Wednesday, April 9, 2014

TIP - Medical Alert Bracelet

LB's metabolic physicians have recommended that he wear a medic alert bracelet nearly since his diagnosis (at 3 days old when a car seat sticker is about as good as you can do in the medic alert department), but we honestly had trouble finding something that was appropriate for a little kid for a very long time.  Always wanting to be prepared for a situation where others need to be aware of LB's medical condition and when we may not be able to speak on his behalf, we kept looking and ended up settling on something that I have used for a long time as a marathon runner and triathlete (don't be too impressed, I haven't done much training in ages, but it was a fun hobby pre-kids)  -- Road ID!  Although they are made primarily for athletes, the selection and sizing has been great for our purposes, too.

There are a couple options that work well for little kids and there are a lot of options for older kids and adults:

Option 1 - A Shoe ID - you just Velcro it onto their shoe and you don't have to worry about it irritating their wrist or being much of a distraction to them.  Hopefully they manage to keep their shoes on, but not a bad option for a toddler all things considered.

Option 2 - A Wrist ID Slim - it's made out of silicone and resembles the bracelets that a lot of people wear for fun, but it is available in sizes as small as 5" to fit the wrist of a toddler.

The laser-engraved tags can be modular with different items and larger sizes of bracelets as your child grows.  You can also order just the tag and not the whole bracelet/shoe clip/etc. for times when your emergency contact information might need to be tweaked, but the bracelet/shoe clip/etc. is still in fine shape.  I actually still have my original shoe ID Velcro bit even though I have ordered at least 3 new tags as I've moved from place to place.

The metabolic clinic suggested that the bracelet read - "Metabolic Disorder, MCADD, Needs Glucose, Metabolic Dr. On-Call ###-###-####" and we got the color red to make sure it was very visible.

The best news of all?  They are having a HUGE SALE THIS WEEK!  If you're wanting to check this important item off your to-do list, there's no time like today!

Saturday, April 5, 2014

Happy Birthday LB!

Guess who turned two??
LB did!! (see how excited he is for birthday cake?)
And here he is digging into his presents.  He got a great set of tools, some new books, a ball and mitt and bongo drums!

Over the weekend, we had his friends over to celebrate with us.  We had a wild idea for a digging in the dirt party and we waited until the last minute to send out the invitations because we weren't sure the weather would cooperate.
Lo and behold, we had a beautiful day for an outdoor party, so the construction site was erected!  Some cones, a big tarp and five bags of topsoil (that we were going to need to add to our garden anyway this season) later, we had a party!

The cupcakes were chocolate/chocolate and topped with crushed Oreos to look like dirt and all the kids were issued a cupcake and a construction hat before getting turned loose in the dirt pile.

They dug and played with gusto.

And I'm happy to report that there wasn't any dirt throwing or dirt eating to speak of.

And most of the dirt stayed on the tarp, too.

He got some fun presents from his friends - a Star Wars t-shirt, lots of cool bubble wands, a set of golf clubs, some books and a John Deere Tractor.

After a couple hours, kids started to head home by way of the wash station...

...and our boys spent the rest of the evening playing in the dirt and helping us put away the party stuff (LB spent a lot of time climbing on the coolers).

What a great way to celebrate a great two-year-old!  Happy Birthday LB - we had a great year!!!

Thursday, April 3, 2014

Newborn Screening Saves Lives Act - UPDATE!!

This afternoon, the House Energy & Commerce committee passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2014.  It has strong bi-partisan support and is now one step closer to being signed into law!  Next steps are a vote by the full House of Representative and a vote by the full Senate before it ends up on the President's desk for signature. 

Read more details about the bill in the Milwaukee Journal Sentinel.

And kudos to APHL, the March of Dimes and the Milwaukee Journal Sentinel, among countless others who have been advocating tirelessly to reauthorize the Newborn Screening Saves Lives Act.  The work you are doing will help newborn screening continue to save lives.  THANK YOU!

