Our Story

100_4048.jpg
This is a story of our experience with a child with an in-utero stroke.  The purpose is to share the story and how it affects our lives and hopefully create some hope and peace for some of the readers who may be in similar situations.

Our son, Brady, was born in May 2006, and it was the best day of our lives.  He is our first child and we were taking in everyday all the precious new little things that life was now giving us with Brady.  For example, his beautiful eyes staring at us with his long eyelashes and his great big smile so full of life.

It wasn’t until 4 months after he was born we started seeing some things in Brady that concerned us.  He began only looking to the left side of his body.  The doctor diagnosed him with a case of torticollis which is simply a twisting of the muscles in the neck typically to one side.  A diagnosis we could live with as it is somewhat common these days that people work through with their kids at a young age.  But at roughly the same time we noticed the neck issue, we also noticed that he was only using his left arm.  In our minds we related the torticollis to his arm since his neck was only allowing him to look to the left at the time but more needed to be found out.

The next step the doctor said was to get an MRI.  Not knowing what could possibly be in store for us, we didn’t hesitate bringing him to his MRI despite knowing how hard it was going to be for us to watch our angel be put to sleep and put in the big machine.  Understandably that part was tough on Tina as it would be for any mother.

A few days later we receive a call from the doctor with the results.  He apparently had an in-utero stroke which means while he was still in his mother’s belly he had a stroke at some point.  The doctor explained it as a “massive stroke” on the outside of the right side of his brain.   Apparently, undetectable by ultra sounds or at the time of the birth.   Tina took this devastating phone call.  Something I wouldn’t want anyone to ever have to do.  Millions of questions are now going through our minds.  Thus, 4 months into his life we learned of this and the journey begins.

Continue to follow our journey especially if you are someone dealing with these same issues.  And feel free to ask questions and comment on anything.

 

 

Posted in Brady Travel | Tagged , | Leave a comment

Meet NubAbility Athletics Foundation

Hello folks!

I am the “Team Mom” for NubAbility Athletics Foundation. My son Sam, the head coach & founder, age 22, has followed Jim his whole life. I have so much empathy for what all of you and yours are facing. As a mom of a limb-different kid, and Team mama to over 30 accomplished limb-different athletes college age and beyond, I guess I feel somewhat qualified to offer my 2 cents. First, let me say we have experienced many incidents throughout the years of staring, rudeness and bullying. However, only a few of those now stand out. Sam has written about them in his testimony that will be shared on the NubAbility Facebook page for Testimony Tuesday today. However, being a parent that was never afraid of conflict if I felt my actions, words and choices were made for all the right reasons with wisdom and patience, I never engaged another person in those incidences. Instead I chose to do this….I hope these words help. My kid is a rock star changing the lives of not only limb-different kids, but others that need to see they are perfectly purposefully made too.

I chose to address my child’s reaction to those incidents instead of the curious & inquisitive and down right rude starers.

From infancy we simply said to Sam “You don’t need an extra hand do you kid?” “God said you didn’t need an extra hand, that’s why.” “I need to but you don’t.”

“Of course they are staring at you darlin! They are trying to figure out how you are so darn amazing! In a few years, they will be staring at you from the stands as fans.” (And…they have.)

We are very matter of fact in our home. Especially about things that just “are”. Sam’s nub is one of those things. It just “is”. Once he learned it was a platform and a true gift entrusted to him to serve others, he has steamrolled ahead in life, focused on getting your kids “there” sooner than he arrived.

You can’t control people, but you can control you and your reaction and words to them in front of your kids. What you say to others about your kids difference is what they will perceive themselves to be. If you yell at and cuss out someone for looking, staring, even commenting, you are sending a negative message to your kid that they have something about themselves that is pitiful. It’s not pitiful. It’s beautiful. It’s unique. It’s a tool. It’s them.

Do you ever advocate? Yes. Do you do it with every incident and in front of your kid? No.

Quit celebrating the little everyday normal things like opening a water bottle…They see other kids do it with ease. It’s a normal daily action. To “make do” over things like this, you are sending the message to your kid that what is normal for others is not normal for you. It IS NORMAL! Just different.

My son longed for the day a media article was written about his appearance on the mound recognizing him for his pitching, not because he did it one-handed. That finally happened last year. During the Sectionals for his college team. He got a win and dominated. No mention of his nub. He was on cloud nine. Not because he is ashamed of his difference, just the opposite, he LOVES being made this way. His nub is his normal. He has never known anything different. He longed for respect of his ability. He got it. That’s why NubAbility Athletics sets kids up to compete in mainstreamed sports. Sam and his team of coaches want the NubAbility kids to see themselves as athletes. Period.

Have I cried? Yes. Have I wanted so badly to scratch someones eyeballs out? Yes. It is difficult to not react. Of course if my kid was in harms way….lookout! But what I have found is this: It is more beneficial to spend my time and energy on my kids self-image and self-esteem. I would have driven Sam across the country to have gotten him to a Sam… Kids naturally roll their eyes at us, but they LISTEN to MENTORS. Find your kid one. Buying in to emotionalisms on threads of social networking will never help your kids feel perfectly purposed, but a mentor can.

At NubAbility our young coaches take seriously the mission of removing the targets off of our limb-different kids backs. Here is a good place for you and your child to start…In 2:45 minutes, your kids life could begin to change…yours too!

In the meantime, if any of you would like to learn more about how our coaches mentor kids and what events we offer to immerse your kid in an environment of self-acceptance and the NubAbility attitude, email me:
Jana NubAbility@gmail.com

Posted in Daily Living | Leave a comment

Brady Is Pitching!

CubsBrady1

After Spring baseball ended, I decided I wanted Brady to play Fall baseball if for no reason other than I wanted him to start trying to pitch before next Spring season came around. I spent hours trying to figure out the perfect method for him to accomplish this. After a few failed attempts, I worked out a way for him to be able to pitch with his glove using industrial strength velcro that I picked up from Wall-Mart.  The velcro was sewn on at a shoe repair store that required me taking several trips to get this thing correct.

In the pictures below, you can see I put velcro in the pocket of his pitching glove and on the back of a batting glove that fits his right hand. We had to cut the fingers and thumb off the batting glove to make it easy to get his hand in the glove as it’s really hard for him. This way we can do it quickly before he pitches and not struggle.
1FullSizeRender

 

 

11FullSizeRender

 

 

 

After practicing a lot, he has figured out his routine. “Transferring” everything is a little different when he’s not pitching. The tricky part is after he catches the ball and transfers the ball out of his glove to his throwing hand, he has to take the ball AND the glove both with his left hand and place it over his right hand. At this point, the velco takes over and he can get ready to pitch.

See the video below of him pitching. The glove actually falls off his right hand in this example, but typically it doesn’t. It has taken a lot of patience on my part to not get too discouraged at first. It does take a little longer between pitches for him to get ready. I’m not a patient person and have learned to keep my mouth shut and let him do it. He is doing great. After a couple of initial distractions from everything he has going on with his routine, he has settled in and is throwing strikes and striking out batters. It’s a beautiful thing to see as his face lights up after each strikeout.

PitchingIMG_3329  <– CLICK TO SEE PITCHING VIDEO

 

Posted in Inspiration | Tagged | Leave a comment

Random Act of Kindness

BradyCubs

This past Saturday, I, as a dad, had one heck of a ride emotionally watching my son play sports from 8AM to 12:45PM. It began with a two-hour basketball tryout from 8 to 10am. Brady absolutely loves basketball and is just happy to be out there playing in any capacity. This tryout was fairly serious and the coach running it was good and serious about basketball. His philosophy is “if you can’t dribble, you can’t play the game.” My son is an unreal shooter with one hand but isn’t a strong dribbler due to the stroke and his right arm not functioning. And I’m not being biased on the shooting critique. I have coached basketball for 13 years now, and he definitely has the shooting skill down at a level that is indescribable for his age. He can dribble with his left hand just fine, but the right hand just doesn’t allow him to do the things the coaches are asking them to do. It’s beautiful to see him try to do them with his right hand and not just do everything lefty, but naturally, the grades for the tryout probably aren’t strong. The unfortunate thing, for an hour and forty-five minutes of the 2 hours, all they did was dribbling. Then they went to games. Not even one shooting drill was done by anyone. In an uncontrollable way, watching the day was tearing me up inside as my heart was breaking. The feeling arose again in my life that this is all so unfair and, quite frankly, made me mad. Bottom line is he had fun during the 2 hours and I just have to deal with it but just wish they could have seen what he does best in basketball.

