden. I want to address this, because this has been happening daily at an alarming rate. At a minimum, we hear at least twice a day....”Oh my, what a cute little girl and I love her curls.”😶🤣. Even though I dress Aiden in “boy” clothes everyday, it doesn’t help....but craziest of all, I purposely dress him in a shirt that says “ALL BOY”.....and what do you know, he’s still a girl🤣🤣 (Just look at his shirt, it says it right there). #PrettyIssues **Only posted for laughs, but what’s really funny is seeing their face when I explain Aiden is in fact a boy. 🤪😝 . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
(Right Pic) Mr. Dyson demanding we take a second look at the school budget 🤣. This week was definitely about getting back on schedule and today was no different. This kiddo accompanied me for two meetings this morning, one hour with the school organization team (SOT) and the other hour for a special school project, and he did absolutely amazing. It has been a long productive morning, but as a result Mr. Dyson will be out of the office for the next 2-3 hours...it’s nap time😉😴. . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Our little punky poodle Gabriel 💙💙💙 He left us two years ago. This beautiful picture popped up in my feed today...one of my favorites. #hieawareness
Whatever Aiden does....we follow! Occupational therapy did not start on the floor, it actually started quite rocky with some serious tears, but after a few rounds of Itsy Bitsy Spider and being able to draw while sitting on the floor, we made some good progress. Aiden is one determined, strong-willed kiddo and when his mind is set, it can be tough to get him on board, but he’s learning that his therapists and mom are just as determined and strong-willed as he is and won’t give up so easily. Another good day in the books👊🏽....You got this little man!!! Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
#Repost @lovehopefaith4aiden 💚☀️ ・・・ Our day summed up in two words....Joy & Freedom!!! Joy from being included and able to interact with his peers and freedom provided by his @inspiredbydrive Gait trainer, which allowed him to stand strong with the bunch and move freely. My heart just overflowed seeing Aiden stand at the table with the other kiddos and paint, participate in activities, jump with excitement and the highlight...stand tall as he enjoyed the bubbles burst and land on his face. Just look at that face ❤️. These are the moments that we will cherish for a lifetime. Although Aiden’s home occupational therapist was there to actually do a session with him during his playgroup, this time was filled with pure joy and nothing seemed like work today. As a mom with a little one requiring a little extra love and care, I am thankful for the resources and tools available to help my sweet both feel included and stand tall. Today....was a really good day!! Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Our day summed up in two words....Joy & Freedom!!! Joy from being included and able to interact with his peers and freedom provided by his @inspiredbydrive Gait trainer, which allowed him to stand strong with the bunch and move freely. My heart just overflowed seeing Aiden stand at the table with the other kiddos and paint, participate in activities, jump with excitement and the highlight...stand tall as he enjoyed the bubbles burst and land on his face. Just look at that face ❤️. These are the moments that we will cherish for a lifetime. Although Aiden’s home occupational therapist was there to actually do a session with him during his playgroup, this time was filled with pure joy and nothing seemed like work today. As a mom with a little one requiring a little extra love and care, I am thankful for the resources and tools available to help my sweet boy feel included and stand tall. Today....was a really good day!! Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
#TipTuesday - Late evening shenanigans and the tongue hanging out means he’s working hard and focused. Aiden is working on standing in his @leckeydotcom Squiggles Stander, which most of you know is used to offer posture support while in a prone, supine or upright position. He has worked up to standing two hours in his stander (which is amazing), while working and playing. While doing this simple activity, our little guy is multitasking, so not only is he building strength with standing, but we are covering grasping & letting go, color matching and focusing on key principals with his CVI (Cortical Visual Impairment). The purpose of the black sheet covering his table is to provide simplicity; removing visual complexity creates a simple environment allowing him to focus without