"I am truly blessed and thankful for this little boy. He is the strongest person and my superhero. With his walker he’s finally included." -- Ashley V.
On tap this morning. Daily saline and @katefarms
Core Essentials Peptide 1.5 rocket fuel. (Ft. @centrecollege
in the background). Had to make sure I got both running early so I can get in the fluids I need, and as much of the rocket fuel as I can get before I have to unhook a couple of hours before my appointment for my GJ button exchange. We used to just wait until the appointment was over to start feeds for the day, but now that Rog is back working and we have to go after school lets out, that’s obviously not ideal or feasible if I want to stay coherent (hey there, hypoglycemia) while we’re at the hospital.
Last Tuesday I had the same appointment scheduled with interventional radiology, yet their time did not match the time we had written down, so I double checked everything for today by making calls yesterday, so prayerfully all will go well. I don’t fancy the idea of blacking out from sitting upright, and having to lie across several waiting area chairs again (looking at you, POTS). But I’m thankful for the access to lifesaving/life-sustaining medical care, even when things don’t go exactly according to the original schedule.
How is YOUR morning? What do YOU have planned for today? (And yes, staying in bed and resting counts as a plan because sometimes that’s what’s needed)😊💛
“With a new day comes new strength”
This boy has shown us that today! This morning his pain was unbearable! Took the pain team hours to bring it under control, but he came out the other side with such strength! Although he didn’t want to be moved, he let us try, he didn’t want to eat, but made himself, didn’t want to to try to wriggle his toes but forced himself to try so hard, as he knows doing all these things helps him recover and in turn means going home. He hasn’t argued, hasn’t sooked, hasn’t had a meltdown! I am so so proud of him!
He is still hooked up to a morphine infusion, maintenance fluids and pain bolus when needed. He is having regular muscle relaxants to stop muscle spasms, nausea meds and antihistamines. He’s had Mic-key button bleeding (gastro team is working on why), had hard casts out on, itching badly because of the pain meds, yet through it all he has been the strongest out of all of us!
I honestly can’t thank you all for your loving and supportive comments, texts and messages! I have read every single one and will get back to everyone over time! We are currently admitted at @ladycilentochildrenshospital
until he can tolerate the pain enough to go home.
Remember to check out my Instagram Stories for more snippets of my days! (@itssamuelsstory
Much Love Simone xxx
#samuel #surgery #lcch #ladycilentochildrenshospital #hospital #admission #orthopedic #orthopedicsurgery #cp #cerebralpalsy #epilepsy #epilepsyawareness #tubie #gastrostomy #tubielife #goldcoast #brisbane #dinosaur #cast
We love the hospital so much that we came back to visit the ER with Gtube complications. Guys, I’m tired. This medical mama gig is such an emotional roller coaster.
#gtube #gtubebaby #medicalmama #tubie
Not sure I realized how stressful life after the NICU could be. I knew we were coming home on 24/7 oxygen, feeding with a g-tube, monitor for heart rate & oxygenation. But it kinda felt like all the hurdles were behind us, we just needing to wean off oxygen & introduce feeding. .
But life with a micro preemie can never be that easy. Hell, life with kids is never that easy! Toss in an oral aversion, bronchopulmonary dysplasia and pulmonary hypertension and remind me again why I thought this would be easy?!
I couldn't be happier she's home and she's thriving in so many ways. But it's just one obstacle after another. I mean, who knew a micro preemie who was just 1 lb 6 oz at birth could possible gain TOO MUCH weight?? Yep, that's another one of our problems. Continually decrease her calories yet she continues to gain weight. Then we try to get bloodwork to rule out a few possibilities and we can't even find a good vein. Like for real, could this girl make life a little easier for once?
I know we are so extremely blessed to have her home and watch her grow, doing exceptionally well for being born so incredibly early. But I guess after a while, that post-NICU high wears off and the reality of the possibly difficult life ahead sets in. Anyone else ever feel like all you see is mountains ahead and you're hoping maybe one, just one, could be a tiny mole hill instead?? Like, can a mama get a break over here??