So we follow that up by racing to his fall baseball game with the Cubs. Somehow we made it there on time and were able to play on a really cool baseball field that actually had a fence for little kids, a dugout, and grass infield. I’m used to watching Brady bat and don’t get too emotional during his at-bats. This day he went 1-2 with a single and a strikeout. But he also was able to pitch an inning this game. Pitching in games is new this season. This will be his fifth time pitching this season. I know now that I need to “stop talking” to Brady while he is pitching but that definitely doesn’t always happen. The anxiety in me when he is on the hill is also uncontrollable. I pace and give out some advice and try to take a step back and let him do his thing. The anxiety in me increases between each pitch as it does take some time for him to catch and transfer the ball from glove to his pitching hand and then adjust the glove to balance on his right hand all the while trying to get ready to make a successful pitch with decent mechanics. My patience runs thin quickly especially when many of the balls through back from the catcher go past him and it takes even longer. After it was all said and done, the little guy struck out 3 batters in the inning. It wasn’t a perfect inning as he walked 2, but it was a great inning nonetheless. The first time he struck out all three batters in an inning. He threw strikes. Mission accomplished. I could relax again. Strikes were few and far between among all the pitchers that pitched in the game, but he did it. And did it well. The look of the most proud boy in the world after each strikeout. And again when he came off the field and into the dugout. I have to make sure we take those pictures zoomed in on his face after his next strikeout cause those moments are precious.

Then at the end of the game a rare moment happened. I was standing outside of the dugout when I heard someone looking for my last name. I thought they were looking for me as maybe someone recognized me during the game that I knew but hadn’t seen in awhile. In fact, they were looking for Brady. It was the other team’s coach. He must have taken notice of his disability and the success he had and the struggles he was battling. Brady must have touched his heart in some way. Then with a simple random act of kindness, he came to our dugout and found Brady and gave him the game ball for getting a hit and striking out 3 batters all with the function of only one arm. He was proud of him and so was I. As I don’t want Brady to be recognized for being different, I was still very grateful to the coach for this act. Brady doesn’t know any different. He was just proud to get a game ball and from the other coach was even cooler. It wrapped up a very hard day for me in a very special way.

Posted in Inspiration | Tagged | Leave a comment

Peter Gray’s Story

When America went to fight in World War II, many baseball players left the field to take their place in the Armed Services. The absences of players at the top level of the game opened the door for some who might not have otherwise had the opportunity.

One of those is a exceptional athlete who was described as being a fast runner, a proficient fielder and an above average hitter. That description could have been used for many players who have stepped on to the field in Major League Baseball.

Pete Gray, however, was different from the rest. He performed his feats with just one arm.

Gray lost his arm in truck accident during his youth. He didn’t let the injury stop him from playing his favorite game, learning to hit and throw with his left arm.

He found his way onto semi-pro teams in his local area and later joined the Brooklyn Bushwicks. In 1942, he played for Three Rivers of the Canadian-American League and hit .381 in 42 games.

He moved to Memphis of the Southern Association in 1943 and played centerfield, hitting .289 over the course of the season. In 1944, he put together a season that would get him noticed by Major League scouts. He hit .333 with 5 home runs and stole 68 bases. Baseball writers in the minor league circuit named Gray Player of the Year and the Browns paid $20,000 to Memphis for his contract.

His impact wasn’t as great at the Major League level with a higher level of athlete. However, he had moments where he stood out among his peers. He made his debut on April 18, 1945, and collected a hit in 4 at-bats.

On May 20, 1945, he had an incredible performance as the Browns beat the Yankees 10-1 and 5-2 in a doubleheader. Gray had 2 RBI on 3 hits in the first game and scored the winning run in the second game.

Gray played in 77 games and had 234 at-bats. He had 51 hits, 13 RBI and 5 stolen bases. It is reported that outfielders played him so shallow that shots that would have been bloop hits for most players were fly outs for Gray.

He was sent down after the 1945 season as more players who had been in military service returned to baseball. Gray was out of baseball for the 1947 season, but returned to play for Elmira in 1948 where he hit .290 in 82 games. He played in the minors and played on barnstorming teams until the 1950s and then retired to Nanicoke, Pennsylvania.

In the field

As he played, Gray wore a glove without the padding. When the ball was hit to him, he made the catch with the glove directly in front of him — normally about shoulder height. As the ball hit the glove, he would roll the glove and ball across his chest from left to right.

Somehow, in this process, he learned to separate the ball from the glove. In the motion, this glove would come to rest under the stump of his right arm and the ball would end up in his left hand.

In handling ground balls, he would let the ball bounce off his glove about knee height in front of him. He would flip off the glove and grab the ball while it was still in the air.

Some said this process allowed Gray to field balls faster than other outfielders he was playing with who didn’t face the same handicap. When he was backing up another outfielder, he would drop the glove and be ready to take the ball in his hand.

At the plate

Gray, despite having just one arm, used a full weight, regulation bat. He was described as standing back behind the plate and cocking the bat as any other hitter would. His hand was six inches or so up on the handle and he would take a full cut. He was described as being a pure pull hitter.

Sources: Cleveland Press, Baseball Digest, 20th Century Baseball Chronicle

Posted in Inspiration | Tagged , | Leave a comment

Armless Man Plays Pingpong….and does it well!!

This armless Egyptian is better at table tennis than you.

Well, you have to see it to believe it.  Stories like these inspire me to motivate my son to keep trying to do the things you like.  Whether it’s football, basketball, baseball, or table tennis like this guy, you have to keep trying and find a way.

Posted in Inspiration, Uncategorized | Tagged , , | Leave a comment

CBR – Cord Blood Registry

CBR® has launched a new study at the University of Texas Health Science Center (UTHealth) for children with cerebral palsy (CP). In the US, 1 in 303 children is affected by CP.

LEARN MORE ABOUT THE STUDY

Families eligible to participate in this study must have a child between the ages of 2 and 10 years who have been diagnosed with CP. A total of thirty children will be enrolled in the trial.

IS YOUR CHILD ELIGIBLE?

Leading the study is Dr. Charles S. Cox, The Children’s Fund Distinguished Professor of Pediatric Surgery at UTHealth. Collaborators for the study include CBR, Let’s Cure CP, TIRR Foundation and Children’s Memorial Hermann Hospital. This is the seventh clinical trial that CBR has launched.

Posted in Studies | Tagged , , | Leave a comment

This Is Kyle, And He’s About To Restore Your Faith In Humanity

Kyle
One day, when I was a freshman in high school, I saw a kid from my class walking home from school. His name was Kyle. It looked like he was carrying all of his books. I thought to myself, “Why would anyone bring home all his books on Friday? He must really be a nerd.”

I had quite a weekend planned (parties and a football game with my friends tomorrow afternoon), so I shrugged my shoulders and went on. As I was walking, I saw a bunch of kids running toward him. They ran at him, knocking all his books out of his arms and tripping him so he landed in the dirt. His glasses went flying, and I saw them land in the grass about ten feet from him. He looked up, and I saw this terrible sadness in his eyes.

My heart went out to him. So I jogged over to him, and as he crawled around looking for his glasses, I saw a tear in his eye. As I handed him his glasses, I said, “those guys are jerks. They really should get lives.” He looked at me and said, “Hey thanks!” There was a big smile on his face. It was one of those smiles that showed real gratitude.

I helped him pick up his books and asked him where he lived. As it turned out, he lived near me, so I asked him why I had never seen him before. He said he had gone to private school before now. I would have never hung out with a private school kid before, but we talked all the way home, and I carried his books.

He turned out to be a pretty cool kid. I asked him if he wanted to play football on Saturday with me and my friends. He said yes.

