Elaina Rose

MMA

Elaina Rose was born April 23rd, 2017 weighing 6lbs 12oz and had a head full of beautiful brown hair and she was absolutely perfect. Everything was going great; we got discharged to go home on Day 2. Once we were home, and we weren’t even home a full hour, Elaina had a blue spell and we had to quickly call 911 and rush her by ambulance to our local children’s hospital. We were told, at this time, that Elaina had left over amniotic fluid and more than likely this episode would not happen again and a little over 24 hours we were discharged to go home. For the next 4 months, Elaina was not thriving. We had a list of problems: failure to thrive, delays, vomiting, in and out of the hospital, severe GERD/reflux, constipation issues, vocal cord paralysis, hypotonia, and the list goes on and on. I was sick of being told that no one knew why my daughter was so sick, so fragile, so weak and I wanted answers for my sweet girl. I would not settle for that answer! I pushed and pushed to get answers and finally one specialist finally did a more detailed test, an Organic Acid Screen, and we discovered Elaina had a very high amount of Methylmalonic Acid in her urine and from there the testing took off and we found out our sweet little, Elaina Rose had Methylmalonic Acidemia. My husband and I were freaked out by such a big and complex word and we felt so alone at the time and we felt clueless. At 4 months old, my daughter was so sick, and I was so worried because for 4 months doctors had let this go on in her little body. For the next 7 months, Elaina consulted and currently follows with an awesome geneticist and metabolic nutritionist and since getting the proper medicines, diet, and medical care she needs; she’s a complete different kid; she’s thriving, she’s full of life, she’s full of attitude, and she’s full of sass. Elaina receives: Hydroxocobalamin injections, Levocarnitine, and other medications for her other medical issues. Elaina is also on a dairy and soy free diet. We have undergone numerous genetic tests, but have yet to determine type, they believe she has a very very rare form of MMA. During these past 11 months, Elaina has undergone MRI’s with anesthesia, a g-tube placement, and will eventually need a port. We have more worries ahead such as an upcoming MRI of her brain to look at the grey matter and a follow-up with cardiology because Elaina now has a heart murmur after going into acidosis/crisis so many times. Elaina has also dealt with many admissions/episodes of metabolic acidosis/crisis and with each episode she goes through, I learn about resilience, strength, and hope a little more each time. Watching my sweet, sweet girl being poked and prodded, restrained, waking up from anesthesia, fighting for her life: is an absolute heartache and I wish I could take this disorder from her. But at the same time, I’ve learned how resilient my sweet, Elaina Rose is, and she is a true warrior and I know she will conquer BIG things in her lifetime. I have hope for my daughter and I believe in my daughter! She has more strength than my husband and I combined. She’s my little lioness! We have also adopted a quote as we travel among this unknown journey, “One Day at a Time, One Moment at a Time.” If I can give parents one piece of advice, it’s to say this to yourself numerous times a day! Don’t dwell on the past, don’t think about the what-if’s of the future, live and enjoy the today; today is always a gift. Rare warriors are the absolute strongest!
 
Fallon
Lumberport, WV
ftichnell@hotmail.com