Saturday, April 6, 2013

13 month update

Another month has come and gone, and our little Leo is now 13 months old!  So what's he up to, you ask?

As of the moment (seriously, like this VERY moment...), he is wide awake at 2:00 am working to cut another one year molar. That's right, the first molar finally broke through some time recently!  I just noticed that a couple nights ago.  So now, he's working on the second. In typical DS fashion, he is officially getting his teeth out of order. He has two tiny teeth on the bottom front, and one "1 yr old molar"!  Maybe now he will try to chew something.

This month has been a little more eventful than the previous one. He began with a respiratory infection which turned into a second round of pneumonia, but also added a GI illness (like rotavirus, with vomiting and diarrhea) on top of that. That was our exciting Spring Break!  That was also in the midst of about 4 weeks of uncontrolled wheezing.  A visit to the pulmonologist helped with a stronger dose of Symbicort and added Ipatropium for breathing treatments.

At the advice of both his pediatrician and pulmonologist, Leo is scheduled for another swallow study coming up in April. With two rounds of pneumonia within just a few months the concern is that he's aspirating liquids. He's always had a weak swallow (we thickened for like forever...), and previous studies showed traces of aspiration. We're going to check and see if that's reoccurring or worsening.

In my previous post, I gave an ophthalmology update. Leo has extopia, a form of strabismus, where one or both eyes look outward due to weak muscles. His right eye is mainly affected so we're patching the left eye for 30-60 minutes a day, but haven't seen any improvement. His left eye is also at the beginning stage of being affected. Leo goes to see his regular ophthalmologist (Dr. Weakley) in a couple weeks and we'll see if he agrees with Dr. Wang about scheduling surgery.

We also finished the month of March with Leo's post-op sleep study (Study #3).  It's a follow-up to see the results from his T&A (tonsillectomy and adenoidectomy, for obstructive apnea). I was super dreading it since Study #2 was so awful with him waking up no less than every 15 to 30 minutes; but ultimately, it ended up being more like our experience with Study #1, so that was great!  Don't get me wrong, still sleep deprivation for mom... but at least I actually had an hour here and there.  The technician said he looked good with just a little central apnea and only two times with oxygen saturation levels dropping into the 80's, so it sounds like a huge improvement to me.  We should get the official results at the end of April.

For some other fun news... Leo officially ditched the formula and is on all whole milk!! As exciting as that is, it really stinks when he spits up.  Literally.... stiiiiiinkyyyyyyyy! Seriously, I'm so excited for him. He transitioned like a champ in just 4 days total.  He's still having a hard time with "chunks" of food, gagging and nearly choking, so no finger foods yet. But he's been doing better with stage 2 1/2 and some stage 3 baby foods. At least there are baby steps happening...

He's getting really close to succeeding on the transition from laying down to sitting up, and also really close to making baby steps (or baby crawls!) toward real crawling. Still lots of army crawling and getting a little faster at it!  He likes to get on his knees and think about trying to move his knees forward. Sometimes it looks like he's just gonna take off... but then he falls onto his belly. At least he's thinking about it!

Needless to say, based on our little reports, speech therapy and physical therapy are going well. He's at one visit per week on both of those right now. We're super thrilled that Leo's occupational therapist is back from maternity leave and started working with him again this week!  We really missed her, and now Leo will get to work even harder toward his new goals because at his one year evaluation, he met all of his previous goals.  (Big fat yayyy!)

The first year with Leo was quite a challenge, and the second year is also starting to shape up a bit challenging, but it has already proven it will also be tons of fun.  Once again, I want to thank each of you - friends and family - for following his journey.  Most of all, thank you for keeping our sweet boy in your thoughts and prayers at times when he needs them most.

Soon to come.... I'm going to be prodding Dad and Sister to post a thought or two.  Hopefully that will be coming soon!  For now, another attempt to get this little boy to sleep...

With love,


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