Friday, August 24, 2012

It's been a while... surgery and other stuff

Did you get the memo that it's almost September?  I know it's been a while since I last posted when I start getting messages on Facebook asking how Dominic is doing.  August was a full month, here's the rundown:

Our sweet little man finally got his foot braces we had been waiting for.  Camo, of course.  When he has these on with his camo hearing aides, I sometimes can't find him.  Worse yet, Mike starts getting his hunting guns out thinking he's got a hunting buddy ready to go.  We'll have to look into some sort of search and rescue dog if we keep up with the camo print.  :)

Another biggie this month was his long-awaited surgery.  You know, the one that got cancelled literally minutes before they wheeled him back last time?  Well, this time we had peace about the procedure, and he went back with a fresh blessing from his favorite padre, Fr. Pio Maria.  The surgery went great and the best case scenario was found when they went in.  They were able to completely bring the gonads down in one surgery, his broncoscopy showed his airway is improving, though not normal yet, his hearing is stable (not progressive, thank God), and as for the lumbar puncture, we're not sure yet.  The fluid was sent off to be tested and we haven't heard anything as of yet.  Maybe in a few weeks.  The neurologist is looking for the disease process by testing for metabolizers, in an attempt to find the cause, and possibly some way to stop/slow the brain shrinking.  On second thought, "shrinking" isn't a very nice word.  Let's use "atrophying," it sounds more medical and a bit more elusive.  There, that's better.  These pictures are the evening before the surgery... Super-Dominic!

After the surgery we weren't admitted like I anticipated, so we were put in the recovery room with all the other post-op kids.  In the first 5 minutes I yelled spoke firmly to the nurse twice (sorry nice nurse but you must admit, you were a bit clueless) and was overly aggressive with the sweetest Audiologist in Texas (again, sorry... I'll blame it on the nerves).  We were there for hours trying to get his pain under control until finally the doc's got the word.  Imagine if you will, in slow motion, the two smartest docs we have, walking in together.  A dream team ;)  They heard we weren't budging (the recovery room was empty sans 1 kidd-o by then) and were asking to be admitted for pain control, so rather than sending the PA in (whom I probably wouldn't have listened to anyway... still have a grudge from when he did Dominic's first g-button change...), the docs themselves came.  They prescribed stronger meds and gave us peace of mind.  Our Pulmonary doc was on call all weekend, so we could reach her 24/7.  We seceded and we were on our way home.

I wanted to comfort him if he needed it, so I slept on the floor in his room the first night (no nurse, just little man and me).  This is a post-op day 2 picture.  I don't know what they did to his hair during surgery, but I'm pretty sure they have a bottle of gel and they style kids hair crazy, just for fun ;).  It was so funny sticking up like that.
 Still out of it
 Starting to wake up a bit
The other great thing that happened is this (look down): he got his standing frame!  I have been worrying about him having weight through his legs for a while now so we got a little baby stander!  The standing frame is so important for lots of reasons: to increase bone density, to promote proper formation of the hip socket and other joints, to regulate his tone issues, to be upright for better brain function, to assist with visual training and orientation, promote social skills by bringing him face to face with his siblings.  Whoa, I gotta stop.  I was lapsing into "PT me" starting to write a letter of medical necessity.  sorry.  Anyways, here are some pictures of baby Dom with Little Mary, our firecracker.

 Me: "Mary, look at the camera,"
Mary: "No, you look at the camera"  Stinker.
 She tries to dance with him.  Unfortunately, he can't refuse.
So, that's that.  August, come and almost gone.  I will try to do better in September, and actually write down the running blogroll in my head.:)
In Jesus and Mary,


  1. Chasity, I saw Fr Pio yesterday and he told me about the blog! Please know that I will be following along and praying from afar for Dom and your little family! It was such a blessing meeting yall. God Bless, Heidi (Fr Pio Maria's sister)