Updates

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.

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.


Love,


Your Mama

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

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

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.

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'.

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?

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. 

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.

Ambivalent feelings about L-Carnitine supplements

So I'm gonna start off by saying that I'm not a fan of supplements, whatever their form.  I don't take vitamins, and I was reluctant to even give Cupcake vitamin D drops (in the end I was spotty about remembering).  I also don't give her iron supplements, choosing instead to make sure I'm feeding her meats/spinach/legumes.   This might make me a terrible, mom, but I'm cool with it.  :)

So when our doctor told us to give Cupcake daily L-Carnitine for her MCAD Deficiency, I was dubious.  But hey, I'll follow doctors orders if they're necessary.

Cupcake's New Born Screening numbers were very alarming.  So much so, that the Metabolic doctors recommended that we give her the highest dosage of L-Carnitine for her weight, which I believe was 2 ml per day.  Since we were new to the whole FaOD world, we did as instructed, and it was a colossal failure.  She would scream every time we gave her the drops, which was twice a day, and we would all dread them.  Still, if that's what's necessary, I figured we should toughen up.  I believe in modern medicine.

At our follow up appointment one week later we asked the doctor if the Carnitine was strictly necessary.  By this point, Cupcake's new labs were in, and her levels were much more stable.  She still had MCAD (I'd been hoping for a false positive, but no such luck), but the situation wasn't as dramatic.  And since Carnitine is controversial anyway, we made the decision together, with our doctor's approval, to only give it to her when she got sick. 

Our doctors trust us.  We had by that point shown them our anal retentive tendencies of tracking all her feedings and diapers, so I think they felt confident that we'd be able to make the call if anything was amiss with Cupcake.  Each case is different, of course, but I was more comfortable with giving medication only when absolutely necessary rather than as a precaution.

For her next two colds, we gave her L-carnitine from a syringe, and all was fine.  I doubt she liked it, but it was a non issue.

Then we had the recent Roseola fever scare.  When her fever spiked at over 102, we called the Metabolic Center, and they informed us that our new L-Carnitine dosage was 5 ml, two times a day.  That night, after she was done breastfeeding one side, we tried to put the syringe in her mouth and administer the meds.  Forcefully, I might add, since she was refusing it.  And then all h*ll broke loose. 

Firstly, she swatted the meds away, which seems like a normal reaction.  But afterwards, she started refusing all food and liquid.  I just don't think she trusted us anymore, after we had pried her mouth open to put nasty medication in her mouth. (And L-Carnitine smells nasty, I can't even imagine the aftertaste it must have)  Every time I tried to breast feed, she would scream and swat the boob away.  Luckily, she was okay with bottles of formula, and we were able to persuade her to have a couple of ounces.

For two days, she refused almost all food.  And this baby has one of the healthiest appetites I've even known.  It was probably the fever taking away her appetite, but it's too much of a coincidence that all this happened right after the Carnitine.  I think the two issues are related.

So we didn't give L-Carnitine to her again.  It seemed that our best shot to have her eat again would be to not freak her out with forced medicine.  Eventually she started eating, and her fever broke at just about the time we were to see the Metabolic specialist.

We discussed with our metabolic doctor what to do about the L-Carnitine next time she got sick.  And we all agreed that it's more important to have Cupcake eat real food (calories!) than take the medical supplement.  Her advice was to mix it with something to mask the taste, and she specifically recommended Hawaiian punch as something that has hides nasty medication flavors  I vowed right then and there to never judge another mother again if I see them feeding their babies nasty unnatural foods.  You never know the whole story...

So we'll be taking a break from Carnitine unless the Hawaiian punch business works out.  I understand that L-Carnitine supplementation has worked wonders for other children with metabolic conditions.  But in our case, we'll be playing it by ear for a while.

We had Roseola

So one pediatric appointment, a Metabolic appointment, a scary fever, sleepless nights, and lots of fussiness later, we have confirmation: Cupcake has/had Roseola.

This is what our regular pediatrician suspected from the beginning, but we wouldn't know for sure until she got the tell tale rash.  By yesterday her fever was gone, and this morning she woke up with a gentle red covering on her skin.  I've never been so glad to see a weird rash, because now it means that it's over.  Done.  Fever broke, the rash should not be painful, and she's no longer contagious.  We can go back to our regular programming.

Though we did learn a lot from the experience.  Cupcake actually started refusing food for a whole day, going so far as to violently swat away anything we'd try to offer her. This was new for us, and left us at a loss of what to do.  Somehow she managed to eat some snacks here and there and drink a bit of breast milk at just the right times, so we avoided any type of crisis, metabolic or otherwise.  Even non FaOD children need to eat and hydrate if they're feverish.    

