Wednesday, November 25, 2009

A Future in Law Enforcement?

Evie, an in utero stroke survivor with right-side weakness, has been working on her dressing skills with her occupational therapist for several weeks. Just yesterday morning, she pushed her right arm and hand through the sleeve of her long-sleeved shirt without instruction or assistance! Although this may seem like a small achievement, it is evidence of her ever increasing use of her affected side. She is well on her way to doing great things... maybe even in law enforcement! Watch out speeders!

~ Evie's mom

Thursday, November 19, 2009

Our Amazing Survivors

Something very special happened this summer at the Children's Hemiplegia and Stroke Association (CHASA) Family Retreat. Teens and young adults from all over the world came together to share information with the families of younger children who have hemiplegia. The common factor that brings these young people together is that they have a diagnosis of hemiplegia or hemiparesis (weakness or paralysis on one side of the body). Some have hemiplegia due to an early stroke; others due to surgery for epilepsy or other causes.

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

Our Cheeky Little Monkey

I am quite new to the Hemi-Kids discussion list and I would like to share my daughter's story with you. I would just like to say how amazing joining Hemi-Kids has been. It has been a huge support to me and the parents have given me some fantastic advice. It has really made a difference in my life.

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

New Homeowners!

It's a rainy week here in the state of Maryland right now, but when I look outside all I can see is a beautiful scene ahead of me. After two and a half years of working hard to pay down our debts, increase our credit scores, and find the right house for the two of us, my husband Sean and I did just that! We have purchased our first house!

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

A Trike for Matthew

Our favorite new toy, a bike! Our family loves bike rides around the neighborhood and our 2 ½ year old, Matthew, would normally ride in his wagon, until one day my husband put him on his lap and rode him down the street. From that day on, Matthew would not ride in his wagon without throwing a complete fit. Mommy thought it was time for a new toy and headed for the toy store for a bike.

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

It's Football Season - #42

When Danny had a stroke 10 years ago at the age of 2, many things raced through my mind. Many serious things. Then, the sports question came to mind. Would he, could he, will he play sports?

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 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

The Amazing Nate

Nate just turned 2 this summer and is doing awesome! Nate had a stroke at birth and started having seizures at 6 months old (infantile spasms). These seizures are very disruptive to a child's development and he basically stayed 6 months old developmentally for a year. After a year of many unsuccessful treatments, including many seizure medications and the ketogenic diet, he was considered a candidate for a hemispherectomy (surgery to remove part of brain that is causing seizures).

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

Twirling Flower Girl

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

Cameron is a Fish

Cameron is a fish and loves water. He has always wanted to swim, play in the water, put his face in the water and pool. We started swim lessons when he was a tiny baby and he would always want to go, go go. His goal was to swim by himself. The traditional style of swimming was not working with his right hand and leg. (Cameron has hemiparesis.) We told him he had to find his own style of swimming. A way he would not get so tired.

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

From Combat Crawling to First Steps!

As of two months ago, Isaiah was still combat crawling. Then, one day we took him to a local pool and he didn't like how it felt to combat crawl on the grass with no shirt. So, he popped up onto all fours and started crawling back to the pool - he is obsessed with swimming. We were totally astounded...after months of work, he just popped up and did it. And then, he pretty much never went back to the combat crawl.

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

Nothing Gets In His Way

This is Brock. He was diagnosed at 6 months of age as having had a stroke while in the womb. Today he is a very active 3 year old who LOVES to push his toy lawn mower, playing with his older brother and being everything boy. He is a happy boy who enjoys life. Even at a young age, he doesn't let his weaknesses get in his way. He has learned how to climb on the couch, pick up a basketball, walk up stairs without a rail and so much more all on his own.

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

This is My Strong Arm

That is what Brandon said when I asked why he was fishing with his left hand and why he was poking the fire with his left hand. There was a time when Brandon couldn't open his left hand. He has practiced with his left hand so much that he doesn't have a weak arm anymore! He suffered a right posterior cerebral stroke when he was 6 months old; he is 9 now.
~ Brandon's mom

Sunday, August 23, 2009

What a Climber!!!

