Wednesday, January 31, 2007

No News is Good News

So the old saying is correct this time, but it has been an intense few weeks nontheless. I said in an earlier post that Skilled Nursing is covered under our new insurance, and it is. However, they are telling us that we do not qualify and our request was DENIED! Now, if we don't "qualify" I don't know who the hell does. Ridiculous! Preposterous! Idiotic! Moronic! ... OK, ok. So, that has been heavy on our hearts and minds, and eyelids.

So much to think about.

Hopefully we'll hear something this week b/c our Pediatrician, Dr. Dudas, is going to have a "peer to peer" with the Medical Director of Aetna, Dr. Freid. If that doesn't wise him up we'll have to go to plan B which involves chicken feathers, molasses, and a sling-shot. Uhh.. wait a second, that was the list for this weekend.... ummm.... oh, here it is. "Plan B" is to send Dr. Freid an incalculable number of letters laying out Emily's medical needs and enlisting the assistance of, say, the MD Insurance Commissioner or whomever else can wreak havoc on the guy and his office.

Other than that we have been doing a bit of this and a bit of that. Things have picked up at work for me so I am staying busy, in a good way. WHEN we get nursing things will be less stressful we hope, so pray that will happen soon.

We miss everyone that is not near and wish to see you soon. Thanks for those of you who have been bringing us food still, it is such a nice relief. And thank you for the donations to The Emily Lee Medical Fund at Bank of America. There is no way I can tell you how helpful it all is. :)

I'll try to get some recent pics up soon. We had Annabelle's 5th B'day party this past weekend and she was on cloud 9. Bossing us around and stuff b/c ""I'm the Birthday girl" she'd say in her pompous little 5-year old way. I told her "DROP AND GIVE ME 20 YOU LITTLE PUNK!!" Just kidding, but I did tell her she'd spend it in her room if she didn't check her tone. She ignored me, but I didn't here any of that talk after that. Anyway, she's great (as I always say) b/c she is so dang smart and finishes my sentences when I can't, which is all too often and may have something to do with my beard and top hair going grey already -- yep, it's starting to turn. I consider it a badge of woe... I mean honor.

Ciao Babe! Peace <><

Saturday, January 13, 2007

Annabelle's Additions


Here is the latest picture from Annabelle -- I find it somewhat amazing. It is a picture of me wearing a backpack. :) Take a good look at it.

Monday, January 08, 2007

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 <><