• F R E E A S A B I R D •
I don't think I have ever seen C so smiley. From the minute he walks through those gates today he was so giggly & kept grinning from ear to ear.
Last week he told us that he wanted to ride Sparky more. So we are going to start doing Hippotherapy twice a week! 😍 It's so amazing to see Cayden become so passionate & excited about his hippotherapy.
He loves petting Sparky & tossing carrots into his bucket. The connection he has with animals is so heartwarming to see. If you've never tried Hippotherapy/Equine Therapy or Horseback riding. I highly recommend it! 🐎 .
9 hours ago132
When Knox was born, I would watch him try his hardest to get his chubby little thumb into his mouth and I knew at that moment that this Mama had a thumb sucker.
Thing is, he was never able to land his thumb in his mouth but after much persistence he was eventually able to get his pointer finger in and boy did that bring him comfort. I thought it was unusual but really quite cute. Little did I know at the time but that was one of many signs that my Son had Cerebral Palsy. He wanted his thumb but the damage done to his brain wouldn’t allow his hand to open up for him to get his thumb in the correct position. What this Mama thought was cute and sweet was actually a sign that something wasn’t right.
Now, the finger in the mouth is a sign that this strong little boy is tired and needs a nap 💤
It’s amazing how your life adapts to things you never knew you could do in life, you wake up and do things without a second thought..
This is Ryan’s medication each morning , 5 different drugs and a flush of water before we start bolus feeding him his milk.
In one day he gets 13 dozes of medication and 3 feeds.
Today was Dominic’s last day of HBOT! He completed 40 dives at 1.5 ATA with 100% oxygen for 45 min with 2 five minute air breaks. It’s been a crazy couple weeks during this, but has definitely been worth it! Dominic’s seeing gains in sensory, vision, and spasticity! He also has 5 new teeth just since starting the treatments!! First pictured is Dr. Wennerstrom. She’s amazing! Her daughter’s very close in age to Dom and they got to play with each other often ❤️ The second pic is Amy. She monitored us during most of our dives and has been doing this for 25+ years. Her and Dom became good buddies! Dr Carey, Amy, and every single one of her staff treated Dom and I like family. We’re going to miss seeing the girls everyday!
Now that we’re done, he’s going to take a 2 week break from oxygen at home. Then for 4 weeks he’ll go back to getting O2 at 2L for 45 min 2x a day 5-6x/wk. Then we’ll talk to Dr Carey and see from there. (This is part of Dr Harch’s new protocol)
Hyde update: Well I have sever degenerative arthritis. Missing quite a bit of cartilage when my foot connects to my leg and in a few other spots. Best way I can ease the pain is either get a ankle fusion but would lose the mobility in my ankle, get a ankle replacement surgery but the doctor said I'm too young for it but that may be what has to happen. Got a cortisone shot...hurt more than stretching my ears 💀 should last for a few months when it finally kicks in. Didn't talk too much about the MRI because of all my past surgeries it was hard to tell the old damage from the new damage. Pain and bad news today but keeping my head up high and staying hopeful 😁 #CerebralPalsyWarrior#SpasticDiplegia#HydeIsActingtheFool
Thought I would share one piece of our bedtime routine for those of you wondering what setting up TPN looks like every night! This bag then gets hooked up to a permanent IV on Brody’s chest (called a central line), and gives him extra nutrition since his digestive system can only handle about half of what his body needs. Without this right now, Brody would quickly become malnourished and starve.
Our supplies are delivered to our door every two weeks, and much of it is stored in a special refrigerator - all of it, sterile. We have done this procedure over 400 times, so we have gotten quite quick at it! It usually takes us about 10 minutes, plus a few extra steps not in the video.
After this, we give him a bath, administer a reflux medication, and prepare his formula and feeding bag for his overnight feeding pump.
