He has such a fun time there, he now comes home completely exhausted and usually takes two naps on school days (it's only twice a week).
We dressed you up as Krishna for a costume contest at Janmashtami. He hated the jewelry all over him, but he couldn't wait to get on the stage. He totally cried when he had to get off and kept trying to climb back on.
Even though he loved meeting Mickey Mouse, he was totally terrified of the talking Yoda doll we bought from Target. Is it bad that we find it so cute we had to film it?
We have been trying a lot of different things to help him gain weight too. He had a GI biopsy, which was basically like a mini-surgery for which he behaved like a champ. The surgeon carried him to the OR, luckily he is a very sweet doctor. We found out a little more about why he isn't gaining weight. They found eosinophilic esophagitis, which explains a lot about his reflux and constant throwing up.
We took him off dairy and pediasure. The doctors told us over and over that I should stop breastfeeding. A few months ago, we were getting by with yogurt pouches for his calories but he totally quit taking those and we switched back to pediasure. He had a tough time with it while on the NG tube, but he seemed alright with it via bottle. He was throwing up but less.
When we took him off of pediasure, his vomiting almost completely disappeared. He started taking elecare, which is supposed to help EoE kids. A friend told me that it contained aspartame, so we switched him to Neocate. It comes in more flavors too, which is good.
We had been using duocal as a calorie booster, but these days we have been using nesquick powder instead. It turns out it is dairy free, has the same calories, better flavor and a little more vitamins in it.
Lately we have also been adding a little PB2 powder to his bottles. It does get a little gritty, but it adds a lot of protein. I want to see if a more natural form of protein does better for him weight gain wise than formula. He has been stuck at around 17 pounds all summer.
Today I weighed him though and he was back to 18 pounds! The last time he weighed that much was back in June when we took him to Disney World. I almost thought we should move there.
We switched from OT to speech therapy. He still has sensory issues, but he had stopped making progress with OT. The speech therapist has really helped him learn how to chew. It sounds funny, but he really could never that before. For the longest time he only sucked on his food until it was soft enough to swallow. Now is chewing is much better, but I am pretty sure his swallowing is still off. He will bite into apples, chew up the pieces and then take it out of his both so he doesn't have to swallow.
I get frustrated, but the therapist reminded me that it is a long process and doesn't always follow a straight line. She also told me that I don't know it because I'm his mother, but that he is objectively really cute.
He so is! He is adorable and sweet. He is also at a great age. Ryan said something that really changed how down I was feeling. He said that we should just quit worrying, slow down and enjoy this age.
Oh my gosh. I needed to hear that so badly. I still worry and I still stress. But I give myself a break whenever I need it. And, try to sit back and just be.
He is such a great little guy. I still get sad that he may not be eating cake by his second birthday either, but at least we have hope!
A couple of things that have helped us so far :
- switching GI doctors, our first wasn't working out and now his care is much better
- joining a facebook support group, I have learned so much from there about medications and different diets to try
- reaching out to friends who have gone through the food allergy issue, it really helps to not feel alone
- staying positive, this is a long journey and being relaxed helps
- not being afraid to take a step back, even though being back on the bottle is a regression it is a lot better than the NG tube
- celebrating little victories, it is very discouraging to keep putting food out for someone who doesn't eat but every once in a while he adds another food to his repertoire. That's how it starts.