We hung out all weekend, and the more I got to know Kyle, the more I liked him. And my friends thought the same of him. Monday morning came, and there was Kyle with the huge stack of books again. I stopped him and said, “Boy, you are gonna really build some serious muscles with this pile of books every day!” He just laughed and handed me half the books.

Over the next four years, Kyle and I became best friends. When we were seniors, we began to think about college. Kyle decided on Georgetown, and I was going to Duke. I knew that we would always be friends, that the miles would never be a problem. He was going to be a doctor, and I was going for business on a football scholarship.

Kyle was valedictorian of our class. I teased him all the time about being a nerd. He had to prepare a speech for graduation. I was so glad it wasn’t me having to get up there and speak.

On graduation day, I saw Kyle. He looked great. He was one of those guys that really found himself during high school. He filled out and actually looked good in glasses. He had more dates than me and all the girls loved him! Boy, sometimes I was jealous. Today was one of those days. I could see that he was nervous about his speech, so I smacked him on the back and said, “Hey, big guy, you’ll be great!” He looked at me with one of those looks (the really grateful one) and smile. “Thanks,” he said.

As he started his speech, he cleared his throat, and began. “Graduation is a time to thank those who helped you make it through those tough years. Your parents, you teachers, your siblings, maybe a coach—but most your friends. I am here to tell all of you that being a friend to someone is the best gift you can give them. I am going to tell you a story.” I just looked at my friend in disbelief as he told the story of the first day we met He had planned to kill himself over the weekend. He talked of how he had cleaned out his locker so his Mom wouldn’t have to do it later and was carrying his stuff home. He looked hard at me and gave me a little smile. “Thankfully, I was saved. My friend saved me from doing the unspeakable.”

I heard the gasp go through the crowd as this handsome, popular boy told us all about his weakest moment. I saw his Mom and Dad looking at me and smiling that same grateful smile. Not until that moment did I realize its depth.

Never underestimate the power of your actions. With one small gesture, you can change a person’s life.

Posted in Inspiration | Leave a comment

Don’t Quit

When things go wrong as they sometimes will;

When the road you’re trudging seems all uphill;

When the funds are low, and the debts are high;

And you want to smile, but have to sigh;

When care is pressing you down a bit –

Rest if you must, but don’t you quit.

Success is failure turned inside out;

The silver tint of the clouds of doubt;

And you can never tell how close you are;

It may be near when it seems afar.

So, stick to the fight when you’re hardest hit -

It’s when things go wrong that you mustn’t quit.

- Author Unknown -

Posted in Uncategorized | Leave a comment

Identify a Stroke Soon and Here’s How

STROKE: Remember the 1st Three Letters…..
S. T. R. 
STROKE IDENTIFICATION:

During a BBQ, a woman stumbled and took a little fall – she assured everyone that she was fine (they offered to call paramedics) …she saishe had just tripped over a brick because of her new shoes.

They got her cleaned up and got her a new plate of food. While she appeared a bit shaken up, Jane went about enjoying herself the rest of the evening.

Jane’s husband called later telling everyone that his wife had been taken to the hospital – (at 6:00 PM Jane passed away.) She had suffered a stroke at the BBQ. Had they known how to identify the signs of a stroke, perhaps Jane would be with us today. Some don’t die. They end up in a helpless, hopeless condition instead.

It only takes a minute to read this.

A neurologist says that if he can get to a stroke victim within 3 hours he can totally reverse the effects of a stroke…totally. He said the trick was getting a stroke recognized, diagnosed, and then getting the patient medically cared for within 3 hours, which is tough.

RECOGNIZING A STROKE

Thank God for the sense to remember the ‘3’ steps, STR. Read and
Learn!

Sometimes symptoms of a stroke are difficult to identify. Unfortunately, the lack of awareness spells disaster. The stroke victim may suffer severe brain damage when people nearby fail to recognize the symptoms of a stroke.

Now doctors say a bystander can recognize a stroke by asking three simple questions:
S *
Ask the individual to SMILE.

T *Ask the person to TALK and SPEAK A
SIMPLE SENTENCE (Coherently)
(i.e. Chicken Soup)

R *Ask him or her to RAISE BOTH ARMS.

If he or she has trouble with ANY ONE of these tasks, call emergency numberimmediately and describe the symptoms to the dispatcher.

New Sign of a Stroke ——–
Stick out Your Tongue!

NOTE: Another ‘sign’ of a stroke is this: Ask the person to ‘stick’ out his tongue. If the tongue is
‘crooked’, if it goes to one side or the otherthat is also an indication of a stroke.

Posted in General Information | Tagged , | Leave a comment

The Dash

THE DASH

I read of a man who stood to speak
at the funeral of a friend.
He referred to the dates on her tombstone
from the beginning…to the end.

 He noted that first came the date of her birth
And spoke of the following date with tears,
but he said what mattered most of all
was the dash between those years.

 For that dash represents all the time
that she spent alive on earth…
and now only those who loved her
know what that little line is worth.

 For it matters not, how much we own;
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

 So think about this long and hard…
are there things you’d like to change?
For you never know how much time is left.
(You could be at “dash midrange.”)

 If we could just slow down enough
to consider what’s true and real,
and always try to understand
the way other people feel.

 And be less quick to anger,
and show appreciation more
and love the people in our lives
like we’ve never loved before.

 If we treat each other with respect,
and more often wear a smile…
remembering that this special dash
might only last a little while.

 So, when your eulogy is being read
with your life’s actions to rehash…
would you be proud of the things they
say about how you spend your dash?

 Author Linda Ellis

Posted in Inspiration | Tagged | Leave a comment

Save Stem Cells on Newborn Babies

I still don’t always understand why people pass on the decision to save their newborn’s stem cells.  It could be the price or lack or knowledge about it.

But when someone has been given the information and seen firsthand certain outcomes of not saving it, why wouldn’t they make the decision to save their child’s newborn stem cells with a place like CBR.

Five ground breaking clinical trials use CBR-processed cord blood stem cells exclusively, which means saving with CBR gives your family access to cutting-edge research for potential treatments with cord blood stem cells.

In case you will be having a baby soon and are interested in CBR, here is a little bit about their referral program.  When you refer a friend or relative, you will BOTH receive a free year of storage – a value of up to $260.

Take advantage of my referral link below if you’d like.  Just copy and paste the link into your browser or click the link:

http://www.cordblood.com/landing/referral?contactid=1-SN9HIW

Posted in Stem Cells | Tagged , | Leave a comment

Miley Cyrus Under Fire From The Stroke Association For Tongue Joke

cyrusmiley

Miley Cyrus hosted “Saturday Night Live” this week and made a new enemy with her controversial words. The 20-year-old singer opened the show in a sketch that showed her getting ready for her now-infamous performance at the Video Music Awards before getting a surprise visit from her former self, played by Vanessa Bayer.

Bayer’s Cyrus of “Hannah Montana” days questioned present-day Cyrus about her boundary-pushing actions and warned her against going through with the performance of “We Can’t Stop” with Robin Thicke. At one point during the conversation, Bayer asks Cyrus why she keeps sticking her tongue out, to which Cyrus responds, “I’m having tiny strokes, yo!” Take a look at a clip of the sketch above.

Cyrus’ joke about “tiny strokes” did not sit well with The Stroke Association, an information and support group which took issue with the pop star making light of the medical issue.

“Having a mini-stroke is no laughing matter,” Patrick Olszowski, Head of Campaigns and Policy at the Stroke Association, said in a statement. “Around 46,000 people in the UK have a mini-stroke each year, with one in ten leading to a major stroke.”

“Sticking out your tongue is not a sign of having a stroke,” he continued. “Having a stroke is a serious medical emergency. With the right care and support, as well as compassion from those around them, people can make fantastic recoveries.”

 

Posted in In The News | Tagged | Leave a comment

Stroke Struck Tot, 4

Quick action put ‘patient of the year’ on the road to recovery

By Colleen Mastony – Chicago Tribune

What does it take to save the life of a 4-year-old boy?

Quick thinking parents, for sure, who pack the child in the car at the first sign of trouble.  A triage nurse at the front door of the hospital who looks at Alex Muller – his face drooping on the left side – and first says the word “stroke.”  Then there is the team of specialists who rush to the emergency room, making fast and critical decisions.

