Back at the Keyboard!

All I can say is Wow!  I can't believe I haven't blogged here in an entire year!  I have many reasons for being absent.  Some are good reasons and, unfortunately, others are just lame excuses.  For the most part, I will blame my absence squarely on the statement that my life as the working, married, home-owning, full-time Mommy of two active and healthy little boys is busy and that's a good thing. 

I have admittedly struggled a lot over the past year with determining the appropriate content and direction for this blog. The older my son gets, the more concerned I have become about his privacy (both now and as he gets old enough to want his own online identity) and the less inclined I am to talk about the details of his day-to-day life on my blog.

In so many ways, his MCADD has moved into the background with each passing year.  Yes, we are still keenly aware that he has it and we never let down our guard when he is ill or acting out-of-the-ordinary, it just doesn't consume my thoughts day-in and day-out like it used to when we were sleep-deprived and feeding him every two hours.  These days, he is really just a normal little boy doing normal little boy things -- going to school, playing sports, climbing trees and rough-housing with his big brother.  He looks and acts like all the other little boys in his class -- skinned knees, dirty fingernails, superhero t-shirts and all!  In the absence of talking about all of the cute little-boy antics and the infrequent bouts of illness (that have become FAR more manageable than they were when he was a baby), I have wondered whether I should discontinue this blog altogether or whether I should simply come up with a new angle.

The good news is that I'm writing something today so I will not be discontinuing the blog.  In all honesty, the thing that has motivated me to continue writing here is your emails.  In the past weeks and months, I have gotten dozens of emails from other MCADD Moms from around the world who have happened upon my blog and reached out to me.  Some are just saying hello. Some are asking for advice.  But I can tell that for some of them, finding this blog is something they are truly and incredibly grateful for.  It gives them hope and helps them understand that they are not alone in this journey that can seem so scary and uncertain in the early days of a diagnosis. 

I will keep writing because that hope is exactly what I was searching for more than three years ago when I first got the news that my beautiful newborn had screened positive for MCADD.  My search for hope with this curious and rare diagnosis was why I started this blog and why I will continue it. Writing here was my therapy and I hope that maybe this blog will inspire you to blog about your experience with MCADD for others to find someday, too.  Then, we can spread hope together.  In the meantime, reading here might become part of your refuge and hopefully part of our collective mission to raise happy and healthy kids (who just happen to have this really rare metabolic condition).

Please bear with me as I try to figure out how best to keep blogging while keeping my son out of the spotlight.  He really just wants to be a little boy Superman and I love being his Mommy!

Snack Time!

 

Cheese and Crackers!

Playtime with LB

As we were getting ready for baths tonight, LB was playing in the bathroom sink with Thomas the Train.  He was driving Thomas around the lip of the sink and saying "Hello Thomas! Go Thomas!".  Then the train would slide into the sink and he would say "Uh-oh! Thomas in hole! Help Thomas!"  Then, his toothbrush would appear to scoop him out of the sink and he would say "Toothbrush SAVE Thomas!  Yay toothbrush!"

It was incredibly cute.  The same scene also played out with the bottle of handsoap saving Thomas - "Soap SAVE Thomas!  Yay Soap!"

Proof that kids don't really need that many toys in order to have fun.  It's pretty cool how he's already starting to use his imagination. 

LB Speak

LB is talking up a storm lately.  I've heard of kids with MCADD having speech delays, but this definitely hasn't been the case with him.  He's saying new things every day and is surprisingly understandable, even to people who don't spend much time with him.  He's getting so good at talking, in fact, that he's starting to create his own words.  For example:

M'uice (a portmanteau of More and Juice)
Pronounced:  Moose
Used in a sentence:  "Mommy, M'uice please!"

Y'o (a portmanteau of Yes and No) and sometimes N'yes
Pronounced:  Yo and Ni-yes
Used in a sentence:  Although he was cold, he was definitely having a lot of fun playing in the snow.  When I asked LB if he was ready to go inside, he was torn about how to answer, so he told me "Y'o." ("N'yes")

My favorite thing that he says (which he said for the very first time tonight as I was tucking him into bed) is "I love you Mommy."

