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. 

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.

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?

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.

 

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.

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.

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 milk supply

I'll be the first to admit that we've been very lucky regarding breastfeeding.  Cupcake always had a good latch, and though it might have been painful at first, she always got the milk she needed.  And when you're told your baby can't go into fasting, that latter point is very important.  I also had a ridiculous amount of milk.  My letdown was forceful, and would spray people a couple of feet away, and I just has milk.  Oodles of it.

Ahhh, the early days.  I would pump just to relieve the engorgement, and we ended up with 15 extra bottles of milk in the fridge.  Things didn't settle down until about 2 1/2 months, when I still had tons of milk, but it was a lot more under control.

Luck.  Just luck.  Sure, we did our part, having Cupcake feed within an hour of her birth and feeding around the clock on demand those first couple of weeks.  But we also gave her a pacifier within a week (baby loooooooves to suck suck suck) and put her on a feeding schedule once we got her MCAD diagnosis.  I'm also bad at remembering to drink water and eat.

And maybe it's all catching up with me now?   I seem to be having some milk supply issues.  I don't know if I have a "problem" per se.  All I know is that Sunday night, at Cupcake's 10pm feed, I had no milk.  Nothing.  No let down.  Nothing was coming out.  And Cupcake is frustrated, crying, and refuses to keep sucking on an empty boob.  I freaked out, and Cupcake was crying, and it was horrible.  We ended up giving her the last bottle of expressed milk we had in the fridge.

I had all these fears of my body failing me.  Similar, in many ways, to how I felt my body let me down after the C-section.  I imagined all my fears of Cupcake going hungry, of having to switch permanently to formula, to having her reject my boob.  In reality, none of these are tragic, and 7 months is not a crazy time for a baby to wean to formula.  I just wanted to be more in control of that process.

 By the time I dream-fed her at midnight, after two hours of feeling very upset and down, I had milk again.  And the next morning my milk seemed to be back to normal.  Or normal enough to satisfy my baby.  So... I make milk again?  The what....?

I'm not sure what happened, but I have theories on the culprit.  On Saturday Nate and I had some wine, I forgot to stay properly hydrated the whole weekend, I'd worked out earlier that day (which, once again, hydration), my time of the months had just started that afternoon (blegh), and Cupcake is now eating solids, which is supposed to affect milk production.  This was probably a perfect storm of milk problems.

I know the weaning process starts with the first bite of solid food.  I know that as time goes by she'll need less and less milk.  It was just so scary to have no-thing come out.  I've been drinking water like crazy, so hopefully this won't happen again quite so dramatically.

Why I'm OK with MCADD - ammended

I tried to write a few days ago about coming to terms with the MCADD diagnosis, and it came out wrong.  I'm not a writer, so sometimes I share whatever is in my head and don't realize until days later how much like a jackass I sound.  You live, you learn.

I'm not glad Cupcake has MCADD, I'm so glad and thankful that she was diagnosed.  Thanks to that we will be able to hopefully have a healthy life, with minimal hospital visits, and keeping her disorder under control through careful food monitoring.  Because we know about it, she will be able to avoid fasting and hopefully lead a perfectly normal life, free of medical interventions, physical disabilities, and developmental delays. We want this to be but one of the many things that describes her.

I struggle a lot with how to deal with her diagnosis.  And I've reached a zen point where I am good with it.  Of course I wish she was completely healthy, free of genetic deficiencies.  But I'm realizing more and more that everyone has something wrong with them.  It could be MCAD, it could be allergies, chemical imbalances, weak immune systems, asthma, you name it.  Going through all this, specially the initial doctors appointments, has been a learning experience that's made me appreciate many things I used to take for granted.

It would be nicer if my internal realization didn't come at the expense of my child having a life long medical issue.  I am aware of that.  But nevertheless I am humbled by this situation, and thankful that I'm going through the process.  I think it's part of not believing in God, it makes me struggle sometimes with how I word my internal narrative into recognizable terms.

Why I'm ok with Cupcake having MCADD

I am strangely thankful that my child has MCADD.

It's a weird thing to say, but I think without this diagnosis I would not be as appreciative of all the positive things about my baby.  As I sit there frustrated some nights because Cupcake has woken up a fourth time to nurse, I can stop and be happy that I can hold her and nurse her.  I know that not everyone can do that, and I'm grateful for every moment I can spend wit her (yes, even those in the middle of the night).