Gastroparesis is more than just a stomachache. It’s a battle for life it is life altering and makes you fight every day. It’s late nights being in pain or waking up in a spill of your own formula and bile. It’s throwing up constantly to the point you can’t control it and require a feeding tube. It’s sitting in bed in tears because your in pain and just want to sleep but you can’t because you just threw up on your bed and need to clean up. GP is putting a smile on your face pretending none of this is happening to make others comfortable with what your going through! GP is a fight to have somewhat of a normal life. I work so hard to be positive not only for me but for my family and friends! Today I am a fight with my body to cooperate with me to not be in pain and to tolerate my feedings. The past two days I have not tolerating feeds and have been throwing up nonstop. I don’t know why but I just fight. I push threw and try for a better tomorrow I push threw hoping a new medication combination will work. I fight for a cure or a way for GP to be treated that I can tolerate and that works for me ! For now we keep fighting and searching for new ways and we hope for the better tomorrow and capitalize on the good times and good moments! Just remember to never give up and keep on fighting! I may be struggling now but tomorrow is a new day and a new beginning! Bring on tomorrow and the changes it will bring! #gastroparesis #fighter #sickfightsback #spoonie #chronicillness #chronicallyfabulous #chronicillnesswarrior #warriors #invisableillness #chronicallyawesome #feedingtube #tubie #livinglife #strength #loveyourself #fight #follow #followme #summer #summertime #summeradventures #epilepsy #fight #fighter #gpwarrior
After church yesterday, this thing in the picture with me attacked me in a Barnes & Noble bathroom. Be on the lookout for this bizarre creature. I hear it’s a dangerous parasite that will bore you to death by talking about Fortnite nonstop. You’ve been warned. #vaccinate
Doctor appointment today. After over a month and really the first appointment since surgery I finally saw my GI again. He thinks that and hopes that the main issue is that I’m allergic to Mic-key buttons so we switched to an AMT button. We have a plan of a few next steps such as GJ and a PICC line for fluids. Main goal: eliminate the pain Next goal: get nutrition and fluids to stop fatigue
I feel sort of defeated as this was not the plan I had hoped for and I still don’t feel very heard when I comes to a lot of my symptoms pointing to inflammation and infection. But I’m not a doctor..not that it matters bc it’s my body. Take it as it comes I guess. I’m currently feeling like poo bc button changes tend to make me a little nauseous. I hope I feel better tomorrow as I have a test in the morning. Trying to be still and listen to God’s plan. Even tho I feel like I’m exactly where I was a year ago, starving, fatigued, with no answers.
#chronicillness #invisableillness #ehlersdanlossyndrome #pots #gastroparesis #gtube #tubie #witch #autumn #fall #spoonie #celiacdisease
Quiet. Stand Offish. Snobby. Unapproachable. Misunderstood— All things i’ve heard to describe me the last few years as i’ve navigated the crazy journey of chronic illness and trying to figure out where my life and career are going to go. What you don’t see behind my fake smile is the brain fog i’m fighting due to Dysautonomia/POTS and the 16 medications i’m taking a day. The constant nausea/dizziness/vertigo/tachycardia/fatigue i’m fighting. The fear of never knowing when you’ll pass out/have partial seizures. It’s a struggle to fit in or find yourself again after losing yourself in the chaos of being chronically ill. But one thing I have learned- To walk humbly, seek mercy, and love fully EVERY single day- because i’m immensely blessed💕 I never want anyone to know the battles i’m fighting, especially the patients i’m helping everyday! But stop and think- that you have know idea what people may be going through as to why they may be “quiet”😉 #dysautonomia #mastcellactivationsyndrome #posturalorthostatictachycardiasyndrome #epilepsy #anaphylaxis #ehlersdanlossyndrome #servicedog #gastroparesis #gjtube #tubie
Today was #PalliativeCare
. It’s a wonderful construct! They care about yours and your #caregivers #QualityOfLife
, first and foremost. Today, they brought in a #SocialWorker
, and #doctor
. We looked at many aspects of my life and they even spoke with Brian about what he’s doing as a result of my health. I really recommend it for those with serious illness that can offer curative treatment (or not). This visit, they’re going to offer help with help for sleep & peripheral neuropathy. Also, talking to to the nutritionist, social worker & chaplain was good for our hearts & souls.