An Ordinary Day

Watching Curious George.

 

 

Smiling for the camera.

 

Eating popcorn and watching Planes while Daddy watches the AFC Championship game.

Vacuum Cleaning Robots and Cute Little Boys

My husband (aka the best husband in the WORLD!), got me a vacuum cleaning robot for Christmas.  It has been the most wonderful gift because in addition to never having to vacuum ever again, I have suddenly realized that I have at least an hour more of free time each week.  Instead of lugging the vacuum through all three floors of the house at least twice a week (we have a dog and a cat and anything less than that has the whole family walking around covered in fur), I can work on my hobbies, squeeze in a workout, relax with a good book or (what I've been doing a little too much lately) following my little robot around while giggling and drinking a glass of wine. 

I have been running my vacuuming robot nearly daily since I got her, but I realized today that she's usually only vacuuming when the boys aren't around (when I'm working from home or after the boys go to bed).  Since this week was extra busy, I had forgotten to run her for a few days and I decided a Saturday was as good a day as any to put the robot to work.  I set her up to clean the upstairs pretty much as soon as the boys got up in the morning since they hardly ever play upstairs during the day.

We went about our day and I forgot that she had been cleaning upstairs until it was time for bed and the boys found her sitting in her charging base.  LB was attracted to the glowing green "CLEAN" button on her middle and he decided to push it.  She gives a little chime once her button is pushed and he thought that was pretty funny, so he kept pushing the button to hear it again and again.  When he got tired of pushing the button, he stepped away and since she was in the "ON" position at this point, she proceeded to back out of her docking station, spin around and start to vacuum.  This scared him to death!  He started wailing immediately, but was paralyzed in place, unable to run away from her.  I obviously went to rescue him, turned off the robot and he decided that he didn't want to push the button any more.

Then, his big brother appeared and was also attracted to the glowing green "CLEAN" button.  He pushed it and smiled as it started zooming around the room, already grilling me in only the way a preschooler can about what it was doing and how it was doing it and why it was doing it.  LB meanwhile made a beeline for the closet, yelling "Mommy, HIDE!!"

I went into the closet with him where he was alternating between crying and yelling - "Brother stop push buttons!" and "No push buttons!"

We turned off the robot and reassured LB that she wouldn't do any more vacuuming tonight.  Then, he proceeded to grab her virtual wall (it's a little do-dad that lets you break up large areas of the house to tell her where to stop cleaning) and throw it down the stairs where it sprang open and spilled the batteries into the foyer. 

I guess I'll continue to vacuum with LB isn't around.  His older brother meanwhile is begging me to take the robot to show and tell.  =)

Happy New Year!

What better way to start a new year than with a new year's hike for the whole family!

 

 

yes, the dog even got to come along.

LB's First Selfie

Family Pictures

We have a wonderful photographer who does a great job of catching kids with their happiest faces.  Here are some of my favorites from our recent photo shoot where LB was especially cute for the camera...

 

Brothers

Even though we have plenty of seats to sit in, these two always seem to want to sit in the same one.  Even though they can argue sometimes, these are the times that I know they love each other.

 

 

Happy Halloween

One Tired Boy

We have a little boy who is starting to resist taking naps.  Unfortunately, this is what usually ends up happening.  So very, very tired!

 

Nineteen Months

 

We have lots of trees and more than our fair share of leaves.  We dedicated a good portion of this weekend to jumping in them and here is our champion leaf-jumper.  He was like the energizer bunny running from pile to pile, throwing them in the air, burying himself in them, etc.  Fall has got to be one of the funnest seasons for 19 month old!

