Thursday, October 20, 2011

Aaaaand, we're back

Online, that is.

After a very long week without internet access (my WORD, are we not overly dependent on technology these days?), we are finally back online.  Come to find out, thanks to our trusty DVR, that our internet has actually been out since about 2 weeks after we left for Boston.  I'm SO not paying for that month, thank-you-very-much.

I still have a lot of photos to organize and post and am slightly overwhelmed by the amount of "updating" is necessary for this little blog.  I am still unpacking/organizing/cleaning, not to mention trying to locate/wash/iron fall clothes and shoes.  If you know me at all, any one of the above three problems, not to mention the combo of them, is enough to give me an anxiety attack.

Some highlights from the last week:

  • Watching my kids "remember" each other again.
  • Sitting down to eat dinner together as a family.  For the first time...EVER.
  • Mexican food and margaritas.  (Yes, it tops my list. Yumm.)
  • Deaccessing Keegan's port on Saturday to let him swim for the first time this year last weekend.
  • Picking Audrey up from school for the first time.  She has a fascination with the play vacuum cleaner.  Definitely my child.
  • Coming home Monday afternoon from going to pick up 2 boxes (yes, big brown boxes) full of Keegan's medications to find Audrey walking, just like she had been doing it forever.  Tuesday, her teachers said she was walking on uneven surfaces on the playground.  By yesterday (Wednesday), she was standing up on her own unassisted from sitting in the middle of the room, without pulling up on anything.  Today, she was almost running.  The girl is a perfectionist, I suppose.  Waiting until she had it all down to take off on her own.  Hmmm...wonder where she gets that?
  • Going to sleep at night knowing that Keegan is not connected to any tubes or wires!!!  His last feed ends before Gray and I go to sleep.  So very, very wonderful.
  • Attending a very productive, reassuring team meeting with all of Keegan's specialists on Tuesday. It feels very good to know that we have an umbrella for the next storm.  We may not know how sturdy or reliable our "umbrella" is yet, but we are not stepping out without some sort of plan.  That, in and of itself, is very reassuring.  He is now actively followed by 8 specialists, plus his pediatrician and therapists.
  • Relatively stable labs for Keegan.  His numbers are definitely taking longer than expected to normalize.  Either that or they are not going to really normalize as we continue to wean steroids.  That remains to be seen.  I will certainly do a better update on his medical status soon.  I think one of the transplant cardiologists said it best last week...Keegan still has enough steroids on board (which is a LOT) to keep him doing really well, considering what he just went through.  We're on the "high" side of the wave essentially. As we continue to wean the steroids, we are unsure how he will do.  Still, we are going to ride this wave and enjoy it as long as we possibly can!
Pictures and more regular updates to follow soon!  Thank you again for your prayers! 

2 comments:

Kira Willingham said...

So very happy for the "little" but huge accomplishments for you and your sweet family. Dinner TOGETHER, no tubes at night!! Praise God!

Aunt Alex said...

I really enjoy this new trend of having positive news. What a concept! Can I pay Audrey in frozen yogurt to vacuum my apartment? :)