Monday, February 25, 2013

Hi There!

Yet another smile from a healthy and happy little boy.
Yet another day that we are thankful for the newborn screening that saved his life! 

Saturday, February 23, 2013

Interesting Facts About Newborn Screening

We had another Consumer Task Force Call this week.  I love learning about the newborn screening system that saved my baby's life.  Here are some interesting facts that I wanted to pass on...

  • Over 4.2 million infants are screened each year, making newborn screening the most commonly performed genetic testing in the United States.
  • The Recommended Uniform Screening Panel (RUSP) included 29 core conditions when it was first recommended by a group of experts in December 2002.  All of these conditions have the potential to result in serious medical complications and/or death if not recognized early and all children benefit from treatment once the conditions are detected.
  • By February 2005, the RUSP became national policy and by December 2008, nearly all states were screening for many of these core conditions.  To see which conditions are screened for in your state, visit Baby's First Test!

Friday, February 8, 2013

Eleven Months

Here are some pictures of our very busy 11-month-old boy! The sign for this month was pretty much obliterated in the first 30 seconds of picture-taking. He has discovered that crumpling paper is lots of fun.

In the last month, we have hit some major milestones including standing and walking. He is, in fact, quite proficient at walking already since he started experimenting in earnest with it about 3 weeks ago.
There are also some new teeth to brag about. He has six now -- four on top and two on bottom -- which is excellent because he has completely sworn off baby food and only wants to eat food that he can mash between his teeth. He also thoroughly enjoys brushing his teeth, or at least chewing on the toothbrush.
We're starting to see much more of his personality, too. He is definitely an easy-going kid and he can sit for long stretches of time playing with toys and trying to figure out how things work. I'm always amazed at how kids learn by doing -- this ball fits inside this box, but Mommy's shoe doesn't; when I drop this toy from my highchair it makes lots of noise; when I try to eat the dogfood, Mommy comes running; etc.
Health-wise, it has been a great month. We have managed to stay healthy and avoid hospitals and doctors offices.  LB is still taking a daily probiotic supplement that I really think is helping him ward off the stomach bugs which so many of my friends are still battling with their kiddos. We're also still on a sort of self-imposed house arrest and have been avoiding crowds and otherwise germy places as much as we can so I'm sure that's helping us stay healthy, too.
We're curious what the next month will bring, especially considering that we are approaching the one-year mark where we will likely be switching off formula and onto milk, but he is still drinking quite a bit of formula daily (and jotting down ounces of formula is one of the easiest ways for us to track his food intake). We'll also be transitioning away from bottles, but again, he's still drinking a lot of bottles, especially at bedtime and during the night. I'm sure the metabolic clinic and our pediatrician will have lots of good advice for us when we visit them next month.
In the meantime, we are just as thrilled as can be with our handsome and happy little boy.

Saturday, February 2, 2013

Tracking Food Intake and Transitioning to the Next Stage

We have a notebook that lives on our kitchen counter.  It is filled with dates and times and ounces.  We know and have recorded every ounce of formula that LB has eaten ever since he was born. They pretty much make you keep track of feeding times (and dirty diapers) in the hospital and considering we found out about his MCADD on our first night home from the hospital, we never stopped tracking his feedings.  For awhile, we were writing them on a white board in our kitchen, but after a bunch of traveling this summer (sans whiteboard), we shifted to the notebook method. 

At times, I've felt like this is a bit over the top and that maybe we were being too rigid, but we also felt like it was important for us to track his food intake like this so that we could know for certain if he was falling below that "rule of thirds" (where the metabolic specialists say that eating one third less than he normally does in a day could indicate the onset of a problem).  When illness strikes, one quick look at the trusty notebook and it is very easy to tell his specialists that he typically eats 30 ounces per day and today he's only eaten 18, as opposed to wracking our brain and trying to piece it together during an already stressful time. 

Now, I fear that we've become a little too accustomed to it.  With the end of formula and bottles and easily measured food intake on the horizon, losing the notebook method has me a bit apprehensive.  Granted, we do not track his solid food consumption in the notebook, but we still have a sense of his intake for the day by tracking his formula intake.  Without that, will we know when he's not eating enough?  Anyone have any good advice for navigating this transition?