Saturday, April 20, 2013

Family Pictures - Part 2

The family pictures were also LB's1-year birthday pictures, too.  Here are some pictures of our sweet, healthy, happy little boy for his very first birthday!

Saturday, April 13, 2013

Family Pictures - Part 1

Ever since we moved here, I've always wanted to get a family picture taken at Red Rocks.  It is quite possibly one of the most beautiful geological features on earth and we have made lots of family memories there.  My husband took me to a Norah Jones concert there for my birthday, we walked up from the lower parking lot to the top of the amphitheater when I was nearly 9 month pregnant with our oldest son and I felt so strong and so accomplished afterwards that I told him that we should do the same walk every time I'm 9 months pregnant.  With LB, we barely squeezed in our walk because I went to my 38 week appointment and found out I was already 5cm dilated.  We stopped for milkshakes and then hurried over to Red Rocks for our trek up the stairs.  We were headed for the hospital only a couple hours later - whew!

Anyway, all this to say, that this place is now a part of our lives...and thanks to a really cool local photographer, it's now part of our family picture collection!!

Here are the pictures from the amphitheater...

More to come.  Stay tuned!!


Wednesday, April 10, 2013

The Thin Line

I often struggle with that thin line between over- and under-reacting to LB's illnesses.  I think most parents of children with metabolic disorders probably do the same thing.  When it's something like vomiting, we know exactly what to do and react decisively, but when it's something more subtle, we tend to waffle, not wanting to overreact and subject our kiddo to unnecessary medical intervention, but also not wanting to under-react and possibly wait too long to bring something to the attention of doctors, thus putting him in danger.

With our older, unaffected child, there would be no question that the runny nose, coughing and fussiness currently being exhibited by LB would be interpreted as your average, run-of-the-mill symptoms of a cold, probably with some teething mixed in.  We would give our unaffected child a cup of juice, a popsicle and some tylenol and chalk it up to those inevitable parts of childhood - colds and teething.  However, when LB starts into any illness, I'm always second guessing myself.  Should we go to the pediatrician just in case?  Is this something that we need to catch early to prevent it from turning into something that would put him in the hospital? 

As he was crying inconsolably for nearly two hours last night, I was ready to call the doctor, head to the ER, anything to relieve his discomfort and make sure that he was OK.  We had given him the appropriate dosage of tylenol and ibuprofen throughout the day yesterday, including right before bedtime.  He had been a picky eater earlier in the day and we thought that the pain relievers would quell the teething discomfort enough to keep him eating.  They did and he ate a great dinner and a respectable bedtime snack before peacefully drifting off to sleep about 7:45 p.m.  It didn't last long, though.  By 8:45, he was in full blown hysteria and we could not seem to help him calm down.  After nearly two hours of rocking and walking the hallways and running a hot shower to get some warm steamy air into his congested nose and more walking and more rocking, it was time for another dose of ibuprofen and my husband also thought to pull out the orajel, too.  It worked like a charm and LB was back to sleep for the rest of the night.  What a relief!

This morning, again though, I was worried.  We followed our normal morning routine right up to the point of almost walking out the door before I put on the brakes.  LB was stuffy and coughing almost to the point of vomiting and I just didn't feel right sending him to the sitter, even though she told us it was fine.  His runny nose was the exact same one that her grandson has (he and LB are only 2 weeks apart in age and have so far seemed to do the teething thing as a team).  My gut told me to take him to the pediatrician just to be sure it was only a cold and teething and not something like an ear infection or strep throat that would require an antibiotic. My husband also tried to convince me that he was fine, but I needed to be sure and a quick trip to the pediatrician this morning would confirm that for me -- HE IS FINE!  He's got a bit of a virus and he's teething.  The pediatrician told us to keep up the regimen of tylenol/ibuprofen as his symptoms dictate, along with some benadryl.  She also said to use nasal saline 10 minutes before meals to loosen the mucus and allow him to eat more easily. He should be feeling better in 5-7 days...hopefully with two new teeth to show for it!

We did end up calling the metabolic clinic tonight, too.  Although he has been sucking down liquids like crazy, LB's food intake was pretty poor all day.  They assured us that as long as he's acting normal and he's drinking, he's getting calories and is probably just fine.  They suggested that we might want to wake him tonight for a feeding to give him a little boost, but that there wasn't any need for polycose or other intervention unless he stopped drinking.

So there it is, another lesson in parenting a child with MCADD - he's probably just having "normal" kid symptoms, but it never hurts to have it checked out...especially, if the same inconsolable crying thing happens again tonight.  This time, I'll have the peace of mind to realize that it IS just a cold and it IS just teething.  As long as he's eating well, this too shall pass.

Monday, April 8, 2013

You Too Can Become An Advocate!

