20.2K
HOWhat was care like for #HIE babies and families in the 1990s? #1990s #HopeforHIE #HIEawareness #NICU
@hopeforhie
#Hopeforhie
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30.4K
ATA Great Message 👉🏿 Repost from @kingsfight10: (Don’t allow temporary pain to leave a permanent stain! There is no way to escape the pain that comes with Life.. find your Happy in it! Your worthy of Happiness 👑✨King be so HAPPY TO PLAY🥰 he need some friends #lifelimiting #hypoxic #hopeforhie #lackofoxygen #adaptive #strongboy #qualityoflifematters)
@attorneycrump
45.7K
WEI saw that today was world cerebral palsy day, and wanted to share a little bit about what this diagnosis means in general + how it affects Levi specifically.
CP is a huge spectrum and every individual presents differently based on the cause — whether they had a brain injury from lack of oxygen, stroke, or something else that impacted brain development.
we learned very early in Levi’s life that he had CP. over time they’ve given him an official diagnosis of spastic quadriplegic CP. he also has a diagnosis of dystonia, so the combo of CP + dystonia really impacts his ability to move and coordinate his body, and the way his muscles move. he struggles with being really tense & stiff (especially when his dystonia is triggered by something like constipation, pain from teething, etc.) and has a hard time communicating from his brain to his body how he wants to move.
at times he seems frustrated by this, which I cannot blame him for! dystonia especially is a huge challenge to manage because it is constantly changing. he’s on a lot of different meds to help him stay comfortable and we still struggle with it often.
I’ve also read that people with CP can suffer from chronic pain and I do feel that Levi’s in pain often, which as a parent, is so hard.
I hope this helps give a glimpse into these conditions. but like I said toward the end, these diagnoses don’t define him. despite these challenges, he is so strong, resilient, sweet and when he feels good, the happiest boy with the biggest smile and best giggle.
we love our cp warrior so much 💚
#cerebralpalsywarrior #cerebralpalsyawareness💚 #cerebralpalsykids #cerebralpalsymom #cerebralpalsyawareness #cerebralpalsyfighter #hopeforhie #medicalmom #medicalmomma #medicalmama #specialneedsfamily #specialneedskids #disabilityparenting
@wellnessforthewin
37.9K
PAWhat a gift it is to watch their relationship grow right before my eyes. 💙
#cerebralpalsy #siblings #trach #gtube #hopeforhie #lifeisstillbeautiful #brothers #brotherlylove
@parenting.knowledge
8.2M
LIWhat a gift it is to watch their relationship grow right before my eyes. 💙
#cerebralpalsy #siblings #trach #gtube #hopeforhie #lifeisstillbeautiful #brothers #brotherlylove
@lindzgarrett
2.0K
OLWishing you all peace in this ever-less-peaceful world. My prayer for our broken people is that we may one day remember the oneness we all share and begin to align our actions with that knowing. Lofty dreams for the world today, but they are my dreams nonetheless.
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@monroviaboy #hopeforhie #cpkids #inclusionmatters #mentalhealth #lightoverdarkness
@oliversodyssey1
3.9K
IRMan I love this little boy❤️❤️❤️ #supercooper #hopeforHIE
@iron_man_cantrell
203.4K
LIMy favorite trend to do year after year. Our miracle boy will be SIX this Friday. 💙
#nicu #trach #cerebalpalsy #hopeforhie #medicalmom #gtube #lifeisstillbeautiful
@lindzgarrett
31.9K
HOHow many times has this happened to you as a #HIE parent in the #NICU and beyond?
#hopeforhie #HIEawareness #HypoxicIschemicEncephalopathy
@hopeforhie
58.9K
WEI wasn’t sure if I would ever share this video. This was taken months ago, during winter. I was just filming some PT with Levi, like I often do. I remember having a particularly hard morning and thinking that maybe seeing him work hard would lift my spirits.
I didn’t plan to cry or stage this video. But when I had a hard time cheering him on and pretending to feel positive, the tears started flowing. The guilt crept in. I felt like I wasn’t enough. I was ashamed that I couldn’t stay positive in this disability parenting journey and feel grateful for all that we do have, like others seem to do. I felt weak for not being able to pull myself out of the darkness.
But the reality is, life is hard. Parenting is hard. Parenting a disabled, medically complex child is extremely fucking hard. The mental and emotional (and physical) toll it takes every single day is so exhausting, you cannot possibly understand it unless you’ve lived it.
You can never turn your brain off. Never fully exhale. You always have to be ready for something bad to happen. You rarely get to truly rest, not for long anyway.
We go through so many ups and downs. Seasons that DO feel lighter, more joyful. And seasons where it feels like we are barely keeping our heads above water.
We’re juggling all of Levi’s needs while also trying to be good, happy, present parents for our healthy, neurotypical child, and it feels like we can never be enough for both of them at the same time. Sometimes that eats me alive. I hope they both know how hard we’re trying to be the best parents to both of them, and how much we love both of them.
Life is hard. Go easy on yourself, mamas. ❤️🩹
#medicalmom #specialneedsfamily #medicallycomplexkids #disabilityparenting #specialneedsmom #motherhoodunfiltered #medicalmomma #hopeforhie #medicallycomplex #honestmotherhood
@wellnessforthewin
1.1K
OL#accessibleadventures #offroadwheelchair @extrememotus #hopeforhie #gratitudeattitude #mountainlife
@oliversodyssey1
1.1K
IRWhen Cooper was born, we walked through a storm no parent is ever ready for. The horror of watching our baby fight for his life, machines keeping him alive, doctors saying words no parent wants to hear…😔 it was a pain that shook us to our core. The first few years were filled with fear, tears, prayers, and sleepless nights, wondering what the future would hold.
But God showed up. In the middle of that storm, He gave us a miracle. Cooper has defied the odds time and time again. He is stronger than we could have ever imagined and has shown us the true meaning of faith, hope, and love.
Today, when we look at him, we don’t just see our son…we see a living testimony of God’s grace. We are so proud of him, so thankful for him, and so blessed to be his parents.
#HopeForHIE #MiracleBoy #GodsGrace
@iron_man_cantrell
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