Category Archives: General

Its report time

As participants in the Intensive Treatment Program at IAHP, we are asked to submit reports halfway between our biannual visits to keep the staff up to date on Jacob’s progress.  Of course, any time we have questions we are encouraged to reach out, but these reports supply the regular contact that assures the program’s success. This rainy, blustery day coupled with the sweet sound of Jacob sleeping make the perfect environment for it.


In these reports we supply information on Jacob’s nutrition, program achieved, changes in abilities and the ever important question “is your child worse in any way?”  We also supply videos of Jacob doing his program.  The entire team meets to review the information we send and make recommendations for any changes.

We will tell them that Jacob is LOVING his Intellectual program.  He sees 25 “Bits of Intelligence” every day and 25 words or couplets.  Of these, 5 rotate daily so he is always getting new information.  His bits consist of large clear pictures with the corresponding title and the subject can vary greatly.  He may be learning about ocean fish, great works of art, vegetables or US presidents.  Soon we will move from couplets to phrases and then books!


Jacob is also doing well with his physical program.  This consists of his inclined track, gravity assisted environment, gravity free environment, patterning and flat floor crawling.  The inclined track is strategically designed crawling surface that is at a downward angle to decrease the burden of gravity.  Any movement Jacob makes will create motion to teach him what he needs to do to be successful.  Similarly, Jacob’s gravity assisted environment suspends Jacob in the crawling position and makes it even easier for Jacob’s movements to create motion.  Patterning is passive on Jacob’s part and we move his body in the pattern in which he will crawl to send the message to his brain “this is what it feels like to crawl.”  The gravity free environment is also passive on Jacob’s part.  It is like a bouncer on steroids.  Jacob can be suspended in many positions and move in all directions.  This will develop the vestibular areas of the brain that are responsible for coordination and integration.  Together, these activities will get our little guy moving.  He is SO close and he gets closer every day.  We have clear evidence that he has the ability to move his body in the correct way, we just need to connect all of the dots.  When he does, WATCH OUT!!


Admittedly, we have had some challenges in the last 3 months.  Our little guy has been having a hard time sleeping and swallowing.  This has disrupted quite a bit of his program.  Some nights he does not tolerate his respiratory patterning device and some days he sleeps into the afternoon which takes away our valuable program time.  Thankfully, the team at IAHP has been right along side us working to find a solution.  We are taking steps in the right direction and hope to be back on track soon.

Our greatest success in the last 3 months is the improvement in his nutrition.  Jacob has always had a very nutritious diet, but in an effort to increase calories, we fell out of balance.  This resulted in even more challenges achieving his calorie goals.  006 (2)
However, since we discovered our error and corrected it, he has been eating like a champ…and he is gaining the thighs to prove it!!


Well, I hear our little bug stirring and he is certain to be hungry.  Its applesauce time!

A Tribute to our Volunteers

We have been so blessed in the last 2 years meeting such incredible, giving and dedicated people.  One of the particular groups I would like to thank today is our patterners.  These wonderful men and women come to our house, traveling usually over 30 minutes, to spend an hour with us providing a very important therapy for Jacob.


Patterning is procedure that requires 3 people, one at Jacob’s head and one on each side.  Jacob’s head, arms and legs are moved in the pattern in which he will crawl and it sends the message to his brain, “this is what it feels like to crawl.”

Patterning is done 6 times a day, 7 days a week.  Rain or shine, holiday or not.

These men and women have given our family such an incredible gift in their love and support.  They tolerate Jacob’s occasionally irregular sleep schedule causing last minute cancellations and my weekly calls to request substitutes if someone is unable to come on their scheduled day.


Thank you! Thank you! Thank you, dear friends!!

If you are local and would like to join our patterning team, we can always use more!  Its easy, its fun and it requires no more skill or training than moving your arms left to right.  Don’t worry, we can train you to be an expert patterner in no time!

I AM ON TEAM JACOB – click here learn about Team Jacob

I am on Team Jacob…are you!?

In recognition of Prematurity Awareness Month, we would like your help in sharing Jacob’s story!  Together we can spread the word about the real lives touched by prematurity and the amazing work of The Institutes for the Achievement of Human Potential to help both brain injured children and well children.

Here’s the plan…

Step 1 – Snap it! Take a good ole selfie of yourself with your Team Jacob sign (click the link to open and print or make your own!)

Step 2 – Post it!  Share it on your Facebook page AND the I Am On Team Jacob Facebook page. Share it on Instagram and Twitter too with #iamonteamjacob  Don’t forget to like the I Am On Team Jacob Facebook page…we want to see you!  You can even post it at your office!

Step 3 –  Share it!  Tag and Challenge 5 of your friends to show their support and spread the word, visit the website and Snap it! Post it! Share it!!  We loved the ALS challenge…let’s create the same awareness!

Now the big question is…who will be first??  Go Team Jacob!!

Are you new to Team Jacob?  Welcome!

