Tuesday, June 26, 2012

The Rest of June

What another month it's been... full of learning (both for me and the kids), new information (mostly for Samuel), outings (for everyone), and NOT sickness!  Woo Hoo!

The learning part for the kiddos is pretty self explanatory - they are like little sponges!  Picking up on everything these days, a few things that have exploded for George and Olivia are repeating songs, poems, jokes, stories, and expressions.  They've always been interested in this stuff, but lately they've hit a spurt.  Samuel also has a few new tricks, like identifying an object and pointing to it upon request fairly quickly, he's better at making choices, he can fill in alphabet letters and words to poems and songs, and his babbling picks up every day.

The education for me, in addition to of course learning more about parenting every single day, came in the form of a full day forum on autism.  No, no one has this diagnosis, but I do know Samuel has some communication delays so I figured why not check this out... and when I flinched at the idea of a Saturday away from my kids, DB was such the encourager :)  I won't go into too much detail, it was an awesome day!  Two of the many things that came out of it are an upcoming visit from an ABA therapist to give us some helpful ideas about how best to work with Samuel, and an appointment with a new doctor.  The therapist seems great, and I can't wait for her to meet our family.  I'm thrilled at the idea of new ways to work with Samuel... and from what I know of ABA, it can really help communication for all kiddos.  Yea!  It turns out the new doctor works in conjunction with our neurologist once per month, and some of the ideas she talked about at the conference in regards to dealing with multiple diagnosis and figuring out what symptoms/behaviors come from which diagnosis, which is part of my frustration lately.  For example, is "x" behavior caused by visual processing delay, communication delay, general developmental delay, other?  This information will help a lot with treatment of "x" behavior.

Wow, that felt so vague compared to the day full of speakers, tech demos, medical updates, therapists, etc.  I'm trying to keep this somewhat interesting though... ha!

The new information for the month is in regards to medical news.  Great news, Samuel can hear very well, his airway looks great, and his ears look good, too!  So-so news, one of his vocal chords is paralyzed... we kind of already knew this, but were hoping for some type of change.  At this point, no change means it's a definite.  Here's how it happened and what that means, click here.  The biggest difference between that info we had a year ago and what we know now, is it can be worse than we thought, meaning it can significantly affect ability to eat and talk.  That Samuel's talking is great news, and goes back to the compensation we mentioned a year ago.  We won't know more for a while, but our prayer is that his voice continues to develop and provide him with a communication tool and that he learns to eat.  Similar to our ongoing prayers I suppose :)

One note about the info above - this was done during sedated testing, which I did not go to!  Since it's summer, DB went with Samuel and I went to work.  This is a big deal for me... not that I don't trust DB, I do, but I have a need-to-be-involved issue that is pretty overwhelming.  This was a good step for me to take :)  Thanks to DB for dealing with me!

In other medical news, we learned more about Samuel's upcoming heart surgery.  I took him in a bit earlier than our scheduled appointment due to some excess sweating and increased heart rate during eating.  Turns out everything is fine, but the open ASD may be causing some of the issues.  This post talked about Samuel's ASD, as well as referenced when George had his repaired.  Now that Samuel's pulmonary hypertension is better, the hole is not providing relief of any sort, and in fact is so big it's very possibly causing some issues.  In an effort not to rehash what we thought before, which was true from the time we posted the linked post above until the day we saw the cardiologist two weeks ago, about this being a relatively simply procedure... it is in fact not simple.  Go figure.  It turns out the hole in Samuel's heart (ASD) is too big to be repaired in the cath lab... the spiral that they put in to close George's ASD won't work for Samuel because the hole is large enough that there's nothing for the spiral to hold on to.  So, they'll have to patch it manually, for lack of a better term, which means open heart surgery.  Yes, really.  Ugh.

This one has caught me off gaurd, and I'm surprised at how emotional I've been... even tearing up as I type.  I think I was so prepared for this to be simple... or maybe it's that I just saw DB go through a similar procedure a year ago... I don't know, but it's eating me up.  I know he'll be fine, and I completely trust the medical team, but I think part of the "this isn't fair for Samuel" is starting to surge.  Moving on now because I must...

The adventures never stop... more of our favorite trips to the beach and the farmers market, but lately we've also added in the pool, visits with friends, going back to church, and even a very brief paddle board experience :)  Unfortunately no pics from our first paddle board experience last weekend... it's so much harder to take photos at the beach now that the kids run, run, run!  Ha!

Back to Memorial Day weekend... one of the many great things about our town are it's small town parades and support for the military.  We were decked out in red, white, and blue, and ready to say thank you!

Every parade goer needs to be ready to wave... the kids wanted to make sure they had it just right before it began :)  They're also at the age where they dance and move to the marching bands, love it!

What an incredible sight!
We were toward the end of the parade route, but even at that point the different groups marched, danced, and played their music as if it were the beginning.

Our family will never miss the end of a parade... when the fire truck brings up the rear!

No comments: