I haven't been updating this blog, and I fear that I'm kinda done with it. I no longer need it, since MCAD isn't defining Cupcake's life the way I feared it would. Our life situation has changed, with moving, I'm going back to work, etc. Though I want to throw out the occasional update, because I've noticed people who google MCADD end up here, so I want to put out good vibes on the Internet.
Cupcake is now 17 months and she's walking, climbing, and starting to talk. She plays with crayons, blocks and looooves reading books. Also, her latest obsession is babying her stuffed animals, she holds them, tries to feed them and walks them on her doll stroller. It melts my heart.
She's also doing great health-wise. At her 15 month check-up, she was at the 98% percentile for height, and over the charts for weight. Because of that, we have been officially switched to low-fat (2%) dairy products. We talked with our nutritionist, and we are on a heart-healthy diet, but without any major restrictions beyond that.
Nutrition-wise, we have a little foodie. Cupcake will try all sorts of new foods, and seems to have few texture problems. Risottos, fish, soups, chicken, veggies, grilled meals, sandwiches, fruits, tacos, Thai, etc, she'll eat all of it. Great for us, since we can cook one meal for the whole family. We still stick by the old staples that she loves for snacks and lunch: bananas, blueberries, oranges, low-fat Greek yogurt, pita bread, turkey sandwiches on whole-wheat bread, cooked carrots, peas and bell peppers, chicken. But she's cool when we want to try something else for dinner. She's getting more opinionated about not wanting to sit on her high chair, but we're letting table manners slide. It's more important that she eat a proper diet and develop varied taste buds.
On the breastfeeding front, we weaned at 16 months ! It was easier and harder than I was expecting, though one thing is for sure, it was the best thing for our family. Cupcake now drinks cow's milk from a bottle. We weren't able to transition her to a sippy cup, and thinking more about it, with her feeding requirements, we need her to still take a bottle at night.
We are still not taking L-carnitine. Cupcake hated the taste (would violently reject it), and we had decided with our previous doctor to only take it when she was sick. We've moved and have a new specialist in Texas, and on our first appointment he did full blood work. Her numbers came out good (though she still has the genetic mutation for MCAD), so we concluded that she doesn't need any carnitine supplements.
We've made it 17 months without any ER visits or metabolic crises. Luckily, Cupcake seems to have a tough immune system, and has managed to stay away from major illnesses. To this day she's never had the stomach flu, RSV, or coxsackie, and for that, we're very grateful. We take her out everywhere. She's been in the NY subway several times, and goes to her fair share or playdates, library story times, grocery stores, etc. We even took her abroad (more on that later). We haven't done anything particular to protect her from germs, and we've been lucky that she's responded well.
Last month, we had our first ear infection. Went to the doctor, who prescribed antibiotics, and commended us for catching it so early. Nice. She was on antibiotics for 10 days, and it was uneventful. Her medicine tasted like bubble gum and she loved it; she'd even ask for more. During this time, she didn't develop any major fevers, or have any appetite problems, so her MCAD was a non-issue. Thank Dog.
Also, we have started part-time daycare. The goal is to have her go full time eventually, but baby steps. My main concern was how seriously they would take her feeding requirements (since MCAD sounds made up when you try to explain it, doesn't it?), and though the daycare was very accommodating and understanding, it took a few tries for all of us to be on the same page. I had the daycare menu approved by our nutritionist. The next issue is that in the toddler classroom, they expect kids to self feed. Cupcake has been refusing to, so they have to spoon feed her. I'm hoping she'll get the hang of self-feeding soon, but currently our main concern is that she eat regularly. It's one of those MCAD concessions, I guess. We also send a banana daily in her bag in case she doesn't like the menu. So far, they've had to give it to her a few times.
It's been quite a transition. Cucpake cried the first couple of weeks during drop-off It broke my heart, but I knew it was a good place (I had personal references and just got a good vibe from the teachers). By now, 6 weeks into it, she's fine when we arrive, and is well rested and happy when I pick her up. This decision has been good for our family, and she's learning new skills and socializing very well. She's had a couple of colds and the aforementioned ear infection since she started, but that seems to be par with the course.
Her current sleep arrangement is a full-sized futon mattress in her bedroom floor, Montessori style. This way, we can lay down next to her to help her fall asleep without braking our backs. It's an in-between to co-sleeping. At night, we transitioned slowly to less feedings by gradually adding water to her bottles. Cupcake has been cleared to go 8 hours at night without food, so we give her only water if she wakes before the 8 hour mark. After the 8 hour mark, we give her some milk diluted with water. The theory is that the water satisfies the sleep association and thirst, while slowly retraining the body's hunger cues. I think this is why she STTNs some nights, but who knows for sure?
When she's sick, we go ahead and give her some milk in her nighttime bottles, just to be on the safe side.
One last thing, Cupcake went on her first international trip to a South America! The flight was exhausting (toddlers don't like staying on their seat), but she did very well during the actual stay. We were visiting family, so we had lots of extra hands to keep her entertained and active. Our concern was food, as lots of people get food poisoning when visiting South American countries. It's just a fact, no judgment here. We were extra careful to keep her away from uncooked foods, and poor Cupcake missed out on amazing tropical fruit and fresh fish. Instead, she ate lots of chicken soups, cooked veggies, mostly homemade stuff, and what do you know, she never got sick. I was still breastfeeding her then, so we knew that no matter what she'd have a calorie source at hand. I'm really glad we were nursing, as there were many times we found ourselves with weird schedules because of all the family obligations, and I was able to keep her fed every 3 hours, no matter where we were (house, beach, park, car, etc).
Ok, this was way longer than I intended, but its been a while.