Update: 17 months

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. 

On having a constant snacker

I've made a great discovery these last few weeks that hopefully should help us deal with the days better.  Turns out that Cupcake is much more of a snacker than I ever imagined, and needs less naps.

In fact, it seems that half the time she looked tired and I thought she needed to nap, she was actually hungry.  I began to realize that she was tired but not actually going to sleep, and if I gave her food/breast milk, she'd perk right up.

So we've been doing a new experiment.  Cupcake is down to two naps, at noon and at 5 pm.  If she seems to be tired earlier than that, I try to feed her first.  If she's still tired after getting the blood sugar rush, then she's probably having a sleepy day.

It's a curious thing, and probably related to her MCAD.  When she's hungry, and her blood sugar goes down, she seems to crash more than other babies.  She whine, gets cranky, tired, rubs her eyes, is pretty much insufferable.   But once I give her food her entire demeanor changes.  She smiles, the color comes back to her face (I hadn't even noticed she was looking pale!), her energy comes back, and her entire demeanor improves.  It's such a change, and pretty remarkable.

It makes me wonder how many times I've tried to put her down for naps and she fought them, when she was actually only hungry.

Does your kid need to snack constantly?  Could it be FOD related, or is it just common infant behavior?  What are easy healthy snack ideas?

On weaning

Man, I think I'm gonna have to make an appointment with our Metabolic doctor soon, because Cupcake is showing sings of weaning.   At the ripe old age of 9 months.  

I'm having very conflicted feelings about this, which I'm sure it's normal.

Currently we nurse at 9 am (wake up time). 12:30 or1pm, 4pm, 7pm and 9:30pm (bedtime), 12:30 pm, (dream feed)  4:30 ish (if she only wakes up once a night, which... riiiight... it's the best case scenario).

(As an aside, I'd like to share that technically, Cupcake can go longer between feeds - we're at 8 hours overnight- and doesn't metabolically need the midnight feed.  But we do it anyway, because otherwise she'd wake up at 2am, just as I am reaching my own REM sleep.  We have to work together, child.   But even though medically she could sleep longer, she seems to still get hungry during the night, after about 5 hours.  You can't convince me that MCAD is unrelated to to appetite.  I was told that the only issue with her MCAD is to feed her, so if she's hungry, homegirl is getting milk.  Hopefully this will sort itself out as she gets older.)

Aside over.  

So we've been having lots of trouble with the bedtime feed.   Cupcake is tired, fussy, and my letdown is super slow at the end of the day.  Also, and this might be the biggest factor, she usually has dinner with us at about 8 pm.  I'm beginning to think that milk at 7, solids at 8, and then again milk at 9:30... maybe not such a good idea.  By the time bedtime comes along she's probably not that hungry.  She'll usually eat, but more and more often she likes to be at the boob, but gets frustrated after a few minutes.  We go on with the routine and read books instead, and she doesn't seem too upset about it.  Seriously, sometimes she skips her bedtime milk,  which I thought was supposed to be the sacred one.

I'm thinking of combining the 4 pm and 7 pm nursing sessions.   As it is, the 4 pm is a complicated one too.  The way her naps work, I end up combining her 4 pm milk with her solid lunch sometimes.  And as we are usually out at the park at this time, she doesn't seem to interested in breastfeeding.   So maybe I'll just do one nursing session at about 5:30 or 6 pm, so that by the time bedtime comes along she'll actually hungry.

We'll see.  I'm hoping that in response to this adjusted feeding schedule, her naps will reorganize as well, and she'll go into two longer naps, instead of the current three.

Next week there's a La Leche League meeting.  I'll be curious what they have to say about it.  I'm fine with weaning.  Though I love breastfeeding, I'm not particularly interested in extended nursing.  I mean, if Cupcake has a hard time letting go, I'll keep giving her the boob as long as needed, but I have a feeling that won't be THAT long.  She likes real food way too much.

Letter to my Baby: 8 months

Dear Cupcake,

You turned 8 months yesterday, and I cannot believe how time is flying.  It feels like yesterday that we brought you home from the hospital, and now you're an established baby, smiling at the world.

You like to eat.  A lot.  In fact, I don't think I'm keeping up with how much you could actually eat, and I constantly worry that I'm not giving you enough solid food.  Then again, I want to make sure you're still getting the bulk of your nutrition from my breast milk (yes, we are still breastfeeding!).  You current favorite food is bananas.  I think you like it so visibly because you can recognize it.  All your other food comes to you in pureed form, so you have to wait until the first bite to know what it is.  Bananas, on the other hand, we feed you straight from the source (with a spoon, of course).  The other day we were at a convenience store and I reached to buy a couple of bananas and you audibly squealed in delight.  It was hilarious, and you managed to freak out a couple of school aged kids.

