It’s been a long time since I have updated this blog on the conditions of my little man – Asher was diagnosed with ‘Failure to Thrive’ (FTT) and multiple food allergies (which caused stubborn eczema) when he was six months old.
Little man is two weeks away from turning TWO. It has been quite a journey for us with this sweet boy.
Little Asher has not grown much over the last six months. He is growing but at a very slow rate, and his height percentile is still at the very bottom of the WHO chart. His ultra slow weight gain is still placing him below the charts – running on a negative score the last 14 months. His Z score and his baby BMI do not meet the doctors’ expectations at all.
With his recent hospitalization in the summer and the ongoing multiple specialists’ visits, we were pushed for more testings and alternative options. Although I am rather convinced that little man is taking after his daddy’s petite size, the doctors were uncomfortable with his medical situation and they persuaded us that there might be something wrong. Talk about a momma’s distressed heart upon hearing those words! Overwhelmed by the list of his forbidden food, daily medications, and frequent doctor appointments, I often allowed myself to drown in frustration than to keep singing praises.
So two days ago, we were called in to the gastroenterologist’s office two months earlier than scheduled, because the pediatrician has contacted him about his hospitalization and wondered if little man should be treated for EOE. So they suspected Asher having some esophagus inflammatory disease caused by food allergies last year but he showed some improvement on his weight, hence, the EOE discussion slipped away. Furthermore, EOE can only be diagnosed if Asher gets an endoscopy. And now, they are pushing for this again.
I can’t even handle this. Although it sounds like it might be just an endoscopy, but, to visualize my son being put on the table, under general anesthesia, and with tubes running inside his body – I am so going to freak out.
Each time I drove to the children’s hospital for his check up, my hands were always sweaty cold and I feared for the worst outcomes.
You see, to me, little man is fine. He is tiny but he is mighty. He is small but he is smart. He is short, but he is cheeky and most importantly, he is very happy. He is definitely an active boy. My family and my closest friends can vouch for this. He is easily content and I have no trouble putting him to bed at 7pm every night! Even if it takes him longer to fall asleep on some nights, he will not fuss and he will stay quiet in his crib until he dozes off.
But when the doctors kept telling me that his situation is not normal, it crushes my heart.
Okay, I admit that he is not a good eater. In his defense, he had so many allergies right from the start. His food palette is just limited and it has been always challenging to get him to eat bigger portions. I still remembered those days of sitting at the dining table for 2 hours with an iPad enticing him to eat when he was about a year old. And then, we were so glad to get past that stage and not relying on the screen anymore.
So, at this recent 3-hour long gastroenterologist visit, we met up with a dietician as well. The dietician came up with a plan that we should allow little man to graze all day long – as long as they are high carbs, high fat, and high protein. If little man can pound on more weight before this Christmas, the gastroenterologist has agreed not to push us about EOE diagnosis. I like this familiar plan. However, many questions flooded into my marathoning mind as the dietician explained to me how severely underweight Asher is and how many calories are needed to beef him up.
Will Asher cooperate with us? Should I go back to feeding him with an iPad in front of him? What else should I cook? Will he get a heartburn if we keep stuffing food down? So, am I going to think about feeding him every hour? Should I keep a food log to keep track of how many calories consumed?
She quickly interrupted my thoughts with little man’s current stats – “Asher weighs only at 19lbs 12 oz which is 8.96kg and that is equivalent to a 50th percentile of a 15 month old boy. He has zero fat around his arms. He has only gained 2.9grams a day since the last visit. You need to step up your game and feed at least 1,100 calories.”
Did I do anything wrong? I held my head in shame processing those information. I felt like a failure.
I am running out of steam, y’all. I am frustrated at myself for fearing an endoscopy and the food battles with my son. And I have more questions like “What if he is just plain small? Will the doctors leave him alone? Will the doctors believe me that he is fine?”
As insecure as I am, the Lord knows that this is a constant battle in my mind. I have to constantly remind myself to focus on the excellent things like how he outgrew the allergies of garlic, ginger, soy, apples, and blueberries. I have to focus on things which are worthy to be praised such as his brilliance in counting 1 to 10 in both Chinese and English. I had to remind myself that Asher was tested negative for cystic fibrosis. I don’t like to see the negative side of the coin but it haunts me. It’s hard y’all!
I get it. I really do. I know I should be filling every part of myself with His Word and His faithfulness. I am leaning on His grace each day to carry me through especially at mealtimes — oh wait, it is an hourly ordeal now to get him to eat. And I could get prettty perturbed fighting him to eat.
As much as I am whining and complaining about this, I simply need to switch my gear to proclaiming God’s faithfulness and His promises. I am not going to lose hope. I know it’s not the doctors’ fault. I know they are just doing their best to prevent anything major.
My biggest prayer is that Asher will be free from all these doctors’ visits and he will walk in perfect health by His grace.
My family will keep praying. Will you join us too?