Updates- Warning-This is a not so positive blog

WARNING: If you are a person who insists on positive thinking and gratitude at all times, the following blog may be hazardous to your health.

Well, I realize that I haven't updated the blog on Aaron's latest medical visits for a while. I have been consciously trying to not fixate on medical stuff and my anxiety on this blog, but really, it's just a form of lying by omission. Is that OK? I am not sure. One side of me thinks that I need to consider carefully how I frame this year, in case Aaron ever reads this, and that maybe by writing the happier side of things, I will focus more on the positive. Another part of me feels stifled all the time. I know that I should be (and am!) grateful for his amazing progress. I know that things could be so much harder. I know that no matter what, my love for Aaron is immeasurable.

But still, I am so scared so much of the time. Scared for his future. Watching his development. Scared that I am over analyzing him. Scared that I will make the wrong decision. Scared he won't be able to....(fill in the blanks yourselves, my mind creates so many possibilities) Scared Sam will resent Aaron, resent me. And I am so exhausted by the fear. But I can't always control it. I struggle to get to "So what" but I fail more often than I'd like to admit.

I have so much self doubt. Sometimes I feel like my sense of self was torn in two along with my uterus. I question every decision and wish someone else could make them for me.

I guess that brings me to the medical/developmental updates...

The most important is the recent GI visit. The specialist recommended endoscopy to look at and take biopsies of his esophagus to look for something called eosinophilic esophagitis. He wanted to do it in late January, but we thought he was starting to do a little better. We talked it over with our PCP and Allergist, both thought waiting 6 weeks or so would be fine. You know, they talk about all these rare complications, but I am a little jaded about rare complications. And in my heart, I think he probably did have this disorder before I changed my diet while pumping/started special formula, but I think now his problems are mostly psychological. But...it is still so puzzling that he doesn't get hungry. And the feeding psychologist won't see us without some medical workup. And I don't want to miss something causing him pain- so if things don't turn around by March, we have an endoscopy scheduled for the 17th. Of course in the meantime, he has had the stomach flu, a cold and an ear infection, and has stopped eating pretty much any solids.

An aside, for those of you questioning what the actual problem with Aaron's eating is. Let me describe a typical day in feeding- starting at midnight- Up at 1ish to eat, takes 4 or so ounces easily because he is half asleep, up again at 5ish, again takes 4-5 ounces, up at 7, breakfast around 830, he used to take a 1/4 of a cup of coconut yogurt and oatmeal mix but now he will only eat about 5 blueberries and 10 cheerios. He also takes around 2 oz of formula in his cup. I spend 15 minutes trying to encourage the coconut yogurt (he can't eat dairy or soy and used to like the coconut yogurt) but usually throw most of it away. It is only available at whole foods at $2 a pop. Then a sleepy 3 ounces or so. Nap, play. Lunch around 1230 or 1. What I have tried, my own ideas and others includes: Avocado, with and without salsa (OT says try spicy foods) Pea soup with added food processed meats, homemade chicken noodle soup (all the store bought ones have egg/milk), Lunch meat, hot dogs, Chicken puree, meatballs with ketchup, homemade mashed potatoes, sweet potatoes, summer squash, butternut squash, carrots with brown sugar and butter, acorn squash, spicy taco meet, tater tots,green beans, broccoli, french fries, sweet potato fries, homemade banana muffins, applebutter on toast, food processed and whole chicken nuggets, pot/roast or stew in the food processor, rice, sorbet. All of the prior things of course have extra margarine and or Canola oil or Duocal carefully added. What Aaron actually routinely eats is- crackers or bread, approximately 1 cracker or 1/4 piece of bread, and 10-15 bites of pea soup, 5-10 blueberries or one chunck of banana. What Aaron has eaten in the last 2 weeks for lunch is two nibbles of cracker or bread. Another sleepy 3 ounces before afternoon nap. Our afternoon snack is sometimes more sucessful, he often has another 2-3 ounces of formula and some crackers or animal crackers. One day he ate a whole cup of peaches. It was so exciting. He has never touched them again. Then dinner, repeat lunch. At every meal he conveniently models my latest food discoveries in his hair and all over his body! And, surely because I once mentioned a blueberry facial I had with my dear friend, he often treats me to fistfuls or spoonfuls of his food thrown at my face. An outside observer might think that the fact my child is covered in food products might mean he actually eats food-but they would be WRONG! Dinner is much the same. Then 4 ounces at bedtime. Lather, rinse, repeat. Get ready to give him the bulk of his calories at night. It is so wrong, the antithesis of good pediatrics, but I fear he just won't get any calories if I don't feed him at night. My good friend recently bemoaned the fact that her not yet 3 month old is not sleeping through the night. Yes, that and she is a size 4---good thing I love her so dearly!

So, not surprisingly, noting the above, Aaron is not gaining weight. At last check a couple of weeks ago he was now at the 5%ile for wt. His height has been better, previously at the 50%-75%,now at the 25th. However, we have continued to steadily fall. IF he can just stabilize and start to grow at a new centile, even if it is the 5th or 10th, that would be great. The nutritionist commented that he may just be "genetically inclined to be slender" Hardy-har.

We have upcoming wt checks and allergist visits. Our speech therapist visited and we are still working on signing. He tests within the normal range on her scales for expressive and receptive language (different from the results at the developmental doc). My view on that is that every day he seems to understand more and say more. I think if he weren't being so closely scrutinized, there probably wouldn't be any concern. He is doing so well with gross motor skills (Beaming mom) that our Angel PT won't come until after he turns 1.

So, that's the latest. I am at a loss for how to help him with eating, and just hope it will slowly turn around. Fingers crossed. Promise to be more brief and more upbeat next time...until then, good night.