I will go into more detail about our metabolic appointment, as that deserves its own post, and our new found frustrations and opinions about L-carnitine (in short, we're not fans of carnitine at the moment).  In the meantime, we will rejoice that Cupcake did not have Coxsackie, a virus that still terrifies me and is probably lurking in the playground shadows.

Fevers

Cupcake has a fever or 101.5 today, and she feels very warm.  So far she's still eating like a champ and cruising the furniture like no one's business.  Then again, she's also been clingier, and looks under the weather.

Thank God it's a weekend and Nate is here.  We can trade holding her, and bounce our worries off each other.  But because it's Sunday, the doctor's offices are closed, so we'd have to wait until tomorrow to have her checked.

I've called our metabolic center (they have a 24 hour line), and they told us to follow her illness, and keep feeding her every 2 hours (breast milk or solid food), and call them back if she starts vomiting or refusing food.  But otherwise, give her L-carnitine, fever reducing agents, and lots of TLC (that's Tender Loving Care).  Not much more we can do.  MCAD doesn't make Cupcake more susceptible to illnesses, nor does it make her body deal with the virus/bacteria any different.  It's not her immune system that malfunctions.  Rather, when she gets sick, we need to watch that she doesn't go into fasting, which could cause a metabolic crisis.

So it seems that everything is "under control", but man, it's hard seeing a 9 month old miserable with a fever.  She's alternating between happily energetic and whiny sleepy, depending on how much we sing to her.  We'll just take it easy today, play in the house, and make sure she's getting plenty of rest and food.

And here comes the mom-guilt.  I fear she has the coxsackievirus that's going around.  Why, oh why did I take her to that play-date on Wednesday?  Is that when she caught it?  Should I have protected her more from infections?  Last Wednesday, I made the conscious decision to take her to the picnic in the park, even though some babies had come down with coxsackievirus.  Since the infected kids wouldn't be there, I figured it was okay, and I just make sure she didn't share toys with any of the other babies.  Maybe that wasn't enough.  We also went out to the playground every day this week, even though we're having a crazy heat wave and this virus is making the rounds.  Could it be the extreme temperatures that affected her ability to fight off infection?  And if this illness gets worse and she ends up in the ER, I'm gonna have a hard time not blaming myself.  I've always believed that we can't keep children in a bubble, that it's our duty to expose them to the world.  Illnesses at a young age result in antibodies and healthier adults, right?

I just feel so bad for her right now.  She seems physically uncomfortable, and there's only so much Tylenol or ibuprofen can do.  Any other tips for a feverish baby?

Re-reading The No Cry Sleep Solution

A friend gave me Elizabeth Pantley's The No Cry Sleep Solution when we went through our 4 month sleep regression.  I read it along with Ferber's "Solving Your Child's Sleep Problems", and Weissbluth's "Healthy Sleep Habits, Happy Child."  Of the there, Pantley's words and advice were the most relatable, and I liked her gentle parenting approach to a baby's nighttime needs.  Overall, I highly recommend it.

I've written about my opinions on Ferber (liked the theories and research, not so much the CIO methodology), and Weissbluth (hated his close minded one-size-fits-all admonishments), but I realized that I've never blogged about the No Cry Sleep Solution.  Probably because I was actively taking advice from the book, so it felt like it deserved several pages of analysis and thought.

Well, I'm ready now.  If I am to be honest with myself, Cupcake never recovered from the 4 month sleep regression.  She has some good days and some bad days, but the good days are still only 4-5 hours of sleep a night, and on the bad days she needs to nurse every 2 hours (she doesn't have nighttime needs beyond food, it seems).  The bad times are not too terrible, compared to some other stories I've heard, but still, I'm getting worn out.

I want to respond to my child's needs, and if she needs to eat at night, then she shall have milk.  However, I also want to help her self soothe to the best of her abilities.  Nothing wrong with gently directing the child towards more sleep independence, right?

Over the next few weeks/days I plan on going over the book again, and hopefully writing about our experiences with it.  What worked for us, what didn't, and what things don't work because we might just have totally unrealistic expectations.

MCAD and neighborhood viral outbreak

It seems that several kids in our playgroup have come down with Coxsackievirus.  A benign but highly contagious illness characterized by high fevers and blisters in the throat that cause nausea and decreased appetite.

I am terrified.

I don't care that this virus works itself out after 3-5 days with no lasting effects.  For a child with MCAD, a high fever with decreased appetite is exactly the most dangerous situation to be in.  I'd rather take a 2 week long cough, or general fussiness.  But please, no high spiking fevers. We've avoided the ER so far, and I am not about to start going.

I'm glad our playgroup responded so quickly and informed all of us of the situation.  But it leaves me wondering what to do tomorrow.  We have a lunch picnic play-date and a music class scheduled.  Do we still go?  So far I've avoided sheltering Cupcake from illnesses, choosing to take her out in crowds no matter what.  And she's responded by having a strong immune system.  But this is the first case of a specific viral outbreak.  I don't want to hide, but I don't want her to be ill either.