distractions. The colors of Aiden’s cups and blocks are key; it is a known fact that children with CVI will often have color preferences. Colorful and even moving objects increase their motivation to use residual vision and promote visual learning. There are many ways to adjust this activity for a little one with CVI or simply just working on fine motor skills. Tools: Colorful mini blocks (In education section) and stackable cups (In kitchen section) were purchased at the Dollar Store. Happy Learning~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Matty saw his neurologist today. He says that Matthew is doing great and is showing very minor/minimal delays as a result of his brain injury at birth. This month we will try to advance Matthew to 100% oral feedings once we get his new therapist in to help make the honey thick formula with us. We go back to the neurologist in May, so my goal is to have Matthew taking all nutrition by mouth and even eating some baby food by then! 🤞🏻 He’s such an active, social, & happy baby...let’s pray that we see no residual effects of HIE in his future! 🙏🏻 #hieawareness #hypoxicischemicencephalopathy #mamasboy #momlife #motherhood #proudmommy #boymom #blessed #blessedwithboys #littlebrother
No RSV...so the show goes on!! - Today, Aiden finally and slowly returned to his regular therapy and it was so good to see some familiar faces and hug our friends. The day was not perfect and that was expected, physical therapy was welcomed (or perhaps not welcomed) with many tears as we worked on walking with the gait trainer, balance and sitting....Even Baby Shark couldn’t save the day😥. Although tears fell, we were still able to make some progress, wild hair and all😉. We went on to Aiden’s second center for his Speech & Feeding therapy (re)evaluation, surprisingly it went well and we were able to gage his progress and set new goals. I am working with his therapists to come up with an updated plan to use at home, covering the areas we desire him to improve on and basic skills to improve day to day activities. Aiden works best with a schedule, as most of us do, so I feel optimistic that getting back on schedule will be a great benefit!! I was hoping to get a better picture, but in honor of PT today, Aiden’s shirt says.... “Too Legit To Sit”😉. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
My little ROCKSTAR.....I managed to capture the perfect image at the perfect angle, but I cannot tell a lie...two minutes later he was balling his eyes out while receiving a breathing treatment in the doctor’s office. We spent about two hours in the office this morning at what should have been a follow up from previous appointments, to being concern about his breathing and wheezing. Aiden received a breathing treatment with a dose of steroid and was tested for RSV. Even though he has not been well, I really don’t believe he has it, however, we will know for certain in a couple hours. Thank you for your continued prayers family ❤️. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
We love a super Tubie ❤️🦁
Olivia was practicing sitting up but then decided to do yoga instead. 🧘🏽‍♀️#fuelhotyoga #hie #hieawareness
No appointments or therapy this week, some tears, still no appetite or able to keep food down, lots of coughing, waking up in the middle of the night, but this morning was promising. Aiden was happy, we went out to take care of errands, but when we returned, it all came to a halt. That smoothie he enjoyed and kept down for hours came right back up. He cried and cried, and I admit, this worries me. With Aiden not being verbal and able to express himself with words, I really have to pay close attention to his cues. Is he just upset, is something going on with his stomach (it is in his chest after-all), does his stomach look extended-maybe a little more bloated, is he getting enough calories, should I give him another treatment, is it time to administer his steroid, are his lungs ok, does his breathing seemed labored, is this vomiting from the hernia...is it getting worst, will he need surgery sooner....it seems like it’s getting worst. All of that in the matter of minutes, perhaps even seconds. Aiden is such a strong kiddo and manages to still smile and laugh, even when he’s not feeling his best, but sometimes it becomes too much and I just have to let him be. I have to hold him, love on him and just let him be. Praying for a calm night and better days ahead ❤️. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
