Saturday, October 27, 2007

Can you believe it?! A new update!!

Hey Folks,

Thanks for the emails and phone calls reminding me that I've been lax on my bLogging. :) It's been an incredibly busy month, to say the least. School, work, Dr. Appts with Emily, Dr. Appts for me, etc, etc. Not an excuse, but it's just been busy.

First things first -- Emily has been doing GREAT. She really has and it's been amazing. Now, that means different things to different people I have come to realize. Emily still gets 3 respiratory treatments a day which includes Chest Physiotherapy, assisted coughing, and suctioning. She is still suctioned and coughed throughout the day outside of treatments to help control her secretions, and she is still fed through her Gtube. She cannot sit up, roll over, swallow effectively, or do pretty much anything else that "normal" kids do. She requires manual stretching and physical therapy throughout each and every day to prevent malformation of her joints, and her bones are VERY fragile due to Osteopenia, or low bone density. She has many visits every weak from the public school system to work on various speech, physical, and other therapies - and she always sleeps with her BiPAP on.

So - the reason she has been doing so great is b/c she's been healthy for quite some time now -- very few sicknesses and none of them very serious. She's been working really hard to get some words out, but she's having a hard time getting the coordination between her little mouth moving and getting those sounds out. Regardless, she has been very "verbal" and just loves being with the rest of the fam. :) The weather's been very nice (cooler) so her walks have become a more frequent again. We've been working on sitting her upright more and she's been tolerating it very well -- so, all in all she's just been doing real well.

In our recent Doc visits with her we have been talking about diet, joint and bone bracing, and assistive technology for better communication. These discussions have been good, but I don't know if I feel the docs are being aggressive enough. Since very few docs have seen little kiddos like Emily, it's pretty much a guessing game, so we have to make sure (as usual) that we are weighing the options and getting good feedback from other parents in our situation. Sometimes we agree with the docs, other times we don't. Gets tiring after a while, but the show must go on. More to come on this...

Other than that sort of stuff we just been navigating through the whole family/disease/marriage/parenting/
religious/occupational/death/life/
meaning of life/bills/schooling type stuff -- you know, the usual.

This weekend we are in GA for my 10yr HS reunion... remembering the good and bad times. It's been fun to see some old faces! The trip has had a toll on Emily though. Didn't help that I came down with a cold the day before we left, so, inevitably, I am pretty sure that Emily is coming down with it too. It's hard to avoid each other when we're on the road. :( In fact, I am sitting her at 2:11AM typing this b/c I can't sleep with my nose emptying like a garden hose left in the yard. Just can't sleep. We'll be happy to get back home Sun night. My mom's along to help out, so that is really nice.

Ok - looks like I've accomplished some "catching up" there, so I'm gonna sign off now. Thanks for keeping up with the bLog and please keep praying for us. We truly appreciate your care for us and I hope, in some way, that I can reciprocate your love and care by sharing our life through this bLog. One thing I feel God continues to teach me through all of this is the necessity for all of us to share our experiences with others more often. We all tend to be TOO private.

Peace <><

3 comments:

Jana said...

Keep up the good work Lee's! Emily is such a loved and well cared for little girl. Praying that she gets back to 100% soon and you all get the rest and care you need as well!

Jeanna said...

I am so glad Emily is on the mend.
Hope she gets well soon!
Many prayers and good thoughts. She has such a sweet "Aura" . So loved.
Hugs,
Jeanna and Elizabeth
www.our-sma-angels.com/elizabeth/

Nate said...

Thanks Jana and Jeanna. Emily's a neat little girl, that is for sure :)

Keep praying for her b/c she's still having a rough time. Her secretions are fairly clear and thin, but there's A LOT! She just coughing all day and just getting wiped out from all the treatments :*( Trying to decide if it'd be worth taking her in and dealing with the ER and PICU.