~ Evie's mom
Wednesday, November 25, 2009
~ Evie's mom
Thursday, November 19, 2009
They talked and laughed about the different ways they've found to adapt to life with the use of one hand. They shared information about living on their own, adapting a car, and managing epilepsy.
I don't know if there was a dry eye in the room as we listened to these accomplished young people interact with the parents of younger children. While they face many struggles, it seems that these struggles have given them strength, empathy, and a great deal of wisdom at such an early age. I look forward to hearing from them every year at the annual CHASA retreat and learning more about their adventures as they enter college, jobs, and start their families. I feel very honored to know every single one of these young people.
~ Nancy Atwood, Founder, CHASA
Wednesday, November 11, 2009
My daughter, Layni May, is 11 months old and a very cheeky little monkey! She suffered a stroke at birth and as a result has right sided hemiplegia. The news was upsetting and with Layni being born only 11 months after her brother I knew the future was going to be challenging!
Layni began having visits from the Physio therapist and Occupational therapist from 4 weeks old. She uses her right hand as a support hand really well and quite often looks at it in amazement, as if it’s a new toy she hasn’t seen before. She can sit unaided and is beginning to lean on her left arm and reach for toys. She is very determined and is desperate to follow and play with her older brother and sister around (being a third child has it’s advantages!).
I truly believe that things happen for a reason. This will not only make Layni a stronger person but it has already bought our family closer together. Spending time in the NICU has made me learn that I cannot take my children for granted and to love, enjoy and cherish all my time with them. I have no doubt that she will achieve whatever she sets her mind to and she will overcome the obstacles in her life in one way or another! I am so proud of her and my family.
~Layni's proud mum
Wednesday, October 28, 2009
We have a long road ahead of us, as we move our things from the house we are currently renting to our new house, unpacking things, and making this house our home, but I am more than ready to do so and cannot wait to do so!
After having the experience of doctors stating that I would not even live to see my first birthday, I am so thrilled to have the opportunity to purchase this new home with my husband and look forward to see my future family grow happily and with my fond memories in this home.
~ Julie (Julie survived a stroke when she was just 3 days old)
Tuesday, October 20, 2009
I found the perfect tricycle, it even has a handle for me to push and steer him with. He fell in love with his new toy and we go for a bike ride everyday. He’s learning how to pedal it himself and is trying to keep up with the rest of the gang. We have four children, Tyler, 11, Mark, 10, Lila, 4, and Matthew, so he has many acts to follow and learn from. We are proud beyond words of our little boy who suffered a stroke during open heart surgery at just two days old.
The doctors didn’t know how the stroke would affect Matthew at the time, but look at him now. He has accomplished many things and has overcome many obstacles in the past two years. He walks, runs, and plays just like everyone else and is as happy as can be. And now, he even rides a bike! Way to go Matthew!
~ Matthew's mom
Monday, October 12, 2009
Well, Danny has played MANY sports over the years. He started organized sports at the age of 5 and has never stopped. Baseball, basketball, football (flag and tackle), tennis, ping pong, bowling, soccer, and probably some I'm forgetting. He started playing on local parks and rec teams. He is always average to above average for ability.
Danny has use of only one hand and wears a leg brace. He runs with a slight limp and is pretty fast, considering. Danny's right hand is not strong enough to be a helper, he uses one hand for everything. He played on a very competitive football team for 4 years. He played 2nd string defensive end. His highlights include a recovered fumble and a QB sack. His coaches and teammates love him.
The time came. He is now in 7th grade. The program in this school...in this district... is fierce, large, strong and competitive. He has never had to "try out" for a team before. As these kids get older, they get really good. The days of everyone is on the team and everyone plays are over. Would he make it? Is he good enough? About 60 boys tried out for 35 spots. We encouraged him. We cheered him on. We told him there is no shame in being cut...if that happens. Plan B would be to practice tennis (which he is very good at as well).