For those of you who are looking for a way to help support newborn screening in the United States, here's an advocacy opportunity for you!

The March of Dimes has helped to put reauthorization of the Newborn Screening Saves Lives Act in front of Congress for a vote.  You can follow this LINK to the March of Dimes' advocacy page and submit a form letter to your representatives to encourage them to support passage of this legislation.

From their website:
Today, Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) introduced the Newborn Screening Saves Lives Reauthorization Act (H.R. 1218) – legislation that renews critical federal programs to ensure all infants receive comprehensive and lifesaving newborn screening. 

For the past half-century, virtually every one of the more than 4 million infants born in the United States has undergone newborn screening. Screening detects conditions in newborns that, if left untreated, can cause disability, developmental delay or even death. Approximately 1 in every 300 newborns in the United States has a condition that can be detected through newborn screening. No child should suffer or die when that can be prevented with these simple, cost-effective tests.

The Newborn Screening Saves Lives Reauthorization Act extends federal programs that provide assistance to states to improve and expand their newborn screening programs; support parent and provider education; and ensure laboratory quality and surveillance for newborn screening programs.
When you take action, please feel free to customize your letter with your family’s personal experience with newborn screening. It’s important for members of Congress to hear that these tests are valued by families for both the health information they may deliver and the peace of mind they give to families whose babies are given a clean bill of health.

This year marks the 50th anniversary of newborn screening in the United States -- urge your Representative to ensure all babies continue to receive critical newborn screenings by asking them to cosponsor the Newborn Screening Saves Lives Reauthorization Act (H.R. 1218) today!

I hope that you will join me in supporting this important legislation!  The process is very simple - click on the "Take Action" link, fill in your name and address (to help the system locate the appropriate representatives for your location) and contact information and click submit.  You can also modify the form letter to make it more personal.  I was sure to mention in mine that I am the grateful parent of a child whose life was saved thanks to newborn screening!

Sunday, April 7, 2013

TIP - Car Seat Sticker and Emergency Preparedness

Do you have one of these on your child's car seat??

If not, you really should!  Stickers are available at most hospitals and fire stations.  You should be sure to update them as information changes (new emergency contact info, etc.) and as children change between car seats (i.e. LB is now using the car seat that his older brother outgrew so I had to change the info on the sticker to reflect his information and not that of his big brother).

At our most recent metabolic clinic appointment, they gave us some new carseat stickers since he has recently moved from the baby bucket seat to a regular (albeit still rear-facing) car seat.  I was curious about whether first responders are trained to look for these little stickers, so I called up our local fire department to ask about them.  They confirmed that in a severe accident, it is standard procedure to extract children from vehicles using the car seat to stabilize them (meaning a bright flourescent green sticker would be easily visible to a first responder).  In incidents where parents are unable to speak for their children, it is also standard procedure to look for a car seat sticker that will provide them with information on the child.

In addition to the car seat sticker, we also carry a red emergency envelope in the glove compartment of each of our cars containing the most recent copy of LB's emergency room letter and a list of emergency contacts.  This way, when we are rushing to the ER or if we ever have to go to the ER without a chance to go home and pack first, we don't have to fret about finding his emergency letter, it's always in the car!  I noted this on his car seat sticker, too - "check glove box for emergency letter" - just in case it expedites his care before the first responders are able to contact the metabolic clinic on-call physician.

At the appointment, his doctors also urged us to get a medic alert bracelet for LB, so that if we are ever unable to speak for him, those who attend to him will know that he has MCADD and that they should contact his clinic for instructions on how to care for him.  They suggested that the bracelet read - "Metabolic Disorder, MCADD, Needs Glucose, Call Metabolic Physician On-Call ###-###-####". 

So far, no luck on finding a medic alert item that would be appropriate for a one-year-old, but I'm still looking.  Once he gets older, there are lots of medic alert jewelry options (braceletes, anklets, necklaces, etc.), but if anyone has anything that they have used for little ones, I'm excited to hear about them.  Feel free to comment with your findings! 

Saturday, April 6, 2013

Sleep Update

Since the last update, LB has slept through the night two more times -- a total of 3 times in 2 weeks!  Each time, it has gotten easier as I have become more confident that he is, in fact, OK!  I haven't been waking every few hours out of habit.  I'm actually sleeping through the night right along with him - something that we haven't done for more than a year (once you add in those last few weeks of pregnancy when your bladder won't allow you to sleep through the night, it's probably more like 15 or 16 months since I had a full night of sleep - wow!).

I don't want to jinx anything, but the fact that within one month of getting the green-light to allow him to sleep through the night, we have already had 3 full nights of sleep is pretty cool.  I'm excited to see how things go in the next month.  I will keep you updated!