Our Kids /
Eli,
Glutaric Acidemia, Type 1, Age 3
Eli’s condition was diagnosed with the newborn screenings. Grandpa Mike, (me), was there at his birth and I even created a storybook in real time of the event. Eli seemed to be a perfectly normal baby until he had a crisis at 5 months old, on New Years Eve! His mom, my daughter, was a single parent and they lived with Grandma. Caring for Eli became too overwhelming for them as I believe they did not understand the severity of GA1. Eli was diagnosed as ‘failure to thrive” and eventually went into Foster Care at two years old. I had not been able to see Eli for several months because the relationship between my daughter and I had been strained. In July of 2023, I decided to go over without invitation to their home to see Eli. When I arrived, they were just leaving for a doctor’s appointment. Having been to almost all of Eli’s other doctor visits, I decided to go to that one too. The doctor said they wanted to see Eli back in one week. So, knowing that, I showed up for that appointment also. However, Eli was not there. The receptionist checked the computer to see if something had changed and said that Eli had been admitted to the hospital. I went to the hospital wing of the medical complex to see if I could get in to see Eli. The nurses would not let me in but did call the social worker in charge of Eli’s case. I spoke to her and found out that Eli had been removed from his home, admitted to the hospital for nutritional needs, and was going to be placed in foster care! At this point, Eli was just a few days over 2 years old and only weighed 22lbs. His weight had plateaued for many months and needed immediate intervention to prevent further potential complications. In talking with the social worker, she asked me if I could get to the courthouse in an hour because the first hearing regarding the placing of Eli in state custody was to begin. And of course I would be there! God works in mysterious ways. I firmly believe God directed me and all the circumstances that happened that day. I established with the courts that I was next of kin, grandpa, and that I would do everything possible to adopt and take care of my grandson. And that day, Aug 01, started out me just going to my grandson’s doctor appointment. Well, a new journey in my life was about to begin that I am forever grateful for in allowing him to live his life and realize potentials he may never had had before. This little guy is worth it all!
Eli came to live with us on September 15, 2023. He spent just over a month in foster care, but I was there several times a week learning how to care for him. When Eli finally did get here, Sandra and I were familiar with the GTube and feeding pump because of those visits.
It was a Friday when Eli arrived, and by Monday he was back in the hospital due to a virus. He was a sick little boy. We spent a week with him in the hospital. The nurses were great, they showed us more about caring for him. We had official GTube training! We learned to be his advocates during his hospital stay. Since then, he has been on track and gaining weight; growing fast! In no time at all it seemed, Eli shot up to 36 lbs. We started out with weekly appointments at the genetics clinic and are now down to every 4 or 5 months. Eli has been learning so much in the past year. Within the last two weeks, he received an I pad like assistive speech device and is working hard to learn that. He is so smart and outwits us a lot! He is all boy! He received a wheelchair in March and had it mastered in about a week. He likes to show off his antics like spinning in circles and trying to pop wheelies! He has a newfound freedom! And he loves it.
When Eli was 5 months old, he suffered a metabolic crisis. The MRI showed the basal ganglia was affected. Altogether he has had seven hospital stays. His speech is impaired, and he is diagnosed as developmentally delayed. He has good use of his arms and hands. His legs and feet are his big challenge. He is so strong and has a will that does not stop. He will work and work to accomplish any task. He is very strong willed and usually always wants to wheel himself. When he tries to say something, and we don’t understand, he patiently repeats it numerous times. We eventually understand and are getting better at communicating all the time. About one month ago, he said a complete sentence. While changing his diaper at 3am, he said “I want to turn the light off!” It was so very exciting. Eli knows several things in sign language. Sandra was in the kitchen with him one day with her back to him. He coughed and Sandra said, “Eli you sound like you need a drink.” She handed him his cup and he took a drink. After that, he fakes a cough any time he wants a drink of water. When asking for a car or truck he sticks his tongue out. In the Disney movie Cars, Lighting McQueen sticks his tongue out to tie in the big race. Thus, Eli associates cars with sticking his tongue out! There are other little communications he has developed over time that will not be found in the ASL handbook, but it works for him. Eli understands everything we say so we can only imagine how frustrating it must be for him to know what he wants to say but not be able to express it. We do have to watch what we say in front of him, especially if we know it is not something he is going to want to do. He will react immediately according to his desire to either do it or not.
Eli just turned 3 years old this summer and now is attending preschool. He struggled at first since it was his first experience being away from home. The first week was rough but now he waves and tells us “Bye” when we drop him off. He rides the big yellow bus home and is just so very happy to see Sandra and I when he gets home. On day three he brought home an accident report. He had been on the playground that has a bit of a slope, a thing he loves, and he puts his hands in the air, and lets the wheelchair go! He hit the fence and cut his lip. As we said before, he is all boy! He loves going fast. He is making friends at school and learning so many new things. He waves to everyone smiling and leads his 5 or 6 classmates in line back to their homeroom. He seems to excel at the tasks they give him. We do worry about the exposure to colds and the flu. The staff is aware of his fragile health and keeps us posted on even the slightest sniffle going around. Preschool will be very good for Eli.
It has been one year since Eli came to live with us. Caring for him is hard work but seeing how much he has grown is very rewarding. Our most recent doctor’s visit had them comparing where he was a year ago and where he is now. We are with him every day and you lose track of where he was when he amazes you every day. When we first got him, he was barely rolling over or sitting up on his own. Now he will take off in an army low crawl on the floor. And he will roll and roll away really fast when we play with him. When he is in his wheelchair, look out! He will ram you! We call him the bulldozer. He has such a contagious laugh and loves to play “sneaky sneak” with us and say “boo”! We wouldn’t want to ever be without him! Eli is just so much fun. And it doesn’t stop there. Eli brightens up a room. His smile is contagious, and his laugh brings others to laughing. People tell us what a wonderful thing we have done, but the truth is that Eli gives happiness to everyone he meets and helps in his own way in making this a better world for all!
This past summer has been very exciting for our family. Eli has been learning and experiencing new things like swimming and visiting exciting places like Mt Rushmore, but the highlight of the year was going to Pittsburgh for Family Forum’s conference with Organic Acidemia Association / Fatty Oxidation Disorders Family Support Group this past June. We met families from all over the USA whose little kiddos are living with all sorts of metabolic disorders. We exchanged names and ideas and things we do to help our little warriors. We also got to speak personally with the doctors and researchers who work tirelessly to bring hope to all of us. It was all very reassuring and quelled our concerns and fears that our Eli was out here fighting this with not a lot of support. Yes, it’s good that we get great support from our own doctors and metabolic staff, however, it’s also nice knowing we can reach out to others who are “living” the same struggles. We stepped into this fight for Eli about a year ago. Discovering this conference was one more thing we can do to better understand our child’s struggles and better prepare ourselves for the future. The information received and the contacts we made at this conference were invaluable in our journey with Eli.
Mike and Sandy
wagner1559@pm.me
Oskaloosa, KS