Getting this diagnosis has exposed us to a world of families dealing with rare diseases, most of them much more debilitating and symptomatic than MCAD.  It's scary what's out there, and people cope with it the best they can.  Before MCADD was included in the New Born Screening, it had up to a 25% mortality rate, and was to blame for some SIDS cases.  Reading about all the parents who have lost a child is a sobering moment, and my heart goes out to them.

If Cupcake hadn't been diagnosed at birth, I couldn't possibly appreciate just how lucky we are to have a healthy child.  I marvel at the fact that she responds to me, that we don't need daily medications, that her future physical and mental development is not compromised, that she's not in current pain.  These are things that I would have taken for granted if she didn't have MCAD disorder. 

I know I complain about her sleeping habits, her foul smelling poops, her crankiness when I'm trying to get things done.  And I understand that being frustrated about these petty issues is a luxury.

Sometimes, when I look at how well she's doing, I am overcome with gratitude to all the people that fought (and are still fighting) for mandatory newborn screenings.  We've kept her from going into fasting, and are extra attentive during bouts of illness, and I'm not sure if we would have been so cautious had we not known about her condition.  She's going to be just fine, thanks to all those who paved the way.  I hope, as she gets older and I have more flexibility on my schedule, to give time and energy to the cause as well.

6 month MCADD appointment

I'm not a fan of doctors offices, in particular with specialists that tend to overreact and make my life dramatic.  But I couldn't be happier with Cupcake's metabolic team at Mt Sinai, though.  They are easy going, warm, and very reassuring. 

Cupcake is 6 months now, and she went for her mid-year appointment.  She's doing great!  No metabolic crisis so far (which we don't know if it's because she's asymptomatic, or because we've been diligent with her feedings; in either case, yay!!).  She weighs almost 18 lbs, and is tall for her age.  Which is unrelated to MCADD, but it's reassuring to know that she's growing rapidly.  Then the doctor played with Cupcake a bit, to get a sense if she could respond, babble, sit on her own, had a good grip, etc.  And of course she can do all those things!  So to our immense relief, they decided they didn't need blood samples.  Cupcake is hitting her physical milestones well, and is fat and growing, so there's no point in getting a metabolic breakdown at this point.

Also, we've been cleared to have her go 5 HOURS without feeding.  And another hour every month until we hit the 8 hour mark.  Our doctors here don't feel comfortable having her go longer than 8 hours until she's about two, mostly because her initial C8/C10 numbers as a newborn were really high (or was it low? whatever it was, it was not the desired amount, lol).  So now we have the luxury of sleeping one whole hour longer, and a baby that probably will not cooperate.  Whatever, I'm just excited to join the throng of parents that can complain about normal night wakings. And isn't 5-6 hours technically considered sleeping through the night?  Music to my ears.

The older cupcake gets, the less MCADD scares me.  She's 6 months now, she's eating solids and still breastfeeding wonderfully.  Her body is strong, and she's getting more and more antibodies as she's exposed to the world.  She's up to date with her vaccines.  She'll have stronger defenses to fight disease.  I know that with an FOD you're never out of the woods, but as she gets bigger and older it feels much more manageable.  My heart goes out to all my fellow mamas that had to take their weeks-old babies to the ER.  It must be very scary and you have my utmost admiration.

So now we are diving into solid foods, and our doctor told us not stress over it too much.  Keep nursing Cupcake at our normal times, and she will naturally take less milk as she eats more food.  It's easy during the day, when we can observe if anything is different.  The danger is at night, when we wouldn't notice if she's lethargic because she's sleeping, and we are too tired.  We were even told to not worry about her diet too much at this point, since she'll still be nursing and getting all her proteins from me.  We'll go back to see them in 3-4 months, once Cupcake starts taking protein and her eating habits shift to solid food.  At that point, we'll meet with a nutritionist to give us some tips.  But even then, it seems that as long as she's not fasting, MCADD doesn't require a strict diet.  Just make sure it's low fat, but that's what ALL of us should be eating anyway.

Babywearing an under-the-weather baby

If I wasn't enough of a baby-wearing fan, I can now add a new dimension:  keeping your sanity while your baby is sick.

Cupcake's had a cold, which I talked about on my last entry.   So, as anyone who's feeling yucky, she wants to be held more.  So I've been using our sling a lot, the same one I maligned before because it's on the big side.  The thing with this sling is that I can't take it outside, it just doesn't feel secure.  However, in the safety of home, when Cupcake wants to be cradled, its the perfect thing.

