Wednesday, March 14, 2012

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. 

Saturday, December 10, 2011


Life has been busy, and it's been a while since we've posted.  And I feel an overwhelming dread that there are just too many things I want to say and not enough time.  So I will paraphrase.

- Cupcake continues to do well, and is still growing and healthy.  Lately, she's been having some poop issues, which makes me think she might have more food aversions than we previously thought.  Related to MCAD?  Probably not, but worth keeping an eye on.

- We're between doctors, which I hate, but we moved twice in the last 3 months, which meant that her 12 month check up was with a doctor that we'll never see again.  Actually, we were willing to have her 15 month check up there, but apparently this doctor moved and left the practice.  The rest of the practice is too far for us to attend and meet a whole new doctor, so we're on a search for a new general pediatrician.  I don't like this, but it is what it is.

- We are also between Metabolic Specialists, which I like even less.  But we moved from Brooklyn in October, and the new specialist didn't have any available appointments until January, so in the meantime we have our emergency protocol letter and both doctors have told us to count them as the main resource.  Hopefully nothing will happen, and this will be remembered as just another snafu in our health coverage.

- Health coverage.  I seriously think nothing in my life will be as frustrating as trying to figure out the US health care system.  We've been royally f*cked one too many times, and we haven't even needed ER services yet.  At least it's all settled now.  Nate has a job, which provides full comprehensive coverage, and the last three months of COBRA, dealing with CHIP, and looking for private coverage will be but a terrible nightmare that happened some time in 2011.

-  I'm working again.  *Finally*  And even though it's only part-time right now, it's enough to afford to send Cupcake to daycare for a few days a week.  I'm looking forward to this, and I think she'll really enjoy the social interactions as well.   However, finding adequate daycare is a herculean task unto itself.  Is this just a standard issue in parenting, or am I being extra vigilant because of her MCAD?  I'll never know, I guess, this child is all I know on being a mom.

- We've been seeing a lot more family and it's great.  Lots more babysitting, and interactions with grandparents and aunts/uncles.  Cupcake loves the attention, and Nate and I are getting a much needed break.  I feel the light at the end of the tunnel in achieving more balance in my life.  Maybe I'll even start doing yoga again to regain my zen-ness.  Who know, stranger things have happened.

Wednesday, October 12, 2011

Letter to my baby: ONE year

Dear Cupcake,

I cannot believe it's been a full 12 months since you came into our lives!  In some ways, it feels like just yesterday that you were a little blob coming home from the hospital.  Then again, I can't even remember what life was like before you came into our lives.  Really, it feels like long long long ago.

We've moved to Texas, and you seem to be adjusting wonderfully to the move.  Sure, you were a bit clingy for a bit, but overall I'm amazed at what a resilient little thing you are.  You've been hanging out with grandparents, aunts and uncles, family friends and you smile at all of them.  You just love attention, don't you?

And for over month now, you've been walking.  You took your first steps before 11 months, and every day you are just getting stronger and stronger.  Now you can walk, get up, and grab your stuffed animals, all without having to lean on anything.  It's pretty amazing.

You  are also becoming a slightly pickier eater.  That's par with the course, right?  It really seems that as you've been exposed to more foods, you seem to remember them and then want them later.  The other day we had to through 4 different dishes before we realized you were asking for peas.  And once you had your peas, you had no problems with the rest of your meal.  Bless you, you're becoming such a great communicator.

We also got you a new car seat, worthy of your ginormous size.  Still in the 90th percentiles, I'm afraid.  How much longer will I be able to hold you?  Then again, these days you prefer to walk everywhere anyway.

I love you so much, my little Cupcake.  You are growing into a wonderful and intelligent little girl.  And I can't wait and see what the next year brings us.


Your Mama

Friday, October 7, 2011

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

Thursday, September 8, 2011

New Blogger ate my post

And it was a long one too.

I'm feeling so defeated by this.  Don't think I like the new blogger format, it doesn't automatically save.   And I kinda poured my heart out about what to do with Cupcake's sleep, what's going on with her teething, and how maybe the stress of moving is getting to us all, including her.

Sucks I guess.  I can't rewrite it, if feels futile to do so.   boooo

Monday, September 5, 2011

Breastfeeding and mole scratching

I am in need of some advice. Cupcake is at a phase where she's started to pick at some of my moles while breastfeeding.  I originally tried to distract her , but she's pretty relentless.   I've tried to cover up, but unfortunately, I have a large mole above each boob, and another right below them in the middle of my stomach.  So no matter what one of them ends up uncovered at all times.  And these are the slightly bumpy moles, they hurt when she scratches them.

I've read that nursing necklaces are recommended for this.  For the uninformed, this is a necklace who's sole purpose is to give the baby something to grab while nursing, not to be confused with a teething necklace, which we have, and they rock.  Anyone have experience with these?  Have they worked for you?  Any easy ways to make one at home?  I hate the idea of buying yet another baby gadget, specially if it doesn't work.  We have enough craziness at home without having to add a shopping trip to our day.   (I don't like shopping, unless it's for home wares and furniture, it's strange, I know.)

I'm feeling a bit frustrated with this development.  I originally figured I'd let her play with the mole and she'd get bored of it. But it seems moles are like cell phones, babies can't get enough of them. I've thought of covering them with band aids, but it doesn't seem like that would solve the actual problem.