She's been fussy this evening, and took a bizarro nap at 7 pm (her bedtime is 10 pm).  We can't tell yet if it's a strange extra evening nap, or if she'd down for the night.  Either way, something is off, and I hope to Dog she's not coming down with the illness.

 

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.

Updating the blog

I'm redesigning the blog, so please forgive the crazy formatting issues for a couple of days here.  I'm trying to take it down while I reformat, but I'm not sure I'm doing it correctly.

HTML and graphic design are fun, so I might be putting way too much effort into this.  Time I don't have at the moment because I really should be doing dishes, cleaning the living room floor and updating my professional online portfolio.  Which is why the site might be wonky for a bit.

Thanks for your patience  :)

Breastfeeding - How to deal with a biter

This seems to be a current topic of conversation in my mom-baby group, as many of our kids have multiple teeth.  Cupcake still only has her 2 bottom teeth, but they're razor sharp.  And yes, sometimes she bites.

We went through a bad biting stage for a while, and I asked my local La Leche League chapter for their advice.  They are such a great source of information, even if I still find them overly AP for my tastes.  Also, through asking other people, I've come up with a brief summary of some techniques to deal with a compulsive biter.

Here goes:

Reprimand : Pull them off the boob and say NO! very firmly.  Then put the milk (boob) away.  This didn't work for us.  Cupcake found it hi-la-rious.  Which then would make me laugh, and well... it wasn't getting the point accross.  At the LLL meeting, many ladies said that this technique works in theory, but not in practice.

Distract and underplay the reaction:  Many times, yelling Ow! in pain or telling them a firm NO! can be counterproductive, because most babies laugh at the attention.  Instead, try to have a non-reaction.  When they bite, pull them away (making sure to insert your finger in their mouth so you're not pulling your nipple out while biting, ouch!), and cover your boob.  They will cry, and you distract them with a teething toy in their mouth, or something else in their hands.  When they're calmed down a bit, start breastfeeding again.  Repeat for as many times as necessary until they seem to get it.

Know that this too, shall pass.  Just because the baby has started biting all the time, it doesn't mean this is the new normal.  Like everything else, they go through phases.  Cupcake had a terrible week right before her first tooth came him, and I was basically ready to end our breastfeeding relationship.  I gave myself a deadline for a week away, if she wasn't done biting by then, we'd have to use formula. Her tooth came in before that time (lucky girl) and she stopped biting.  Still bites once in a while, but it's very seldom.  Right now she's teething again, so she'll bite more, but it's not a chronic issue.  

Prevent the bite.  Observe their biting habits.  Are they biting at the end of the nursing session, before the let-down, when they're done with one side?  Maybe they're done drinking for a bit and need to teeth.  Have a cold teething toy close at hand.  And when they're drinking, observe closely if the sucking motions are slowing down, then pull them off the boob and insert a teething toy in their mouth.  As in, try to pre-empt the bite.  I've never been able to actually do this.  Cupcake always catches me by surprise.

Nurse when well rested.  Many times, they bite out of frustration or tiredness.  See is you can feed them at times when they're not dying for a nap.  This has really worked for us.

Change nursing positions.  For example, Cupcake will only bite me when she's laying down.  If she bites, I switch her to sitting.  She sits on my lap, facing me, with the boob on her face.  Looks hilarious, but it seems to distract her enough.

The boob smother.  The Dr Sears recommended method of pushing the biter's head into your breast.  Effectively, this smother forces them to have to open their mouth and they can't bite (it saves your nipples too) Repeat as many times as necessary until they get the point.

Any other techniques you would like to share?  I'm always open to breastfeeding advice.

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.

Baby Earrings - solved

We went back to our pediatrician today, as the nurse who's the earring expert was in today.  I like her, we've seen her for a sick visit before, and she's very professional and reassuring.

She looked at Cupcake's ear and told me that the hole might not have closed all the way and that she wanted to try to get the earring through before re-piercing.  No reason to put Cupcake through pain if it wasn't necessary.

I gave her our earring (the thinner one), and she managed to poke it in through the back (which is where we'd been having trouble).  So it was decided, the hole was still there, so we could just push the original thicker earring through. I wanted the thicker earrings because their backs have a locking mechanism and would be safer.

So she asks me to hold Cupcake down while she gets the earring in the hole,  and in the second try it goes in!  Sure, Cupcake cried, but it was more of the angry cry rather than pain. It wasn't her usual banged-her-head high pitched shriek, but more of a low angry cry.  If I had to translate it from baby talk, it would probably be something to the effect of: "stop touching me, weird nurse lady, I want to practice standing... why are you still touching me, why can't I move my arms!"  I can handle her anger.  As soon as the nurse was done, I picked Cupcake up, and all was well.  She got a Mum Mum to distract her, and she promptly forgot that she was upset.

