What a beautiful story of hope from Little Elijah! Nominations close tomorrow at noon EST. I nominate my son, Elijah, to be the 2014 Child of Hope. Like so many other children who have been nominated, Eli has endured more surgeries, hospitalizations, life-threatening events, lines, tubes, drains, etc… then most people will ever experience in two life-times. That being said, he has a personality and smile that will melt your heart the first time you meet him. He is a fighter that has had to relearn milestones every time he’s had a surgery or serious illness. So I just ask for you to please read our son Elijah’s journey. I apologize for the length, but do not know how to cut it any shorter and explain why I feel my son would be an amazing Child of Hope for 2014. Elijah was born with four congenital heart defects, a kidney defect, and a gastrointestinal anomaly. He was 15 days old when he underwent his first open heart surgery. Eleven hours after surgery was completed, his heart went into a potentially lethal arrhythmia. This resulted in Elijah losing his blood pressure and pulses for about 40 seconds. It took days for him to become stable and an additional 6 weeks of recovery in the PICU with multiple complications. We were told we would just have to wait and see what the long-term complications would be. Elijah was 8 weeks old when we were able bring him home for the first time. We thought by this point that Elijah had been through the worst of it, but we were wrong. Just shy of 5 months old, I took Elijah to the cardiologist for a “routine” follow-up from his 1st open heart. We were told Elijah would need a second emergency open heart surgery to replace valves in his heart that had become damaged. He was critical. This second surgery put him into complete heart block. Eli relied on an external pacemaker to keep his heart beating properly until his permanent pacemaker was placed 11 days later. For the next 3 years that have followed, Elijah has endured numerous other major surgeries including a Nissen Fundopliaton (due to severe reflux), a reconstructive surgery to fix his genitourinary/ intestinal anomalies, 2 pacemaker surgeries, multiple scopes, 3 sets of ear tubes, and the list continues to grow. Every time we think we are in the clear, it seems like Elijah has another hurdle that he has to cross. He was diagnosed this last year with hypotonic Cerebral Palsy and we already know Eli will continue to need multiple open heart surgeries in the future as he grows older. Elijah is currently being fed almost 100% via G-tube. This is due to many reasons including cerebral palsy, and a strong oral aversion (because of his history of severe reflux and being intubated multiple times). Last Sept (2013), I switched Elijah to a 100% blenderized diet and discontinued the use of a commercial formula. Elijah was diagnosed in July 2012 with Dumping Syndrome, which was a complication of the Nissen Fundoplication surgery that he had in March 2012. From March 2012 to Sept 2013 (18 months), Elijah’s blood sugars would drop to dangerously low levels. Initially his blood sugar levels would spike to 200s after a feed had completed then would drastically fall 2 hours after feeds were completed to the 20s and 30s. After much trial and error with the volume, rate, and how frequent we gave the commercial formula, Elijah’s blood sugar levels would still fall to 40s and 50s 2 hours after his feeds would complete. Elijah was also trialed on 3 different medications during this time-frame, none of which made much of a difference in maintaining Elijah’s blood glucose levels within normal limits. Additionally, two days after Elijah was started on one of these medications in March 2013, he experienced a seizure that lasted over one hour when his blood sugar level dropped to 27. It was determined that this new med lowered his seizure threshold, so when his blood sugar dropped, it triggered a seizure. Elijah spent one week in the PICU because of this incident. During his stay in the PICU, his blood glucose dropped again to a critical 15. In September 2013 I decided to trial Elijah on a blenderized diet with real food. Making the switch from commercial formula to a Blenderized diet with REAL food has been literally life-changing for Elijah. Almost immediately, Elijah’s blood sugar levels started to stabilize. And over the last year, it does not matter if I test him when he is fasting, during a feed, immediately after a feed, or 2 hours after a feed, his blood sugar levels are always within normal limits. Additionally, within 2-3 weeks of the transition to blenderized real food diet, his hair started coming in thicker, his strength improved greatly, cognitive skills improved, and he had a growth spurt in both height and head circumference. He even had the strength to start walking just shy of his 3rd birthday. Shortly after I made the switch to using a blenderized diet, I discovered Liquid Hope. I cannot begin to tell you how much this has changed not only Elijah’s life, but our entire family’s life. To know he is getting the exact nutrients he needs, in the right amount and volume, has greatly helped with him gaining proper weight. He now has “normal” bowel movements and has not once been hospitalized in the last year. We went form 17 hospitalizations in the first 2 years of Elijah’s life, which added up to 21 weeks in the hospital… to NOT ONE hospitalization in the last year. What a concept… real food in a G-tube… Because of Liquid Hope, I can make the 1 ½ hour one-way drive to Elijah’s 12 specialists. We can attend OT, PT, and Speech therapy, without having to worry how I am going to feed Elijah while we are out. We can now actually enjoy family vacations without carrying a blender everywhere we go! The problem we are facing now is having Liquid Hope covered by insurance. Our new primary insurance does not provide nutritional support like our previous insurance did and Michigan’s Children’s Special Health Care Insurance states that they will only cover the cheapest medical solution, which is not compatible with Elijah’s medical needs. I am still fighting them on this. From the beginning, Ive had to pay out of pocket for Liquid Hope, and it is not always feasible to do so. So here is where I am asking for everyone’s help! Please help our family support Elijah to be the 2014 Child of Hope! Thank-you for taking the time to read our story!
Posted on: Tue, 30 Sep 2014 23:22:06 +0000
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