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 moving

So here we are, halfway moved.  I say halfway because we haven't found full time employment yet, which we need in order to rent our own place.  So in the meantime we're staying with my parents.  It's been 5 days so far, and though we seem to be getting in each others space a bit, I think we're gonna be fine.   I hope.  I really, really hope.

So now we have to deal with finding jobs, getting our own place as soon as possible.  And most dauntingly, dealing with a less than desirable health insurance situation. I'm most worried about getting Cupcake a pediatrician, a new metabolic team, and keeping her happy as we deal with all these changes.

More to follow

Life changes - we're moving

I've been neglecting this blog, but it's with good reason.  We are moving across the country in a month, and this is all happening so suddenly that it's hard for me to catch my bearings.

Going back "home" is something we'd had in the back of our heads since Cupcake was about 3 months old, but it was more abstract.  As in, wouldn't it be nice is we had grandparents nearby.... let's deal with that later.   But then our crazypants landlord decided to not renew our month-to-month lease and basically gave us less than a 60 day notice to leave the apartment.  Which.... is legal but kinda wrong.  It came out of nowhere, and we still don't know why she's doing it.  In fact, she's avoided us since she sent the letter, and yes, she lives right below us.  It's a stressful situation to say the least.

So here we are, going back to Texas.  Trying to figure out how to pack up our lives and move them, get new jobs, and do all this while keeping our almost one year old sane.  Or maybe just keeping us sane, she'll be okay.  We are also super excited to live near family again.  Cupcake's grandparents want to babysit, and take her out, and give us a break.  Maybe we'll get a few nights of sleep here and there?

This also means we'll have to get a new metabolic doctor, which stresses me because I really feel we got 'in a groove with our current doctor.  I fear our new doctor might be stricter, or treat Cupcake's MCAD as something scary and debilitating, which is not an attitude that works for me. Oh well, we'll figure all this out when we get there.  It's not gonna stop the move from happening.  We HAVE to leave our apartment, and Nate has put in his two weeks.

As Martin Lawrence said in the climax of Bad Boys II, "$hit just got real'.

Taking a baby to the beach

Jacob Riis Beach.  Photo from National Park Service.

Gone are the days of picking up a bag, throwing some sunblock, towel and book, and heading to the beach.  Trips with a baby means tripling the amount of stuff you lug around (at least), staying for half as long, and changing your expectations of ,"fun and relaxation".  Having said that, a little bit of preparation, and you can have a wonderful time going to the beach with your little one.  And if you're lucky, they'll love the sand and water.

Today we took Cupcake to the beach for the first time.  I was a bit nervous.  What if she hated it?  What if we had a total meltdown in the car?  Would we forget something vital and important?  And most importantly, would it be fun for all of us?   It was a resounding success.  So much that I've decided to compile my patented advice for posterity.  

Ways to have a wonderful time at the beach with a baby:

• Sun Protection   I'm a little paranoid about the sun (not for myself, just the baby), since their skin is still so delicate.  So we followed the advice of overprotecting.  Applied sunblock at home before we dressed Cupcake, then reapplied at the car when we got to the beach (by this point, between getting ready, driving and grabbing a bite to eat, it had been over two hours since the last sunblocking).  And again after being at the beach for about a half hour.  Honestly, it's impossible to overprotect the skin, and though the baby lotion is grossly overpriced, I'd rather waste 5 bucks than have to deal with sunburns at 3 am.  We use California Baby Sunblock SPF 30.
• Time the outing around naps.  No sense in dealing with a cranky and sandy baby.  We decided to hit the surf after the morning nap, hoping that she'd sleep in the car on the way there.  For this purpose, we also picked a beach that was approximately 40 minutes away.  We thought we were soooo clever.  Instead, Cupcake had a meltdown as we were arriving in the beach area, and we had to give her an Ergo nap while we grabbed lunch in an air conditioned diner.  Ended up working out.  Then we started packing up as she began to show signs of tiredness, so that by the time we drove bar she zonked out in the car.  All in all, we maximized our time in the actual sand.
• Have the right gear.  We had a spankin' new beach umbrella (with an adjustable tilt), beach towels, a foldout chair, sun hat, plastic toys (didn't buy anything special, just used her regular plastic toys), bucket, t-shirt, water, snacks and swimming diapers.
• Don't bring more stuff than you can carry.  Even if you are driving and the beach has on-site parking, you'll still end up walking a bunch on the sand.  Unless it's one of those beaches where you park right in front of your towel, but meh, those beaches aren't too nice in my book.  Most beaches have water, then a long stretch of sand, some type of boardwalk/ bathroom area, and then a parking lot.  And if it's a beautiful sunny day, the car ends up pretty far back.  We brought a bunch of stuff, but there were also two of us carrying it.   I wish we'd packed more compactly, as we didn't take into account that Cupcake would be super squirmy with excitement of being outside, so it ended up being one of us with just the baby, the other one in Sherpa mode with too many small bags.  Next time, larger bags so there's less packages.
• Bring an inflatable pool.  This was a bit of a hassle but oh so worth it.  With an inflatable pool, we were able to have Cupcake play in the water under the umbrella shade right next to us.  We filled it with ocean water, and gave her some toys, and she had a wonderful time.  She played there on her own for over 20 minutes.  Time for us to relax some, chat, get some sun.  Our main issue was deflating it, because it wouldn't fit in the bag again, so next time we have to bring a much large plastic bag to squish it into.
• Designate a non-sandy towel.  Everything gets sandy, it's just a fact.  But it helps to have a towel that stays in your bag, until it's time to dry everyone up.  This towel stays clean and off the ground, and is perfect to dry the baby before you head home.
• Bring snacks and water.   We had bananas (her favorite), mum-mums, and sport nozzle water bottles.  When in doubt, when Cupcake got fussy, we gave her water.  One can never overestimate how much they're sweating (specially if your baby has a metabolic condition, as Cupcake does).  We also gave her milk at the beach, as I have absolutely no qualms about pulling my bikini top to nurse Cupcake (while under the shady umbrella). Hydrated well-fed baby = happy baby.
• Address how baby is responding to the water.  In our case, Cupcake turned out to not be a fan of sitting on the shore and having the waves hit her.  And she does NOT like wet sand, hilariously.  However, she loved loved loved having us hold her and moving her around the waves.    We'd hold her in something like the "colic hold", and have her splash her arms and legs in the water, then when the waves came they'd splash her and she loved it.  I was expecting her to sit on the sand, but hey, she knows what she likes.
• Take lots of pictures!  It took us by surprise how much Cupcake enjoyed it.  Specially a long interaction with sand.  She was absolutely perplexed at how it slid off her hands.  Glad we were able to capture ever moment.