Jacob’s story is nothing short of extraordinary.  He was born at only 23 weeks, 6 days gestation…that is 4 months early.  After losing his twin brother, Logan, he fought through 4 months in 3 Neonatal Intensive Care Units and endured 9 surgeries before he was 6 months old.


In his first year, Jacob was diagnosed as functionally blind with a profound hearing loss.  He is recovering from hydrocephalus, a severe brain bleed and even battled incredibly persistent fungal balls on his kidneys.  He has also been diagnosed with Cerebral Palsy and Developmental Delay.

Jacob at his first IAHP visit
Jacob at his first IAHP visit

But, that is just the beginning of his story.  Once the dust settled, we set out to find answers.  Our prayers were answered when we found The Institutes for the Achievement of Human Potential.  They have been working with and helping brain injured  for over half a century and they have found the answers to make these kids defy their diagnoses!

Jacob was blind, he can now see!

Jacob was deaf, he can now hear!


We still have a long way to go, but we have a SPECTACULAR team!  From the experts at IAHP, to our incredible volunteers and our amazing friends and family.  And now YOU!  Thank you for joining our team.  Thank you for showing your support.  Thank you for sharing our story!!


There is so much more to say and so much more of his story to tell.  Please follow the blog and join the I Am On Team Jacob Facebook page.  There are so many exciting things in our future, both for Jacob and for hurt kids everywhere.

Welcome to Team Jacob!  Tell a friend!!

photo 11






Throwback Thursday: My, how time flies!

You may have seen a picture in the last post from the March of Dimes event that was a blurry image of some typed words.  If you worked extra hard, you may have even been able to make out those words.  Even though those words were mine, the story was ours, they appeared the same to me the moment I saw them…distant and blurry.  It is not that I was having a visual problem or, perhaps, started the wine a little early, it is just hard to believe, sometimes, that it all really happened.

It feels so long ago that “everything happened.”  I often say it was a lifetime ago, but that is surely an understatement.  If I remember correctly, I wrote those words as the intro to our CaringBridge site that we used to keep friends and family updated for the first year.  It is so strange to even imagine being in that place at that time.

Flash forward to today…we are so blessed with our amazing fighter.  We have incredible plans and opportunities on the horizon and we have incredible new people in our lives.  But, for today, here’s to the memories…

Almost a year ago, my husband, Bryan, and I set off on a trip from our home in Northern California to my hometown of Bloomington, IL.  We were expecting twin boys and my family friends were throwing us my first baby shower.  However, 2 days before the shower, 2200 miles from home, I started experiencing some concerning symptoms and went to the hospital to get things checked out.  The doctors found that I was 90% effaced and 1cm dilated.  I was put in a helicopter and flown to the nearest hospital with a NICU.

Because my babies had not yet reached viability (24 weeks) I was given very bleak expectations.  The amazing doctors at St Francis in Peoria, IL gave me medicine to delay labor and put me into Trendelenburg position (lower half higher than upper half) and there I stayed praying that my boys would stay safe inside as long as possible.

It worked, I was stable.  My husband flew home because he had to return to work and we planned to have him visit every few weekends until the boys were born.  However, the evening of August 3rd, I started having contractions and they couldn’t be stopped.  I called Bryan at 3am and told him he needed to get back to Illinois as quickly as possible.

On August 4th, at 7:52am, Logan Robert was born at 23 weeks 4 days gestation.  He was only 1lb 3oz but he survived.  The doctor was able to keep our other baby, then known as Mac, of Mac and Cheese, in my womb where we prayed he would stay.  I went back into Trendelenburg and Cheese went to the NICU (don’t worry, we officially named him Logan once Bryan arrived that evening).

The next 48 hours were a whirlwind.  Bryan made laps between the NICU and L&D units bringing updates on our sweet miracle day and night.  He never actually slept.  One of our nurses finally gave him scrubs since he didn’t have clean clothes and even brought him Tshirts as our stay grew longer and he hadn’t had a chance to pack appropriately.

Again things seemed stable…

The evening of August 5th, I started having contractions again.  My body couldn’t hold Mac in any longer. At 12:26am on August 6th, Jacob Bryan was born at 1lb 13oz, 23 weeks 6days gestation.

With both boys now in the NICU, we began life in a world we had never really known existed.  A world where things aren’t really one day at a time, but one hour or one minute at a time.  A world where they say “don’t get too high on the highs or too low on the lows” and “it’s a marathon, not a sprint.”  A world where miracles happen every day and God’s grace is everywhere.

Oh, what a night!!

**Watch our presentation in this post!!

Thursday night we were honored to serve as the Ambassador Family for the local March of Dimes Signature Chef’s Auction gala.  It was such an incredible opportunity to share Jacob’s story and raise awareness of the real lives saved by the discoveries supported by the March of Dimes.  For those who are not aware of their mission, the March of Dimes funds research to prevent prematurity and help those born too early survive and thrive.  Boy, do we know a thing or two about that!!