Hannah is our amazing 3.5 year old daughter. When she entered the (typical) preschool classroom in January, she became determined to climb the large rope "wall" on the preschool playground. She started out having trouble climbing up even a few steps and needed help getting down. But she is a determined little thing and worked at it each time her class went outside.

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 Job!

Over a year ago Joel applied for his first job at our local supermarket Woolworths. He had just turned 15 and was desperate to earn his own money and wanted to work. We were thrilled when they rang a week later to say he had been successful and would start right away. He was to work in the Delicatessen part of the supermarket serving customers, stocking meats, cheeses and salads and cleaning the area.

He went in for his first shift and we thought he would be there learning in the background for awhile. We were surprised when he came home and said he had been serving customers 5 minutes in and was learning as he went. He found his own way of serving and for a while placing hot chickens in bags was difficult but he found a way around it.

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 Learns to Walk!

Taylor is 20 months old and had a stroke when he was a few days old, while waiting for open heart surgery. He was diagnosed when he was 8 months old when he wasn't using his right arm.

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

Cow Says Moo!

I'd like to share a milestone moment with you; my little girl Aine (16 months) has learned to make the noises of three animals. If we ask her "What noise does a cow make?" she replies clearly, "MOOOOOOO!" She also knows cat and dog. This is a magic moment because it proves she is clearly understanding us, something we once feared might not happen.

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

A Walk in the Park

We live on the edge of a state park. From the time Byron was three days old, I would take him for walks in the park. As Byron’s feet dangled from his little baby sling, I would dream ahead to a time when he and I could walk this walk and explore the park together. When Byron was three months old he was diagnosed with left hemiplegia. When I saw the MRI and just how much of the right hemisphere of Byron’s brain was missing, I despaired that he would ever walk at all, let alone in the park with me. At that time there was just so much endless grief.

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!

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

1st Place in Public Speaking

"We don't know if your daughter will have problems with speech and language. The stroke injured the area where speech is usually located." These were just a few of the words that we heard when our daughter, less than a month old, was diagnosed with having experienced a stroke. The doctors suspect that the stroke occurred sometime near birth.
Fast forward 15 years.... We're very excited to share the wonderful news that our daughter placed FIRST in her category at our state's 4-H competition... in public speaking! She gave a speech on how to prevent traumatic brain injury, which she hopes will help others in the future.
~ Kate's mom

Friday, June 5, 2009

Let's Celebrate! Gavin is Sitting Up by Himself!

My son Gavin is 14 months old and has cerebral palsy on his left side. This means that his left hand, arm, and leg are weak, due to a brain injury.

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!!

Gavin's mom

Monday, May 18, 2009

Another Honor for Oscar!

We're very excited to share that one of Oscar's art projects was selected to be in his school's first student art show. The event was held a an actual art gallery last weekend. The piece that was selected was a didgeridoo made out of cardboard tubes and decorated with dot painting. We are so proud of him!

Oscar is 12 years old and has right sided hemiplegia (paralysis of his right side).

Oscar's Mom

Thursday, May 7, 2009

Happy Birthday, Julie!

Just wanted to provide some encouraging words to all of you on this exciting day. Why is it exciting? It's my 30th birthday!!

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

A Dad's Dream

Although Gideon's stroke was a perinatal stroke, his diagnosis wasn't until he was nearly 10 months old, a few weeks before his first Christmas. It was such a difficult time for my husband and I. Not only were the implications of the stroke an unknown but we were grieving the loss of hopes and dreams. Gideon is our third child but our only boy. I can remember Christmas shopping for him and my husband and and I running our hands over footballs and gently fingering baseball gloves with tears in our eyes. We watched other parents picking out bikes and scooters and wondered and worried if Gideon would ever do any of these things. It's like having your feet pulled right out from under you. The fog of an unknown future and feeling so helpless is mind numbing.

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.

Gideon's mom

Tuesday, April 28, 2009

An Amazing Baseball Player

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.

