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, 2200 miles away, to work and we began to count each day as a prize.
After nearly 2 weeks, labor began. The doctors did all they could to prevent it, but they just couldn't hold it off any longer. Since my 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, my sweet little Logan was born. The Neonatologist told us all about the risks and challenges, 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.
Once both boys made it through their first 24 hours, we thought we were in the clear. We settled into our routine and spent every minute with them that we could. On the morning of August 11, we got a call that Logan was struggling. We rushed to the hospital and made it just in time to hold our sweet angel for the first and last time.
The next day, Jacob's fight began. With his 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 were all stretched beyond our limits and taught lessons we never could've imagined. 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!
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 also 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.
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.
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, Jacob is much healthier, can read independently, can see and hear 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.
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. 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.
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
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
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.
We know that this "wish list" for Jacob will require substantial fundraising. We believe in our little boy and we will stop at nothing to help him reach his goal of running! After cutting spending, depleting our savings and putting every penny towards Jacob's therapies, we have exhausted our financial resources. If you are able, please know that any support you can offer will help us move mountains!
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! Thank you all and Go Team Jacob!!
To learn more about Jacob's amazing journey, please visit Www.defyingthediagnosis.com
- Kate Sweeney
- Jordana Rodeheaver
- Michael Nelson
- Charlie Harris
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