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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.

http://bridgetohealinginc.com/project/joy-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!
https://www.gofundme.com/jacobdein

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 jenniferdein@gmail.com 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.

Remembering our sweet angel

We love you baby. You are forever in our hearts and on our minds. 

Today we remember our sweet angel, Logan.  We miss him terribly, but we know he is with Jesus and is being an amazing guardian angel for his little brother, Jacob, and now Lily too.  They say our time on earth is just the blink of an eye compared to our time in Heaven.  So while our sweet baby is skipping through fields of wildflowers, by the time he looks back to see if we are with him, we will be.

The Brave Little Soul
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, ‘Why do bad things happen? Why is there suffering in the world?’

God paused for a moment and replied, ‘Little Soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.’

The little soul was confused. ‘What do you mean?’ he asked.

God replied, ‘Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone. ‘The little soul began to understand and listened attentively as God continued. ‘The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.’

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, ‘I am brave; let me go!! I would love to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!!’

God smiled and said, ‘You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.’

God and the brave little soul shared a smile, and then embraced. In parting, God said, ‘Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.’

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts.  For so many people dropped their differences and came together to show their love.  Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. People checked a website and sent notes of encouragement. People made and brought meals to the family of suffering. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened.  God was pleased ….

Thank you all for your support.

We have so much to be grateful for!

Today is #GivingTuesday and you are likely to receive loads encouragement to give to your favorite non-profit organization. We think this is a great thing! This year, however, we would like to offer another great option. Instead of giving to an organization that simply promises to do good, your money could go to help an incredibly determined little boy get the therapies he needs to achieve his dreams. Jacob tells us all the time that he wants to run, and we are committed to get him there, but we need your help. We have been introduced to a wonderful charity called Bridge To Healing. They are a non-profit that helps families like ours raise funds for their childrens’ treatments that are not covered by insurance. Your donation will not only be tax deductible, but your gift will make a life changing difference! On top of that, Bridge To Healing will match the first $750 raised! If you have the means, please follow the link below and enter Jacob Dein in the note and your donation will go directly to Jacob’s account. We are so grateful for all the love and support we have received! Thank you Jacob fans!!

**To donate, follow the link below to be lead to the Bridge To Healing website.  On the right hand side of the page you will see the Donate button.  Click there to be directed to PayPay and enter Jacob Dein as the recipient**

Click HERE to donate today!

 

 

Come play with Jacob!

We are excited to announce our first Knockerball Tournament fundraiser to help fund Jacob’s twice yearly visits to IAHP in Philadelphia.  This is certain to be an absolute blast for all to come to play!  Sign up today… we only have room for 16 teams!

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So what is Knockerball?!  Just imagine playing soccer inside a giant bubble.  Super fun, right!?  Well it gets even better!   We will also have a Bossaball quart set up, which is a giant inflated volleyball court with trampolines in the center!

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For details and to sign up, please visit our Facebook page I Am On Team Jacob.  There you will be able to buy tickets.  You can register as an individual, or as a team of up to 7 people! If you would like to support Jacob, but cannot attend, you can make a tax-deductible donation by clicking here!

We have set up this day of play to help our little boy have a fighting chance to play as well!  He is doing so well and inspires us every day!  Please join us for this incredible event and help Jacob continue his treatment at IAHP!  Remember to visit and “Like” the Facebook page, I Am On Team Jacob, to keep up on this great event and more Jacob updates!

Jacob’s Letter to Grandma

Its truly an amazing thing to go from, “your child will never see, or hear, or walk, or talk” to reading independently, enjoying mathematics and writing letters.  Believe it or not, that is what Jacob has done!!

Jacob is only 4 years old, and while he cannot yet communicate entirely using his language, he can communicate using a letter board.  With this simple device, we can ask Jacob anything we want and he has endless options for answers, simply by pointing to the letters.

A few weeks ago, Jacob read a book, A Letter to Grandma.  He was very excited so we asked if he would like to write a letter to his grandma!  He pointed to the letters Y-E-S and got started!  Here is what Jacob wrote!

