Long Overdue

I know - this post is long overdue -- We've been so busy.

So, a couple of things:
  1. Emily is getting her 7th tooth!! This is amazing b/c we understood that Emily probably wouldn't get very many teeth b/c SMA kids have a calcium deficiency blah, blah and they don't push their teeth out very well. Anyway - she's on her 7th. It IS neat, but is also causes a lot of secretions that a normal child would drool all over you, your pets, the floor, the tables, the toys, other kids, you -- I think you get the point. So, rather than that happening her drool just pools in the back of her throat b/c she cannot effectively swallow it anymore. That means that, inevitably, some of it is getting into her lungs b/c we can suction out every last drop. SO - we've been busy... but those teeth are so cute and we can't stop talking about them!!
  2. Our new insurance has kicked in and it is proving to be pretty good so far... drum roll.... FORMULA AND NURSING!!! Yep, as far as we can tell Emily's uber-expensive formula is going to be covered by insurance and so is in-home nursing. :) What a blessing. This is a huge answer to prayer b/c I was told nursing would NOT be covered. Anyway, "mums the word." We're hoping for some great trainable nurses.
Everything else has been great. Emily keeps having periodic desat episodes that keep her somewhat confined to her room, but we get her outside as much as possible and carry her around the house to see stuff. She's been so happy. Some of that happy time has been between 1Am and 2Am, but we'll take it b/c she's so fun when she's in her playful moods. Diana's team of her, Cindy, and Annabelle are doing a great job with Emily and I miss them all when I am at that place I have to go to every day -- WORK. yuck! OK - I am glad I have a job, no ungrateful hearts here. :)

Peace <><


Glad to hear that the formula will be covered and hopefully nursing will too!

Big hugs!

Loved all the pictures