One of the reasons we need the new all terrain buggy. . Today, after the appointment in Sheffield, that lasted 6 hours, Zack went to get much needed caffeine for us both and I decided to walk Casey back to the car, because it was still snowing and freezing and captain hypothermia over here can't handle it. . Walking down a busy street and the bottom of his buggy (the crappy plastic tray) just falls off the bottom of the pram, gets stuck, and wedges his oxygen canister and bag of meds along with it . So here I am, on my bloody knees, in the middle of the street, freezing myself to death, (Casey was fine, he had his hot water bottle) fighting the base of this friggen pram... so many people walked past me, except for one girl (if you happen to see this, blonde girl, then thank you so much for the offer of help) . This isn't the first time it's done this, it hates curbs, the oxygen alone is too heavy for it, nevermind his suction machine too... it's done it in the middle of the road before, on the school run, so I had both boys with me! . I finally got it back together, and to add insult to injury, it's so heavy that it nearly pulled both me and Casey down a hill into the middle of a busy Sheffield road! 🙃😐 . I'm just glad my shoes didn't lose grip 🤞😂 . . . . . . . . . #son #love #cerebralpalsy #cp #epilepsy #seizures #life #infantilespasms #tubie #stubbornascass #medicallycomplex #medicalmum #notanurse #specialneedsmum #braindamage #hie #hieawareness #hopeforhie
F R I E N D S there’s a blog up today recapping the amazing time we all had at our Brunching for Babies fundraiser in December. We raised $5,000 to help HIE NICU families. This fundraiser was instrumental in helping us launch our Hugs & Hope care packages that will he delivered to HIE NICU families. . . . . We’re incredibly grateful for every single person who attended, donated, bought raffle tickets, sponsored our fundraiser and supported us along the way 🙏💗💕 . . . . Stay tuned as we’re working hard on putting our care packages together! , . . . . #charity #charitywork #philanthropy #foundation #fundraising #socialimpact #4charity #socialgood #donate #giveback #hie #hieawareness #chicagocharity #lifeafternicu #nicu #leahspolarhugs #polarhugs #nicubaby #niculife #nicustrong #nicugrad #hugsandhope #brunchingforbabies
Our little guy is still not feeling his best, but I managed to get a few smiles after a nice bath and some clean clothes. Perfect shirt, right....”If You’re Reading This, Mom Won...I Finally Changed Out Of My PJs.”🤣 (Be sure to scroll through all pics for a special giggle & smile😉). — Thanks for your continued prayers family.🙏🏽🙏🏽 Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Home therapy was cancelled today, he tried so hard to be ok and lasted as long as he could. This picture was taken right after he coughed his smoothie up and right before he woke up from a quick nap, that abruptly ended because of a coughing/gagging spell. Now Aiden is in mommy’s arms trying to sleep. One thing I am most certain about today, not much else will get done, because my sweet boy is only comfortable in my arms. . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Have you ever played one of those "real life" games, where you're in a ridiculously busy kitchen and you're having to alter 50000 things at once, to get the combination just right, to make sure the orders go out correctly, or you lose money, and reputation and customers get angry? . . Well when Casey's poorly, that's how I feel... I feel like im playing a "real life game" but instead of getting the right combination of ingredients or pissing off customers and ruining your rep, it's medications and therapies we "play" with. Getting the right combination of secretions meds, suctioning, neb treatments, physio and possibly anti biotics... if we get the combination wrong, it can make things a lot worse, very quickly. . . I think I'd rather be giving people food poisoning and pissing off customers some days tbh 😂 the constant responsibility is exhausting, I'm not complaining, I know there's people that have it a lot harder than us right now, I'm grateful for how strong our little man is! I'm just giving an honest look into our daily lives, Casey isn't well at the moment, but he's soldiering on as ever! 🧡 . . . . . . . . #hie #hieawareness #hopeforhie #cerebralpalsy #cp #epilepsy #seizures #life #infantilespasms #tubie #stubbornascass #medicallycomplex #medicalmum #notanursebut #specialneedsparenting #boymum #mumofboys #sensory #pmuk #tiredmumsclub #mamamassive
