Jesse's Journey

Jesse is an amazing little guy who just celebrated his 7th Birthday. Jesse was born at only 29 weeks, (11 weeks premature), on February 12, 2007. He spent the first 9 weeks of his life in the nicu at Sinai hospital hooked up to all kinds of medical devices to make him strong enough to be ready for this world. Jesse has been in therapy basically his whole life for many different issues. He started therapy in May of 2007. He has been through speech therapy, occupational therapy, physical therapy,(including swimming lessons), and through feeding therapy. Jesse was diagnosed with Cerebral Palsy in July of 2008. In August of 2008 he was fitted for his first set of braces to help him learn to stand and walk. Jesse first sat up on his own when he was 14 months old. He then learned to crawl at 20 months. Then he finally learned to walk when he was 3 years old and said his first words when he was 2 1/2-3 years old. At this point, Jesse's biggest problem is that he has never ate solid foods. To this day, there are only 8 different kinds of baby foods that he will eat. He typically eats 6-8 containers for each meal 3 meal times a day for breakfast, lunch and dinner. He has been eating these same exact foods going on 4 years now. A lot of times, it is a huge challenge to find the exact baby foods that he will eat at the market and his eating habits are very expensive! Jesse doesn't usually drink anything. Occasionally he will take a few sips of water, but it is an ongoing everyday struggle. Jesse attended a feeding program at Mount Washington hospital from March-April of 2011 and it completely failed, the therapists believe he may have been a little too young for their methods to work with him. Also in the summer of 2011, he was diagnosed with Sensory Processing Disorder. In February of 2012, Jesse was diagnosed with Petit Mal Seizures and has to take medicine 2 times a day for them along with vitamin d for his vitamin deficiency, due to his eating habits. He also has to have Botox injections in his legs at least every 6 months to keep the muscles in his legs from tightening up too much from the CP. When he has the injections, they give him 6-8 at a time which is like pure torture to him. He wears braces that support his feet and ankles everyday. Jesse is very intelligent but is really struggling in school due to refusing to do his work. Here lately he has been having a lot of anger issues due to his frustrations of not being as fast and quite the same as the other children and he is being overstimulated due to the Sensory a Processing Disorder. His school system is not approving him to have a one on one aid at this point, which would really benefit him. He has trouble writing for any length of time and cutting and gluing things because of the CP causing so much tightness in his muscles. Jesse is really one of the sweetest, most lovable kids that you will ever meet. If you meet Jesse, you immediately love him. He loves and hugs everyone he meets. Jesse has numerous different doctors who follow all of his special care needs. Along with his pediatrician, he goes to a pediatric neurologist, an orthopedic surgeon, a physiatrist who follows his CP, a nutritionist, and feeding specialists. 

Jesse is going to be going back to the feeding program at Mount Washington to try again to transition him into eating solid foods. If this program fails again, Jesse will eventually end up having to get a feeding tube so he can receive the nutrients his body needs. From November to February, Jesse actually lost 1/2 lb which for him is a lot. His growth at this point is not sufficient with the amount of calories he recieves. 

Jesse starts the feeding program on March 25th and will go for at least 6 weeks from 9-5, Monday-Friday. Jesse's mom, Amber, will have to take him and drop him off in the mornings and pick him up in the evenings. Mt. Washington is about 30 miles from their home, but it takes at least an hour to get there, due to the heavy traffic in that area. Getting him there and home will be about 120 miles per day and about 4 hours of travel time. She cannot stay with him all day in therapy because it's not allowed and also she has 2 other children, 1 not in school yet, to take care of. Amber is a wonderful mother who goes way above and beyond for her children. Getting Jesse to and from Mt. Washington is going to be very difficult financially for their family. Along with the gas, they will also have to pay for child care for her other 2 children. Amber is a stay at home mom, so adding child care and the gas required to get Jesse the help needs is going to be a major financial burden. Jesse's dad, JD, works full time on daylight shift to provide for their family. JD is a wonderful dad as well. Jesse also has other appointments coming up, such as his Botox injections scheduled in mid March. Jesse is also going to undergo an Autisim evaluation scheduled on April 30th at Mt. Washington Hospital. While Jesse is in the feeding program, he will have a team of doctors including a Psysiatrist, Feeding Specialists and Nutritionists all working together to create a plan to get Jesse on the right track of eating some solid foods, and getting him to drink more. 

Please help this family ease some of their financial burdens by making a donation. They truly deserve it and I know that they will give back in the future when someone else is in need. 

Also, please pray for this family to get some answers as to why Jesse struggles with his eating habits so badly, and for safe travels for them.

Thank you, and May God Bless you!