Joel Whitmire McClain
Born 07/06/2007
Written by Brea McClain

The summer of 2007 was a long, hot one--I was expecting our fifth baby and he was taking his time coming into the world! My husband, Kevin and I had an 8 year-old son, 6 year-old son, 4 year-old daughter, and an almost 3 year-old son eagerly awaiting a new sibling. Two weeks past my due date, my doctors suggested inducing. They were worried because I had previously had two babies well over nine pounds. When Joel finally arrived on 7/06/07, he was only 7 pounds and 7 ounces. That fact gave me pause.

Joel

When he didn't get a perfect 10 on his Apgar, I was really worried. All my previous babies had gotten at least a nine. When they handed him to me and I saw his inverted nipples, my heart sank. My nephew has CDG and I knew the signs. Joel was way too pale for my liking and he had incredibly long fingers and toes. I didn't say anything to anyone that day. He was a great nurser and very calm, but after all my visitors left and I was alone with my baby, I began to panic. When the hospital pediatrician came in for a routine check, I voiced my concerns. She promised to do some research and get back to me. When she came back with her supervisor, I knew that my concerns were no longer just paranoia. She referred us to a geneticist and scheduled an emergency visit for two weeks later.

Joel

Joel went home with us the next day and was an awesome eater and sleeper. He was loved on by his siblings and grandparents. However, he was losing weight even with all the eating he was doing. His pediatrician started mentioning Failure to Thrive. Ugh. I filled her in on my nephew and his diagnosis. Our appointment with the geneticist and genetic counselor confirmed our fears and she ordered a DNA test to make certain that we were dealing with type 1-a. Two weeks later we got the results back and because Joel was still not up to birth weight again, he was admitted to the hospital for a whole series of tests and to establish a feeding plan. He was found to have a pericardial effusion, but no other major problems. It was good to get baselines for all the tests that would have to be repeated frequently.

Happy Birthday Joel!

We decided to supplement pumped breastmilk with powdered Pregestimil to make a 27 calorie/ounce power drink for Joel. It worked well enough that we were released after three days. We continued this, eventually adding in some rice cereal and Beneprotein as well, until his first birthday. He measured in at a whopping 12 pounds 6 ounces and 25 1/2 inches then. We have since switched to Peptamen, Jr. He enjoys this and it certainly is quicker than pumping.

His pericardial effusion is now gone and he is very healthy. We are currently using atropine drops to attempt to strengthen his lazy eye in preparation for surgery next year, but that is the only medication he gets. His weight gain is very slow, but he is doing relatively well developmentally. Joel has wonderful play, physical and occupational therapists who are helping him learn to sit up and to eat solids. We are very pleased with his progress. Now if he would just gain some more weight....

Joel Loves to Snuggle

He loves to be snuggled by his brothers and sisters and is never lacking for stimulation. They are all little therapists-in-training and are his biggest cheerleaders. Everyone who meets him loves him and in his short life he has taught us so much about not taking anything for granted and enjoying each moment.

eff: october 2008