Failure to Thrive, and a whole lot more.

Baltimore Aquarium September 2007


I have SO MUCH to write about... I'm just going to re-cap our summer, and then get into Arie's issues!

What a summer. I have been running around like a headless chicken ALL SUMMER LONG! I'm glad it's finally over, and SUPER glad that school has started. We had a summer filled with vacations, swim lessons, cheerleading, summer camps, and of course a nice long visit to Grandma's house! It has been one thing after another this summer, so I apologize to all of my friends who I haven't kept in contact with (like YOU Kelley!!)... I hardly have time to pee.

Anyway, Elaine has started Kindergarten and is doing well. The first few days she had some trouble "listening" and was disciplined, but I think she gets it now. I hope anyway. She has some new friends, and she is fitting right in. She is cheering for the county now. She LOVES it, and she always gets to be the "top" for the stunts, so she thinks that's cool. The only bad side effect of her cheering is that she walks around all day saying cheers and chants to herself. She looks a little psychotic, but then, don't we all? She (and Micah) took a month of swim lessons. We started Elaine off in Pre-school II, and by the end of the month they had moved her up 4 levels to Level 4. She swims like a fish, she can jump off the diving board, she can retrieve objects off of the bottom of the deep end... she is amazing to watch!

Micah started pre-school today. It's just right across the street, so he knows everyone in his class really well. As expected, he did fine. He's had a pretty uneventful summer. He went to the ER a couple nights ago with a high fever (104) and LOTS of vomiting, but he's doing just fine now. He didn't do quite as well as Elaine in the pool. In fact, he cried A LOT and acted like he was dying... but we persisted anyway! He's such a big boy now, and he is FINALLY fighting back with Elaine. We always told her that "one day her brother would fight back"... well, the time has come! Unfortunately, his "fighting back" doesn't end with Elaine, and he has turned into a bit of a bully. Oops.

Onto Arie. Well... today was the "big appointment" with the pediatric gastroenterologist. We have been waiting for this for MONTHS. Arie is hardly gaining weight, and now he is not really growing much taller (he's 16 months old now and his W= 18 lbs, H= 29 in). We feel like we're not getting anywhere with the feeding clinic at Children's... they have sort of dropped the ball on Arie and he's continuing to fall off the charts.

Our doctor today was amazing. I started by explaining Arie's history (his in utero history as well as his medical history in Korea) and went all the way up to current time. I told him how we've been instructed to change formula a gazillion times, how we are no longer giving him dairy and soy (just IN CASE he's intolerant to them... we know he's not allergic), and how his stool is so acidic that is burns right through his skin. I also explained that I was really unhappy that he hasn't been tested for much. Yeah, Children's did some lab work and an upper GI/Barium swallow, but it didn't really tell us much. Why haven't they continued to look for a cause to Arie's lack of weight gain and his "Failure to Thrive" (which, by the way, is his OFFICIAL diagnosis).

So, the doctor told me the following (in so many words): He believes that Arie's eating issues ARE IN FACT behavioral (no surprise to us), and not technically "medical". He thinks that all of the tests we are going to do over the next two weeks will be negative... but we should do them anyway to rule out things such as Celiac Disease, Cystic Fibrosis and Crones Disease. Well, you ask, why does Arie have a behavioral eating disorder? Possibly because Arie was exposed to a significant amount of alcohol in utero. He doesn't have Fetal Alcohol Syndrome, but he does have Fetal Alcohol Effects. The thing with FAE is that there is no way to say FOR SURE that the exposure to alcohol is the culprit of his Failure to Thrive, but most likely (in Arie's case anyway) it is. So over the next two weeks Arie will have more blood work drawn, have an endoscopy (tube with a camera down the throat), and a sweat test (to rule out Cystic Fibrosis).

Because of Arie's eating problems, he is becoming increasingly malnourished. At one point, a few months back, he was "marginally" meeting his caloric needs, but now he no longer is. Even with all of the supplementing with Duocal and calorie boosting with his formula, he's not taking in enough. In fact, because of all of the carbs he's getting from the Duocal, the doctor is fairly confident that THAT is the reason for the acidic stool... carbs turn into sugar which then decrease stool pH. So, after all of the tests, we will be switching him to a different formula (perhaps Pediasure?). Currently Arie is 16 months old and still on Alimentum... an infant formula. Back to the malnourishment. Arie has ALWAYS had trouble gaining weigh, but he was still growing in height. That is a good sign. Well now his height is starting to taper off which means that he is moving further into a stage of malnourishment. So, in two weeks, Arie will be having a feeding tube placed in his stomach. This will allow us to insure that he is getting proper nutrition, and at the same time we can work with the therapists to get him to eat better/more. He would have the tube placed sooner (the Dr. suggested tonight!) but I am having my tonsils removed on Friday, and that's supposed to be a pretty painful recovery. Ugh.

Anyway, I know it sounds awful, but I am SO RELIEVED that he will be getting a feeding tube. It has been so hard to watch him melt away. Although some meals go great, many are a struggle filled with tears from both of us. I am constantly worrying about him and his health. I am at my wits end, and I just can't do it anymore. It has been a rough year trying to get him to eat. Unless you've lived it, you have NO IDEA how frustrating it is. Now that his height is slowing down (too much) I know this is the right decision. The doctor we are going to is one of the best in our area, and I just feel like a big weight has been lifted off of my shoulders.

He will be in the hospital for a couple of nights, and hopefully all will go well. The tube will stay in for a least a few months, possibly a couple of years... who knows. Basically is is inserted sort of near his belly button (a few inches over) and we will be injecting some form of liquid nutrition directly into his stomach. HE will also be able to eat normally too.

I'll be sure to post when I have a surgery date! Thanks for all of the thoughts and prayers! I'm so glad to finally see a light at the end of the tunnel.