February First

Gracie felt so much better today. Yay!!! Her eyes were a little less puffy (still not normal, for sure), her congestion definitely reduced (because she huffed and puffed on that nebulizer so much over the last three days that she practically blew our house down!) and she was much perkier than she's been since the morning of her heart cath two weeks ago. It was so nice to see her grinning, throwing kisses and grabbing us for hugs today. (John and I still marvel at how she can do a complete 180 several times during the course of any day, but when she's on the "good" side of it, she's always so happy and loving.) She's still having a rough time with her feedings... which is nothing new... and that's always the last thing to get back to status quo when she's been under the weather. And, I've said it many times before, "status quo" on feedings isn't all that good.

The pulmonology appointment was soooo long... over two and a half hours. (See the nurse, see the RT (Respiratory Therapist), see the doctor, wait for the nurse to bring in the second dose of H1N1, schedule a follow-up appointment). But, it went well. The doctor agrees with my "diagnosis" that this most recent illness is sinus related. She said that her lungs sound "pretty good for a trach kid who doesn't swallow and has been micro-aspirating for almost seven years." She definitely wants to keep her on the same breathing treatment regimen that she's been on... it's insanely time consuming, but it seems to be doing the trick.

She also ordered a "sweat test" to rule out Cystic Fibrosis. This is actually something that's been ordered before... just to "rule it out," but was not considered urgent. She was sick the one day I tried to schedule it last year (a day I knew John was off to be with Preston). It's still not urgent, but something they'd like to confirm since she has similar symptoms of CF. To be very clear, she also has many reasons to indicate it's not that. Anyway, it was too hard to schedule before with John's previously unpredictable schedule and my (and the doctor's!) less than enthusiastic desire to have Preston tag along! We'll be doing the test in the next 4-6 weeks. I am not worried about the results.

Gracie Girl's got a ton of appointments this month... next one is tomorrow with the ENT. Hopefully, we will have time to chat (translation... he will make time to listen to me and answer all of my questions, otherwise, I will have to wear my mama bear suit!) about Gracie's swallow, the failed TEE during the cath and her sinuses.

It was a good day... much, much better than many we've had lately, so it wasn't hard at all to find a lot of happiness in the start of February. Hope your February first was fabulous!