Check out my bio for my link tree 🌳 to my website 🕸, #Redbubble
🔴 & where you can register your consent to be an #OrganDonor
✔️Registered organ donor since 1994. #DonateLife #OrganTransplant #GiftOfLife #RecycleYourself #MakeLifePossible #PeaceLoveRecycle #D0n8life
#GIDysfunction #GJTube #Tubie #AutonomicDysfunction #hEDS #EDS #PituitaryAdenoma #PancreaticTumor #EndStageLiverDisease #ChronicPain #Spoonie #Migraine #CognitiveDysfunction
Did you know we’re a Vendor for an auction group on Facebook?! It’s your chance to score some awesome THD products at a STEAL! 😍😍😍 Next auction is THIS THURSDAY so be sure to follow the group (link on our Facebook page @taylorhartdesigns
) and check out all the other vendors involved! Sneak peeks coming tomorrow!
Well....now were in the next phase of this heart journey. Chloes oxygen saturations have been in the 60s and 70s. A normal persons is 97-100. The surgeons wanted hers to be 75-85. After a couple echos we see that chloe is outgrowing the BT shunt in her heart that was placed via open heart surgery at 3 days old. The BT shunt was just a temporary fix until her and her heart were big enough for her full repair. In about 2 weeks she will have a cardiac catheterization which will determine exactly when and how her full repair surgery will be. Until her full repair, chloe will need to be on oxygen 24/7. It sucks but it is only temporary and means we are close to her full repair!! ❤
#tetrologyoffallot #tof #chd #heartmom #heartbaby #medicallycomplex #tubie #gtube
Go out and show them how it’s done kid! ❤️
I want to remember her just like this. Fierce. Adventurous. Sensitive. More beautiful than I have words for. Silly as can be. A mama’s girl through and through. And brave as hell. .
Before I even knew her, I knew she would be different. I knew that being her mama would transform me. What I didn’t know is that she would breathe life into places that I didn’t even know needed resurrecting. My life would be a thousand times richer because of how she was formed + who God made her to be. .
To my almost-two-year-old, there’s a lot ahead of us. There are some big questions that on my hardest days, I’m scared to know the answers to. But as I recently heard, we have to GO SCARED. Show up. Do the things. Believe that we will not crumble. And when it feels like it’s the hardest that it’ll ever be, I’ll remind you of the fires you’ve already walked through. I’m rooting for you, little one.
Thank you Joseph's Genetic Journey for these super cute tubie pads! They are so soft!! They will send you some for free every few weeks or months maybe? This was my first time receiving them. I love them! I'm sure our baby boy will too! #gtubebaby #gtube #tubie #josephsgeneticjourneypaysitforward
this whole photo shoot she kept sticking her tongue out, which is FANTASTIC for learning how to eat. She is taking strides and eating more bites of cereal which is astonishing! Since Lucy was silently aspirating in the NICU she has to have a feeding tube placed in her tummy, that’s how she eats. But we’ve been working really hard to get her to swallow baby food with out gagging and throwing it up. My unbelievable husband has worked with her all weekend and she is hitting her stride. It’s a long process but we’re gaining ground. Go Lucy go!
#teamlucy #turnersyndrome #medicallyfragile
seed!!! in the SWEET 16 bracket for Coolest Thing Made in Wisconsin contest out of 160 companies!
Anna and I are without words. Honored, humbled amazed, grateful, privileged and proud. What started out as a means to make our lives easier has turned into being able to making a difference for so many families facing the same challenges we do. Us just trying to make a difference in this world!
Elite 8 voting starts tomorrow so we really need everyone's votes to make it into that round.
Remember to vote here everyday on every device.
#adaptiveclothing #medicallyadaptive #tubefed #tubie #rockyourq #Digeorgesyndrome #lifewithdigeorgesyndrome #22q #MadeInWis
CHILDRENS GROWTH AWARENESS WEEK HAS ARRIVED! "Forbes was born full term weighing 2 pounds. He’s now almost 2 1/2 and weighs almost 16 pounds thanks to nourish!
share with the world that tracking physical growth is a crucial step toward monitoring your child’s health. An abnormal growth pattern in children is one of the earliest indicators of an underlying medical condition. Don't let one more child go undiagnosed!" -- Jae B.