Danny's Mom

Monday, April 20, 2009

The Newest Skier of the Family!

Luka started skiing this winter and he loved it! He has left hemiplegia (paralysis) therefore has a tendency to turn to the left on his skis, and he falls more frequently than most new skiers, BUT he kept smiling and laughing. Luka learned to get on and off the "magic carpet" all by himself and he even tried the chair lift a few times!

With every fall came deep belly laughter. He amazed me with his positive attitude and his perseverance. We tried the smallest skis we could find for him on his third ski day of the season, which really helped his balance.

We are very much looking forward to many days on the slopes next year! Luka also tried snow shoeing this year and managed to walk about 300 feet. We were impressed!

Luka's mom

Monday, April 13, 2009

The Kid Who Never Gives Up

Briana is doing great in school. She has joined her school's A & B honor roll and will receive an award soon for good grades and conduct. Briana has great physical challenges, due to an early stroke, but is very bright and this helps her in many ways.

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


Although Christian is only ten months old, he has continued to amaze me, his doctors, and his therapists with his accomplishments. Christian had an in utero stroke and as a result, has been diagnosed with mild cerebral palsy (CP), affecting his right side.

Christian is now trying to sit up. When he was 7 1/2 months old, he raised his right (affected) arm and sucked his thumb for the first time. I can't express how happy I was; of how it felt to know that this is a sign of hope that everything will be okay. Since then, he has noticed his affected hand and will just stare at it like, "Hey! Where did you come from?"

Christian just learned to say DaDa and BaBA, and he has learned to play patty-cake. He even tries to use his right hand for part of the game. I can't express how happy and proud I am of him! ~ Christian's mom

Saturday, March 21, 2009

Climbing Those Steps!

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

Gold, Silver, and Bronze Winner

Rachelle competed on the PBA Tennis Team in 2007 and has been a member of the US Paralympic team, twice in Track & Field and once in Table Tennis. She competed in track at IPC World Athletics championship Lille France in 2002 and in Assen Netherlands in 2006, and won a Bronze medal in the 100m sprint at the Parapan American Games in Rio Brazil in 2007. She has won numerous gold, silver, and bronze at US Paraplymic National competitions in track and field and also competed on her high school track and field team.

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

An Independent Three-Year-Old

When Collin was 12 months old, I noticed that he wasn't pulling himself up or attempting to take steps and that he appeared to be left hand dominant. His pediatrician referred us to a neurologist and Collin was diagnosed with having had a stroke in utero (while I was pregnant with him). Initially, we were devastated. We never imagined that he could have had a stroke.

Collin just turned 3 and he is just like every other 3 year old! He is very independent and wants to do everything for himself. He walked at 17 months and is now climbing and crawling through everything.

Collin makes friends everywhere he goes and he has a very happy personality most of the time (expect when he hears the word "no"!). He is a very loving, charming, little boy, with his own special personality.

The perinatal stroke diagnosis was a hard diagnosis to come to terms with, but Collin continues to progress daily and we know that he will be as successful, if not more so, than his peers!

Collin's Mom

Monday, March 2, 2009

A Great Climb

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

Never Say Never

Katie is having a great week, she climbed the stairs alone today, all the way to the top...17 steps, and she signed "Thank-you" with her right hand.

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

Twinkle Twinkle Little Star

My son, Tomas, suffered a newborn stroke and his prognosis was not that great. However, he has made many achievments in his three years which have astounded both us and his doctors.
The ones that made us smile the most included his own version of crawling - shuffling around on his bottom at 11 months; his very first steps at 16 1/2 months; and pushing a piece of puzzle with his left hand when he was 2 1/2 years old. He also started singing Twinkle Twinkle Little Star, including two-handed actions.

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

Waiting for a Miracle

Nathan had a stroke at birth, developed intractable seizures and had a right functional hemispherectomy (brain surgery) at 14 months old. Soon, my baby will be 4 years old!

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.

Thank you for letting me share.
Nathan's Mom

It's the little things

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.