Our happy girl

Emily is our little giggle girl -- she just sings and giggles all day long. How fun is that?! It's awesome!

We met our new pulmonologist, Dr. Sterni, this week and talked about Emily's recent stay in the PICU, the road ahead, and a possible sleep study. We also shared our woes with Hopkins and the continued need for an appropriate protocol so there is NO mistaking how to care for her when we are admitted again some day... if we still live in this area when that time comes. Although I couldn't tell if she's very interested in penetrating the Hopkins PICU forcefield and fighting the culture that comes along with 9 different PICU intensivists, or "Attendings," she did seem concerned enough to make sure they understand how Emily is to be cared for. She was very relaxed with us and it was a good visit. We will entertain the idea of a sleep study later this year to make sure that Emily's CO2 levels are what they should be, since she spends so much time a day on her biPAP, 14-16 hours.

Anyway, Emily's just been as happy as can be yapping up a storm.

I've just finished my last math class needed to complete a couple of degrees (literally, just before typing this post) so, WHAT A RELIEF!! I will get an "A," which I believe is a first for me in math. :) I have some other classes to go, so back to the books for a few more months - Ethics in Health Care and Religion in Society -- sounds interesting enough. I'll finish up in Aug and I can't wait to be done!

Peace <><


del said…
Nathan and Diana: Your blog comments bring a smile to our day! Plus, its good to see that degree shaping up! :-)

Sky said…
Im so glad Emily is so happy, it makes SMA so much easier... I Love to hear of our happy kids and see the smiles. Skys C02 is and always has been lower then the norm, but he is only off the machine for 6 hours a day (mamas to chicken to push to hard) even thought I know he could do more. And Im so glad to hear you are almost done with your classes, what will you be doing? Good Luck BIG HUGS to the girls from Sky and I Take care ((Springs on the way)) Sheila
Anonymous said…
Nathan, Diana, Annabelle and Emily,
We think about you LOTS and pray for you just as much! The chat today was great and we really miss the times we used to have. We will check this site often. Love ya and God bless you!
Daryl and Janie Carlock
Nate said…
Thanks Dad! So glad you're a part of Emily's life!

Sheila - Thanks for stopping by and thanks for your encouragement. :)

Daryl and Janie - thanks for stopping in and for your prayers. It was good to "catch up" on the phone the other day. We hope our Gluten-free info was just what you were looking for! :) Take care and check in from time to time - I'll do my best to keep bloggin'!