Every month, one medically complex child is selected to receive a financial gift from the Legendairy Littles program. During May, Legendairy Milk is pleased to feature Seven.
Since birth, Seven has had issues with his feeds. Everything that he would attempt to drink would come out of his nose and cause issues. He was in the NICU for the first two months, and during that time had twenty (20) specialists helping provide the care that was needed. At first, Seven’s doctors could not determine why he was not able to gain weight and what was causing the feeding issues, so they placed an NG tube. A Nasogastric (NG) tube is a soft tube that is placed into the nose and then goes down the throat into the stomach. This medical device is often placed when a child cannot eat or drink enough to stay healthy.
Unfortunately, even this option did not allow Seven to tolerate his feeds or gain weight. It was determined that the flap that holds food in a stomach stayed open. This resulted in aspirations in his lungs. Because of this, doctors decided to place a G-Tube. A Gastrostomy Tube (G-Tube) is a tube that is surgically inserted directly into the belly so that nutrition can be delivered directly to the stomach.
This helped with Seven’s feeding issues, however he was still struggling from severe apnea. Seven would experience up to 78 moments of apnea every hour when he sleeps. This was due to severe Laryngomalacia. Laryngomalacia is when the tissue above the vocal cords becomes soft. This can cause noisy breathing but in severe causes can cause tissue to cover the open airway that will result in difficulty breathing. Seven had his most recent surgery in March to remove his tonsils and adenoids. Additionally, the surgeon removed some of the tissue from his larynx, near the voice box to help open up his airways a little more.
Currently, Seven is under the care of a Pulmonologist, ENT, Gastrointestinal, Neurologist, physical therapist, speech therapist, and his primary care physician. Seven’s care team is trying to get him an appointment with a Geneticist to pursue genetic testing but this has been challenging due to insurance and geography complications. Because of his breathing difficulties, traveling in a car within his current city is difficult as Seven requires assistance if he begins to cry.
Seven will celebrate his first birthday in July. He enjoys watching Cocomelon while playing with the toys on his walker. His Wubbanub Binky is his best friend and doesn’t do anything without it. Seven is learning how to stand and is constantly pulling himself up. He bounces and dancing in his door swing to Baby Einstein and loves to stay active.
His family will use the Legendairy Littles financial donation to help purchase the proper storage for Seven’s medical equipment as well as onesies that can help make sure he isn’t able to mess with his feeding tube.