Aiden’s pediatrician/nurse on call are the real MVPS, they called that prescription in real quick!!!🙏🏽🙏🏽 It takes a village/a great team and I am thankful for ours❤️❤️. #Thankful . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Most days are filled with smiles, but today is just not that day. My sweet boy has been doing so well and what do you know, a visit to his local pulmonologist on Friday and by Saturday he clearly was not feeling well. It appears that he picked up germs somewhere along the way(this is why we limit outings during flu/RSV/winter season). Clothes have been stripped so many times, because he can’t keep his food down, we just left them off. When he’s not feeling well, he doesn’t want anything to touch him, not even the sheets or blankets...so this is what he does. I am headed out to get a refill of his albuterol for his nebulizer, which typically does the trick. This winter has been kind to us in regards to sickness, I am praying that it will continue to be the same and this passes quickly❤️.~Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Happy Birthday Ella! I can’t believe you are already 2! I love you sweet girl and I am so proud of you everyday 💜 #love #niece #auntie #family #sweetgirl #birthdaygirl #2 #miraclebaby #defeatingtheodds #hieawareness #hie #hopeforhie #cerebralpalsy #strokesurvivor #proud #fighter #cutie #strength #ogden #utah
Ok, it's definitely time to make an update, I have lots to share, the past year has been nuts! So, this schmoopie little pumpkin is almost a year old! This is my precious daughter Rio. After a perfect pregnancy and a just about perfect labour, the chord got pinched or the placenta wasn't working properly causing limited blood flow/oxygen to her brain resulting in a severe brain injury (#hypoxicischemicencephalopathy #hie ). She is destined for cerebral palsy which means she will have trouble controling her muscles, affecting her ability to walk, talk, eat, sit etc. 1 in 2 people with CP are also cognitively impared. They don't typically diagnose CP till the age of 2 or 3 but in the meantime, what it means for her is that she lost her ability to swallow (she eats via feeding tube), is very developmentaly delayed, doesn't cry or move around very much, has infantile spasms (a type of seisure), and just doesn't respond to her environment very much....yet. We have no idea where things will go from here (I think there is still a small chance she may totally recover), or what her future will look like. It's been a crazy emotional rollercoaster, but we've had tons of support. The first few weeks were almost impossible, and the next few months really tough but we are going strong, drowning in our love for her and fighting over whose turn it is to kiss the snot out of them scrumptious little big cheeks. #rioDsweetlittlePea #YEGbaby #hiebaby #nicubaby #infantilespasms #tubiebaby #hieawareness #cerebralpalsy #cerebralpalsyawareness #cpalberta #specialneeds #specialneedsparent
The message I received this morning ...”Change Your Perspective & Being Passionate About Life.” As I looked over my schedule this morning before heading out, I felt a little overwhelmed, thinking how busy my day was going to be. I have to: Morning drop-offs all by 8:15 9:15 Pulmonology appointment with Aiden 11:10 Pediatrician appointment with Aiden 2:15 Ortho appointment with Auri (Meetup with Trelas sometime between 3-4 ) 3:30 Pickup Q 4:30 Pickup Ash 6:00 Dental appointment (Me) Changing Perspective...I GET TO: I get to drop-off my kiddos this morning at their amazing schools. I get to go to Aiden’s 9:15 appointment with his local pulmonologist to have a prescription refilled and be thankful that this is just a routine checkup....he’s not sick. I get to visit Aiden’s amazing Pediatrician for a 11:10 appointment to discuss his 6-month checkup in UT and most recent visit with his surgeon. I am thankful for our rapport, visiting her office is like visiting an old friend or even a family member. I get to take Auri for a 2:15 ortho checkup. Those braces have been off for a couple months now. Her smile is beautiful and I don’t have to hear complaints about not being able to eat popcorn...WINNING!! I get to see my hubby sometime between 3-4 and spend the remainder of the evening with him. I get to pick up Q from school at 3:30. It gives me great pleasure to see him so involved and dedicated. I get to pick up Ash at 4:30 from his last robotics team meeting, before the State Championship tomorrow. I am so proud of him and the whole team, they are an amazing, intelligent group of kiddos. I get to take care of me and visit my dentist at 6:00, baby steps, but my health is a priority as well. PERSPECTIVE...just like that, I have so much I am thankful for and able to do. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
The What Everett Takes Foundation website is now live. Link in bio. Learn more about Everett, his causes and our golf outing in his memory this May @olympiafieldscc #infantloss #infantlossawareness #nicu #nicubaby #whateveretttakes #mld #hieawareness