Our pediatrician didn't even charge us for this.  I'm so grateful at how professional and thorough they were with all this. I felt like Cupcake's ears were in good hands.  We were at her pediatrician's in a sterile environment, where a medical professional is overseeing it, and her ears are fine.

Drama is over.  Back to our regular programming.

Baby Earrings - follow up

I went to the pediatrician today to see what to do about Cupcake's missing earring. We'd tried to put it back ourselves last night, but we couldn't get it through. I called her doctors office (where they did the original piercing), and the doctor nicely told me that she could try to put it back, no biggie, just stop on by around lunch time.

We went a little after 1 pm, and waited for about 10 minutes, which is fine because our pediatrician has a wonderful waiting room full of wooden toys that must be some Montessori fantasy (you know the type, wooden, pure and very Swedish).  Cupcake has a great time playing with new toys.

When the doctor finally saw her she regretfully informed us that the hole had healed completely, and the best thing to do would be to re-pierce it.  I mean, we could try to push it  through, but then we'd be risking potential pain, and also infection.  Her medical advice was to re-pierce so we'd know that the needle was antiseptic, and they could use the proper little piercing contraption.  I was devastated.  I just could not believe that the hole could close in a mere 30 hours.  Our pediatrician was super nice about it, and reassured us that this was in fact wonderful news: Cupcake is very healthy and can heal quickly.  Well... when you put it that way...

We have another appointment tomorrow for the re-piercing, when the nurse practitioner is in.  On one hand, I'm really upset that she'll have to go through the pain again, but I'm reassured that our doctor is taking care of it.

Whatever.  My mom is currently in a conference in Spain, and I asked her if she could go  buy us some baby earrings to have as backup should she pull one out again.  I seriously don't know where one would go about buying baby jewelry in the US.

Apparently, my mother went to the first jewelry store she found and asked for baby earrings, and they had newborn, baby and toddler styles. Bless them. She started chatting with the store owner, explaining to him that she needed earrings for her granddaughter, because in the US babies don't have earrings, and told him how scared I (Cupcake's mama) was about the piercing falling off, since some people in the US considered baby piercing barbaric.  His response:  They legalized handguns,  but they consider earrings barbaric? That's ridiculous.

It's so reassuring whenever I hear of other countries that pierce.  I was feeling very mixed about it today, but it's just a cultural difference, much like Cupcake's late bedtime.   I'm still scared about the re-piercing tomorrow. But it'll be okay. It's being done in a sterile environment, and Cupcake is a tough girl.  We'll be fine.

Baby earrings

I'm having some major second thoughts about my decision to give Cupcake earrings, and I feel like a terrible mother about it.

She got earrings when she was almost 3 months old. At the time I was freaking out that we had waited too long.  I come from a country where baby girls get their ears pierced in the hospital, within days of birth, and the idea of waiting 3 months filled me with dread.

Nevertheless, after her tetanus shot, we made our appointment, and our doctor's office pierced her ears. It was a pretty easy procedure, that didn't seem to hurt cupcake too much.  Sure, she cried after the first piercing, but it seemed to come from frustration at being  strapped down more than anything else. She cried for a few minutes (they felt like hours), and then promptly forgot about it.  In fact, that evening was the first time we heard her laugh.

Our pediatrician told us to rotate them and clean them, and that after a month we could take them out and replace them with our own earrings. We ended up keeping them for almost 3 months, as we were both too nervous to deal with holes in her ears.

Finally, we got some courage and replaced the earrings.  It was stressful, but she seemed pain free, which was our main concern.  The new earrings were a gift from Cupcake's great-grandmother, and they were special gold baby earrings with a special back to protect from scratches.   Everything was gravy.

Then yesterday I found one earring on Cupcake's play mat.  Apparently, she took it off, not really sure when.  And I looked and looked, and I couldn't find the back (did she swallow it?).  No problem, I thought, we'll just put back the original earrings from the pediatrician's office and go about our way.   Except that then last night we were running errands and we got home past Cupcake's bedtime, so we had to put her down quickly and didn't get a chance to try to put the earring back.  

We tried again this evening, and it won't go in.   It goes in one side, but doesn't seem to come out the other. We've realized that the doctor's earrings are much thicker than ours, so her ear might have healed thinner during the last 3 months.  I don't know, at some point early in the procedure I had a total panic meltdown.

I feel like a selfish mother for putting holes in my baby's ears. And I tell myself that this is cultural, that I had earrings as a baby and it's perfectly normal, but we live in the states, and the constant scrutiny of people noticing her ears are pierced is getting to me.  I try to tell myself that it's better to do it when they're young, as there is less chance of infection, but then  why won't the earring go in her ear?   I'm so scared it's gonna have to be re-opened, that it's gonna be infected, that it will cause her pain.  I can't bear to have her cry over something so stupid.

