Monday, July 23, 2012

4 Months, growing + the big Sleep(less) Study

July has been a busy month for Leo, and last week was no exception. He's been plugging right along with therapy visits, and even making headway with some milestones. Like one biggie - grabbing at and holding on to things.  Like his own feet!  SO utterly adorable. But then, I am a little partial...

Speaking of last week, it was Leo's 4 month checkup. Can we please slow him down already?! It was a good visit, other than the shots and fever that goes along with those. He's holding steady in the 50th % in length and 25th % in head circumferance, but his weight dropped from 25th to 20th % (at his whopping 13.1 lbs).  While 13 lbs sounds like a lot (and yes, we should be thankful that he's even measuring anywhere on the "typical" pediatric chart at all ...having DS), let me impress upon you how much smaller he is than our first two kiddos.  For example, Seth weighed over 13 lbs at his TWO MONTH check-up.  Both Seth and Meris were in the 90th % of weight by 4 months (and over that for length...) so it's a little strange for me to have a "littler" one!  But he's growing somewhat steady, and for that we're thankful.

The other two big topics of discussion for the 4 month check-up were (1.) the flattening on the right side of his head, along with mis-shaping of his forehead, which is now considered moderate, and (2.) the seemingly neverending heart/apnea monitor coupled with the sleep study that's been pending for several weeks now.

Plagiocephaly is the diagnosis for Leo's head.  It's pretty common, and I'm sure you've all seen the little ones wearing the "helmets".  Some babies are affected more easily and Leo seems to be one of those.  We've been trying to redirect him toward the left side for over two months now with no success, so he's scheduled for an appointment with Cranial Technologies on Tuesday to see about a "DOC Band"... or as we like to call it, a Superhero Helmet. 

As for the heart/apnea monitor, neither the pulmonologist nor our pediatrician feel comfortable giving an "end date" for using it.  In fact, after reviewing the data downloads Dr. London saw that Leo has actually been having apnea along with bradycardia (low heart rate). I did my own research when this began and found that those two combined put him at risk for something more significant.  Of course I tried not to think about it, because what's the use in adding unnecessary extra worry?  Even so, as we discussed things at his 4 month checkup Dr. London finally said the words out loud that I've been avoiding "...the risk of SIDS." Even though we're beyond ready to be done with this nuisance of a monitor -- because believe me, it's not cheap! -- the bottom line is that we're blessed to have it there to alert us when he has issues.  Weeks will go by with no alarms, Leo looks and acts healthy, and I think "he's doing great, does he really need this?" Then a night comes along like last night, with both apnea and low heart rate alarms, and I'm reminded once again that it's quite possibly our saving grace.  With the issues continuing even once in a while, we moved forward with the sleep study which we're hoping could provide some extra insight.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

So last Friday, with about 3 hours notice (he was put on a standby list in order to get him in more quickly... since the wait time for sleep studies is running about three months out!), Leo and I headed to Children's Medical Center for our little adventure.  We'll be waiting about 2 weeks for the results.  In the meantime, here's a glimpse at our adventure:

So many leads to stick on, but what a trooper!

Sensors in the nose and the bandage cap were
 a little more than he could take...

Soon, he started to settle in for the night.

Finally getting some sleep, but lots of tossing and turning. Especially for Mom!

And the next morning, a "sleep study hangover"...!

A little teaser for the next post coming your way, and a sneak peek at what Leo was up to yesterday...

More to come soon!!

With Love,



  1. I'm impressed he could sleep at all with those things all over his tiny head!! No way I could do it. He's quite a trooper. Have I mentioned lately how adorable little Leo is??

    1. Aww, thanks Tiffany! I think he slept due to exhaustion, really! Still waiting on results...

  2. "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

    I think I was meant to read that today, thanks for sharing. Thanks for sharing Leo's story, you write beautifully & I hope that someday if not now you are encouraging to other parents following in your footsteps.

    1. My sister shared that scripture with me last week when I really needed it! Amazing how God's word comes to find us when we need it the most. Thank you for your sweet compliments. It's so easy to write about something you love. For me, that's my kids - and especially Leo!