So I haven’t been great, had a Gastro appt last week and he’s pretty much said a surgical feeding tube is necessary, he’s written to a zarante lopez at UCLH (anyone seen her?? Apparently she’s a GP specialist) for advice on whether this is the best route to go down for me and also to see if she can see me soon. He’s trying to arrange a syringe driver with antiemetics for me in the meantime. Went to Chelmsford today to see my pacemaker surgeon and he’s admitted defeat and turned it off - apparently it can take up to 3 months to stop working completely so won’t be seeing him until December! Lots going on with work but I’m still really enjoying it even though it’s exhausting me! Wishing you all a low symptom day and sending lots of gentle hugs 😍😘 #gastroparesis #gastroparesiswarrior #chronicallyill #spoonie #tubie #nj #njtubie #gastricpacemaker
Obsessed with this pic of our bibs by @kalendallas
💙💙 notice the not so basic tone on tone ones? I’m thinking about adding a “Basics” line to THD - solid colour rompers, bibs, pants and perhaps tshirts and dresses. What do you think!? Is this something you’d want to see or do you love THD because it’s NOT BASIC?! Let me know below! 😘💙
Thank you to Mimi for watching Harlowe this weekend. I think from her face you can say she had some fun! 👧🏻💕
"I can't believe j don't have a recent photo w my mom, so here's me showing love for liquid hope lol. my mom Sherri is amazing and pushes herself to make anything happen! and she helped make this possible! I think she could really use a little pick me up." -- Lexie S. 😄
The moment you realize just how far God has brought you.
I never thought he’d drink from a bottle, but here he is. I don’t care that he’s just figured it out at 14 months, I think it’s the most beautiful sight in this home right now. .
The journey has not been easy, it’s far slower than we’d like it to be. We have years to go, but this milestone is a miracle to our family’s heart. Keep on growing strong little man. .
#ronanjude #nicugrad #tubie #cp #cpmom #littlevictories #miraclebaby #lifestyleblogger #specialneedsmom
I bloody hate hospitals! After waiting around in a waiting room for nearly 5 hours, I’m finally in a room ready for the resiting operation on my jejunal feeding tube tomorrow. •
GCU hospital is a great hospital once you’re in, but in a hospital this large, why have all scheduled inpatients check in early and at the same time, especially when they’re unaware what time each patient’s bed will become available (it’s always 5pm anyway)?! •
On a side note... HATE taking 2 days off training. Feel sooooo lazy lol 🏋🏽♀️💪🏼🏃🏽♀️ #hospitallife #wheelchairgirl #wheelchairlife #tubie #feedingtube #t1dlookslikeme #gastroparesis #hospitalbed #operation
Annalise the bee queen hanging out with her little worker bees 🐝😍 #beefacts
1. Only worker bees sting, and only if they feel threatened and they die once they sting.
2. Honey bees communicate with one another by dancing. #dancingqueen
3. . Honey is the only food that includes all the substances necessary to sustain life, including enzymes, vitamins, minerals, and water; and it's the only food that contains "pinocembrin", an antioxidant associated with improved brain functioning.
4. Honey is awesome 🤣🐝
#savethebees #bees #cerebralpalsy #tubie #beefacts
We are Home!
THANK YOU everyone for your well wishes and Prayers 😍
Ethan is feeling better, still not 100% but at least now he’s able to keep down his food and seizure medications.
He was soooo excited to leave that he was all smiles and talking to the nurses.(Video in my InstaStory)
Tube feeds. We had hoped and prayed that we could be done with you. .
I still remember the day that I was told you needed surgery to have your g-tube placed. Daddy had gone to work and we were still in the hospital with no idea when we would get to take you home. It felt like being punched in the gut after already being beaten up. Add this to the list of things that made me cry that first month and a half of your life. Turns out, when mama is in crisis mode, ALL the doctors listen. 😉 Daddy and I had time to talk and process the news. We were able to reschedule the surgery a couple of days and best of all, we were given news that we would be able to take you home! Decision made. Get the tube. We wanted to go home. .
It’s been just under 4 weeks since we stopped all tube feeds. You’ve been doing great but unfortunately not quite great enough. Cardiology told us we had to supplement at least 300 calories based on what you eat daily. We decided to attempt one quick tube feed nightly before bed. Terrified of causing your reflux to return, we started pushing the calories manually instead of using your pump. Guess what? Each night after your bath and when you’re in bed, you let us hook you up and in goes the formula! You even have started insisting on getting your own syringe of pediasure that you drink at the same time — bonus calories!!! Zero bouts of reflux. Miraculous. .