I've made it 11 months now, and there's no reason to stop breastfeeding at this point.

Tuesday, August 30, 2011

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'.

Tuesday, August 23, 2011

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?

Thursday, August 11, 2011

Sleep Chronicles

It's been a busy last few weeks, both in Cupcake's life and in ours.  The main issue with Cupcake is a bizarro sleep regression that I'm having a hard time dealing with.  Please forgive the dangling preposition, my mommy brain isn't functioning very well.  Sleep deprivation is a b-ch.
Life before baby

Life after baby
 I also seem unable to organize my thoughts into a standard essay-style blog entry, so maybe I'll just try to touch the highlights of what's going on with us.

- We tried a form of modified sleep training.  Basically, my arms gave out and I just couldn't rock her anymore for as long as she needed.  The new plan was to rock her for 5 - 10 minutes (which seems reasonable, since she is, after all, a baby), then set he down on her crib.  At this point, if she cries, just sing to her and pat her and reassure her that I'm there.  She cried, and wailed, and looked very angry, but never more than 15-20 minutes.  I would stay in the room with her, not wanting the issue of sleeping of her own to get confused with separation anxiety. 

It worked, I admit.  Hearing her cry felt terrible, but she would fall asleep, and stay asleep for an hour.  Then proceeded to be in a wonderful mood the rest of the day.  I had feared that she'd hate me for doing this to her, but a baby's short term memory is bliss.  Mostly, I felt like I had no choice, since I couldn't rock her.

- I'm not sure how I feel about crying to sleep, even though we had to do it.  It seemed to me that Cupcake started waking up from naps mid cry, as opposed to the cooing she used to do.  Am I projecting?  Probably.  Reminds me of Dr Horrible's Sing Along Blog, when Captain Hammer is frozen mid song, and when he unfreezes he finished the note where he left off.  Yes, I just compared my 10 month old's napping pattern to Dr. Horrible, what of it?  In any case, even though my arms were finally getting rest, I wasn't fully convinced that this was the best approach for us.  A week and half later, she was still crying 10 minutes per nap.  Is that normal?  Shouldn't she be happily self soothing by now?

- She's learned to stand on her crib.  She's known how to pull up for long time, but she finally figured out how to go from laying down to sitting, and from there the rest is easy.  So now, I can't even let her cry as an option, because as soon as I put her down on the crib, she immediately sits and stands.  It's so quick, I could blink and I'd miss it.

Which leaves me with some options, rock her to sleep until she's really good and zonked out.  Which.... no, this is what got us in this predicament.  My arms can't rock a 22 lb baby.  Not gonna happen.   Or I could take her out to nap on the stroller.  Or I could just leave her to cry and figure it out for herself.

I've tried to let her fuss it out, and it's just not working.  She cried, gets completely red and snot nosed, and just doesn't let down.  At what point do I throw in the towel?  So far I'm stopping the torture after 20 minutes, I just assume she wasn't tired and we can try for a nap again later.

- Have I mentioned that she's just kinda not sleeping during the day but stays in a great mood?  She looks exhausted, will fall asleep within 30 seconds of me rocking her, and wakes as soon as I put her on the crib.  But once I pick her up she's all smiles, plays well on her own, and largely shows no signs of being tired or overtired.  I'm trying to remind myself that at this age many babies only need one nap, so as long as she gets one nap in there, it's all good.  She'll fall asleep when she's tired enough, right?

- The sleep training has had one awesomely positive side effect.  Cupcake now sleeps on her stroller again.  After a 5 month stroller strike, she now will happily zonk out in her umbrella stroller, her neck bending to utterly uncomfortable looking positions.   Freedom.   I can now leave the house without worrying about coming back home for naps or risk total breakdown while out.  Is it related to the sleep training, or simply a developmental phase?

- Could she possibly be transitioning to one nap?  And if so, she's gone from 3 naps to 1 in a matter of weeks.  Not sure how to handle this.

- Now with the the crib standing, she's back to waking up 4+ times a night.  We'd managed to cut it to 2, by letting her fuss it out for a few nights.  We're regressing.  And the worse thing is that Cupcake seems to be sitting up in her sleep, and then her body wakes her up.  None of us, baby included, are happy with this situation, but are at a loss on what to do.  The night we let her sort it out herself, she just cried while standing for a half hour.  I was so exhausted I let her, but we share a room, so this just wont work.  Should we set up an air mattress in the living room?  Would that work better?

I'm having a some tough weeks, where I feel like I'm doing it all wrong.  She doesn't sleep well, and it feels like a direct reflection of my love and parenting abilities.  It's hard to convince me otherwise. 

Sunday, August 7, 2011

Blog makeover

I've been trying to upkeep this blog, reformat it some, and figure out what to do with pictures.  Because, really, pictures are always better, but I still want to respect my child's privacy.   Anyway..

 I felt inspired by Dana's blog entry What Were We Thinking?: 10 tips for starting a blog. Not only did she make a pretty nice and clean list with blog starting tips, it also made me realize that my current comment section stinks.  Really, it does.  So I've installed, hopefully successfully, a new commenting software that should allow me to respond to people more efficiently.

Also, at some point I will figure out how to work the Blogher banner ad.  They say it's simple to install, but I beg to differ.  Of course, it doesn't help that we've been going through a baby nap crisis this week (more on that soon), so I'm short on Internet time.