*NICU PICTURE SECOND SWIPE* How is our boy nearly two? In just 8 days...2! How did that happen?! . . How have we had you for 2 whole years? You amazing, little, snuggle bum...to think where he started and how he his now, it's bloody amazing. . . I get my days of it's not fair etc but then my little mind is blown with how much he's over come 🧡😢 and we're back to, Casey you are amazing 😍 . . I'm not sure if I'm making sense 😴 but there arent enough heart eye emojis for me to explain the pride and love we have for this little boy 🧡 . . #stubbornascass #son #love #cerebralpalsy #cp #epilepsy #seizures #life #hie #hieawareness
Today....we are thankful. Thankful for life, for love, our joy, family and for the future ahead. “Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend.” #Thankful . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness ( #mystyleplace )
You guysss!!! @themightysite published a story I wrote about a strangely raw moment I had in public with my sweet son and his walker. Yes, I have to mention both separately because the experience I wrote about taught me that when some people see both, it dehumanizes Jack to them and makes him more of a subject. We always want to spread more awareness about #pyridoxinedependentepilepsy , but that doesn’t mean that we don’t also appreciate privacy & respect! Hopefully that makes sense; like if you can’t say something nice then don’t say anything at all. Well, I wrote a lot of stuff down over the holidays and this came pouring out. You may recognize this story if you’ve been been following for a while, but I’ve never told it like this before b/c it has still been too fresh a wound until recently. 🗣🔪 #useyourwordswisely . (Authors note: these photos were taken same day/same time as the story if you read) 🌀 Why is it that when it’s the best time to advocate/educate, we can just freeze up? Maybe some comments are just too gut wrenching for a response. Here’s a little excerpt, but link to full story in my bio! #themightysite ⬇️💞 “It took all of my energy to get my medically complex son out where he could explore like other kids his age and I could feel the warmth of community again. Instead of being filled with hope, one comment left me deflated and feeling even more isolated than ever.” —> #kindnessmatters #wordsmatter #thereisnodisinmyability #rareis #rareisbeautiful #kayewalker #hypotoniaawareness #hypotonia #adore_able #wereallable #theablefables #wireandhoney #delayednotdefeated #jackjacklove #ablefinder #epilepsywarrior #epilepsyawareness #hieawareness #metabolicdisorder #raregenetics #raregeneticdisorder #seetheable #inbornerrorofmetabolism #encephalopathy #neurometabolic #neurodevelopmentaldisorders #epilepsydoesnthavejack
Pho is always great but after a sick day it’s a must 🍲😋 #babyboy #epilepsywarrior #pho #boymom #hieawareness
2 out of 6 school runs done 😬 have I ever mentioned, I HATE THE SCHOOL RUN?! . It is a ballache, I have to fill Casey's hot water bottle, warm his bundle bean and hat up, find extra layers of clothes for him and get him dressed (think cooked spaghetti!) As well as making sure nate is dressed and fed etc then de ice the car, load Casey's suction, oxygen and all his pre warmed crap into the car, and casey, who is not a small noodle, in fact, hes a pretty heavy floppy, noodle 😂 i have to make sure nate isn't running round with one shoe on and no coat (which he usually is, cause the boys a squirrel 😂) then finally do the drive to school... I have to do the above routine in and out of the car, 2.more.times. just to stand in the school yard for 5 minutes this is just on one school run... now try doing all that on an icey road or pouring rain. . . While hoping the smallest doesn't get home with hypothermia (again) . My back hurts! . . I have to do all this just because DLA won't award mobility to a child under 3...not without great pressure anyway! 🙃 . . Anyone volunteering for the next two days? 😂 #fml . . . . . . . . #stubbornascass #son #love #cerebralpalsy #cp #epilepsy #seizures #life #infantilespasms #tubie #dla #disability #disabled #wonkybabiesclub #hie #medicallycomplex #medicalmum #notanursebut #hieawareness #hopeforhie #audi
Oh my god, E! You just rolled over for the first time 😱🤩😍💖👏🏼 #6months I laid you down for a cuddle while daddy prepared your evening milk for the last pump feed and you turned towards me. You’ve been doing that a few nights now when you come in for a cuddle but you just went all the way over 🎉🎉🎉🎉 - And now you’ve gone to sleep so are you daddy’s bedtime buddy tonight? Am I relegated to the sleepyhead? 😂 #yay #giddyparents #thisismega #youareallkindsofawesomekid #happytears #MummysInTheSleepyheadTonight #hie #hopeforhie #hieawareness