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We are so impressed, everyday, by our amazing miracle.  We are forever grateful to the specialists at The Institutes for the Achievement of Human Potential for opening our eyes to the endless abilities of our incredible boy!

Jacob is doing incredibly well intellectually.  Next on our list, mobility!  Jacob works very hard everyday to get crawling and he continues to improve.  We look forward to the day we celebrate his crawling victory!

Jacob’s new role!

Almost 6 months ago, Jacob assumed his new role as BIG BROTHER!  This is a responsibility that he takes very seriously.  Jacob loves his little sister, Lily, and they are very sweet together.  He is very understanding when she cries and he is gentle when she is near.  He even lets her crawl on him.  He is a very good teacher and demonstrates perfectly how to be full of joy and determination!

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Lily also motivates Jacob!  He does better with his program when she is around and we are confident that when she is moving it will motivate Jacob as well.

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Jacob has been doing very well with his program lately.  His strength, endurance and coordination have improved and he is now able to crawl down his inclined track many more times than before.  He is also cooperating much better with his patterning.  Another exciting development is Jacob’s language.  Jacob speaks to us more and more and we are getting better at understanding what he is saying.  Just the morning he said “all done” after breakfast and last week he said “my turn Lily” when she was demanding attention.

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Jacob’s use of the letter board has also been a wonderfully helpful improvement.  It is amazing to learn what he is thinking and feeling.  It also helps to tailor his program to his preferences.  He is such a sweet boy and is now even using “please” and “thank you” when he types his answers.  What an incredible blessing we have in our sweet Jacob!

 

He Continues to Amaze Us!

I remember a time when I said I would write an update on Jacob every week.  I remember committing to our wonderful friends that I would be sure to write updates frequently after our move.  Boy have I dropped the ball.  I am so sorry!

The great news is that Jacob just continues to be absolutely amazing.  We thank God every day for giving us such an incredible gift and Jacob shows us, every day, his incredible strength, determination and pure joy!

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So, what’s new?

Jacob handled the move beautifully.  I think his favorite part of our new home is being able to play with his friends and cousins!  He just lights up when they are around and they are so wonderful to him.   We are also enjoying having so many loved ones around.

Jacob is also doing very well with is program from IAHP.  He has progressed in so many areas since his last visit to Philadelphia last March.  At our last revisit, Jacob was crawling about 2 feet on his track within 2 minutes.  He is now crawling  6 feet on the track and 1 foot on the flat floor within 2 minutes.  Go Buddy!

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He is also really loving his intellectual program.  Previously, Jacob could communicate with us using choice boards.  We would write 3 choices on a board and he could touch the one he wanted.  This was great, but limited.  We have now advanced to a letter board.  This allows our smart little boy to tell us anything he wants!  We ask Jacob a question and he points to letters to give his answer…yes, really!  Yes, he is 3!!!!

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Here are some examples…

Why didn’t you want to sleep last night?   P-L-A-Y

What do you want to do first?  S-T-R-E-T-C-H

Why aren’t you eating your dinner?  H-E-A-D H-U-R-T

Is there anything I can do to make it better? M-E-D-I-C-I-N-E

It has been just amazing to open this line of communication with our little guy and it has been SO helpful!

In other news, for the last 6 months, Jacob has been sleeping with a CPAP machine to help with his severe obstructive sleep apnea.  We have a love-hate relationship with that machine.  It is clear that it is completely necessary because his oxygen levels drop when he pushes it off his nose.  Luckily we have him on a monitor that alarms when this happens.  However, this has resulted in significantly interrupted sleep.

We recently saw an Ear, Nose and Throat specialist that looked at Jacob’s nose and throat to identify the cause of his obstruction.  He found that Jacob’s adenoids and nasal turbinate tissues have significantly reduced Jacobs airway.  Try pinching your nostrils closed, just slightly, and imagine what it must be like for Jacob to breathe all the time.

The good news is that something can be done to help him.  The bad news is that it is another surgery.  It is a very routine procedure with a minimal recovery, but it is still scary.  Please, please keep our little man in your prayers on Monday (10/5) and I really will post an update when he is all better!!