At this point you have officially become a carnivore.  I made you chicken and vegetable puree this weekend, and you loved it.  Actually, not to toot my own horn, but it came out delicious.  I should have made some for all of us too.  So far you eat:  chicken breast, lentils, spinach, apples, apple sauce, pears, bananas, brown rice, sweet potatoes, potatoes, carrots, peas, butternut squash, yellow squash, parsnips, yogurt.  All your food is homemade with lots of love (and the help of blenders and ice cube trays).  Additionally, you love munching on MumMums, which is a commercial-food concession I've had to make.  I mean, they're such practical snacks.

You love standing.  Seriously.  All the time.  You stand, stand, bounce, try to walk, and stand again.  I'm certain, now more than ever, that you will bypass crawling, since you still show NO interest in ever being on your belly.  (Unless, of course, you are on your crib, since you finally sleep comfortably on your belly.)  In fact, your new trick is that you let go of whatever you're leaning on so you can balance on your own.  It's amazing watching you learn to stand on your two feet.  Sometimes you balance for half a second, a few times you've made it up to 15 seconds.  After you stand on your own, you look so excited!  It's almost like you realize the importance of what you're doing.  At this rate, I don't know how soon you'll be walking, but it'll be sooner rather than later.

On sleep.  You're habits are changing, and you've dropped one afternoon nap.  This is a bit exhausting for me, but its a good sign that you're maturing towards a more adult sleep.  I wish this also translated to you not waking up three times a night, but I try to remind myself that you're just a baby, and it's normal for you to to have interrupted sleep patterns.  

For your month-day, we took lots of pictures with the new party dress you Mamama brought you.  She's been visiting for a few days, and you love spending time with her.  And your mom and dad got some much deserved time off.  We love spending time with you, but it's also nice to go out to dinner and drinks.  Plus you got to hang out with your Mamama, so it was a win-win.

MCAD hasn't affected us yet.  You're still nursing at the same times as before, you're just eating extra solid food now.  And though you eat a lot, I know you're burning lots of calories by pulling yourself to standing so much.  So far you've been a great baby for MCAD, you have a healthy appetite and a strong immune system.  Lets hope it stays that way.

I have so much I could tell you, but soon you'll need your night feed.  

Love,  Mom

Eating solids

Among the things I'm grateful for:  Cupcake loooves eating food.  If you're gonna have an FaOD child, where your doctors instructions are pretty much "make sure they're eating", it sure helps to have a kid that takes so well to food.

It's not anything we've done, I'm afraid, she just likes putting things in her mouth and swallowing them.  Our current routine is that I breastfeed her when she wakes up from sleeping (roughly 9:30, 12:30, 4, 7, 9:30), and twice a day, about an hour after she's had her milk, I give her solids.  We're going with the idea that under one years old, food = fun, and she isn't really getting nutritional value from the food.

And it is fun.  It's amazing seeing her taste things, make faces of curiosity when we introduce new foods, sometimes she even grabs her own spoon and puts it in her mouth.  When we are out and she sees us get out her plate and a banana, she gets super excited and eager for her food.  Where does it come from?  How does she know so well what food entails?

We started her when she was about 5 1/2 months old, and at the time we'd have about one meal a day, and at that only a few spoonfuls.  She wasn't 6 months yet, but she was just soooo curious about everything that went into our plates and mouths, it seemed only fair.   By now she has two meals a day, of about 4 oz each.  I guess she could eat more, but I'm taking it easy.  Sometimes she doesn't even finish her 4oz, and other times it seems that it's not enough.  It changes per day, probably in direct relation to how much she's been jumping on her exersaucer.

So far she loves bananas (and she can eat an whole one, where in her stomach does that even fit?), apple sauce, pears, apple slices, her favorite by far is sweet potatoes (I can mix them with anything to introduce a new food), butternut squash, carrots, yellow squash, peas, parsnips, and she'll tolerate brown rice when it's mixed with a vegetable.  She also tried spinach (mixed with apple sauce, she loved it), but it seemed to not agree with her digestive system.  Ditto for yogurt, which gave her explosive diapers, and I don't really enjoy cleaning doodoo from onesies, so I don't think she'll be eating yogurt for a while.  We tried avocado a month ago and she didn't like it.  Time to try it again....

I make all her food, and so far it's been very easy.  A couple of times a week, while I'm making our dinner, I'll steam or boil a veggie for her, and them I'll mash/blend/food mill it.  Then I freeze it in ice cube trays and store it in zip lock bags.  When it's time for her to eat, I just warm them up in the microwave.  Too simple right?  I was expecting to put more effort into making her food, and I'm happy to report that this is simple stuff. 

So far, Cupcake  hasn't had a single jar of food, which I'm pretty proud of.

She'll be 8 month next week, and we're ready now for the next stage.  Some chicken, maybe beef, and more grains?  Chunkier purees?  Her food is pretty chunky as it is, so I'm not sure how to proceed next.   Suggestions?