#vpshunt

MOST RECENT

☉What a fab day at Aden country park! Walking, playing, eating, exploring and walking through the fairy garden. The weather couldn't have been better and I so enjoyed eating lunch outside. We will definately be back with either a picnic or bbq next time. A really great day and would throughly reccommend 👌☉ #spinabifida #Hydrocephalus #spinastrong #spinabeautiful #spinabifidaawareness #vpshunt #shuntrevision #ChannelMumVillage #channelmum #vlogger #scotland #dearmums #mumsnetparents #mumsofinstagram #ourlittlefighter #familyoffive

That hospital life. Looks like we are getting out of here tomorrow!!🙌🕺💃🕺💃🕺🙌 i can hear some of y'all clapping all the way over here😂😘 walked only 5 miles this morning. My feet are killing me from walking almost 11 yesterday.😞 but i ended up at a huge farmers market and had a great time buying goats milk lotions and soaps and sampling local honey, homemade soda and fresh produce😍 i need these breaks for my own mental health and while he takes his multiple, long naps there is nothing for me to do anyway but listen to the fan or read. I'd rather be outside and called when he awakens. Helps me maintain my fragile mental health balance and i usually get meditation, cardio and even yoga in. Win win for all. ☯🙏💕❤👣 happy Saturday loves. Kisses. ❤❤❤❤❤❤❤❤❤❤❤❤❤
Paypal.me/shannonwitt instead of gofundme bc of the fees and charges they have. This way 100% goes to us. ❤❤❤❤❤❤❤❤❤❤❤❤❤
#musc #bleed #factorviideficiency #glanzmannsthrombasthenia #chronicillness #momlife #love #children #hospital #chronicpain #hydrocephalus #freebleed #peace #positivevibes #goodenergy #mum #positivity #strength #charleston #southcarolina #goodvibes #themoreyouknow #raredisease #educate #vpshunt #embolization #hospitallife #mentalhealth #freeyourmind #neatandtidy

💖Mummy let's go on a roadtrip! Ok Bella. Today we're off somewhere new, to explore and let the boys burn off some energy! I love driving and love exploring new places which most of the time are right on our doorstep. Scotland really is beautiful with so many hidden gems. 1 place I DEFINATELY want to explore soon is the west coast, it looks beautiful with gorgeous beaches which the boys would love! Have you been? Can you reccommend somewhere to stay? It's definately on my 'to do' list for next year! Hope you all have a fab weekend. Keep an eye on my instastories to find out where we go today!😘 p.s Bella's cute pink romper is from @white_bunny_boutique 💖🐇
#spinabifida #Hydrocephalus #spinastrong #spinabeautiful #vpshunt #shuntrevision #spinabifidaawareness #ChannelMumVillage #channelmum #vlogger #scotland #dearmums #mumsnetparents #mumsofinstagram #ourlittlefighter #familyoffive

I was sent on a @redbox mission for #gta5 for @xbox (thanks nurse nick for hooking him up while he is here, I'm kind of indebted for you making the lamb stop screaming)... couldn't find it but y'all didn't think i would give up did you?! I'm ex military! Hunted until i found it... no easy task in a college town. 👏😋💋🎶🎧🙏❤✌ ❤❤❤❤❤❤❤❤❤❤❤❤❤
Paypal.me/shannonwitt instead of gofundme bc of the fees and charges they have. This way 100% goes to us. ❤❤❤❤❤❤❤❤❤❤❤❤❤
#musc #bleed #factorviideficiency #glanzmannsthrombasthenia #chronicillness #momlife #love #children #hospital #chronicpain #hydrocephalus #freebleed #peace #positivevibes #goodenergy #mum #positivity #strength #charleston #southcarolina #goodvibes #themoreyouknow #raredisease #educate #vpshunt #embolization #coils

I feel like we really accomplished something in our meeting today! This will be on the door during all visits and we also made a bleeding action plan that is pretty amazing. I'll dm that to anyone interested for their kids with gt. @holly.k.smith i should get you to make these look amaze-balls✌❤💋🙏☯ ❤❤❤❤❤❤❤❤❤❤❤❤❤
Paypal.me/shannonwitt instead of gofundme bc of the fees and charges they have. This way 100% goes to us. ❤❤❤❤❤❤❤❤❤❤❤❤❤
#musc #bleed #factorviideficiency #glanzmannsthrombasthenia #chronicillness #momlife #love #children #hospital #chronicpain #hydrocephalus #freebleed #peace #positivevibes #goodenergy #mum #positivity #strength #charleston #southcarolina #goodvibes #themoreyouknow #raredisease #educate #vpshunt #embolization #careplan #actionplan