At the grand old age of 16 months, ebony has decided now is the time to crawl! After being told this may never happen, you can imagine how ecstatic we are! The constant physio and hydrotherapy must be paying off! 2019 is our year baby girl 😍 #crawler #proudmummy #ebonymai #hypoxicischemicencephalopathy #HOPEforHIE #HIEawareness #waardenburgwarrior #allweneedistime
After being given this fab news at the end of last week, we have had so much fun trying some new dishes. First we had slow cooked fruity porridge loaded with apples and bananas, a little taste of strawberry jam and a dollop of double cream all blended up, he loved every last mouthful. Lots spare for the fridge and freezer too! Shepard's pie was next on the list, again loaded with nothing but goodness and nutrients, and an extra cheesy crust on top of the mash 😋 with cauliflower and broccoli blended up to the consistency that Lion can handle and he demolished it all, so much he had hiccups 🙈 so far, so good 👍 It's so nice that we are both enjoying something, I love cooking all this goodness for him knowing he's getting good food inside his little body to help him grow! Every mouthful he takes gives me goosebumps, especially given the circumstances behind his story! Anything really is possible! 🦁 ❤️ #rorysroadtorecovery #rorylionroars
We did the thing, we went to Sheffield and met with lead consultants and nurses and dieticians and the rest of the usual medical entourage! . . They struggled to get bloods from Cass, they needed 17ml 😱 wasn't happening, they got 3ml from a finger prick (his fingers are bleeders 😂) for the 3 most important tests, I assume we'll do the same next time! . . So now, we go back through in 2 weeks, to find out if Casey has gotten onto the keto part of the trial or the extra meds part of the trial (even if its the extra meds, we still get to go onto the keto diet after 8 weeks, which, let's face it, is nothing after 2 years of waiting!) . . Then back to Sheffield again, 8 weeks later, to decide on diet and see how he has reacted etc . . Hopefully, we'll be able to do a couple of the appointments over the phone, as it takes us 4.5 hours to get to Sheffield, with Casey's necessary stops! . . We got home at 12 last night 😴 poor Zack did the driving, we are both exhausted today! So it's a sofa day... and washing.. all the washing because the cat is an arsehole peed all over my clean washing. Again. I DONT HAVE TIME TO PUT IT AWAY EVERYTIME GOD DAMN IT #knobhead . . #stubbornascass #son #love #cerebralpalsy #cp #epilepsy #seizures #life #infantilespasms #tubie #complexneeds #hie #medicallycomplex #medicalmum #notanurse #specialneedsmum #braindamage #hieawareness #keto #ketogenicdiet #KIWE
Hey Family...we are in UT and my heart is just overflowing. I’ll share the details of Aiden’s appointment with his surgeon, Dr. Barnhart later, but let me just talk about these two beauties. Our sweet boy is so blessed to have been cared for by some of the most amazing nurses and they continue to genuinely love him so much (almost three laters), just look at those faces❤️❤️. Things were definitely in our favor during our visit to PCH, we went to the NICU to visit Angie and while standing there, Jan walked through the doors...that’s what we call a super two for one special!! My heart holds a special place for these ladies (Aiden’s primary nurses) and all of Aiden’s nurses during his time in the NICU. One day he will realize just how blessed and loved he is by so many, near and far❤️🙏🏽. . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Having a very cool bath with one of my Christmas presents (floating lights 👍🏻) I loved it! And thanks to my firefly splashy chair I can sit safely 😊 Happy Friday everyone! #zebedeemanagement #zebedeemodel #teamzebedee #childmodel #minimodel #cerebralpalsy #cerebralpalsyawareness #cerebralpalsykids #quadriplegic #braininjury #HIE #hopeforhie #hieawareness #epilepsy #epilepsywarrior #nonverbal #bathtime #bathtimefun #disco
Today we're off to Sheffield children's hospital, to hopefully get Casey on the KIWE trial (ketogenic diet for epilepsy ages 0 - 2yrs) we've been wanting to get him in this trial since he was 6 months old, but unfortunately, alder heys keto dietician, has had some time off! But 2 weeks before his 2nd birthday, they've fit us onto the program at Sheffield! 😱 now let's hope he meets all the criteria (from a seizure point, he does) and hope that his blood work comes back okay! . . . . While we're down here were nipping in to visit @rebeccajcrosby in Leeds hospital too 😍🖤 couldn't be that close and not visit 😬 . . . . #keto #ketogenic #KIWE #sheffieldchildrenshospital #epilepsy #seizures #life #infantilespasms #tubie #hopeforhie #hieawareness #IS #hie #cerebralpalsy #cp