Team selection day came and Danny is on the TEAM!! He proudly wears his jersey to school on game days and works hard in practice (overcoming sore feet and blisters from his AFO). He appears to be on 2nd string defense again and we are thrilled. For anyone wondering about sports for their kids, we suggest to let them do whatever they want to do. Anything is possible. Many people question our decision to let our son play tackle football. I question it too sometimes, but I cannot bring myself to tell him no. And the smile on his face when he is on that field lights up the world. ~ Danny's Mom
Tuesday, October 6, 2009
On January 16, 2009 Nate had a right hemispherectomy at UCLA. And 5 days later we saw his last seizure we EVER hope to see! Prior to his surgery, he could not sit up well on his own, much less crawl or walk. He also had to have a shunt surgery in March but since then he has started to make great gains in his development. 6 months later, he is pushing to sit on his own, starting to try and butt scoot and even taking independent steps in his walker! And the best news is we got our happy, smiling little boy back! Plus in May, he got a baby brother to boot! I just know they will be best buds someday and will really help Nate's progress as he continues to grow up. ~ Nate's mom
Sunday, September 27, 2009
Emilia is 2-1/2 and has left hemiplegia. A year ago she was learning how to walk and kept her left hand close to her.
This year she was a flower girl in her aunt's wedding. Emilia walked down the aisle holding a basket and tossing flower petals, then danced and twirled her way through the reception!
~ Emilia's Proud Mommy
Tuesday, September 22, 2009
This summer at age 7 he can jump off the diving board swim to us by himself. He can go down a water slide and swim to us. He can jump into the pool and swim to us his own way. He said ""I did it! I did it! I can swim!" Here is a picture of his brother Evan (age 5) and Cameron at the pool. Way to go Cameron! ~ Cameron's mom
Monday, September 14, 2009
The best thing - about four feet into this crawling - he looked back over his shoulder and gave us this huge "I'm so proud of myself" grin. We immediately started cheering and whooping and clapping, not stopping despite the odd looks we were getting from the many parents who stared not knowing how much work had gone into that moment or how proud we were of Isaiah's perseverance. Isaiah has a diagnosis of right hemiplegia and schizencephaly.
Over the past month, Isaiah has been standing independently and taking 3-4 steps before getting down to crawl. This morning when I dropped him off at daycare, I put him down in the middle of the floor and he walked about 10 feet before getting down. And, about halfway through he gave me that same over the shoulder look of being so proud of himself, and I cheered. The big difference was that this time his teachers joined in and the other kids of course were mimicking us, and the teachers knew how big this was for him and exactly how much work has gone into it. It was amazing! And, I felt so thankful to be able to share that moment with his teachers who are so supportive of him day in and day out. When he dropped to his bum, he joined in the clapping! ~ Isaiah's mom
Tuesday, September 8, 2009
We had the pleasure of attending the 2009 CHASA (Children's Hemiplegia and Stroke Association) retreat ecently. We saw Brock get on the stage without any pushing and come alive "singing" karaoke with others. ~ Brock's mom
Monday, August 31, 2009
Sunday, August 23, 2009
Now, she can scale up and down that entire wall independently, and rather quickly (gripping with both hands, I might add!)!! Some of the 4 year old boys in her class can't even conquer that wall! We're so darn proud of her. Nothing will stop this girl.
She even recently started being able to lift her body weight off of the ground while hanging with two hands from a bar! Hannah's in utero stroke was quite large (left middle cerebral artery), so watching her strength and agility when she climbs things is just beyond belief.
Our little climber is also very sweet, very talkative, and smart beyond her years. And she's probably one of the few 3 year olds who loves to look at maps/globes and knows the capitals of more than 20 states. ~ Hannah's mom
Sunday, August 16, 2009
First jobs are a major part of growing up for most teenagers, for Joel who has had Left Hemiplegia from birth this was another milestone achieved and we could not have been prouder of our son. He is an inspiration to us and those he meets. While at work one day a woman asked if he had hemiplegia and said it was great to see him working as her young son also has hemiplegia and it gave her hope.
Joel has been accepted into the workforce and a year down the track is still working hard and has a long list of items bought with his hard earned money as well as saving for a his first car. ~ Joel's Mum
Monday, August 10, 2009
Taylor is such a joyful boy and is always the favorite of all the doctors and nurses. He is always smiling and gets so excited when he learns to do new things.
Lately Taylor has been trying so hard to walk. When he first started trying he would laugh so hard that he would lose his balance but he would get back up and do it again. He can take 4 to 5 steps now and he likes to climb up the steps to slides and climb down again. Taylor is truly an inspiration to everyone who knows him.
~ Taylor's Mom
Monday, August 3, 2009
Aine had a stroke in the womb and was given a grim but uncertain prognosis. She was born with cataracts and hemiplegia and we were ready for the worst but every day she shows us that we were wrong to ever feel sorry for what had happened.