Friday, March 14, 2014

Sick Day

We've been really fortunate to stay so healthy this last year.  Other than a mild cold that worked its way through the family in the fall, we haven't had any illness to speak of since LB's string of hospital stays last year around the holidays.  Unfortunately, our luck ran out this week when LB came down with a mild stomach bug. 
He woke up around 4 a.m. on Wednesday morning with a stinky, leaky diaper and after we got him (and his bed) all cleaned up, we immediately launched into his sick day protocol of hourly calorie-rich polycose mixed in Pedialyte and carnitine supplements.  Not sure where this illness would land us and for how long, both my husband and I stayed home with him on Wednesday. We packed a hospital bag expecting to end up there at some point that day, but after being in touch with his specialists throughout the day and carefully monitoring his intake, we were pleasantly surprised to be permitted to weather this illness at home.  They said things would get easier as he got older and although it was pretty stressful to stay on top of his feeding regimen, we were super excited to be able to manage him at home for once.
By Thursday, he was doing a lot better, but he still wasn't ready to go back to the sitter. I had some out of town guests visiting the office for a meeting, so my husband took sick day duty with LB.  They had a good day and he continued to keep his intake within the guidelines, so all was well.
By Friday, he was still doing fine, but we wanted to keep him home one more day and through the weekend to be doubly sure he was going to stay on track.  I stayed home with him today and we had tons of fun.
Pretty much as soon as my husband and our older son closed the garage door to head to work and preschool, LB wanted to wear his big brother's Iron Man costume. 
Then, he wanted to paint.

Then he wanted to play outside.

I could get used to this staying home with the kiddos thing.  I had a blast!  I think LB was a little tuckered out, though.  Shortly after this photo, he went down for a much deserved nap.

We're very grateful that he got well so quickly and managed to stay out of the hospital.  It DOES get easier!!

Monday, February 24, 2014


The Milwaukee Journal Sentinel's investigative report about newborn screening timeliness has won the prestigious Selden Ring award for the top piece of investigative reporting for the year!  Although I'm definitely biased because our family was featured in the story, I think this series was profoundly important and well-deserving of all accolades that it receives.  I spent nearly six months talking to the reporters and was able to witness first-hand how much work went into telling this story.  The video on their article from last week about the win, also describes the reporting process. 

How the Big Boy Bed has Revolutionized Our Sleep

I've been sitting on this blog post for awhile, almost afraid to post it because I don't want to jinx the unqualified success of LB's transition to the big boy bed.  Now that it has been nearly 3 months and he's still sleeping through the night -- yes you read that right -- HE IS SLEEPING THROUGH THE NIGHT!!!! -- I thought it would be safe to post this.
Just two nights before Thanksgiving, LB figured out how to climb out of his crib.  He was 20 months old at the time, a few months younger than when his big brother accomplished this feat, but in our house, once the baby can climb out of the crib, the big boy bed becomes a necessity.  I'd rather throw some pillows on the floor next to the twin bed than have any crib-climbing related injuries on my conscience.
We weren't exactly prepared for this to happen so quickly, but we decided to roll with it.  Thankfully, we already had the twin bed and mattress he would be using.  We just needed to move that into his room, do some rearranging and get him a new dresser.  The process started first thing in the morning.
LB was pretty excited about the whole thing, especially the disassembly of his crib... 
He helped us carry the crib pieces out of his room.

He cuddled up with his big brother for a little snuggling on his new mattress.

And he was the first one to climb into his bed once the new sheets were on (I wanted to decorate his room in a sports theme and I hit the jackpot when I got the very last set of twin-sized flannel sports sheets at Kohl's).

He immediately snuggled onto his pillow and smiled. 
That night, we put him to bed and he did great.  He was anxious to sleep in his new bed and he slept all night long. Didn't wake up once and didn't get out of bed at all.  I woke up refreshed and rested and only a little bit nervous about how long he had slept (11 hours, which is totally within his 10-12 hour limit).  He has proceeded to sleep through the night just about every night since. 
Sometimes he'll stir at night and yell out for me.  I'll go in and untangle him from his sheets or re-tuck him in and he'll drift right back to sleep.  Usually, he says "thank you, Mommy" when I do.  Most nights, he just sleeps, though.  It's incredible. 
We've waited nearly two years for this to happen and now that it has, I feel like we've reached another milestone in our MCADD journey.  It is nice to know that he's getting a good night of rest because I know his body needs it.  It's nice to be able to put him to sleep and not worry about sleeping through a feeding alarm because I'm so tired that my body won't listen to them anymore.  The whole family is getting rest and we are one happy household now that we are meeting our sleep quotient.  We're even making up for the lost sleep of the last two years.  Hooray!!