Disclaimer: if you are also a HPN expert, GO YOU! Please remember that every team’s procedures are slightly different, so if mine doesn’t look exactly like yours, don’t worry! 😊
Absolutely breaks your heart when this one says “mam I was upset this morning because I cannot walk” you might not be able to walk but you are the strongest little boy I know, everything you go through in life and you still have a smile on your face. We are so proud of you!! 💔💔 #cerebralpalsy#cerebralpalsykids#cerebralpalsywarrior
Spastic hemiplegia is a neuromuscular condition of spasticity that results in the muscles on one side of the body being in a constant state of contraction. It is the "one-sided version" of spastic diplegia. It falls under the mobility impairment umbrella of cerebral palsy.
Cerebral Palsy is the most common motor disability in childhood.
Cerebral means having to do with the brain.
Palsy means weakness or problems with using the muscles.
Symptoms of Hemiplegia.
•Muscle stiffness or weakness on one half of the body.
•Favoring one side of the body.
•Keeping one hand fisted.
•Difficulty balancing and walking.
•Lack of fine motor skills.
•Developmental delays, especially with motor skills.
My disability challenges me daily. Some days are easier than others.
Some days I’m in more pain than others.
Some days my body frustrates me more than others.
But I’m glad that I was born with Cerebral Palsy because it has made me an emotionally strong and brave person. Plus I have a really high pain tolerance so a lot of pain that the average person might find unbearable, is pretty bearable to me.
I used to be embarrassed about my disability, sometimes I still am when I struggle to get around. But I’ve realized that I can’t get rid of it so I might as well embrace it and work with it, rather than trying to fight it.
I have a wonderful support system full of people who help me whenever they can, love me unconditionally and never give up on me even when I’m close to giving up on myself. I appreciate each and every one of these people more than they can imagine.
I am different, not less.
This crutch is called Constance. She helps me get around on bad days.
3 days ago2998
Хочу сказать огромное преогромное спасибо каждому из вас за помощь, поддержку и веру в нашего маленького героя! Благодарим всех, кто с нами идет с самого рождения и тех, кто присоединился совсем недавно! Мы ценим каждого из вас!❤
🎬Смотрите сами! Вы причастны к этому событию как никто другой! Максим пытается идти за одну ручку по улице из центра до машины! Это просто непередаваемая радость! А за ней годы работы, вложенных сил и веры! Он не закручивается в сторону и не падает! Старается себя удержать!💪
Спасибо всем вам за то, что даете силы и энергию двигаться дальше! Идти нашим путем! Вопреки всему!
Мы не сдадимся! Потому что от таких моментов растут крылья за спиной и хочется еще большего!🧚♀️
Ждем ваших ❤!
И пусть в вашей жизни всегда будет вера и место для чуда!🙏
November 17 is World Prematurity Day and because of that Mason will always have two days of celebration for his birth!! Some people never get to meet their hero, 🤗🤪 I gave birth to mine. So if y’all are wondering why the Empire State Building is purple tonight that’s why. Let’s light up the world purple for the preemies!! Superhero Mason is a little miracle. .
These pictures are from his first day in this world vs today.
Christopher Hills has cerebral palsy but he is determined to live life to the fullest despite his limitations. Christopher participated in this year, City to Surf to raise funds for the Cerebral Palsy Alliance. Christopher used a new racing wheelchair and was assisted by the Cerebral Palsy Alliance's fundraising team who helped him up Heartbreak Hill to cross the finish line.⠀
When Christopher was eighteen, he started his own video editing business called ”Switched On Video Editing”. For more of Christopher's story visit my blog ⠀
Watching #bbcchildreninneed2018 from a very different perspective this year! Never in all of my wildest dreams did I think I would be a parent with a child receiving help from this, but then I don’t suppose anyone ever does 😔 steps conductive education centre receives a lot of their funding from children in need and the place has been a lifeline for us.... they are amazing with Joey and the staff work tirelessly to help him reach his potential. I don’t share my feelings a lot but I am not ashamed to say joeys diagnosis floored me, I’ve been through every emotion, guilt, blame, anger, worry but week after week they are there to listen, help and share the load.... ❤️#bbcchildreninneed#childreninneed#cerebralpalsy#cerebralpalsywarrior#conductiveeducation