 

And, speaking of being 19 months old, here are some of his talents:

• We have made great strides in the food throwing department.  Took his plate away when he started throwing food and viola!  Problem solved!
• He is talking up a storm!  We are getting multiple new words each day and he is so pleased with himself when he realizes that he is saying the right word to get what he wants.
• He can jump -- literally feet leaving the floor jumping already.  Incredibly cute.
• He loves sports.  If you give him a round object and a stick-like object, he can do just about anything - baseball, golf, tennis.  I predict that he's going to be our athlete.
• He is starting to ask for specific books by name and he remembers which pictures are in which books.  He'll say "baby," go get a book off the shelf and turn to the page with the picture of the baby. 
• He knows our routines and thrives on them.  In the morning, he gets up, gets dressed, eats breakfast and as soon as he gets out of his booster seat, he's running for the stairs saying "teeth, teeth" because he brushes his teeth upstairs after breakfast.  He also know that when I pick him up from the sitter, we head to his brother's school to pick him up.  The whole car ride, he's saying his brother's name and "school."
• He is starting to develop favorite clothing.  He loves his fleece pajamas and often refuses to take them off in the mornings.  He also has a shirt with a gorilla on it that he will dig through his drawer to find or extract from his dirty clothes hamper and beg to wear again.
• He still loves to snuggle, especially in the middle of the night with mommy.  He isn't eating at night very often (although we keep some boxes of shelf-safe milk in our room in case he does get hungry at night), but I think he still likes the familiar and comfortable snuggling of nighttime.  Although I never thought I'd say this during those early months when we were waking up every two hours around the clock, by the time we got to the stage where we are now where he may not wake up at night looking for you anymore, I'm realizing that I'm really going to miss those snuggly middle-of-the-night moments with him.  That was when we really bonded and I'm going to miss waking up with him now that he's big enough to sleep through the night.

Toddler Talk

Me:  LB, what do you want to eat for breakfast this morning?

LB:  THIS! (pointing to the snack area of the counter where we have various crackers, chips, fruit, etc. stacked about)

Me:  You want animal crackers for breakfast?

LB:  NO!  THIS!  (still pointing)

Me:  What are you pointing at?

LB:  THIS!

Me:  You want potato chips for breakfast?!

LB:  Yes.

Me:  Sorry, buddy.  We don't eat potato chips for breakfast.

LB:  PLEASE?


I love that we can hold a conversation with him now  =)

Business Travels

I used to love traveling for work, but now I almost dread it.  I really hate being away from my boys and coming home has turned into my absolute favorite part of a business trip -- I love unpacking my suitcase and turning around to find my two favorite little boys stowed away in it.

 

 

It was a nice trip -- flew out on Monday, flew home on Friday and logged a few hundred miles on a rental car between two states in between.  I arrived home just in time to snuggle my boys and tuck them into bed, ready to start the weekend. 

 

I managed to miss a pretty spectacular week here in Colorado with all the rain and flooding.  We are soggy, but not flooded.  It's ironic how we have been praying for rain to end the drought (which was causing all these really devastating wildfires for the last two years and sidling us with watering restrictions and enormous water bills despite our efforts at conservation) and Mother Nature thought it would be nice to pay up in  three days time with enough rain to last a whole season.   Be careful what you wish for, I guess.

Three Peas in a Pod

What started off as ONE boy drinking from the sprinkler...

 

 

quickly turned into TWO boys drinking from the sprinkler...



 

and then THREE boys drinking from the sprinkler.

 

Best backyard sprinkler picture ever!

Stunt Man in Training

 

No caption necessary.

Mischief

Didn't I just mention how fearless this little boy is?

 

Although slightly paranoid about him falling and hurting himself, mostly I'm just grateful that he's a normal little boy (most of whom are part monkey anyway!). 

Fifteen Months

It has been a few months since I've done a monthly update, but there's so much going on in LB's life right now, I couldn't help but give a little update.

Other than a couple typical toddler runny-nose incidents that were snotty and messy, but didn't seem to bother him one bit, he has remained 100% healthy.  Hooray!

We're starting to get a lot more words.  I read a few articles that mentioned children with MCADD can have speech delays and since LB wasn't really talking at all, I was starting to wonder whether I should ask the pediatrician about it.  Then, all of a sudden, we went from a vocabulary of "this," "that," "yes," and "daddy" to a whole lot more words -- ball, catch, dog, juice, night-night, mommy (hooray!!), kiss, and probably a few others I'm not remembering right now.  In any event, I'm a whole lot less concerned about his speech than I was a month ago. 