Jacob captivated the entire audience and even earned 4 standing ovations!  To top it off, following our presentation was “Fund the Mission.”  This was auction style, straight donation forum where $21,000 was raised for the March of Dimes in just minutes!!  Way to go Jacob!!!

Check out our presentation!  The first video is the amazing creation of our new friend Henry.  He cut and created this from 2.5 hours of video and over 200 pictures…all in a week!!   It was used to introduce our story.  The second video is my speech…please forgive the visual quality.  We hope to have the professional version uploaded at some point.  Henry says “make sure to check the setting (the little gear icon) once the video begins and make sure 1080p is selected for best quality.”  So, without further ado…

007 043 045 046 087014082021012 (2)009008006 (2)005082052012

WooHOOOO!!! He FINALLY hit 20 lbs!!!!

This is a feat that has been long awaited!!  Our sweet little boy has FINALLY hit 20 lbs!!  He has been a great eater since he got over his little post-Philly bug and we couldn’t be more thrilled.


As we were preparing for the trip, we reanalyzed his diet and found that as we had been so focused on maximizing his calories per ounce, we fell out of balance and were giving too much fat.  As a result, he was throwing up way too often.  Just think of the last time you ate a bowl of overly buttery alfredo pasta or something else with a lot of fat.  It makes your tummy feel yucky, right!?  Well, that is what was happening to Jacob.

Thankfully, we caught it and fixed it.  He has been a fantastic eater ever since.  In fact, today he hit 1289 calories and he has been eating 33-35 ounces per day for the past several days!  Boy, I sure hope I didn’t just jinx it.

Way to go, Jacob!!!  Next goal, 23!!

So, what does “defying the diagnosis” mean?

Jacob has been given an laundry list of diagnoses.  First came profound hearing loss, then cortical blindness and potential cerebral palsy.  We even had someone tell us “your son will never see, hear, walk or talk.  No matter what you do.”  As you can imagine, we were terrified.

Thankfully, we found The Institutes for the Achievement of Human Potential.  After reading the book What to do About Your Brain Injured Child by Glenn Doman, we knew we had found our hope!  The team at IAHP has been working with and successfully treating brain injured children, like Jacob, for 60 years.

what to do

You see, all of these labels that he has been given are simply symptoms of the brain injury he sustained at birth.  That is actually GOOD news because it can be fixed.  Our goal now is not to just live with these diagnoses, but to help Jacob heal and overcome them!

When Bryan and I attended the What to Do course at IAHP we learned a VERY important fact…brain growth can be slowed, brain growth can be stopped AND brain growth can be SPEEDED!  The best part is that the research the staff has been conducting over the last 60 year has uncovered just how to do that.

Our class with the staff at IAHP. Can you find us? Its like where’s Waldo!

It is really simple actually.  The staff uncovered the critical steps in child brain development and what causes these steps to occur.  We simply replicate this natural process with increased frequency, intensity and duration to rebuild the damaged pathways.  You’ve probably heard of neuroplasticity…well, they have been doing just that all along!

Jacob at his first IAHP visit
Jacob at his first IAHP visit

The other extremely important factors are giving Jacob the best nutrition possible so he has everything he needs to regrow the damaged tissue, improving his breathing and creating an environment that is ideal for his development.  I will write more about Jacob’s nutrition, respiratory program and what we do to give him the best possible environment in another post.

What this adds up to is a very intense program of stimulation and opportunity in recognition of the orderly way the brain develops.  Jacob does therapy all day every day. Every minute is on purpose.  At our last revisit, another mom asked me how many hours a day we spend on Jacob’s program.  The simple answer is all of them!  Yes, its a lot.  Yes, it takes a team. Yes, its hard.  But, YES, its working!  The clearest evidence of this is the change visible in Jacob’s brain via MRI.

Jacob Scans

This may be hard to understand at first, but just look at the increase in the dark parts of the scan on the right!

So, here we go!  Off to prove the naysayers wrong and delighting in every minute of it!  I look forward to posting videos of Jacob’s incredible improvement.  I welcome any questions and I cannot recommend more highly that everyone read the books written by Glenn Doman and the staff at IAHP.  They help both hurt children and well kids!

No time like the present…

July 25, 2014

Two years ago, possibly to the day, our world was turned up-side-down.  One day, my husband, Bryan, and I were hopping on a plane to my hometown, Bloomington, IL for a baby shower for our twin boys and the next I was strapped to a gurney, loaded onto a helicopter and given the most devastating news I could imagine.


Our world, since then, has been far, FAR different than we ever imagined.  We’ve walked hallways we hardly knew existed, had conversations we never fathomed and prayed harder than ever.  We also met some of the most amazing people, who have shared so much love and support, and we’ve also learned so much about life, love, faith and human development.  We have fought extraordinary battles and have had amazing victories…with plenty more to come.


My hope, with this blog, is to share our story and empower other families to fight for their children.  I must stress that I am NOT a doctor, therapist or a writer.  I am a mother.  I hope that our story helps, heals, brings a smile or inspires you to believe in the amazing power of children.  I hope you enjoy our story…