I feel like a terrible mother because we might have been able to get the earring in  the hole if I hadn't freaked out. This was a two person job: one holds the baby down while the other puts the earring, and I couldn't do either. I ended up hyperventilating in the bathroom while Nate tried valiantly to fix the problem, but ultimately couldn't.   Why can't I handle it? What's wrong with me? Why am I failing when I'm needed?  I'm gonna call the pediatrician tomorrow and see if she has any advice.

What's our bedtime routine?

The bedtime routine is one of the few things we feel in total control of as parents.   We chose it, altered in response to Cupcake's preferences, adjusted things that worked better logistically, and have arrived in a routine that we all enjoy.  Cupcake is happy, we have activities to do with her, and most importantly, she goes to sleep very quickly at night.  (Does she stay asleep? No, she still nurses at night, but one issue at a time, right?

We start some time between 9 - 9:30 pm.  And yes, that's late compared  to other kids in the US, but she wakes for the day at 9:00 am, so it's a non issue,  she's getting all the sleep she needs.   So depending on how tired she is, we either try to hold her over until 9, or sometimes we are having such good family time that next thing we know its 9:30 already and it's time to get her in her bath.

First bath, always with her dad.  This is their special  time to bond and play.

Next dry off and, put on diaper, and have baby massage with lotion.  I used to do this, but now Nate has been giving her the massage  more and more often. That way I can be cleaning or cooking for longer. Then she puts on pajamas.

At this point Nate will take her to the kitchen clock and tell her what time it is.   This is my sign that they're done,and I nurse her in the couch.  She has milk, sometimes lots, though lately she doesn't seem as hungry at night.

Then we read two books.  All three of us.  Sometimes only one of us will read if the other is busy, but it's such a fun family activity, we try to do it together.  We used to skip the book sometimes when she seemed way too tired, but now we have to read it.   Then about a month ago seemed to be sleep nursing and we made the misguided decision to go ahead and take her to bed, and he screamed bloody murder, and was not content until we read two book.  Yes, two.  It's pretty cute, she likes turning the pages, and has books that are obviously her favorite.

When the books are over, I give her a goodnight kiss and she goes to our  room with her dad.  He rocks her on a yoga ball (still), and she's out within 5 minutes. He sets her down on her crib, she turns to sleep on her side, and by 10 pm-ish we are done.

It's been really great.   She really knows the routine by now, and we've been able to leave her for the evening with my mom, who followed the sequence to a T and said Cupcake zonked out with no problem.

It's curious how she seems to get that it's time to sleep.  She's energetic and awake in the bath, then gets tired and cranky during pajama time, is about to pass out during milk, but wakes completely for the books.  We used to worry about the books taking her out of the tired zone, but it seems the exhaust the last bit of energy she has left, so by the time we're done with them she's ready for sleep.

Next goal, establish a nap time system that's as effective.

Swimming pool

Yesterday, as a father's day treat,  we took Cupcake to the pool for the very first time.   It's summer time, and the weather is great, but since  the local school aren't on summer break yet, the public pools aren't open .  So instead we went to a nearby indoor pool that offers open family swim Sunday afternoons.

I'm glad we went the indoor route first, because we didn't have to worry about sunburns, or Cupcake getting cold from the breeze after getting out of the water.

Our initial goal was to be there for 15 minutes, figuring Cupcake might hate it, but since we had to pay to get in, we should try to stay as long as possible.  No issue, she LOVES the water.

When  we first put her in (there's no wading pool, so this is all us holding her on the 4 ft end), she made a strange face, seemingly confused at the concept of being inside such a big bathtub.  But within minutes, seeing that both mom and dad were there with her, she warmed up to the concept. She started splashing, moving her legs, and smiling.  Big wide smiles as she looked at all the other kids playing in the pool.  I'm so glad we went, she had a wonderful time.  Didn't put her face in the water, or anything too ambitious, we just wanted to make her familiar with water.  I want her to enjoy being in the pool and the ocean.

In the end, we stayed for 35 minutes, much longer than anticipated.  And when we got back home, she zonked out for a nap within minutes.  What a great way to tire out an 8 month old baby. I expect we'll be going back many Sunday afternoons in the future.

I might be trying a new blogging style

I'm realizing that I'm not a good writer.  Not in the quality sense (though I am aware that my writing style would horrify my high school AP English teachers), but rather in the inspirational sense.  As in, I'm often not that inspired to sit down and blog.

Through the day, I have a constant commentary running through my head, and things I want to talk out, put down on paper/keyboard. But it's hard to find the time to finish a complete thought on the computer (specially now that one of my professional licensing exams is coming up).  But then I noticed that I'm very involved in the email threads for my mom group.  The difference?  Well, in addition to knowing in person most of the people in that group, it's also more of a Q&A environment. Someone has an issue and asks the group for feedback.  Sensing the immediate tangible concern, we answer our personal experience and what's working (or not working) for us.  There's an issue, there's something to write about.  None of this open ended essay-about-my-life trap I've been falling into with this blog.

