Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Friday, January 7, 2011

It's Friday.

I got very little sleep last night, for reasons I'm not wanting to share online.  uuuugh.  Either way, I have a free minute, (at 7am no less,) so I thought I'd share the new stuff from yesterday.

We're getting somewhere with our specialists.  Cardiology visits have been pushed back to once every 6 months, Neurology has changed to every 6 as well, and Respiratory is now every 2, and J is no longer considered a complex patient, which makes scheduling easier with Dr. Ricker.  That cloud hanging over my head, reminding me to reschedule, just got a little lighter.

Joel had a bronchioscope on Tuesday, because we've been suctioning blood out of his trach a few times over Christmas break.  The bronch showed very little scar tissue, and he said that none of it was from our was from having a trach in general.  On a mommy note, this was a very feared procedure.  It's hard enough to let other people care for my child, but it's worse when the consequence of bad care would be a permanent situation.  If a child with a trach is suctioned too deep, scar tissue develops and obstructs the airway.  We fired a nurse who continued to suction too deep, and proceeded to train other nurses to do the same.  It was infuriating.  I'm feeling very blessed that all of our nurses are giving the best possible care to our son. 

Yesterday, Joel got his glasses fitted, and Dr. Baxtrom retested his eyes.  They were both testing at 80 at our first appointment, and this time they tested at 64.  I'm not good with the eye-doc lingo yet, but I do know enough to know that his vision has improved.  :)  The glasses are absolutely adorable.  He doesn't hate I guess that's about as much as you can ask of a 9 month old.  He only tries to remove them during the first minute, but if I can distract him, he forgets they are on.  You can read more about Joel's glasses/eye problems here

That's all for now.  Kids are up, Sesame Street is playing, and I'm about to have hungry children at my ankles any minute.  XO

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