All in all our first beach experience was a big success, and I can't wait to repeat it next weekend.  For now, we're gonna take it easy tomorrow and give Cupcake's skin a break from the sun.  We were prepared, and Cupcake is a total beach bunny.  Next adventure, the local outdoor pool.

Flying with a baby

We've just spent 10 days visiting the grandparents in Texas, and man, it's been amazing and exhausting.

This is actually Cupcake's second trip on a plane, but the first time she was 2 1/2 months and slept the entire flight. (Of course, at the time, I was super terrified of having that baby that would cry the entire plane ride.  Silly me, not realizing that babies under 3 months sleep and sleep and sleep some more).  Five-and-a-half-month-olds, however, stay awake for 2 hours at a time, need to be entertained, and have clear idea of what they want.  And they like to express it.

So here are my tips for flying with a baby older than 4 months, old enough to be awake, but not quite crawling/walking yet.

 -  Take a carrier.  We had an Ergo (awesome!), but really, any carrier that your baby is used to will do.  We were able to move around the airport with no problems, and Cupcake was close to me at all times.  We took a stroller as well, but we just piled it with all the stuff and rolled it (hello free airport cart!).  I even used the Ergo to rock her to sleep while we were flying.  I just bounced around the cabin during the roaming times.  People probably though I was crazy, but who cares, the baby was content.

- The stroller/car seat can be gate checked.  We also had Nate go into the plane first (when they called for all the people with small children to board early) so he could take care of disassembling the stroller, getting our carry-ons on the overhead compartment, and get our space set up.  I went in at the very end to minimize the time cupcake would spend in the plane.

- If possible, see if your neighbors can move to another row.  This worked wonderfully on our flight to Houston, where we had three seats to ourselves.  Cupcake had room to sit, stretch, and we were able to change her diaper on the seats.  On the flight back, however, we had no such luxury, as it was a full.

- Take a boppy pillow.  Seriously.  Though it seems like a bulky item to take as a carry on, it helped us sooo much.  We just crammed it into a rolling carry-on and took it out once we were on the plane.  I was able to breastfeed comfortable, support her so she could sit on her own seat, and have her nap on me without my legs going numb.

- This is an oldie but goodie, but feed during takeoff and landing.  I discovered that once cupcake began to be upset with landing, I didn't care who saw my boob, it was just about keeping my baby happy.  And you know what?  no one seems to care if you feed your baby on the plane.  I guess people would rather have a nipple  flash than hear a cranky crying baby, and I don't blame them.

- Pack three extra outfits.  Because yes, they will have a blowout on the plane.  Not in the airport.  Not right before you leave, while still in the comfort of your home (unless, of course, you have packed all their clothes and the cab is waiting outside).  And they will need changing.  So it's easier to just prepare for the diaper equivalent to the apocalypse.

In the end, what made the biggest difference was having both of us there with Cupcake. Even though the bulk on the baby entertaining and soothing fell on me (she seemed to have a serious case of mamitis), it was still reassuring to know that Nate was there to hand off the baby when I needed to use the bathroom.