So I've decided that I'm gonna pose certain questions to myself (most of which I will probably borrow from my mom group email threads) and answer them in this blog. Why here?  Well, it's hard to truly open up to fellow moms you know in person. At the end of the day, you don't want to look like the crazy mom who will still be dealing with diapers and rocking to sleep at age 8.  And since we are all so hard on ourselves, sometimes its hard to open up about how hard this really is,  or how intrinsically satisfying it can be.  At least it's hard to do it face  to face. Which is where a blog comes in, with it's layer of distance yet the promise of truth. 

Lets see if this experiment works.

Standing up

I am relieved that at 8 months, Cupcake is already standing on her own.  She pulls herself up, and then lets go of the raining and balances on her own two feet.  I mean, I don't really care if she's standing or still sitting from a holistic level (really, what's the hurry to walk, where does a baby have to go?).  But rather, if she's strong and shows lots of muscle control, they probably won't need to do full blood work at her next metabolic appointment.  At our 6 month appointment, our doctors decided drawing blood wouldn't be necessary because she could sit so well.  I'm hoping the next appointment goes similarly.  I just don't like my little baby girl getting blood drawn.  It's necessary, and I support preventative medicine, but it still makes me sad.

So far it seems MCAD has been kind to us.  One of the side effects we were warned about is decreased muscle development.  It seems it's not uncommon for kids with an FOD to have problems with their physical development.  So far, we haven't had any issues with delayed muscle control/strength.  Au contraire, Cupcake seems to be standing and reaching for things way ahead of schedule.   And for that I'm grateful.

Here a little secret, and I hope I don't ruin my good Karma by sharing it.  On New Year's eve, we played a game where you would write a wish on a piece of paper, then at midnight we all threw our wishes into the bonfire.  The usual superstitious shenanigans, and aren't those the best part of New Year celebrations?  I wished for no metabolic crisis.  At the time, Cupcake was only 3 months old, and we were terrified of what her diagnosis would mean for us during her first year.  I'm glad I made the wish; so far it seems to be working.  Maybe she would have been asymptomatic this far regardless, but the wish really stuck with me.  I wished with all my might that she be healthy, and that we would have the wisdom to prevent a crisis by feeding her.  I wished wonderful things for all the people that advocate for mandatory screening.

I know she could still get the stomach flu and need an ER intervention.  But with every passing month I feel more in control.  Our doctors said the first year could be the toughest, and I'm glad we're 3/4 of the way through.

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

Dealing with the heat

I used to live in Texas, land of 100+ degree summers, so you'd think I'd be used to the humid heat by now.  I think everything changes when you have a baby, including your own relationship to the sun and heat.

Namely, I'm getting concerned that Cupcake is not dealing well with the summer that decided to show up full force on Memorial Day weekend.  How timely of it, right?  My poor child is only about to turn 8 months, and after living through one of the coldest and stormiest winters on record, she is probably ill prepared for the sweat and discomfors that come with summer.  What am I supposed to do?

I am also incredibly paranoid about MCAD and excessive heat.  I wouldn't even have thought the two issues were related, but then there was an online discussion on our FOD support group.  Some parents were concerned that in summer, their otherwise energetic children/toddlers struggle with low energy levels and muscle aches.  Note to self: must stop reading the FOD emails; they only worry me and feed hypochondriac tendencies I didn't even know I had.  Nevertheless, is there a relationship between MCAD and problems with excessive heat?

Our doctors never told us anything about it.  Now, that doesn't necessarily mean there's no connection, as I'm well aware that MCAD and FODs in general are a recent diagnosis and doctors are still finding out what the disorder entails.  So I need to observe my baby, and see if anything seems out of the ordinary.

She gets little sweat beads on her nose.  Do all babies do that?  My instincts say yes, but it also wasn't that hot when these sweat beads started (last week was in the low 80's).  We are also having trouble figuring out how much to cool the apartment.  She's been waking up in the mornings covered in sweat (that's bad, right?), so we're now turning on the window unit at night.  But is the air blowing directly at her?  Should we keep the house really cool and still cover her?  The other night she slept with only a onesie and her feet felt really cold in the middle of the night.  Aaaaahhhh, I hate second guessing myself, specially because the MCAD makes me paranoid about her body temperature (Also, I still prescribe by the old fashioned idea that being cold gives you a cold, and I don't want her to get sick from the AC, since she FINALLY got over her stuffy nose.  What, it's not the cold air, it's people's germs?  Shut up!  You can't convince me that sudden changes in temperature don't contribute to getting sick.)  

