Friday, December 30, 2016

End of 2016 Updates

2016, whew, you were a doozy.  From the lowest of lows (facing the daunting possibility of heart transplant, and ultimately the reality of major heart surgery again), to the highest of highs (watching our sweet bird recover from surgery smoothly and growing stronger than ever), you have certainly been one for the books.  While this year was at times exhausting, I am thankful for the progress we've seen in Aberdeen and for the lessons all three of us have learned as we navigated the ups and downs of each month.

I haven't done an update in a couple of months because it's been relatively smooth sailing over here lately. No news is good news, right? Abby is about 25lbs and 32in long these days. She's wearing 24 month clothes for the most part and just went up a diaper size. She still has the teeniest tiniest feet ever (size 3s are roomy), and has more personality than just about anyone I've ever met.  She's working hard at therapy, learning to use a picture system to communicate with in addition to her signs, honing her fine-motor skills, and making progress little-by-little with gross-motor skills. She is so close to mastering the transition from laying down to sitting up - I know she is capable of doing it, but something still hasn't quite clicked so that she's doing it without prompting yet, but she's so so close.  She's just starting to cruise along furniture, and can walk a good ways in her gait-trainer - though she gets tired-out easily and requests a lot of breaks.  She is still 100% tube-fed, but we're continuing to work on desensitizing her mouth in hopes that someday she will accept food orally.  One big change at therapy recently is that I have finally been sequestered to the waiting room.  Abby started throwing epic tantrums during PT, and it seemed like me being there was only making things worse.  While it was really hard for me to accept that it was time that I give her some space, she has done so much better without me back there with her.  My little girl's growing up!

Abby hasn't had too many additional appointments lately.  We've tweaked her feeds here and there to account for her weight gain post-op (it's amazing how much more efficiently your body works when your heart isn't obstructed), as well as her continued vomiting.  The puking isn't as consistent as it used to be, but it certainly hasn't gone away either.  This seems to be par for the course with a lot of kids with Noonan's and we're just hoping that over time it will dissipate.  A recent cardiology follow-up showed no change regarding her hypertrophy.  This is great news.  While her heart is still very very thick and has all sorts of risks associated with it, the fact that the obstruction that was remedied during her July surgery hasn't returned is really positive.  There was a chance that she could have gone through everything she did, just to have the muscle grow right back.  But so far, her obstruction is still pretty much non-existent and no other hypertrophy-related issues (arrhythmias, etc) have surfaced.  She's on a 24-hour Holter monitor right now, but just to have some post-op baseline data to compare to down the road.  Come January, Aberdeen will be two years seizure-free (knock on wood), and we're discussing weaning her seizure meds after a follow-up EEG.  It would be nice to be down one more med, especially if she really doesn't need it anymore.  We'll have to follow-up with the neurosurgery team again in the next couple of months for more discussion on when will be the right time for Aberdeen's next cranial repair, but they may recommend that we wait because...


We've known for a while now that this would be in the plans, but now that it is officially official, you can all know too.  Just as moving here was challenging, getting set up with a whole new team in the D.C. area will be a difficult process as well.  However, we hope that in the D.C. area we'll stand a better chance of having Aberdeen's care spread across fewer facilities - and that none of them will be 3+ hours away.  While the idea of moving again is daunting, I really do hope that the area will be good for us as a family.

We have enjoyed a wonderful holiday season here in San Antonio, with lots of family visiting, fun with local friends, and way too much food. I will be making my first trip away from Aberdeen this coming month - wish me luck and not too many tears! I know Jameson will be fine with her, but I've never left her for more than 24 hours, and I already know that it's going to be tough.  I need a break though and am looking forward to seeing my family out in their new homes in Seattle.

Since I didn't do a post-Thankgiving update, I'll leave you all with a boat-load of pictures from the last couple of months and wishes for a very Happy New Year!


  1. What a beautiful and amazing family you are!! Love love love Abby's smiling face. And the pic of her hugging Elmo -- perfection. Praying 2017 brings your sweet family peace, joy, and many many more smiles.

  2. Glad to hear all is going well, and we wish you continued success in the new year and in the move!