Thursday, February 21, 2008

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 <><

Friday, February 15, 2008

mid-Feb update

Feb 15th -- it's about as mid-Feb as it can get ;)

We're doing well. When typing that I don't know if I'm lying to you and myself, but it's what came out of my head, down my arms, and out of my tapping fingers. Yesterday I was not feeling too hot, but today is another day. I've gained some perspective on life, worked through some pain, regained some strength, and now I'm looking forward to tomorrow. That's pretty good, don't you think?

Emily's been causing the joyous part of life these days. It's always tinged with a bit of grief too, but maybe all joy in this world is tinged with a little feeling of grief... sometimes it's just not as apparent b/c the situation doesn't focus on it -- but with Emily, every moment has at least a tiny amount of awareness of the weakness difficulty that Spinal Muscular Atrophy (SMA) brings. Too much happiness causes coughing and extra secretions... too much sadness does the same. Giggling is the best. :) Giggling is GREAT! and Emily can giggle. Sometimes she just lays there by herself and giggles -- I like to think the Holy Spirit's telling her a funny joke, or just letting her know that He loves her - so she giggles for joy. I love it when she giggles.

Emily's new favorite word is "GO!" "Ready, Set,... 'GO!'" She loves it. It takes some energy to get it out. It's cute and sad in the same instant as I watch her contort her little body as best she can do get that breath deep enough to make a good "GO" sound when she releases. She's learned that we love it to, so when she wants something to change, out of boredom or whatever, she says.... "GO!" You probably wouldn't know she's saying GO b/c it sounds like a lingering "G" - but she's saying it alright. It's not the only thing she says with her mouth, but it's the thing she gets the biggest response out of. :)

Ok -- so the practical "what's been going on" part of the update:
  • Emily - we feel like she experiencing some increased weakness, but unsure of whether or not it is SMA, her new and unusual sleep schedule - or lack thereof, medication starting to not work anymore, PICU recovery. We just don't know. Regardless, she has been a happy-go-lucky girl that keeps putting smiles on people's faces. :)
  • Annabelle - she growing into our little lady - with a continued sassy streak. Annabelle is a very loyal friends and turns out to be quite popular with the boys. :/ Time to get a shotgun!
  • Diana's busy being everything wonderful -- Mom, Wife, Cook, Cleaner, Shopper, Nurse, etc. She's not taking any classes this Spring so she won't be distracted while Emily's recovering from the PICU stay, but we'll try to get her back in class soon.
  • I'm busy trying to finish up this semester's classes and preparing for the next set in addition to everything else. Hopefully I will be done by Aug -- it will be nice to be done!
  • Cindy continues to be a great Aunt, Sister, and sister-in-law with all the help she provides. She's looking around for her next adventure, so we may lose her soon -- but it will be good for her to get on with things. She just loves our kids and it's a blessing!

Thank you for your prayers. I get notes here and there encouraging me to write another update -- thanks for the nudges. We can get so steeped in stuff around here that I forget to blog.... can you believe it?! Me? Forget to blog?? -- Thanks for stoppin by.

Peace <><