Wednesday, April 20, 2011

So I've been a little slack....

It seems like I always start my posts with an apology for not posting sooner, but sorry it's been a little over a month since my last post.  What's my excuse?  Well, I have been a little busy....but mostly, I guess I was just a little slack.  So I'll try my best to catch everyone up to speed.

We've had some little accomplishments since my last post.  Most notably, Atticus has finally started waving "bye-bye", and he's gotten MUCH better at crawling!  He still refuses to extend his arms, but he can really move on knees and forearms.  Blink and he's half way across the house!  He was a little resistant at first to crawling across the vinyl flooring in the kitchen, mostly, I think, because it was so much colder than the carpet.  But that's not a problem any more! ;)  Now to teach him to stay out of the cabinets!  He likes opening and slamming them closed because he can actually hear it, even if he's lost his hearing aids along the journey somewhere.  Robbie and I keep telling him "no" and shaking our heads, but he's a comedian.  He crawled in the kitchen earlier while I was cooking dinner, sat in front of one of the cabinets next to me, looked up at me, smiled, shook his head "no", and proceeded to slam the cabinet door!  He just thinks everything is a game.  Yep.  Definitely his father's son.

We've also had another round of visits to the various and sundry specialists, so I'll run down the list.  We had a great visit with Dr Williams (cardiology) at the beginning of the month.  Atticus' oxygen sats we staying in the mid 80s.  He weighs 24 lbs 13 oz and was 32 inches long.  So only a 7 oz weight gain in the last 2 months, but Dr Williams was still really happy with him.  He didn't do another echo-cardiogram this time since he'd just had one the visit before, but listened to his chest and was satisfied.  He said he's betting that since Atticus' weight gain has slowed, now that he's becoming more mobile, it'll probably be a little longer before Atticus is big enough for the Fontan, assuming that his heart function remains good.  That's news that suits me just fine.  Dr Williams was so happy with him that we get to go 3 months this time before we have to go back!!  Yay!  However, this is at the same time a teeny bit scary since I use those visits to reassure myself that he's really doing as well as I think he is......but I think saving the gas money driving an hour each way is well worth it. :)

We also had a great visit just last week with Dr Kinsman (neurology).  Dr Kinsman always makes me smile.  He's a bow tie doctor, with metal round rimmed glasses, slightly balding, but very kind.  He's always happy to see Atticus, and remembers him without even having to consult his chart.  Let's face it.  It's a unique name and he's a unique kid.  He always seems just genuinely impressed with how well Atticus is doing cognitively, and remarks how he had such a "massive brain bleed" (which he added was on the left side of the brain this trip), and how great his social skills are, etc.  In fact, Dr Kinsman was so happy with Atticus on this trip that he said he didn't see any reason for us to have to come back!  He added that he'd only want to have us come back for one more visit and probably EEG right before Atticus has his Fontan (likely the same time as the pre-op Cath), so they could have a base reading before surgery.  This is fantastic news!!  Seventeen months ago, we didn't even know if these brain bleeds would kill him, let alone any neurological complications (like the seizures) that might occur as a consequence of them.  Now, you're telling me that not only has he remained seizure-free, but we're actually CLEARED from neurology...............it's why he's my Amazing Atticus.  He's God's miracle to me.

And finally, we had an appointment with ENT for Atticus' vocal chords.  This visit was basically a waste of time.  There.  I said it.  I like Dr Driscolo, but it almost seemed like he didn't even know why we were there.  Not much has changed.  Obviously, Atticus still can't talk, so we know his vocal chords aren't completely healed.  Even if they decide to do corrective surgery, it certainly wouldn't be until after his Fontan because they're just gonna have to shove a tube right back down his throat again.  Like I said, I like Dr Driscolo because at least he realizes there's not point in putting Atticus through an extra surgery.  The only good thing (I guess) that came out of this visit was that Dr Driscolo wants us to have another swallow study done.  It's been a little over a year since his last one.  Thankfully he just gave me an order for it so that we don't have to drive all the way  across the state to have it done.  He just circled the fax number and asked that wherever we have it done to be sure to send him the results.

Well, I think that's really about it.  He continues to grow stronger and amaze me more and more each day.  His personality is starting to bloom, and he is certainly beginning the challenging stage of the "terrible twos" which is uniquely different from his older siblings because of his hearing loss.  His language skills are getting better, and he's even getting better at signing and using his hands.  He's such an awesome little guy.  As always, keep on prayin' for us!

1 comment:

  1. Great to hear how well Atticus is doing. Yes, he is a miracle child and God certainly blessed you when he gave him to you! It takes special parents to raise such a special child. You're doing an awesome job! Love you!

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