Late night updating medical records. This is my sweet boy’s life in print (2.5 years worth-not including birth/Vegas medical records), but he is so much more than what those papers say. This is just a small portion in the book he is still writing ✍️ . . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
When Fed Is Best Is Your Reality, Don’t You Dare Feel Inadequate .. .. When fed is best becomes your reality and all you’ve come to learn, love and appreciate about breastfeeding your child becomes the lesser priority, because the top priority is keeping your precious child alive. After four perfectly healthy pregnancies, four opportunities to nurse my children and nourishing them with what I felt was the very best option, I felt burden, even overwhelmed at times by not being able to do the same for Aiden.  With every ounce of my being I wanted to nurse him, but being in the fragile state he was in while in NICU, being intubated for a time with tubes in his mouth and later having feeding issues, I was unable to.  So you think, the next best thing to do it is to pump, because surely you can still do your part and help nourish your sweet baby.  Well, what happens when you’re in a stressful environment such as the NICU, where you face uncertainty at almost every corner, your day-to-day is praying that your child will breathe on his own, that he responds to treatments, makes it through surgery or even through the night?  Regardless of intentions, that type of stress can affect your body in ways that you couldn’t imagine.  As for me, I was unable to pump, I don’t mean physically…I would leave and go to the designated room for mothers, I would go through the motions and set up, but nothing would happen.  My body would not allow me to produce milk and my whole time in there trying to pump, I felt guilty for leaving Aiden, even though I was doing something that would ultimately benefit him.  I know we handle situations differently and I would never judge a parent for the amount of time spent or not spent in the NICU, but being that I was in another state away from my family, my life revolved around Aiden.  I was there before the nurses changed shifts in the a.m. and did not leave until late in the night after he was asleep.  Stepping away for lunch or dinner was hard, but I did it, because I knew Aiden was in good hands with the wonderful staff and his amazing nurses. (Continue Below)
When Fed Is Best Is Your Reality, Don’t You Dare Feel Inadequate .. .. When fed is best becomes your reality and all you’ve come to learn, love and appreciate about breastfeeding your child becomes the lesser priority, because the top priority is keeping your precious child alive. After four perfectly healthy pregnancies, four opportunities to nurse my children and nourishing them with what I felt was the very best option, I felt burden, even overwhelmed at times by not being able to do the same for Aiden.  With every ounce of my being I wanted to nurse him, but being in the fragile state he was in while in NICU, being intubated for a time with tubes in his mouth and later having feeding issues, I was unable to.  So you think, the next best thing to do it is to pump, because surely you can still do your part and help nourish your sweet baby.  Well, what happens when you’re in a stressful environment such as the NICU, where you face uncertainty at almost every corner, your day-to-day is praying that your child will breathe on his own, that he responds to treatments, makes it through surgery or even through the night?  Regardless of intentions, that type of stress can affect your body in ways that you couldn’t imagine.  As for me, I was unable to pump, I don’t mean physically…I would leave and go to the designated room for mothers, I would go through the motions and set up, but nothing would happen.  My body would not allow me to produce milk and my whole time in there trying to pump, I felt guilty for leaving Aiden, even though I was doing something that would ultimately benefit him.  I know we handle situations differently and I would never judge a parent for the amount of time spent or not spent in the NICU, but being that I was in another state away from my family, my life revolved around Aiden.  I was there before the nurses changed shifts in the a.m. and did not leave until late in the night after he was asleep.  Stepping away for lunch or dinner was hard, but I did it, because I knew Aiden was in good hands with the wonderful staff and his amazing nurses. (CONTINUE READING Full post ON 2nd Picture/Post—IG Issues).