Spanish time with Mikey 📚 Our Little Secret: Sometimes we hide out in my closet and open this big Tupperware full of flash cards, books and games that my sister gave us . Get away from the world while also keeping him contained within a tiny space #WinWin #MyKindergartener #SuperMikey #23weeker #Micropreemie #CerebralPalsy #Hydrocephalus #VpShunt #SpecialNeeds

Spending time with his favorite hospital hooman, his child life specialist, Layne. She actually works in ICU, but always visits when he moves to a regular room and comes when he has physical therapy or anything stressful to help him with his ptsd induced anxiety attacks. People like her make these trips amazing, even when hell is happening around us, she inspires, soothes and calms. ✌🙏🙌❤💕⭐ @musckids ❤❤❤❤❤❤❤❤❤❤❤❤❤
Paypal.me/shannonwitt instead of gofundme bc of the fees and charges they have. This way 100% goes to us. ❤❤❤❤❤❤❤❤❤❤❤❤❤
#musc #bleed #factorviideficiency #glanzmannsthrombasthenia #chronicillness #momlife #love #children #hospital #chronicpain #hydrocephalus #freebleed #peace #positivevibes #goodenergy #mum #positivity #strength #charleston #southcarolina #goodvibes #themoreyouknow #raredisease #educate #vpshunt #embolization #childlife #amazingpeople #imwhatspossible #imaginewhatspossible

✨Casual conversations about Friday with my little man ✨

#friday #11weeksold #34weeker #preemie #vpshunt

“Be proud of all your scars. They are badges of honour you’ve earned from the challenges that life has thrown at you. Your scars are a sign of strength and resilience. A sign that you choose to keep surviving” • Laura Lee • It’s discharge day! Wow, what a relief after the last three days of major post-op struggles and suffering from typical EDS crashes including severe dystonias, dysautonomia and adrenal insufficiency attacks, and pain like no other - exhausted doesn’t even begin to describe how my body is feeling. You’d think this being my 6th neurosurgery it would become easier, but each time it gets more difficult as my body becomes more fragile. This is just the beginning of a long journey of further surgeries that lie ahead of me. But, here’s to being the first EDS patient in the U.K. to undergo these series of pioneering brain and neurosurgeries - I’m hopeful that this new path of treatment will help restore the necessary bloodflow to my brain and neck and give me another chance at life. I choose to keep trying because there’s so much more life I have yet to live. Thank you for all your incredible love and support from across the world, each one of you gives me the spark of hope I need to keep going #zebrastrong #nevergiveup #hope #brainsurgery

How cool is this? You can see his vp shunt AND his new metal embolization coils! Looking for the cause of his headaches. They thought he may need a vp shunt revision, turns out it's the metal coils you see on the side of his face causing migraines 3 times a week. Only solution is pain management clinic but that's better than another surgery!👏❤✌🙏 ❤❤❤❤❤❤❤❤❤❤❤❤❤
Paypal.me/shannonwitt instead of gofundme bc of the fees and charges they have. This way 100% goes to us. ❤❤❤❤❤❤❤❤❤❤❤❤❤
#musc #bleed #factorviideficiency #glanzmannsthrombasthenia #chronicillness #momlife #love #children #hospital #chronicpain #hydrocephalus #freebleed #peace #positivevibes #goodenergy #mum #positivity #strength #charleston #southcarolina #goodvibes #themoreyouknow #raredisease #educate #vpshunt #embolization #coils

Es juuuuuuuckt so 😂😂 auf dem ersten Bild seht ihr meinen #shunt den ich im bauchraum hatte, ein sogenannter #lpshunt . Schon irre so ein Teil. Das 2. Bild zeigt das Dingens zum verstellen des shunts und tja am 3. Bild meinen Kopf 😊 wächst aber bis zur #hochzeit alles wieder nach. Mir gehts so lala, der #coldman shunt muss halt erst richtig eingestellt werden. Ich bin guter Dinge! #pseudotumorcerebri #ptc #shuntygirl #intrakraniellehypertension #liqor #lumbalpunktion #gesichtsfeld #vpshunt #uniklinikregensburg #neurochirurgie