And, for weeks afterward, there are the nurses and rehab specialists tasked with getting the boy up and walking – and who still have bite marks on their arms to prove it.

But it is perhaps the boy’s spirit that is the most powerful force of all.

Now, nearly five months after he suffered a rare and potentially fatal stroke, Alex Muller – a 36-pound, towheaded, Thomas-the-train-loving preschooler – still battles to regain his strength.  His left side remains stiff, and he hasn’t regained movement in his left arm and hand, which, after the stroke, he affectionately named Lefty.

But he is running and jumping again.  And, on a recent day, he walked proudly into his parents’ kitchen, holding an iPad under his stiff left arm, and declared proudly: “Look what Lefty can do!”

Last week, Advocate Children’s Hospital honored the tiny stroke victim as its “pediatric rehabilitation patient of the year.”  Doctors had hoped the child might leave the hospital with a walker.  His parents had planned to revamp their home for a wheelchair.  But instead, the boy walked out the doors of the Advocate Children’s on June 19 on his own.

“Alex did therapy every day with a smile on his face no matter how hard the activities were,” said Colleen Powell, 28, his physical therapist.

Except sometimes he wasn’t smiling.  When he couldn’t do something, the boy would lash out, pinching and biting the people trying to help.

But Powell and other caregivers refused to back off.  Instead, they gave him a superhero suit, complete with a blue cape, so while he slowly learned to walk again, he could be Super Alex.  With an unsteady gait, he strutted through the hospital hallways, excited to show everyone his suit.  He would bounce on a therapy ball and pretend that he was flying.  Often, he would stretch out his arms and pretend to soar.

“Alex is a happy boy.  He didn’t realize how much he went through,” said Powell. “He just wanted to play, and (as his condition improved) he was excited to show off the new things he could do.  I would come in on Monday morning and he and his dad would have something new to show me, standing by himself or taking some steps.”

The last few months have been a tough road for the Muller family.  Not too long ago, they – like many people – didn’t realize that a child could have a stroke.  Experts say that, in general, strokes in children are rare, occurring in about 11 out of 100,000 children ages 1 to 18.  More than 100 risk factors have been identified, including heart disease, sickle cell disease and blood disorders.  But, in one-tenth of cases of strokes in children, no cause is ever found.

These facts are now well known to the Muller family.  But on May 7, when they were flying back from a trip to Disney World, they were blissfully unaware of the path that lay ahead.

On that day, as the plane descended toward Chicago, Alex was sucking on a piece of candy.  His parents noticed that he seemed to be drooling from the left side of his mouth.  they thought it was strange, but didn’t dwell on the moment.

Alex walked off the plane that day and seemed fine.  Then, during the care ride home, he threw up.  And when he walked into their Palos Heights home, he collapsed inside the doorway.  He told his mother that he couldn’t get up.  The left side of his face drooped.  His left arm hung limply at his side.

Lisa Muller swept her child into her arms and put him in the car.  She know something was terribly wrong.  She bypassed a local hospital and sped toward advocate Children’s Hospital in Oak Lawn.  There, the triage nurse at the front desk looked at Alex and called immediately to the emergency room.

“I need a bed right now,” she said, he voice urgent.  “I don’t know what’s wrong, but he looks like he’s having a stroke.”

Muller could barely believe what she was hearing.  A 4-year-old having a stroke?

Within a moment, Alex was on a gurney and surrounded by a team of a half-dozen people.  Advocate Children’s is a stroke center, and the people who were urgently working on the child were part of the hospital’s stroke team.

Their quick response – as well as Lisa Muller’s decision to bring Alex straight to the hospital – would be critical in the child’s survival and recovery.

Because strokes are not typically associated with children, their symptoms are sometimes missed by parents and even doctors, said Dr. Jose Biller, a neurologist at Loyola University Medical Center, who specializes in strokes and who consulted on Alex’s case.  The signs of a stroke – such as drooling, slurred speech, clumsiness – are sometimes chalked up to behavior typical of children.  And because many other conditions mimic the symptoms of stroke, diagnosis can be challenging, Biller said.

But “time is brain,” neurologists like to say.  And a quick diagnosis is vitally important to halting the progression of a stroke.  Studies show that doctors, in recent years, are getting better at diagnosis, but more awareness is needed, Biller said.  “People need to dispel the myth that strokes only occur in older people,” he said.

At Advocate Children’s, Alex’s parents sat vigil.  His mother took three weeks off from work, but eventually had to return to her job as a supervisor at a paint company to maintain the family’s health insurance.  His father, Bob, 39, quit his job as a project manager for a recycling company so he could stay by Alex’s side during the day.

The couple have two other children, ages 7 and 11, who also needed care.  And so, in the evenings, Bob Muller went home to give them dinner, help with their homework and put them to bed.  Meanwhile, Lisa Muller spent every night at the hospital, where she slept – often cuddled with Alex in his hospital bed.

Sometimes Alex would ask:  When am I going to be normal again?

Doctors never pinpointed the cause of the stroke that had left him paralyzed on his left side, unable to even lift his head.  But as time went on, they felt confident that the danger had passed and the chance of another stroke was extremely low.

Slowly Alex began to improve.

He relearned how to swallow.  Then he gained the strength to sit up.  Three weeks after the stroke, he stood by himself for the first time.  Two weeks after that, he moved his left arm.

With each improvement, the little boy radiated joy.  “I’m learning to walk again!”  he’d call to visitors.  “Want to see?!”

On the rehab unit, Bridget Johnson, an occupational therapist, told Alex that they were going on an adventure.  She held up a hula hoop, told him it was a steering wheel, and asked him where he wanted to go.  “He had a wonderful imagination,” said Johnson, 41.  She urged Alex to steer with his left hand, which was stiff and immobile.  “We used hula hoop to drive to the beach or zoo, wherever we were going that day.”

When a local organization brought in therapy bikes for an event at the local hospital, Alex spent hours zipping around a track set up in the parking lot, his parents chasing behind.  The bikes had Velcro straps that held his left hand and foot in place.  And Alex soon became a familiar sight in the hospital, his smile wide as he pedaled up and down the corridors.

By the time he left the hospital in June, he could walk.  Not far.  Not long.  But he was able to walk.

To his parents, it felt like a miracle.

“It was more exciting seeing him take those steps (out of the hospital) than his first steps as a baby,” Lisa Muller said.

In August, the rehab staff was asked for nominations for the “rehab patient of the year.”  The staff of 15 had treated hundreds of patients, but everyone immediately thought of Alex.  “It was his spirit,”  said Johnson.  The vote, she said, “was unanimous.

The road ahead for the Muller family is still a long one.  No one knows how much Alex will recover or if he’ll ever have full use of his left arm and leg again.  Yet his doctors are optimistic that he will continue to improve.  After a stroke, children tend to bounce back better than adults, experts say.

Last week, a room of 200 nurses, doctors and patients gathered in an auditorium at Advocates’ medical complex to applaud the little boy and his family, who had come so far over a few short months.  Alex walked onto the stage, with a small brace on his left leg, and smiled shyly at the attention.

Afterward, he stood in a hallway and held the hand of his former therapist, Bridget Johnson, who had once used a hula hoop to take him on imaginary adventures.

When she first met the child, his left side was completely paralyzed.  Now, she said, “he’s your typical, rambunctious little boy that we have to chase after.”

And with that, Alex smiled.  He pulled his hand away and made a fast break down the hallway, giggling and yelling: “I’m going to run!!”  His former therapist had to rush to catch up.

Posted in General Information | Leave a comment

Armeo Adventure

So, Brady has had 4 sessions at the Rehab Institute of Chicago so far with the Armeo Therapy.  One of the hardest things for him to do is to take his right hand and turn the wrist to the right so that his right thumb turns up as in the direction of a thumbs up sign. After just a few shorts sessions, he is able to do this a little better already.