Aine is a happy, lively and inquisitive child. Here she is with the cow in question (although they're both older than this now)!
~ Aine's Dad
Sunday, July 26, 2009
Well Byron did learn to walk (yahoo!), but I still carried him on our park walk. It’s a half mile through some rough terrain and I was certain he would get too tired to walk himself. Finally, last week, I decided to see if he could do it – and lo and behold, he did! He walked the entire half mile walk. I brought along my camera and here’s a little video of it. It’s a bit long so feel free to just tip your toe in! http://www.youtube.com/watch?v=Kjpd0xi4RQU
Byron continues to amaze us, at 28 months he’s pretty much doing what every kid does, running, climbing, talking. He does it in his own way and in his own time. There are days that go by when I don’t even think of Byron’s “special need”. He’s just our gorgeous, wonderful Byron!
~ Byron's mom
Tuesday, June 16, 2009
Friday, June 5, 2009
Last night he was on his back and sat up completely! He did it the way that we have all be showing him. He rolled to his strong side and put his right arm out and BAM! I yelled for my husband and Gavin sat up five more times.
He woke up this morning and he's still doing it. We are so happy! Now, for the other side!!
Monday, May 18, 2009
Oscar is 12 years old and has right sided hemiplegia (paralysis of his right side).
Thursday, May 7, 2009
As some of you may have experienced...I'm here proving my doctors wrong! After 30 years, 30 of which the doctors said I would never see, and if I survived past the first year, I might be in a vegetative state....Boy, was he wrong!!!
For those of you with youngsters, I hope my note here leaves you with great encouragement and hope for the years to come. I am so happy to have proved the doctors wrong, helped to have given my family the hope and faith they have today with all my successes, and to be the independent and successful person I am today.
Let's see... here are some of the things, I do that they said I would most likely not do; walk talk, skip, run, ride a bike, tie my shoes, swim, live without my parents, finish school, work 2 jobs at the same time, drive, and so much more.
I am happily married to a wonderful man who sees me for who I am and has no worries about my challenges; even announcing that we are in this journey together and what I have difficulty doing, he'll pick up (and boy...he's been true to that!). Life at this time is more than I ever expected it to be!
The kids here will all be able to do these things as well. Please don't give up on them and don't let them give up on themselves! I can't wait to see/hear about all of their successes! Best of Luck to all of them!
With that, I will close by thanking you all for letting me take such an important role in your child's journey. I am always here if they need the support!
Your Friend and Journey Companion,
Monday, May 4, 2009
Gideon is now six and he has right sided hemiplegia. As the years have passed he's had some remarkable accomplishments. Walking by 13 months, running, jumping off of picnic tables to scare the life out of me and more recently, riding a scooter he got for his birthday. The greatest accomplishment to date, and I emphasize to date because I'm sure there will be many more to come, was what we for some strange reason were holding our breath for. Perhaps it's the quintessential boy and his dad thing that we had envisioned when he was born. Gideon wanted a baseball and bat. I was hesitant because I think I was more worried about me not dealing well with his lack of success than in him being frustrated or incapable. As soon as the weather broke and he could go outside without getting covered in mud he pulled out the ball and bat and headed for the yard. I stood in the window watching him, not wanting to get involved and try and teach him to do something I didn't even know how to do and I let him try figure it out on his own. To my surprise he found a way to grip the handle in his right hand and rest the bat in the crook of his left elbow. He held th ball in his left hand, threw it into the air and quickly grabbed the bat with his left hand and swung away. HE DID IT!! He was able to hit the ball and he's getting good at it.
I've heard so many stories of people with disabilities who accomplish amazing things and I hope for my son that he'll be as successful. I worry every day that he won't but I have that same worry for all of my children. I see over and over again that despite Gideon's stroke and his limitations, that he really has no more limitations than the rest of us.
Tuesday, April 28, 2009
Danny, our twelve year old, is the happiest of our 3 boys. He has his moments, but mostly he has a zest for life that motivates others to be happy too. He lights up a room with his dimpled smile and bright eyes. People are drawn to him and want to be around him. He is truly a joy. When Danny had his stroke at the age of 2, we were crushed and didn't know what the future would hold for him.