Why would heat exacerbate an MCAD problem?  Our doctors have explained that high body heat means more calories burned, which means less time before the body is fasting.  However, this assumption is based on fevers, when the body is actively fighting an infection, and the heat is probably an exothermic reaction to the energy already being spent.  That made much more sense in my head.  So fighting infection = calories burned, with a side effect of high temperature.   If this is all vaguely accurate, then the body being overheated from the outside (as in the sun) shouldn't affect it's internal sugar levels.  Right?

As for muscle aches or weakness.  I can't tell if Cupcake is tired because, well, the heat will tire all of us, or if she's having a harder time.  We were practicing standing while at the park, (she loves standing) and her legs felt as strong as always.  She's still not crawling, but I'm convinced that has nothing to do with muscle weakness.  Some babies just never crawl, and she looks like she might skip it altogether and start walking.  I have to keep observing her.

So, since it's gonna hit 90 today, how much water do I give her?  I want Cupcake to be hydrated, but I also don't want her belly to get full and then don't drink as much milk, which has all the nutrients and sugars that she needs in addition to being a refreshing liquid.  Do I feed her more often since she's sweating?

What about at night?  She's waking every 3.5 hours right now, and I'm exhausted.  I'm ready to try a little tough love in order to keep my sanity.  (This is a point of contention with my husband, who would happily respond to every stir and fuss, which... he's more than welcome to do, but I just don't have it in me at night.  So, do I let him deal with it on his own, or do we need to have a more unified front?)  But really, could she actually be legitimately hungry/thirsty at night because of the summer temperatures?  And if I don't nurse her all those times, am I affecting her glucose levels?

I don't really expect answers to all this, but it's so confusing to be a parent.  For everyone.  I wish she could just tell me what she needs, if she feels achy, if she's thirsty, if her neck hurts from the heat rash.  But I doubt she's even wrapped her head around the sun being the heat source, so I guess I'll have to wait on her info.

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?

Stuffy Noses

It's normal, right? The stuffy nose issue?  Because right now we have the stuffy nose that will not go away. 

Some days it's better than others.  Today, for example, it's like a dripping faucet and it's all I can do to catch the snot bubbles are they explode out of her nose.  Then again, yesterday she was pretty good and we were able to attend a wedding reception.  I'm not too concerned over the ramifications of another mild cold, since Cupcake has proven to have an awesome immune system and doesn't seem too upset or debilitated by it.  The only aspect that really affects her is sleeping.  It seems the stuffy nose doesn't let her nap well, which results in having a cranky baby that seems always a little tired.

Actually, today I've tried an experiment.  After having two weeks of stuffy noses and nap-time being all over the place, I'm trying to figure out if she's cranky because she's not getting enough sleep, or if she's achy/sore, and that is causing her to both be cranky and unable to sleep.  It's a cause and effect issue, ya know?  So I've given her some Motrin this afternoon, and she's down for a nap, so far over a half hour.  I don't like medicating my child for no reason, but seriously, if she doesn't get some good naps in there, she'll be in no condition to fight whatever is causing her runny nose.  Medicine is your friend, I really believe that.  Additionally, Motrin isn't a sleep inducer, merely a pain reliever, so it wouldn't help her sleep on its own.

No fevers, though, so there's no concern of an MCADD crisis.  Just good ol' traditional stuffies.  It's still clear and runny, which makes me think it's not a cold... allergies maybe?  I've also heard some kids get stuffy noses when they're teething.  And if she's working on a tooth (it'd be the top one), it would explain soooo much.

Wedding Reception

Today we went to an afternoon wedding reception, the first time we've gone to a formal event as a new family.  I wasn't too worried, because it was an afternoon event, (as opposed to an evening full out gala), a nice party with food and drinks for all the people who weren't able to fly across the country for their actual wedding 4 months ago.

And Cupcake looked a-dora-ble!  I know I'm biased, but she was the cutest baby within a 10 block radius.  She had a white dress some Argentinian friends got her from a nice boutique there (so it has that wonderful handmade quality), and a white headband.  Usually I'm against headbands, and think the poor babies in them look like their head is split in two, but I take it all back, the headband really tied the outfit together.

Also, another gigantic milestone: I fit into my pre-pregnancy lil' black dress!  Just one of the many amazing things about breastfeeding, at least in my case I eat, eat, eat, and I keep losing weight.  I want to keep nursing her if only for the extra calories it burns (and the health aspects for the baby, of course, I'm not THAT shallow).

I don't know what the bride and groom's family must have thought about us, though.  We were the only people with a baby, we sat her at the bar while she was munching on apple slices, then put her on a baby carrier so she could nap while we still mingled, I drank wine, then we found a quiet side room and breastfed her (while still in my cocktail dress), then we danced around with her.  Did we achieve looking carefree and delighted with our own daughter, or were we those crazy parents that start the cautionary tales?  I don't want to find out.  We had fun, our friends were happy to have us there, and it was a wonderful afternoon.

