Category Archives: Our Story

My Mother’s Day Wish

In July of 2012, I was on top of the world! After fighting infertility for years, my husband, Bryan and I were finally pregnant! We were expecting 2 amazing baby boys who were due late November. My pregnancy had been nothing short of amazing and we were off to meet my new nephew and visit my hometown for a baby shower. That’s when our lives were changed forever.

Shortly after arriving in Illinois, I began experiencing some concerning symptoms and headed to the hospital to make sure everything was ok. Unfortunately, we learned that I was 90% effaced and a centimeter dilated. At only 21 weeks pregnant, this was very, very bad news. I was strapped to a gurney and loaded onto a helicopter en route to the nearest hospital with a level 4 NICU.

Once I arrived, the doctors were successful in stabilizing me and preventing such early delivery. As 24 weeks is considered the limit of viability, I knew this was critical and I settled in for what I prayed would be a long, uneventful stay. Bryan returned to our home in California, 2200 miles away, to work and we began to count each day as a prize.

After nearly 2 weeks on strict bed rest in the hospital, labor began. The doctors did all they could to prevent it, but they just couldn’t hold it off any longer. I called Bryan at 3 o’clock in the morning and told him to get on the soonest possible flight back to Illinois.

Since our boys were fraternal twins, my doctor decided to try to deliver only one baby and keep the other inside as long as possible. At only 23 weeks and 4 days gestation, my sweet little Logan was born.

The Neonatologist told us all about the risks and challenges that face a child born so early. We knew we just had to give our tiny baby a chance. After Logan was born, he gave my finger a tight squeeze to show me his strength and was whisked off to the NICU. That evening, Bryan arrived and spent the next 48 hours making constant runs between the NICU and Labor and Delivery units to bring updates.

Two very valuable days later, Jacob decided it was time to join us and was born via emergency Cesarean. He was the size of an ear of corn and weighed only 1lb 12 ounces.
Once both boys made it through their first 24 hours, we prayed we were in the clear. We settled into our routine and spent every minute with them that we could. When I was discharged from the hospital, we stayed with my parents and made the hour commute each and every day. Each day was a strange mix of hope, fear, desperation and courage. We learned the routines of the hospital, the rotations of the doctors and nurses, and feeling of our hearts stopping any time the phone rang at 2am.

On the morning of August 11, we got a call that Logan was struggling. The doctors and nurses did all they could to stabilize him, but he wasn’t breathing properly. The hour drive to the hospital felt like an eternity as Bryan used all his strength to fight the urge to drive at light speed. We made it just in time to hold our sweet baby for the first and last time.

The next day, Jacob’s fight began. With his new guardian angel at his side, Jacob endured his first emergency surgery. He would have 8 more by the time he was 6 months old. He showed us that he has strength and determination to handle anything. We also learned about our own strength, our ability to absorb a crash course in neonatology, and immense value of family and faith.

We were all stretched beyond our limits and taught lessons we never could’ve imagined in those first 4 months. After 144 days in 3 different NICU’s, we got to bring our amazing little boy home!

We learned early on that Jacob suffered a bleed in his brain. However, there is no way to know what the long term prognosis will be. We were told that Jacob would never see, hear, walk or talk. That was the day we committed to giving Jacob the best life possible and to absolutely prove them wrong!

When Jacob was 10 months old we made our first trip to Philadelphia to visit The Institutes for the Achievement of Human Potential. The specialists there have been helping children recover from brain injury for 60 years. We have returned every 6 months to be evaluated and have a home program developed just for him. We commit every day to giving Jacob his very best chance. Because of this program, while he was once blind, he can now see! He was once deaf and he can now hear!! Jacob is much healthier, can read independently, and has made incredible gains. We have learned invaluable lessons about nutrition, intelligence and respiration. Most importantly, we have learned to always believe in and respect our incredible son.

We have been given many diagnoses for Jacob. He suffered from cortical blindness, profound hearing loss, developmental delay and Cerebral Palsy. He was also given the gift of incredible joy and insurmountable determination. He has parents, friends, family and specialists that are behind him 100%!

Now, Jacob is four years old and he is absolutely full of sunshine and joy. He loves bathtub mohawks, tractors and turtles, because he thinks their shells are cool. Jacob has a heart of gold, is incredibly intelligent and is a wonderful big brother. Just check out the letter that he wrote to Santa using his facilitated communication board. (Not his penmanship, but his words)

Jacob is full of smiles and his laugh is the greatest sound in the world. The most amazing thing about Jacob is that he is so happy and determined, despite the obstacles that he faces from being born extremely prematurely and the challenges of cerebral palsy he continues to overcome each day.

