Tuesday, November 13, 2012

A Day in the Life

As the old saying goes, "no news is good news."  I'll let that explain why Dominic's faithful admirers have not had any sort of Dominic-fix lately.  Sorry about that :/.  In our world though, boring is good, and thank God, things have been good.  Dominic has increased doses of his seizure and thyroid medicine as well as his dopamine but all in all, he is doing much better than I expected he would at this age.  He is progressing in motor skills (despite the fact his brain degeneration is progressive- something the doc's can't explain) and is sitting up with little support and can hold his own head up for longer and longer stretches.  He's also alot more alert and interacts with us more (in spurts).  Just today he was playing a take-turn game of sticking his tounge out and clicking it after I did... this is HUGE!!  I was so excited, I could have died!  But best of all, he's cuter than ever.

We're still waiting on his gene tests to get back (remember the whole exome sequencing that sequences all 22,000 genes... +/-, who knows?!?!).  It has been quite a while so we are expecting that back pretty soon.  Be assured, you'll be the first to know what the tests says.

We're home schooling the oldest three kidd-o's and it's working out perfect for our family.  It gives us the flexibility we need with Dominic and it has been SO fun being with them as they learn and explore new things.  Fun, but yes, crazy sometimes.  This would be another reason I have neglected the blog, and through that, you faithful readers.  I'll try harder... I promise this time!

Here's a typical day in the life of our little saint:

Tuesday through Friday he has at least two therapies a day.  He gets PT, OT, ST (two different therapists, one for feeding and one for communication), VI (visual impairment teacher), O&M (orientation and mobility teacher), and soon AI (auditory impairment teacher).  That's 9 visist a week.  Thanks goodness for home therapy!

 Between therapies he's entertained by the REAL Power Rangers!

After his sessions, he crashes for a good long nap.  His therapists are relentless... just the way I like it!  :)
 He gets a good bath, a massage, and trach or tie change, depending on the day.  He LOVES his baths!
...And more therapy from his siblings... "Roll, Dom, roll!"

 He protests, but to no avail...

And on a good day, he gets some lovin' from his Mi Mi
 Ever-faithful, Mary is Dominic's little mamma.  She is constantly hugging, kissing, cuddling, trying to carry, lying on top of (scary) him.  She'll be the one that takes over when Mike and I are too old, I just know it! :)

So there you are good, faithful Dom-lovers.  I promise not to stay away for so long next time.  We still need your prayers, as his condition is progressive, and especially prayers for his healing, if it is God's will.  Most of all though, we only want God to be glorified through his little life, whatever that may mean.

In Jesus and Mary,


  1. What can I say, I am a blessed Nana. I sure love my little Dom, and Mary, Anthony and Jake. You all just fill my heart.
    Love - Tab

  2. I can see the happiness in his handsome little smile!! He sure knows he is loved!!