He is definitely a boy on the move!  He has been walking since January, but is very adept at it now.  He can walk/run easily on all surfaces and doesn't trip and fall all that often anymore (this makes me happy because one of my least favorite things is when my boys face-plant on the concrete - it just makes me cringe to watch it and not be able to stop it).  He is also discovering climbing and can successfully work his way up onto all sorts of high furniture - the kitchen table, the couch, the beds.  He has also figured out that if he can't get up onto something, he can always go grab the step stool from the bathroom (the one his older brother uses to reach the sink) and set it beside the item he'd like to climb -- voila! 

His favorite toys right now are all things sports. He loves all types of balls -soccer, foot, basket, base, bowling, golf, etc. - along with all the long sticks that accompany them.  He can swing a mean golf club with pinpoint accuracy on your shin.  He can play catch with us for 15 minutes at a time and not tire of it one bit.We are convinced that he is going to be our sporty kid because he is literally obsessed with this stuff.  Thankfully, I've been very encouraged by stories of families with older MCADD kids who are successfully able to participate in sports, so the thought of him playing a sport doesn't make me as uneasy as it used to.

He also loves dancing and will bop along to music.  He loves books and brings them to us one after another, happily pointing at the pictures and nodding along to the parts of the story that he apparently agrees with most.  He gives the most wonderful drooly open-mouth kisses while saying "muuuuaaa!" that absolutely melt my heart.

With all of his activity, I'm very grateful that he is eating well and enjoying a wide variety of food. One of his favorite meals is our family's tradition of Saturday morning oatmeal pancakes. He also loves things like cottage cheese, apples, PB&J, pineapple, macaroni and cheese, butternut squash, meatballs, just about any recipe for chicken, tortillas, hummus and lots of other fruits, veggies and grains.  

We've figured out a good bedtime snack system that's working pretty well.  Since our dinnertime is usually pretty close to bedtime, it was hard for us to get him back into the highchair for a sit-down snack so soon after dinner at a time when he'd much rather be romping around with his big brother.  So, now we're giving him a sippy cup of whole milk and a snack cup about a half hour before his bath that he can carry along with him during the romping. The snack cup contents vary, but it's usually some kind of whole-grain cereal or crackers (cheerios, graham crackers, peanut butter sandwich crackers, belvita breakfast wafers, etc.).  He'll drink and snack pretty happily, but at the point that he starts spitting the crackers out, we know that he's full to the brim and we don't force him to eat any more. However, we will hold onto the sippy cup of milk and let him drink that as we're reading his bedtime stories (the last step of our bedtime routine before lights out). 

We have officially weaned him off of the bottle during the waking hours, but he will sometimes have a small 4 oz bottle of toddler formula when he wakes up hungry at night.  During most night wakings, he will soothe himself back to sleep within a minute or two, but on the nights where our evening routine was a bit off (which happens to every family from time to time), or nights that we know he didn't eat as much of his dinner and/or bedtime snack as he normally does, we'll happily mix him up a quick bottle when he wakes (we keep the can of formula in our room along with a pre-filled bottle of water). If his fussing lasts longer than a minute or two, it's usually cured quickly with a small bottle. Sometimes he'll drink it all and be satisfied and sometimes, he'll only drink a few ounces before pushing it away and snuggling back into sleep.

Sleeping has really improved in the last few weeks, too.  About a month ago, he had slept through the night a total of 5 times, but now he's sleeping through the night much more often - at least 2-3 nights per week.  He's been working on cutting some molars, so that might actually be factoring into the sleep disturbances more so than the poor sleep habits we've established through his first year MCADD feeding schedule.  I have friends with children of similar age (not affected by MCADD) who are experiencing similar night restlessness due to teething, so it makes LB's sleep seem much more "normal."   

All in all, things are going great and we're excited for all the fun we'll have this summer!

Superman

While I'm in DC for work this week (yep, you're counting correctly, I was out of town last week AND I'm out of town again this week), the boys enjoyed playing in our new tent.  We got it for free and so far it has been a huge hit.  I'm excited for when we can start family camping trips.  LB is starting to sleep through the night here and there, so I'm encouraged that camping trips will start feeling manageable very soon.

...and don't you just love little boys wearing superman shirts with capes?  He really is our little superman!