Mighty girl, you are rockin this and you know it. You have come SO far!!! 💖
#heartwarrior #tubefeedingawareness #tubie #mightymargaret #thisisournormal #gtube #fedisbest #chdwarrior #chd #chdawareness #hearthero #tetralogyoffallot #tof #pulmonaryatresia #vsd #mapcas #heartdisease #chdsucks #1in100
Hey there, I’m Autumn from over @raiseemwild
doing a HiB takeover this weekend!
I am a SINGLE mom backpacking SOLO with FIVE children, including my SPECIAL NEEDS sweetheart.
This is Story Grace the light of our life. She’s absolutely amazing and loves hiking and camping too! She has chromosomal abnormalities, microcephaly, and is legally deafblind. She cannot walk, talk, or eat by mouth. Her little body is fragile— so while I try my best to get her out to do as much as possible we still have restrictions. She will be turning four in November and weighs just under 20lbs. Who knew I would need an ultralight toddler?☺️
Babywearing + Backpacking:
How was I going to wear Story Grace and wear a backpack? Here’s the process I finally settled on: First, I snapped on her carrier waist belt a little lower than normal. Then, I put on my pack. Third, I have someone hand me SG, and finally snap the carrier behind my shoulders over the pack. This last step I absolutely cannot do on my own so it’s usually this crazy trick of me trying to squat with 50+ lbs so one of my boys can snap it for me. Once we are secure, the boys attach her feeding pump bag to the back of my backpack. It’s an interesting process for sure.
Currently, I am trying to figure out how to fit a lightweight backpacking chair with a harness to keep her in a seat so she doesn’t always need to be held.
I think this is an important lesson for my boys to learn: just because there doesn’t seem to be an obvious way forward doesn’t mean there isn’t one. With a little imagination, elbow grease, and Jesus we can do whatever we put our minds to.
I often hear people say they couldn’t handle a special needs child. Let me tell you it isn’t easy, but here’s how I feel about it: before she came along I saw the world in black and white and now I see it in color. With Story Grace comes deep heart break, but with this pain comes a richness to life you just can’t express. It’s like seeing the view from the top of a mountain— without the hard work of hiking to the top, you wouldn’t be able to savor the view.
Thanks for joining me for my fourth and final HiB takeover post!
I am so unbelievably thankful to be home and back with this doof. After going into septic shock in June and being in the ICU with everything touch and go at first to recovering from that, only to have high fevers on and off for months, to becoming septic again and having to be packed in ice, having my GI system deteriorate to where it is almost completely paralyzed, and my physical health, mental health, and quality of life be so low that I begged my doctors to consider stopping treatment and start solely comfort care and end of life care, finally things are looking up. The palliative care team from the children's cancer hospital have taken over my case and believe they can actually treat me and improve my quality of life. After a year of doctors telling me theres nothing they can do, that I might die, and almost dieing twice, I now have a team of doctors and specialists working together. Not only do they know what they are doing but they care, and even worked their asses off to get me out in time for my birthday! And I've met so many amazing people and friends along the way. These new people in my life are the best birthday present I could ever dream of. Who knew 24 would be the best one yet. 🎂🎉🎈
Between the weather and appointments I haven’t had time for a photo shoot! So here is an eyelash shot while I wait for an X-ray! 💕Marshall #wonsieambassador #welovewonsie
Our lilah is home and doing so much better! She is still in quite a bit of pain but it is managed with medication. Her disposition is a far cry from that first day out of surgery; a day I wouldn’t wish on anyone to be frank. And the swelling has come down so I can see that her bellybutton isn’t ruined! I know right, it’s a big deal 😉
It would be near impossible to adequately put into words the love and admiration we have for this girl. She is so brave and strong. Lilah just tolerates. And most of the time she does it with such a happy disposition. We are so proud of the fight she is putting in everyday to get better. And we are so thankful for the countless prayers that have been said on our behalf. We do not take the magnitude of the power of prayer lightly. So thank you!
#cutiewithatubie #gtubebaby #tubie #medicalmama