Thursday, May 10, 2012

Hello May! I think...

I was very excited about May.  April was filled with doctors appointments for Samuel, all of which brought new information and ideas... but I was kind of looking forward to May, with only one scheduled appointment and a fun family trip!  We're headed to see DB's cousin and brother graduate from college, yea!

While the trip is still planned, the one appointment for the month had to be cancelled... for illness.  Ugh.  May has NOT started off with flowers!  I will say, so far there has been no illness requiring extra oxygen - hooray!!  (We had to cancel the appointment because it was some testing that would have required Samuel to be sedated... which is a no-go when the boy is any kind of sick.)

As an inserted comment from early June, May did not get any better in the illness category.  Oh. My. Gosh.

So back to the appointments in April, they were really good.  Olivia and George had their 3-year check up, and they look great!  For Samuel, we saw pulmonary, ENT, and audiology one week, ophthalmology the next week, a behavioral ocular motor specialist the next week, a developmental pediatrics team the next week, and of course were discharged from another 'ologist as I mentioned in a previous post.  Whew.

The most noticeable excellent thing about these appointments is that they were all "typical kid" stuff!  No, I realize most kids don't see all these docs... but the reasons we were seeing them is SO different than what we got used to for a while.  Instead of talking about things like breathing, we have moved on almost completely to quality of life and talking about developmental milestones!  This is HUGE!  Of course we've been concerned about that all along, but as our pulmonologist says (I've quoted it before), "if you can't breathe, nothing else matters."  This month was an incredible confirmation that Samuel really is moving past the critical days!  I'm completely aware that the wrong cold could land him back in a bad place, as we've recently seen, but our day-to-day is a 180 of where it was a year ago and especially two years ago.

There was much to report from each of these appointments, but I'll try to keep it to the basics...
  • Samuel has some range of normal hearing!  Where that is specifically, we're unsure because it's so difficult to test.  So we have a sedated test coming up to get more accurate information.  We'll also do some other things during this, like check out his airway and replace an ear tube.
  • Samuel's eye surgery was officially a success!  Nine months later, and his eyes are not only still straight, but are equally strong.  YEA!  No second surgery were welcome words to my ears!
  • While Samuel can see (quote, "his picture-takers work"), there may be problems with his visual processing.  This is hard to keep brief, but I'll try... we were so lucky to see this specialist, who was in town for one day only, that it could be a story in itself.  The 90 minutes she saw him were so neat.  Bottom line, Samuel now wears a hat to help him focus for longer periods of time... who knew that would help?!  He also now wears magnifying bifocals :)  It's fascinating.  He can see, so his glasses aren't the same as mine, but they are similar to reading glasses but a lot stronger.  In short, just like reading glasses magnify the words and make them easier for your brain to process, Samuel's glasses magnify everything and make it easier for his brain to process what his eyes are taking in.  Cool huh?! The other neat part is that while my glasses won't eventually heal my eyes (they'll always be bad and probably get worse), the hope is that Samuel's glasses will at first make it easier for him to process, in turn helping his brain learn to process better, and eventually heal some if not all of his visual processing issues.  See what I mean, tough to summarize!
  • We got a referral to see another doctor, just to rule things out... hoping this will be a one or two visit deal.
  • I might delete this later... but at one of the appointments I, for the first time ever, decided against a recommendation.  No way to really go into detail at this point, but I'm so thankful to so many doctors for helping me to be informed.  Don't get me wrong, there's SO much I don't know... but what they've taught me, including how to speak up as a mother which can be incredibly intimidating, is helping me to be active in making some tough decisions.  I'm not completely against the recommendation they made, but am against moving forward now.  Sorry to be cryptic.  Hoping that one day when I re-read this it will remind me to speak my mind :)
First pic of the new glasses :)

A few photos from a few months ago that I just couldn't resist posting...
Their joy is so evident!

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