This little guy steals my heart every day 💙💙 #babyboy #boymom #hieawareness #cerebralpalsy #growinguptoofast #babyboy 💙 #babyboylove
Goodbye 👋🏽Michigan and now back on the road again. Home to Vegas for a few days, then back to Home #2 in UT on Friday to meet with Aiden’s surgeon. — The occasion that brought us to Michigan was not what we wanted, but we are thankful that we were able to see and spend time with family. The kiddos were amazed and fell in love with the snow and had multiple snowball fights, Aiden made tons of new friends and many of the Michigan family met him in person for the first time ever, some tears were shared, but also good memories remembered about PaPa Hill that made us laugh & smile. If you don’t mind, I ask that you pray for our family, but especially our beautiful, sweet grandmother.....45 years, that’s how long PaPa & MoMo Hill stood married in love. I know her pain is deep, but I pray for her strength and comfort during this time. Love & Blessings~Kia . . #AidenMathis #LittleFieryGiftFromGod #AidenStrong #LoveHopeFaithForAiden . . . #CDHawareness #CDHwarrior #CHDwarrior #BPSwarrior #HIEawareness #CVIawareness #CerebralPalsyAwareness
Anyone else need this today?👊 : I had some cool metabolic mama recipes, successes, etc. to share this weekend, but life has had other plans. I haven’t shared this detail yet because there’s no cute photo for it (just kidding), but Jack is no longer 1 year seizure free AND he’s on an incredibly high dose of #Pyridoxine , which is scary bc the side effects = peripheral neuropathies. Jack jack has a super important EEG & Neuro appt tomorrow regarding lots of issues we’ve been having the past few months. 🧠 Our newest and scariest issue with Jack is how often he is falling + the way he falls (no protective reflexes so he hits his head every time). I know there is this huge gap between he and his peers; I see it and I feel it always. But now, that gap also looks dangerous and scary to me. I don’t want to hold Jack back, but he does not recover from a fall like other kids. I hope to share more soon, but I want to get a few answers before I jump down the rabbit hole. 🕳🐇 Like it says, “Fall seven times, stand up eight”. ⚡️ I know some other amazing medical mamas facing some big battles ahead. We will stand up, pick up our warriors, dust them off, and keep going as many times as it takes. Let’s do this, mamas! 🐉🔥 #fallseventimesstandupeight #medicalmama #epilepsymom #pyridoxinedependentepilepsy #inheritedmetabolicdisorders #inbornerrorofmetabolism #raregeneticdisorder #rareis #metabolicdisorder #rareisbeautiful #epilepsywarrior #epilepsyjourney #epilepsyawareness #hieawareness #hypoxicischemicencephalopathy #hopeforhie #braininjuryawareness #epilepsydoesnthavejack
OMGEEEEE!!! Jack jack learned a new word thanks to his new fave show on @disneyjunior. Can you guess the show?💄💅🏼👑👠👛🦄 . . Man it’s so amazing to hear this kiddo’s little voice.✨ Because his progress with communication has been so slow, we don’t really know what Jack’s voice sounds like. It sounds a little different each time he gets something down, but each time it’s the most beautiful sound ever. It doesn’t matter what he says, the cadence is mesmerizing. 💗💗 It is a truly magical process to watch this kiddo with classified SEVERE #hypoxicischemicencephalopathy learn to walk, talk, eat, and thrive despite what so many doctors said about him. There is truly so much hope for HIE! NEVER give up hope, mama... there is so much beauty in the process! (For reference: Jack is 2.5 years old and some days he signs, sometimes he speaks, and always he screams...inchstones are amazing) 🗣♥️🗣♥️ #hopeforhie #hieawareness #apraxiaofspeech #hiewarrior #differentabilities #pyridoxinedependentepilepsy #apraxiaawareness #hatleypjs #metabolicdisorder #rareisbeautiful #inbornerrorofmetabolism #epilepsymom #inheritedmetabolicdisorders #braininjuryawareness #metabolicmama #epilepsywarrior #cpwarrior #speechtherapylife #fancynancy #fancynancyfans #lovewhatmakesyoudifferent #celebratedifferences #globaldevelopmentaldelay #delayednotdefeated #epilepsydoesnthavejack
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