ArmeoIMG_2775

We are obviously real pleased so far with the progress.  Here is a short clip of him actually using the device.  CLICK HERE TO SEE VIDEO

 

Posted in Uncategorized | Leave a comment

New Technology Called Armeo Therapy

hb_AP_Stroke_ZAR_Rolf-Bolliger_1105_0574

Recently, we have been introduced to some new technology manufactured by Hocoma.  We will be starting a new 6-week program called Armeo Therapy at RIC (Rehab Institute of Chicago) for arm therapy after a stroke.  This new cutting edge technology seems to be upgraded from other gaming therapy technology we have experienced.  It isn’t as limited in range as far as only being able to make one motion like left to right and vice versa.  The device is more realistic in it’s movements all over in all directions.  We start this week, and I will be provide a couple updates on it as we go through this next adventure.

Click here to see a video of what it looks like.

You can click here to read about this program and what it entails at RIC.

Posted in occupational therapy | Tagged , , , , , , , , | 1 Comment

Cord Blood Banking

Cord Blood Registry is Advancing Regenerative Medicine Research at Exciting Pace

Ground-Breaking Clinical Trials Are Providing Families New Potential Treatment Options

SAN BRUNO, CA. – March 19, 2013 – Cord Blood Registry® (CBR®), the world’s largest newborn stem cell bank, is fueling innovation in newborn stem cell research. As CBR prepares to release its 250th cord blood unit for medical use this month, the newborn stem cell bank announces that 71% of all its units released for use have been for emerging applications in regenerative medicine, such as brain injury, autism and type 1 diabetes. The other 29% have been for traditional transplant use, such as leukemia and sickle cell disease. This rapid increase in the use of family banked units for regenerative medicine applications is a complete reversal from the figures just six years ago, where 25% of the units released were for regenerative medicine applications and 75% for traditional transplant use. More than 50% of all cord blood units released for use in emerging regenerative therapies by family banks have been processed and stored at CBR. CBR is the only family newborn stem cell bank to have established FDA-regulated trials and is connecting client families to more potential treatments. As the industry leader in this initiative, Cord Blood Registry continues to focus on advancing the clinical applications of newborn stem cells.

Click here to view
Over the past 20 years, cord blood stem cells have been used to treat more than 80 life-threatening diseases and disorders including certain cancers, blood disorders, immune diseases, and metabolic disorders. Today, promising treatments are paving the way for further research. Current FDA-regulated clinical trials are exploring the use of a child’s own cord blood stem cells in regenerative medicine for conditions that have no cure today. Most of these groundbreaking trials only use cord blood stem cells processed and stored by Cord Blood Registry for consistency and because of their commitment to quality.

“At an increased pace, CBR is providing families exclusive access to promising new potential treatment options through our focus on clinical trials,” said Geoffrey Crouse, CEO of Cord Blood Registry. “We are proud to partner with researchers at the forefront of stem cell medicine.”

Clinical Trials Break New Ground in Regenerative Medicine
Cord blood stem cells are currently being evaluated in a series of clinical trials exclusive to CBR clients as potential treatment for autism, cerebral palsy, traumatic brain injury and pediatric stroke. Results will be published upon the completion of the trials.

Dr. Michael Chez, director of pediatric neurology at Sutter Medical Center, is leading a landmark FDA-regulated clinical trial to test the use of a child’s own cord blood stem cells as a potential therapy to improve language and behavior in children with autism who have no obvious cause for the condition such as a known genetic syndrome or brain injury.

Dr. James Carroll at Georgia Regents University is conducting the first FDA-regulated clinical trial evaluating the use of cord blood stem cell infusions to treat children with cerebral palsy. Drake Haynes, who suffered a stroke after birth and was later diagnosed with cerebral palsy, was infused with his own CBR processed stem cells. Drake’s progress is constantly being monitored and he continues to see multiple physical therapists. His family reports anecdotal evidence of steady progress in Drake’s speech and mobility. Drake’s mother, Nikki Haynes, describes it as the “blinds being lifted.” A second FDA-regulated trial for cerebral palsy is underway at Duke University. A number of CBR families are currently participating in this key research as well.

Dr. Charles Cox, professor of pediatric surgery at The University of Texas Health Science Center in Houston (UT Health), is leading an FDA-regulated trial studying the use of a child’s own cord blood stem cells in the treatment of traumatic brain injury (TBI).

A new clinical trial will investigate using a child’s own cord blood stem cells as treatment after a pediatric stroke. While stroke is often thought of as a disease of the older population, the 2nd highest risk group for stroke is from 28 weeks gestation to 4 week old infants. CBR has partnered with leading researchers to launch an FDA-regulated clinical trial for this potentially devastating disorder.

About Cord Blood Registry
CBR® (Cord Blood Registry®) is the world’s largest and most experienced stem cell bank. For more than 15 years, we have led the industry in technical innovations. We are entrusted by parents with storing cord blood and tissue for more than 400,000 children. Moreover, CBR was the first bank to offer families in the U.S. storage for stem cells contained in cord tissue, which may help repair the body in different ways.

CBR has also helped more clients use their cord blood stem cells in treatments than any other family bank. Our research and development efforts are focused on helping leading clinical researchers advance regenerative medicine that may help families in the future. For more information, visit www.cordblood.com.

Posted in Stem Cells | Tagged , , , , | Leave a comment

Rock Wall Climbing (Occupational Therapy)

2013-06-12 16.32.33We are on year two of occupational therapy rock wall climbing over the summer for several weeks based out of Easter Seals.  From day one, I had already seen a big improvement from the year before.  He is motor planning a lot better or as I say he is coordinating his feet better.  Maybe it’s just been a whole year of getting bigger and more confident in climbing at parks, for example, but it sure is nice to see.  Now, the emphasis is really going to be to focus on putting his right hand on the wall and to grab for rocks.

He loves basketball, so one of the incentives is that for every time he touches the wall with “righty,” he is allowed to shoot until he makes that many shots at the basketball courts next door before leaving the facility.  Now that I have seen the progression with other parts of his climbing from one year to the next, I hope next year I see a lot more growth in the capability of his right arm doing the work.

It’s tough trying to climb only using one hand.  I tried it myself a couple of times and failed miserably.  He has gotten up about 10 feet with his feet with some assistance.  By the end of this journey, a trip to the top of the wall will hopefully be accomplished.

Posted in occupational therapy | Tagged , , | Leave a comment

Making the Adjustments

The following video shows Brady him playing baseball as he is up to bat hitting.  As you will see, he hits left-handed using only his left hand.  At times, we have put his right hand on the bat, but at this point it really does slow down his bat speed as the right-arm essentially gets in the way.  Plus, the right hand usually falls off after one swing anyway.  So you will see him making the adjustment that he needs to make in order to play.  He stands with his feet close to help him get as much bat speed as possible.  He fouls off a couple and then strikes a line drive!

Click Here To See Video

2012-08-28 09.56.17

Posted in Daily Living | Tagged , , | Leave a comment

International Alliance for Pediatric Stroke

Please read this important note and continued success for those fighting to help those with pediatric stroke:

Greetings!

It is with great pleasure to announce that after many long months of hard work, collaborating, discussing, researching, vetting, writing, editing, and designing, theInternational Alliance for Pediatric Stroke (IAPS) website has been launched! Thank you to all the organizations and individuals that helped in uniting pediatric stroke communities worldwide. It was a great global and collaborative effort!

We are excited for you to start using this up-to-date and informative tool to help guide you with your needs and/or interests on the topic of pediatric stroke. Please visit our website at www.iapediatricstroke.org.

The International Alliance for Pediatric Stroke was co-founded by several pediatric neurologists who specialize in stroke and by parents of children who have endured a stroke. It became apparent that there was a need to unite individuals and organizations who were working on behalf of these children. Therefore, IAPS was created to make the connections that will bring together survivors, parents, caregivers, families, and medical professionals including doctors, therapists, social services workers, and researchers on an international level.

We encourage you to share our website with pediatric stroke families, as well as your friends, family, physicians, and anyone that will benefit from having comprehensive information about pediatric stroke available under one website. Sharing this website will help raise awareness and empower people around the world to understand that strokes can, do, and will happen to children of all ages. Knowledge is power!

 

We hope you are as excited as we are about uniting pediatric stroke communities worldwide!  We are all in this together to make a difference for the children!