Today I got the chance switch places and for once, NOT be the patient. Took my dad for his first infusion and it was definitely a role reversal. He’s missed work to take me to countless doctor appointments, stayed with me during my hospital stays only leaving to care for MY dog. So finally, I’m given the opportunity to start giving back even in this small way. 😊
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#hydrowarrior #hydrocephalus #hydrocephalusawareness #brain #surgery #brainsurgery #neurosurgery #chronicillness #shuntlife #vpshunt #hydrocephaluswarrior #spoonie #warrior #infusion #hospital #givingback #grateful #thankful

🐎Bella absolutely loved 2's group yesterday. So much to see and do and enjoyed the songs too!👌 As for my cardiologist appointment, they still don't know why I keep fainting despite lots of tests. Im obviously just one of those people where it takes a bit longer for the blood to leave my heart and travel to my head. I have a heart monitor on just now but they don't expect to find anything but will continue to keep an eye on me.
The sun is shining here and its a beautiful day! Boys are at school & nursery then Oscar has a birthday party at soft play afterwards. I've decided to do/go somewhere different this weekend with the kids so if your local to Aberdeenshire, any reccommendations would be greatly appreciated! Lets hope the sun hangs around for a while. Happy Friday everyone 😘
#spinabifida #Hydrocephalus #spinastrong #spinabeautiful #spinabifidaawareness #vpshunt #shuntrevision #ChannelMumVillage #channelmum #vlogger #scotland #dearmums #mumsnetparents #mumsofinstagram

I'm out of high care and into neurology ward in my own clothes. Feeling much perkier this morning, despite the pain.

#ih #vpshunt #recovery

Another successful doctors appointment, Caleb had his MRI done.. his results came back clear, his #VPShunt is working as it should. No needs to worry about anything. Dr. Weprin was happy with the results and we have one more MRI scheduled for October & if that comes back clear as this one, his appointments will now be once a year instead of every 6 months. 🙏🏼 to learn more about Caleb’s miracle story, click this hashtag: #miraclebaby_c 👈🏼 .
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#calebandweprin #hydrocephalus #hydrocephalusawarness #hydrocephalussurvivor #hydrocephalusbaby #miraclebaby #miracles #blessing #allglorytogod #neurosurgeon #neurosurgery

NEW post is up- link in bio 🔘Normal. What is normal?
I am the same in someways but I am different in every single way.
I now think of my life and how I reference events and categorize them, pre-Hydrocephalus and well, now. As well as pre-Shunt and now. Yet, can I really say pre-Hydrocephalus if it was brewing in me for years like a slow cooked stew?
I'm happy in some weird way that this happened to me when it did. I wasn't married or in a serious relationship. I didn't have kids nor was I in my beginning years of college trying to enjoy every minute of it. I was kind of in this in between time and still living at home, it was kind of a blessing in disguise in that way. And it's not to say that down the line when I do have kids and I am married or in a serious relationship that I won't need a shunt revision or future surgery but at least I know what I'm dealing with now! ✨So here's to taking full advantage of the moments and days when I feel good, because with Hydrocephalus you never know when another brain surgery is lurking around the corner.✨🔘 Here are some photos of life “pre-Hydro”. I had some good care free times but I have definitely learned more about myself in the last few years while dealing with my medical journey than I have in the 23 years I live prior, combined and I wouldn't change a thing...
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#hydrocephalus #hydrocephalusawareness #hydrowarrior #hydrocephaluswarrior #neurosurgery #brain #surgery #brainsurgery #chronicillness #invisibleillness #warrior #vpshunt #shuntlife #spoonie #medicaljourney #lifejourney #lifewithhydrocephalus #lifewithchronicillness

#TBT to that time you were extubated and placed on the CPAP 👶🏽❤ You were starting to discover that sweet voice of yours and learned how mobile you could be 🤗
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#Hydrocephalus #VPShunt #HappyBaby #CuteBaby #Smiles #MyWorld #Hero #Preemie #Miracle #Baby #FTM #NICUMom #MicroPreemie #25weeker #AllTheGloryToGod #Blessed #Faith #Bebe #MyHeart #Strength #Courage #LilFighter #Warrior #Lion #MilagrosDeDios #HydroWarrior #Extubated #CPAP

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