Now, Jacob’s greatest obstacle is his mobility. He wants so badly to crawl and walk and run. He has the strength, but lacks the coordination. We have researched many therapies that have proven to help children just like Jacob. The challenge we now face is accessing these therapies for him as they are not covered by insurance and are paid completely out of pocket.

There is no gold standard of care for children with cerebral palsy. But, that does not mean that there are not techniques that can help these children immensely. Through our research we have found the following therapies that we believe can help Jacob overcome his physical obstacles.


Our Plan (please see details on each at the end of this post)

Step 1: Stem Cells – to repair damage in the brain and create a good foundation

Step 2: HBOT – to improve efficacy of Stem Cells, reduce inflammation and strengthen the foundation

Step 3: MNRI and CME – to provide input and information to the new cells and build the structure upon that foundation!

The cost of this plan is $88,200

We believe in our little boy and we will stop at nothing to help him reach his goal of running! We have completed extensive research into these therapies and have consulted with many medical professionals to determine that this combination will offer great hope and progress to our incredible Jacob.

After cutting spending, depleting our savings and putting every penny towards Jacob’s therapies, we have exhausted our financial resources. We cannot do this alone. If you are able, please know that any support you can offer will help us move mountains! We know that this “wish list” for Jacob will require substantial fundraising, but we have faith that, with your help, WE CAN DO IT!!

There are 2 great options for donations.
The first is to our new friends at The Bridge to Healing 501(c)3. A donation here is fully tax deductible and 75% of your donation will go into Jacob’s account and will be used for his therapies. The rest will go into the general fund to help the organization match donations for other children like they did for the first $1000 we contributed for Jacob.

Click Here To Donate via PayPal

(Please be sure to designate Jacob Dein as the donation recipient on this page)

The second option is to make a direct donation through our GoFundMe page or send a check. I will send all donations directly to The Bridge to Healing AND have the donation matched by my company! This means a $100 donation turns into $150 for Jacob’s account!

We are so grateful for all the love and support we have received along this journey. I look forward to sharing updates on the incredible progress our little fighter will make! We’ve been told from the beginning that this is a a marathon, not a sprint. We believe in him and we believe in you.

If you know anyone who may be able to help or who may benefit from our story, please pass this along. Any questions? Feel free to email me at or visit  Facebook page I Am On Team Jacob

Thank you all and Go Team Jacob!!

Stem Cell Treatment – Mesenchymal stem cells from umbilical cord blood are considered to be universal donor cells because they are not immediately recognized as foreign. The cells home to damaged tissue and are known to secrete molecules called trophic factors. Trophic factors from mesenchymal stem cells are known to stimulate repair of damaged nervous tissue in both the brain and the spinal cord. Some of these are neurotrophic factors that promote neuronal growth, induce new blood vessel growth, neurogenesis and astroglial activation, encourage synaptic connection and axonal remyelination, decrease programed cell death, and regulate microglial activation. Evidence shows that this treatment can make significant impact by targeting specific areas of injury and can impact vision, spasticity and mobility. This treatment is an infusion of stem cells from umbilical cord blood donated from a healthy pregnancy. These are NOT embryonic stem cells and this treatment is very low risk. This is the most promising development in the treatment for Cerebral Palsy and is our best shot to heal the damage to Jacob’s brain.

Cost – $18,000 per treatment plus travel, 2 treatments per year

HBOT – Hyperbaric Oxygen Treatment has shown reproducible benefits for more than 2 decades in hundreds of children with CP around the world. It works by regenerating or reviving cells in the ischemic penumbra in the brain. This increased vascular activity allows the reactivation of “idling ” neurons that are a result of injuries such as brain bleeds. This therapy will help all of Jacob’s other therapies be more effective.

One Time Cost of $19,000 or monthly rental of $2850

MNRI – Masgutova Neurosensory Reflex Integration. This therapy identifies the reflexes that are not working properly and, through specific exercises, corrects the abnormality. Through this, Jacob will have improved perception of his body and where it is in space, and will gain use of his body in the proper manner.

Cost – $9850 biannually for 8 day intensive with family training (plus travel and lodging) and $3750 biannually for 5 day in-home intensive treatment between

CME – Cuevas Medek Exercises®, is a psychomotor therapy approach for infants suffering abnormal developmental motor evolution caused by a known or unknown non-degenerative syndrome affecting the Central Nervous System. This therapy can be applied to children from the age of 3 months until they achieve and control independent walking. Because the CME® certified therapy practitioner needs to expose the infant to the influence of gravity, by providing progressive distal support, the use of this therapy may be limited by the child’s size and weight. It is critical that we begin this therapy as soon as possible. The bigger Jacob gets, the more challenging this therapy becomes.

Cost – $4500-$6750 biannually for 3 week intensive treatment, 2-3 hours per day.

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.

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!