As always, thank you all for your amazing love and support and I will do my best to get better with the updates!

 

Filling in the blanks!

It has been way to long since I have updated everyone on our amazing little Jacob and for that I sincerely apologize.

Jacob has been doing incredibly well!  The best part of our surprise adventure in Philadelphia was that we got a CPAP for Jacob to wear overnight.  We learned that his breathing was very poor while he slept and this machine improves it significantly.  However, he doesn’t exactly love it.  We are looking forward to a sleep study next week that will allow for fitting for a better, more comfortable mask.  Yahoo!

Enjoying the BEST Mother's Day with my sweet boy and my mom!!
Enjoying the BEST Mother’s Day with my sweet boy and my mom!!

Jacob’s crawling has also been improving!  We learned very valuable tips from our friends at IAHP that we implemented immediately.  Before we left, Jacob was struggling to crawl 2 feet down his inclined track within 2 minutes.  Now he is successfully crawling 5 feet usually in less than one minute!  Way to go buddy!  Jacob is also really excelling on his glider.  He is crawling up to 30 laps (720 feet) daily and the best part is that he LOVES it!

We have also, just recently, invented a modified glider that provides him similar support but without the restriction of the track so he can crawl anywhere (on smooth floor) that he wants.  So far he is doing GREAT on it!

With Jacob’s improved breathing and sleeping has also come improved eating!  Jacob gained back the weight he lost from being sick and then some!  Our little guy is just amazing and fills us with such joy!

Uncle Jeff tickles!
Uncle Jeff tickles!

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In other news, Jacob recently attended his first Professional Baseball game!  We went to Phoenix to visit family and got to cheer on the Cubs and the Diamonbacks.  He had a great time!!

I hope that finally publishing this update will help me get back on track with sharing Jacob’s story.  I have so much more to share…just need to find the time.  As always, thank you all for your continued prayers and support!

What an incredible day!!

It is an understatement to say that we have had an incredible day.  The blessings just kept coming today and we are so overwhelmed!  Here is a quick snapshot in the best chronilogical order I can remember!

1.  An amazing care package!  My wonderful cousin Michael worked his magic to deliver an amazing, and much needed, care package that really lifted our spirits!!  THANK YOU, MICHAEL!!!!

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2. Bryan ordered Jimmy Johns for lunch!!  I know that may not seem like much but a break from a week long sretch of hospital food combined with a hometown favorite…JACKPOT!!!

Our amazing post PICU digs!
Our amazing post PICU digs!
One happy little boy after his first post-flu applesauce!
One happy little boy after his first post-flu applesauce!
Did we mention that it snowed while we were here?!?
Did we mention that it snowed while we were here?!?
The view into the CHOP atrium.  This place is incredible!
The view into the CHOP atrium. This place is incredible!

3. We received our confirmation numbers for our flights home!!  We have been incredibly blessed by the support we have received from our new friends at JetBlue.  When we knew that our originally scheduled flights home would not work, we emailed JetBlue and they said they would help us get home.  Today we got our confirmation and we continue to be amazed by their incredible support!  We LOVE JetBlue!!

4. Logan’s Gift is official!!  This is an incredible surprise several months in the making.  We are all too familiar with the challenges faced by families with brain injured children and we want to help.  Today, we recieved notice from the IRS that our 501C3 application has been processed and we can begin our work to help other families and raise awareness of the amazing work of IAHP so more families can benefit!!  So much more to come on this!!!

Jacob just horsing around with daddy
Jacob just horsing around with daddy

5. We are cleared for discharge!!!!  We have been waiting for approval and delivery of a CPAP machine for Jacob to wear while sleeping.  This was the last piece of the puzzle for our discharge and today it arrived.  Sorry, new friends, we’re outta here!!!!!

As always, thank you all for your amazing love and support!  We will be seeing our incredible team at IAHP this week and then we will head home!  Boy are we ready!  Its been fun, Philadelphia, but its time to go back to California!!