 

Warm regards,

 

Dr. Steve Ashwal, Mary Kay Ballasiotes, Dr. Gabrielle deVeber, Nikki Ide, Dr. Adam Kirton, Jessica Spear

Posted in General Information | Tagged , | Leave a comment

28 Rules for Fathers of Sons

It’s summer again and naturally with this season along comes baseball.  When I see the smile on a young kid’s face for making a simple catch on a pop up it makes it all worth it.  Today Brady had two line drive hits all while using only one hand of course at this point in his life.  The second one was a liner over the head of the first baseman.  The look of joy, happiness, excitement and being immensely PROUD of himself was priceless as he stood on first base.  He looked right at me, his father, with this proud look.  So I acknowledge it the best way I know how as I point at him and yell, “that a baby Brady, great job!” and then turn my point into a thumbs up.  It’s great being there for him as a coach who is involved and teaching him and his teammates.  The whole scene is inspirational.  So with that I will leave us with a link I just came across that I thought was a bit inspirational called 28 Rules for Fathers of Sons.

 http://www.diapersdaisies.com/2012/05/30-rules-for-father-of-sons.html

28

Posted in Inspiration | Tagged , | Leave a comment

Zach Sobiech

As I took a little break from writing recently, I came across another inspirational video. I love inspirational videos that pull out that raw emotion. As silly as it may sound, it is one of the reasons I love sports so much. Watching ESPN for as much as I did growing up, they ALWAYS put out great pieces about people. The following video is about Zach Sobiech who found out he had a rare form of terminal cancer at 14, but all I have to say is he LIVED. I had a bad last week, but, after watching this, I know and promise to make every moment count in a positive way.

Posted in Inspiration | Tagged , , | Leave a comment

Learning Words and Speech

Many kids with strokes and other kids with disabilities can struggle with speech in a variety of ways.  Some kids suffer from speech disability due to difficult utterance of some vowels or consonants. Uttering words that begin with those vowels or consonants is stressful to them. It impairs their speech ability and further stresses their minds. Some kids show symptoms of speech disorder due to some or the other neurological dysfunction of the brain.  In any case, it is important to get that extra help from a professional speech therapist if needed.  But many parents still want to continue to help in any way possible.  Obviously, you want to ask the professionals you know as to how you can help at home.  I saw the product below from ChildrenLearningReading.com and it made me think of a parent I met who was telling me how they liked how their school teaches their students to memorize words.  Personally, I completely disagree with that method as I believe sounding out words for understanding is the correct approach.  The below product from ChildrenLearningReading.com demonstrates effective ways to teach your youngsters how to read using the approach where the child sounds out the letters of the word.

Definitely watch the first video clip here at ChildrenLearningReading.com of kids practicing this method:
Click Here!

Posted in General Information | Leave a comment

Growing Up and Letting Go

Today our son went over to a friend’s house after school.  As simple as it sounds, this was a big moment for us.  We didn’t pick him up from school since he went straight home with his friend from his kindergarten class in his mom’s car.  They actually played together at our house the week before, which was also a significant moment, but this was a little different as he was off on his own.  Although, last week’s get together was cool for us as we got to see him interact with his friend, and they do have a lot in common.  It was wonderful to see.

This “play date” got me thinking about how much we hold onto him, how hard our journey has been, all the ups and downs we’ve gone through, and basically the protective bond we have with him.  I found myself asking questions like: Do we hold him back?  What is the difference between our son and our daughters?  Why does he seem so special?

My mom once said that Brady is our little angel on earth.  At the time, I was thinking “come on Mom, get real.”  As time has gone on, the more I see that same thing and really feel that he is.  Maybe all parents with children with disabilities or not feel the same way.  Somehow he has touched all of our hearts in some sort of unexplainable and different way.  Sometimes it’s just a smile, or how he treats his sisters, or the way he interacts with his grandparents or you personally.  Other times, it’s his infectious laugh, or a struggle with something we think is simple in life, or how he feels terribly bad when he tips over a drink.

I am forever grateful for just this one simple kindergarten relationship he has made.  He has always been around adults, especially, in our therapy world that never ends.  As a result, I think his development with kids his age has been a little stunted as he always favored just hanging out with the adults in a room filled with both adults and kids.  Now that he’s in school, we are happy to see him grow and are more than happy to let go a bit for him.

Posted in Daily Living | Tagged , | Leave a comment

Avoid Tying Shoes Entirely

laceanchor1

 

laceanchor2

With some stroke survivors having difficulty tying shoes, Kickstarter has created a new product called Lace Anchors 2.0 to combat this problem. After watching the video, it seems to be a well designed product, although I’m not sure if I’m totally convinced you can get your shoes completely tight with it and be able to slip them on and off at the same time. Recently, we have just been tying our son’s shoes loose to allow him to just slip them on an off, but we will definitely consider getting some of these. It doesn’t look like the product is actually on the shelves yet, but keep an eye out for it. Hopefully, you find this useful. You can find more information at kickstarter.com and search lace anchors 2.0.

Posted in Daily Living | Tagged , , | Leave a comment

Pediatric Stroke Children Learning To Tie Shoes

Ever since our son’s in utero stroke, we have had to worry about simple things in life that most people take for granted.  From day one, we were wondering things like will he be able to run, type on a computer, zipper his jacket, dribble a basketball, tie his shoes, etc.  A few year’s ago, I remember watching a boy tie his shoes who was in seventh grade at the time who had an in utero stroke.  He had right-sided weakness, but his arm/hand had been developing and getting better over time.  He was able to hold the right shoeless with his right hand firmly enough for him to tie his shoe in his own unique way.  Below is a video of a person I met recently who only has one hand and is still able to tie her shoes.  It goes rather fast, so try to keep up.  If anyone has a video of their child tying their shoe who may be weak on one side, please share with me so I can put it up for others to see.  It would be much appreciated as it would serve as a learning tool for others to follow.  As a parent, I’m still trying to figure out how to get my son to do this.

Here is another video that breaks down the process rather well.

Posted in Daily Living | Tagged , , | Leave a comment

Simple Stroke Vocabulary

Stroke: also called a cerebral infarction, is a life-threatening condition marked by a sudden disruption of the blood supply to the brain

Ischaemic Stroke: the most common type of stroke; caused by an interruption in the flow of blood to the brain (as from a clot blocking a blood vessel)

Haemorrhagic Stroke: when a blood vessel bursts, causing bleeding in the brain

Aphasia: loss of a previously held ability to speak or understand spoken or written language, due to disease or injury of the brain

Hemiplegia: paralysis on one side of the body

In utero:   in uterus; in, or while still inside, a woman’s uterus (before birth)

pediatric stroke:  occurring in children age 15 or under

neonatal or perinatal stroke: occurring in infants less than 30 days old

prenatal stroke: occurring before birth

atrophy: weakening or lessening of some ability

Posted in General Information | Tagged , , , , , , , , | Leave a comment

“Look At Yourself After Watching This”

Nick Vujicic

Every time I watch that clip about Nick Vujicic I cannot help but get inspired.  I wish this video would be shown to all eighth graders and high schoolers as I think it’s as good as a time as any for young learners to reflect in their lives.  For the purposes of this website, I think it provides an opportunity for us parents that have struggles with their kids to think maybe they don’t have it so bad.  And finally, this clip would hopefully also inspire anyone with a disability of any kind.  We have all heard the saying “life is short.”  It’s important to not feel sorry for ourselves no matter what the situation is.

NickVujicicimages

 

Posted in Inspiration | Tagged , | Leave a comment

Role of Sports in Pediatric Stroke Victims

It wasn’t too long ago where I, as a parent, had to get over my fears of putting my child with hemiplegia out there on teams.  He is still only six and he has been on a flag football team, two baseball coach pitch teams, two basketball teams, various small camps (soccer in particular) and lessons, and he is about to start his first soccer team and follow that up with baseball again.  Quite frankly, I have turned him into a little sports monster.  In fact, every morning he wakes up before the family and goes downstairs and puts on sports (typically basketball or football) on the television and is enthralled with it.  Usually, he tapes the games that he misses the night before cause he had to go to bed.  He’s good with the guide on the T.V. and tapes a ton of sporting events and watches them over and over.   The other day I asked him what time the Blackhawks, Bulls, Sox, and Cubs played, and he knew exactly what time they were all on that evening as he studies his Yahoo Sportacular APP on his iPod.

