Monday, August 13, 2012

helmets, breathing, and spoon feeding the boy who makes us smile

It never ceases to amaze me how busy Leo can keep us!  In the past three weeks, he has obtained a DOC Band (cranial orthotic for plagiocephaly, i.e. misshaped skull), followed up with the GI doctor, began eating cereal from a spoon, and launched a new medical path with the ENT due to the non-optimal outcome of the Big Sleepless Study.  Whewww.  All that, plus his routine visits with the OT, PT, and Speech Therapist. Why yes, he is quite the busy boy!

The DOC Band

this was such an interesting and cute experience, that I'll make time for a separate post on it. So, more to come...

The GI follow-up

Basically, Leo is doing much better with his swallowing but not as great with his gaining weight. We think he looks like a little pudge, and perfect in every way; however, his GI doctor thinks he needs to vamp up the eating and growing. So we were finally given the go ahead on eating cereal. Woo-hoo! It was an awkward start with lots of tongue protrusion (although, I remember Meris and Seth doing a lot of the same! Leo just happens to have a little more tongue to stick out...). But after just a few meals, he's made great progress.  He actually swallows more than he wears!  Again, another topic of uber-cuteness, so I will do another post all it's own to share with you.  Here is a sneak peak though....

Is he priceless, or what?!

Results of the Sleepless Study, and the Big ENT visit

Yes, we finally got the results of the sleep study from July 20th.  I was told by a couple of friends whose little ones with DS underwent the same study to expect abnormalities, so this didn't come as complete surprise.  What we did find out (that is a bit concerning) is that Leo has a floppy airway. This is common with DS, and also common in younger infants.  But the bigger concern is that this is likely the contributing factor to his apnea with bradycardia (the pauses in breathing, coupled with drop in heart rate).  In fact, from the last download covering a four week period, Leo had nearly a hundred incidences of this happening.  Even though that sounds like a lot for four weeks, that's actually fewer incidences than the previous monthly download. Yikes! Needless to say, there is still no end in sight for this heart/apnea monitor since it alarms us when he is having a more severe episode that needs immediate intervention. So what do we do about this?  We aren't sure yet, but we're meeting with an ENT specialist at Children's today to discuss whether or not Leo will need surgery to correct his problem.  Please say a prayer for wisdom for the doctor, and for us to feel like the right decision is being made.

Until later...

"The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:2.

with love,



  1. I can't wait to see a picture of him in his little helmet, so adorable. My friends son had one and they decorated his in UT colors lol

    How did the appt with his ENT go ?

  2. I finally did the post on the DOC band, with some cute pictures! :)

    The ENT visit is another post. Surgery recommended, but we are also getting a second opinion. Hoping we will feel at peace about decisions after the second opinion!

    Thanks for following our sweet Leo, Theresa. :)