At the end of the day, we are true attachment parents.  Our baby goes wherever we go, and as long as her needs are met (food, sleep, clean diapers), her entertainment can be following mom and dad around.  I think she had a blast, and the moment she began to be fussy I put her in her baby carrier so she could feel close to me and protected.

Lots of little things

It's been a weird week, with all the rain and us having the slight sniffles.  It's just enough to keep us home bound, only venturing nearby in the neighborhood and going a bit stir crazy.   I have nothing specific to write about; just wanted to do a general state of the union.

- On Wednesday we went a baby sing-along in a neighborhood cafe, and Cupcake LOVED it.  A few weeks ago we'd gone to check out a music "class" for babies (I have an entire rant on classes for 6 month olds, but I'll save that for another day), and she was wholly uninterested.  So we went to this sing along as a lark, since it was raining and it was only 2 blocks away.  Cupcake was mesmerized by the songs the entire 40 minutes, and I got to chat with some friends that had gone too.  Win-win for everyone.

- We've been battling the mildest and stubbornest of colds since last week.  It's just a stuffy now, that will. not. go. away.  Aaaargh!  Cupcake seems to be dealing fine with it, her mood is unaffected.  But it's messing up her sleep, since the stuffy nose will wake her up, and force her to spit out her pacifier.   All the wonderful progress we'd made a couple of weeks ago with her 1.5 hour naps?  Pretty much gone.  At this point we're back to rocking her to sleep.  I mean, anything to get the rest her body needs.

- I might be over-dramatic, but I went ahead and called her metabolic doctor for advice on what to do.  That's why they're there, right?  They told me to not worry about it if she didn't have a fever, but IF she got a fever, her new L-Carnitine dosage is 2.5 ml three times a day.  Man, I'm glad she doesn't take it everyday, or we'd be going through it like crazy.  They also reassured me that as long as she eats something every 2.5 hours, her sugar levels should be fine.  And yes, a snack of solid food does count.

- We've been having crazy naps all week because of the stuffy nose.  It seems the discomfort wakes up Cupcake before her sleep cycle is finished, so she's been waking up cranky yet unwilling to go down again.  I've been rocking her a lot, and it really feels like her sleep is regressing.  Isn't there supposed to be an 8 month sleep regression?  I really hope this is it.

- Cupcake is standing like crazy.  No longer happy just chilling on her butt, she must now stand at all time or else.  Which results in me having to be behind her at all times, because ma'lady hasn't figure out how to fall gracefully yet.  We've gotten her foam tiles for the floor (about time), and they look wonderful, but still, must watch her closely.  I have a feeling we're gonna skip crawling altogether, she's seriously ready for walking.  Any minute now....

- We might be working on another tooth.  There's nothing visible on her gum, but she's drooling like crazy.  Will it appear soon?  It'd be lovely if it could explain why she's having such disturbed sleep.

On blogging

I'm wondering what direction this blog is going, as I don't seem to be writing with as much fervor as the beginning.  It's always like that, right?

When I first started, I wanted a place where I could sort out all my thoughts and fears associated with Cupcake's MCADD diagnosis.  I was exhausting Nate with all my freak outs, my over analysis of her schedule, my tireless googling of information, and I wanted a safe haven where I could. Just. Vent.  Also, I began to realize that there were very few happy MCAD stories out on the internet, and I'd found barely two blogs that mentioned having a diagnosed child.  Actually, there were some happy stories on the FOD Support groups, but they were these paragraph long blurbs of kids that were still doing well (as opposed to the stories of children who had succumbed to undiagnosed MCADD).  I wanted to see blogs of people going about their menial lives, dealing with a metabolic conditions yet grappling with regular parenting decisions.  So I took Ghandi's advice (be the change you want to see in the world), and made my own blog.

Of course Ghandi was talking about much larger issues, and this is just me venting out on the internet, but a girl can dream, right?

Nate doesn't want me to use our real names or post pictures.  I understand where he's coming from, since it should be Cupcake's decision to share her medical information on the internet.  However, this places me at a slight disadvantage if I use this blog as a networking tool.  Other people post photos, and I feel like I'm being standoffish by not reciprocating.  Is this why I'm having a harder time building my own online community?  Or am I just not reaching out enough?  And do I even want to?  I feel strange commenting on people's blogs if I haven't met them in person, or reaching out to them when I'm withholding images of ourselves.  But I'm also not comfortable broadcasting personal information to the world.  I'm very private, yet I'm blogging.  How does that work?

I want to keep writing.  Even though as time goes on, MCAD feels less and less like a pressing issue.  Which makes me wonder if I should just make this a document of Cupcake's first years, or if I should stay within the filter of our lives through her metabolic condition.  Either way it's serving it's purpose.

I know some people are finding the blog from googling MCADD.  I hope this can help you see how our family is dealing with it, and how "normal" our lives can be.