So as you can imagine, it is getting a little ridiculous.  Obviously, every kid isn’t like ours, but I encourage putting them out there to try new activities.  Brady’s self-confidece is sky high because of sports.  At first, it was probably harder on me as a parent than him watching him try to figure out how to do activities.  Parents on the teams he has played on have been so supportive that it brings a tear to your eye at times.

In baseball, he is like Jim Abbott and does the glove transfer after he catches with his left then he throws with his left hand.  When he bats, he hits left handed typically only using his left hand.  We try at times to put his right hand on the bat, but it often comes off after one swing and it’s hard for him to get it back on quickly.  Plus, he swings much harder using the one hand as the right arm works against him.

In basketball he is a solid dribbler and a great one handed shooter.  He constantly shoots baskets and is money when he does.  His arm is really strong since it’s obviously getting twice as much use as his other arm.  For example, he is the only kindergartener that can get the ball up and into a regulation basket.  Most of them can’t really get it half way up there and Brady can make them consistently.  My friend’s daughter, Emily, who has recess with him was asked if she played with Brady that day at recess.  She said to her mom, “Duh mom, Brady only shoots baskets the whole time.”  Anyway, here is a clip of a pretty typical amazing shot he made on our driveway the other day.

Posted in Brady Travel | Tagged , | Leave a comment

CBR Cord Blood Registry

CBR Cord Blood Registry is the name of the company we used to bank the blood cord of our most recent child (http://www.cordblood.com).  I encourage you to research why to save the blood cord.  There are many reasons to do it these days with modern medicine evolving.  You may have a perfectly healthy child, but you might need it some day in the future.  It’s better to be safe than sorry, but you have to get the information first before it’s too late.  Ask your doctor, research it on your own, or simply look at the site I just gave you.  Again, some illnesses can only be cured by the blood cord of that person.  Sibling blood cord can be used for some things, but not all.

Today’s Cord Blood Uses

  • •  Cancers
  • •  Blood Disorders
  • •  Immune Disorders
  • •  Metabolic Disorders

While research using cord tissue is at an early stage and medical treatments are not available today, the future holds many possibilities. Currently, more than 30 clinical trials worldwide are exploring the use of cord tissue stem cells as therapy for conditions like:

  • Heart disease
  • Stroke
  • Spinal cord injury
  • Cartilage injury
  • Liver disease
  • Diabetes

Oh, and if you do decide to use CBR, let them know that I sent you ;)


Posted in Stem Cells | Tagged , , | Leave a comment

Myomo Device

MYOMOIMAG0436Here’s another device for stroke patients that is kind of cool that we use with our son:   “Conceptually, the device is simple. “In over 85 percent of the patients we’ve screened, after the damage to the brain cells from the stroke, there is still a trace of signal in the muscle when someone is trying to move their arm,” says Gudonis. A sensor on the Myomo mPower device tunes into those signals in the bicep and tricep muscles, and “we translate it into motion with the robotics. It’s kind of like having power steering for your arm.” While wearing the Myomo device, patients practice typical activities like picking up a cup or opening a door. After several years of using the device for rehab, some patients have “graduated out” of using the device, as their brain has created new neuronal pathways to replace those that were damaged in the stroke, Gudonis says.” http://www.myomo.com/myomo-about-our-company-neurological-stroke-rehabilitation-in-the-news/bid/119668/Myomo-selling-devices-to-assist-with-stroke-rehab)myomo

Posted in Devices | Tagged , , | Leave a comment

Thumbuddy Special

We continue to meet amazing people through our journey.  We have known Mary Ellen Connelly for about two years now as our son was doing an occupational therapy program through gymnastics with her.  She was the person who was instrumental in getting our Myomo device funded through the foundation she founded called Thumbuddy Special.  We recently got to see first hand how wonderful Mary Ellen is and Thumbuddy Special at their annual banquet fundraiser.  It is so hard to express in words the feelings my wife and I came away with after seeing first hand the things she does for people.  She is an extraordinary person who finds ways to help people in incredible ways.  The organization Thumbuddy Special is equally special as every last dollar raised goes back out the door to those that need it.  Please visit their website at www.thumbuddyspecial.org to learn more about their organization. (www.thumbuddyspecial.org)MaryEllen-attachment.aspx

Posted in Charity | Tagged , | Leave a comment

People We’ve Met Along The Way

Besides all the people in the medical field such as the impressive doctors we have met along the way or people my wife has spoken to over the phone like those doing incredible stem cell research, for example, we have come across many other families and individuals affected in similar ways.

The first group I wanted to give mention to was one of the first groups we came across very early in our process.  It’s called Stroke Connections which was led at the time by Mary Kay Ballasiotes.  She is now the co-founder of International Alliance of Pediatric Stroke.  As new parents of this at the time, it was really hard for us to cope with this new world we were just introduced to.  It was was the first time we were put into a room with other children with strokes.  I want to thank Mary Kay for all her efforts fighting for this cause.  Her daughter has even gone to Washington D.C. for Lobby Week to bring stroke in children awareness to our congressmen.

The second group we met along the way was the staff at Island Dolphin Care in Key West, Florida.  I already spoke of them, but I wanted to mention them again as they are such a caring bunch and have a lot to offer.  I know they probably would be considered in the medical field, but they are more than that especially when you meet them and hear their story.  I want to give a special thanks to Deena, Eli, Pete and Joe.  Oh, and who can forget our favorite dolphins Fiji and Bella! (http://www.islanddolphincare.org)

Last year in Chicago we were fortunate to listen to the stories, ask questions and meet Jim Abbott.  Thank you for taking the time to meet Brady, take pictures with our family and listen to our story.  And also letting the people with kids go first!  You were very gracious with your time and we were inspired.  (http://www.jimabbott.net)

JimAbbott

As a P.E. teacher, I have been able to raise money for the cause through the American Heart Association.  Our first few years, we were calling our Hoops for Heart event Baskets for Brady.  The first two years we raised approximately $20,000 and had the money go directly to pediatric stroke research.  So thank you American Heart Association for helping us raise awareness and, in particular, thank you to Mary Lou Torrison for always pushing us to make it happen. (www.heart.org)

By far, meeting other families in similar situations has the biggest impact on me.  The comfort alone knowing that there are other people going through the same things is priceless.  Bouncing ideas off them as well is priceless and simply just seeing how they cope and handle certain situations.  Thank you in particular to the families who had their children in the same constraint camps as Brady.

Recently, my wife made me go to Dennis Rodman’s children’s book signing.  He wrote a book about being different.  Brady wasn’t able to go and meet him, but Tina is always looking for the inspiration in different opportunities.  It’s guaranteed we will continue meeting people along the way.  One person I think she hopes to meet one day is the author of the book The Adversity Advantage which is about Eric Weihenmayer who is the only blind man ever to reach the top of Everest and the Seven Summits.  We haven’t met him yet, but we do have his autograph on his book sent to us by a family member.

Rodman Signing

My wife’s next adventure on the calendar is going to St. Louis for a Cardinals game to meet Brendon.  You can see his story and inspiration at www.brendonssmile.org.  This boy reminds us a lot of Brady in many ways.  Tina has written the mom over the years occasionally, and I think we will finally meet them in person.  I’d like to thank them for their efforts in raising awareness of childhood strokes.

 

Posted in Brady Travel | Tagged , , , , , , | Leave a comment

Therapy with dolphins!

IslandDolphin100_4160When Brady was 3 years old, we took him to Key West to Island Dolphin Care to swim with the dolphins through their unique dolphin therapy program.  The picture shows him with a trainer/therapist, Eli, where Brady is using his right hand with a seal.  We obviously wanted to try everything possible on our journey to get Brady better after his stroke in utero, and this was one place we came across.  I have to say, this place is a little magical.  My wife can’t wait to take Brady back not only to see the dolphins but see the people again.  It really is a great family atmosphere.  See the link section to go directly there are copy and paste (http://www.islanddolphincare.org)  to meet their staff.  The staff is great but the quick story is their son, Joe Hoagland, was born with a heart defect that required numerous surgeries.  Joe suffered a massive stroke during one of those surgeries.  It partially paralyzed his left side, leaving him unable to stand, sit or lie down without help and with a myriad of neurological challenges.  He wasn’t responding to regular therapy, until one day he met a dolphin named Fonzie at a place that offered public swims with dolphins.  His mother noticed how he was responding to the dolphin, and their journey began in creating this place.  Visit their website to learn much more.