I'll just bounce on our yoga ball, and have her on the sling.  Sometimes she falls asleep on it, other times it's just not comfortable so I'll have to get her out and hold her on my lap on the couch.  The house is falling apart, but I could care less.  Cupcake is sick, and I want to make sure she's as comfortable as possible.  I mean, when I get sick, I like attention and hugs (really, I want my mommy).  So why wouldn't my baby be any different?

I've also been using the Ergo a lot, since she also naps on that.  The main problem is that she's been needing me to be moving-moving-constantly-in-motion. It's okay, it's what she needs.

We also hit a baby-wearing milestone, if you can call it that.  Yesterday, while she was sleeping on the ergo, I managed to successfully use the bathroom without waking.  I'm not sure if it was an inevitable turn of events, but I'm still amused that it happened.

So, yay for baby-wearing.  Not just for carrying the baby outside.  If it wasn't for my carriers, my arms would be falling off right about now.  I love holding her, but I can't wait until she's feeling better and wants to play on the floor again.

Today's sickness scare

I know that childhood illnesses are common.  My mom likes to joke that babies go from having the sniffles, to stomach aches, to growing pains, to teething, to having the sniffles again. (rinse, lather, repeat)  This doesn't make it any easier when they are sick, specially if you've been told your baby has MCAD and a common illness could land them in the ER.

We are currently going through Cupcake's third cold of her life. The first one was just a stuffy nose and dry cough that would. not. go. away.   The second was at about 4 months, and included coughing, stuffy noses and a slight fever.  We gave her L-Carnitine and were in touch with the Metabolic center, but it never got out of control.  Then we had this scare.

Actually, I don't know if we are fully out of the woods yet, as we are in the middle of the cold, but things seem to have stabilized.

After having a HORRIBLE night where Cupcake's coughs kept waking her up, she seemed to "wake up" around 7 am.  Now, this is ridiculously early for her, as her usual morning starts around 9:30 am.  Since she'd been waking and feeding through the night, I thought it was just another cold related issue and proceeded to feed her while lying next to her in bed.  She ate, things were normal, and then she projectile vomited all over herself, my pillow and the fitted sheet.  Gross.

Also..... the he!!?  I'd never seen so much partially digested breast milk in my life.  I didn't even know my boobs could hold that much liquid.   She calmed down after a couple of minutes and I set her on her stroller (her new favorite place to sit and play) while I removed the sheets and attempted to clean up.  Then, about 10 minutes later I tried to feed her again, and half way through she started to cough and.... she projectile vomited again, this time mostly on my pajama pants and the floor.

I'm usually not an alarmist, but man, this is exactly what her Metabolic doctor warned us about.

So I'm having a thousand thoughts a minute while I try to figure things out.... I have Mt Sinai on my contact list and have to call them..... where is our ER letter.... why isn't Nate back from dealing with our car battery.....  do I feed her? do I wait?  Does she have a temperature?   Do I have to go to the ER right NOW?   And if so, do I just take her on the carrier? Should I pack the stroller?  And where is my insurance card?

The Metabolic doctor called back and didn't really help my nerves.  Basically, they said to try feeding her one more time, and if she vomited again we should go to the ER immediately. I was in slightly hysterical tears at this point, and its a good thing Nate got home, because I was probably making Cupcake anxious. 

So I tried feeding her again, this time holding her head very high and very slowly.  After a couple of minutes, when she pulled off to breathe, Nate took her.  She cried, probably still hungry, but calmed down when he took her to the bathroom to look at her reflection.  After 10 minutes, when were sure the milk was staying in her system, I gave her a little bit more.  We did this 5 more time, and she thew a couple of more times, but this time we knew that at least some of the milk was staying in her system.

So we decided that she was okay.  I was still plagued with doubt.  Were we mocking the gods, playing it too close?  Since she had still thrown up, had she ingested enough?  Would we recognize when she became lethargic, and would it be too late at that point? 
I hate second guessing myself, specially since I tend to believe little colds are just part of the human experience.

We ended up going to our regular pediatrician, since Cupcake had a low-grade fever, who examined her and informed us that she did not have an ear infection or bronchitis.  In other words, just a cold, and the fever should pass.  At this point I allowed my body to finally relax, secure in the knowledge it wasn't anything serious.  It wasn't a major infection, it wasn't the flu.

She might still throw up again tomorrow.  Hell, we could still end up in the ER. But I think the worse is over.