Danny is an amazing athlete, playing a variety of sports. Danny plays baseball in our local parks and rec league. He plays infield most of the time. He uses an adaptive Jim Abbot technique. He fields the ball in his left handed glove, then balances the glove on his right (completely paralyzed arm), takes the ball out of the mitt as it drops to the ground and then throws the ball wherever the play is. He has a great baseball sense. He is an average hitter, many times getting key hits at important times in the games. He bats completely one handed.
Watch this site for more blogs about Danny in other sports.
Monday, April 20, 2009
Monday, April 13, 2009
She just got her service dog, Tomato, a few months ago. Tomato helps Briana walk and since then she has been falling down a lot less. Tomato has even helped Briana improve her behavior. Briana is a sweet 7 yr old kid who never gives up!
Sunday, April 5, 2009
Saturday, March 21, 2009
Jax can climb the 37 steps up to the Super Slide at the public pool, slide down the slide, and splash triumphantly in the deep end of the pool.
Jax has hemiparesis, a weakness on one side of his body. Climbing steps or stairs can be a major challenge for someone with hemiparesis. Just imagine needing to balance and shift your weight, without having total awareness and control of one side of your body. This is an amazing accomplishment for Jax!
Saturday, March 14, 2009
Rachelle is currently a sophomore at Palm Beach Atlantic University (PBA) majoring in Physical Education and Exercise Science. During the fall 2008 semester, she taught tennis to underprivileged children at a local community tennis facility. She is currently working as an assistant tennis pro at a nearby country club and will be competing in USTA amateur tennis tournments. Upon graduation, she hopes to work in parks and recreation and become a certified tennis professional.
Rachelle was diagonsed with left hemiplegia at age 4 months with high spasticity. She was diagnosed with seizure disorder at age 4 and took medication until age 16. She had two surgeries in her left heel cord, one at age 3 and a second at age 10. She wore an AFO until age 10. She has a 20% vision fielld cut and had problems with migraines triggered by eye strain.
On-going participation in a variety of sports and physical training are the key factors in overcoming her multiple disabilities.
Saturday, March 7, 2009
Monday, March 2, 2009
Medhat and his family recently visited the Great Wall of China. This is a very steep climb and Medhat climbed all the way, taking those steps three at a time! He did lots of walking during the week long vacation. Medhat is not letting his hemiplegia stop him from enjoying life.
Sunday, February 22, 2009
This might not seem like much, but when Katie was diagnosed at 7 months old as having survived an in utero stroke we were told that she would likely never walk or talk and might never develop past where she was at as a 7 month old.
At not quite 2 years old, she not only walks, but runs and climbs stairs. Katie is a wonderful little girl, and a joy to be around.
~ Lucky mama to Katie, 23 months
Friday, February 20, 2009
All these things have made us cheer and shed a few tears of delight. It really is the little things that make us so proud.
~ Tomas' mum
Thursday, February 19, 2009
I have always known that Nathan understands every word I say (and I do mean "every"). But Nathan has struggled to work his way up to having about 10 words. Along the way, he's learned some American Sign Language signs, made up a ton of his own signs and gestures, and mastered a series of picture communication devices. And now we're waiting for delivery of his new VantageLite, a dynamic communication device with voice output. We do all of this because Nathan desperately wants to communicate his needs and wants, and loves to interact with other people! For me, it was going to be okay if Nathan never spoke, as long as I could get him a computerized device that could help him independently express his wants, dreams, jokes and fears! And I felt like we were on our way to achieving that goal.
Suddenly, within the last eight weeks, Nathan's ten-word vocabulary has exploded to hundreds of words! Maybe thousands! He talks about everything. He repeats words when asked! Yesterday, he focused and had fun at speech therapy! He asks 4- and 5-word questions -- mostly Why?! Strangers comment on how patient I am answering all those Why? questions. But, I just rejoice inside every time I hear one! This has just reminded me once again, that Nathan operates on Nathan's timeline...and God's timeline...not a doctor's, not a therapist's, not a book's, not mine...just on his own, and the rest of us just have to be patient and wait.
After ignoring her right hand for months and months, 18 month old Evelina was able to pick up 5 small toys independently, with her right hand, and move them across her mid-line! What a day!!!
Evelina is a stroke survivor and has paralysis on her right side. Her stroke occurred before she was born. This is called an in utero stroke or a perinatal stroke.