Posted in Brady Travel | Tagged , , , , | Leave a comment

Therapies including “Constraint”

Each week we are attending physical therapy, occupational therapy and speech therapy about four days a week.  The traveling to and from therapy every day every year has been one of the most challenging things about this for our family.  The time and energy and the guilt of dragging around his other siblings in the car all the time all adds up amongst other things.

Brady’s speech has been improving ever since his first words finally came out.  We are lucky at this point in his life that his speech is doing well and at this point he is still fine tuning some of the sounds but always is improving.

His physical therapy at Easter Seals has worked on a ton of stuff over the years that his therapists could probably speak to much better than I can.  In general, his legs, hips, and torso are the main focus.  They have so much equipment that he has used over the years with different functions such as staircases, ESTIM, treadmills, and vibration machines to name a few.  When he first started going on the treadmill he could only take a few small steps, and now he can go for extended periods of time and even uses the incline too.  On of my favorite things to watch is what I call “the cage” where they hook him up with a belt that several bungee cords attach to him and the surrounding cage allowing him to jump super high using his strong or weak leg.  Most recently we had him working at one of outsource programs Easter Seals has over at a climbing wall place.

Occupational therapy is where he has had the most focus done on his right arm.  The strengthening of the shoulder has been the first goal.  He can move his arm around decent from the shoulder, but the hands and finger capabilities still have a ways to go.  Hopefully with time it keeps improving.  Easter Seals also has a couple machines they use that are attached up to video games.  But one of the most instrumental therapy programs I think we have done is called Constraint Therapy.  In our case, our son’s left arm, which is his full functioning arm, was fitted with a cast so he could not use it which in theory forces him to try to do everything with his right arm/hand.  He would usually do this in a camp setting with other kids and various degrees of improvement was seen with each child.  Ironically, our speech therapist seemed to always see an improvement in his speech too each year after constraint camp.  We highly recommend this form of therapy for any child in a similar situation.

In all three therapies, everyone is always being so creative in the quest to make him better.  Part of it is keeping the motivation for him and part of it is for continued function in more ways.  Continuing to do the therapy at home is probably the biggest part of the equation too.  Stay motivated and continue to stay on it.

Posted in Constraint Therapy | Tagged | Leave a comment

Initial Diagnosis

After the phone call to my wife about Brady’s in-utero stroke, came all the questions of what to do next.  To be honest, that whole first year is somewhat of a blur to me at this point as I’m writing this five years later.  I remember going to a hematologist to get blood work for Brady to see if there was something with his blood that may have caused the stroke among other things.  The doctor had to draw a lot of blood from our little baby resulting in another awful moment as parents to watch.  After waiting a few days, we find out Brady’s blood was fine, but we were told that Tina should tested as well.  Often in cases like these no explanation is found as to why this happened.  At this point, the doctor said to us many devastating negative outcomes to expect in Brady’s future such as he won’t be able to run, dribble a basketball, and type among other things.  Emotionally, these sorts of comments are hard to handle at the time.  The neurologist and movement specialists were next on the list of doctors to see.  There really wasn’t any true explanation of why a stroke in utero happened to our son.  I’ve learned that this happens to 1 in 4,000 births.  It is possible that a piece of the placenta broke off and traveled up the bloodstream and lodged in his brain at the end of the artery.  In any case, the stroke severely damaged the outside of the majority of the left side of his brain.  One thing we are grateful for is that the stroke didn’t damage the inside portion of the brain that effects the intellectual functions of the brain.  So are challenge is to figure out ways to improve or fix gross motor functions on the right side of his body ranging from his foot, leg, hip, arm, and even muscles in the mouth.

Our lives changed the day of that phone call.  We were now in the world of doctors and soon to be a lot of therapy.  It has been rather exhausting, but my wife is tremendous with her passion to do whatever it takes to help Brady.  She will go to any length to help him or try and find something that just might help.  Brady is very lucky to have Tina as his mother.  You see parents, who obviously love their kids, help their children in varying degrees or do things different than we would do.  Of course, everyone is in different situations, but I am very happy with the effort my wife gives for Brady’s needs as there aren’t too many miles she won’t drive or an amount of time that is too much if it’s for Brady’s benefit.

Posted in Diagnosis | Tagged , | Leave a comment

AFOs, hand braces, kinesiology tape

Along our stroke in utero journey, one of the first things we learned was that AFO’s (ankle-foot orthotic) are often used on children with cerebral palsy or other disorders affecting muscle function.  These little devices are used to modify the structural and functional characteristics of the skeletal system.  Our son often has used them for his lower leg/ankle.  He would sometimes  wear an AFO on his ankle during the day to work on ankle pronation and even at night for dorsiflexion.  These devices look like ankle braces but have medical purposes and usually require a yearly visit to the orthopedic doctor.  Due to the size of them,  we had to have our son wear to different size shoes as he wore the AFO on one leg but not on the other.  Now that he is a little older and doesn’t wear the full AFO anymore, he is wearing “inserts” which are little plastic inserts in his shoe that don’t go over the top of his low-top shoes but still provide him support.

We also have been introduced to hand braces now too.  Brady has been using them off and on as his thumb which has the least among of control is often bent inward throughout the day.  So he wears a hand braces that basically just allows his thumb to remain in a natural position and restricts contracting inward for no apparent reason.  The picture shows him in his small hand brace.

handbrace100_3923

Kinesiology tape, or often referred to as therapeutic tape, is another item we have come across in the therapy world.  Therapists have applied it to Brady in a variety of places including his legs, arms, back, shoulders, etc.  This tape has an elastic cotton strip combined with an acrylic adhesive that is used in treating injuries or a variety of physical disorders.  For Brady’s purposes, it was just another attempt to hold a certain part of the body from atrophying as it applied basic support. (http://www.kttape.com)

kinesiology-tape-1

Posted in Devices | Tagged , , , , , , | 1 Comment

Stem Cells and Saving Blood Cord

One of our biggest regrets in life is not banking Brady’s stem cord blood when he was born.  At the time, people were just starting to do this more, and we actually had thought about it for a few different reasons and were seriously thinking about doing it.  Maybe our downfall was that we weren’t thinking we would need it for him but maybe for other family members.  It was fairly pricey at the time and then time passed during the pregnancy, and we didn’t do it.  These days it’s much more affordable and would be our biggest recommendation to any family having a child.  The possibilities are endless for the use of stem cells especially if it’s your own stem cells.  We have banked the blood cord of our kids since and hope one day to be able to use it for Brady.  The problem is sibling stem cell therapy is still more in the research stage and a little behind stem cell possibilities when it’s directly from that person.  Tina has called places such as Duke University and University of Minnesota where they are doing stem cell research but the work being done was for own cord patients and sibling cord work was a little more complicated.  For example, chemotherapy would need to be used for sibling blood cord therapy.  But we have our name and number on their lists for the time being in case things ever come to fruition with their research.  It is encouraging to hear that stem cells have been found to regenerate and repair damaged cells.  As a parent, sometimes just that little hope is all we need to move on for the moment.

Personally, I find it encouraging to see professional athletes getting their injuries fixed more often through these sorts of methods.  For example, Bartolo Colon (MLB pitcher) had stem cell treatment for his rotator cuff.  His stem cells were extracted from bone marrow.  Also, Peyton Manning was reportedly using stem cell treatments for his neck injury.  So we like to keep an eye out for any story we see and make our own personal phone call to see where they are at, find out if they are legitimate, it it fits our needs, and maybe get put on their call list.

Where we live there were about 3-4 cord banking companies that we were considering.  Tina put in quite a few phone calls researching the best place for us as she was skeptical of a few things.  Some of the places are a lot more affordable these days, as I mentioned, but we ended up going with a company that cost a little more but one that we could trust.

Posted in Stem Cells | Tagged , , | Leave a comment