Sunday, November 8, 2009

Hello Again...

Lots has been happening on the home front:) We have a new computer which is awesome, wonderful news. (CAN YOU SAY HULU THREE TIMES FAST???? We double heart HULU!!) We arent' set up to download photos yet but will be hopefully in a couple of days then everything will be back to normal.??!! Leni is doing great. Her asthma is under control with her new meds and is sleeping the best we've seen her in a while. She does have obstructive apnea which is under evaluation as well. She needs her tonsils and adenoids removed but the complicating factor is that she has a partially collapsed trachea which complicates having anesthesia. We aren't worried but the surgeon is. We're seeking a second opinion. We think the risk of her trachea is minor compared to the relief she'll experience having the surgery. The third and largest find is that she has been diagnosed with Narcolepsy. We've been doing our research because in children this neurological disorder is pretty rare. It has to do with a lack of Hypocretin in the Hypothalmus in the brain. It causes severe disruptions in the sleep cycle so her body never experiences recovery sleep so critical to every human. What's interesting is that it causes cognitive, neuromuscular issues, and cataplexy among other symptoms. She has pretty near every symptom associated with Narcolepsy. There is no known cure so for now she'll be on meds until they find one:) Basically we're trying to replace the hypocretin (Using naturally compounded perscriptions) so she'll begin normal sleep cycles. We're excited to finally be getting somewhere and can already see improvement after being on meds only a week. Thank you God!! We're not done yet....as we're set to see more specialists in the coming days. Keep praying!

Here's a quote that has spoken to me in these days comes from my close friend Amy Carmichael.


SOLDIERS
It matters a good deal that your book-food should be about strong meat. We are what we think about. Think about trivial things of weak things and somehow one loses fibre and becomes flabby in spirit. Soldiers need to be strong.
Soldiers have not time for everything. "I have no time for anything outside my profession," a young officer said once, and in measure that is true. WE can't be entangled in the affair of this life if we are to be real soldiers. By its affairs I mean its chatter and its ways of thinking and deciding questions, its whole aspect and trend.

As we go about our week, may we not lose our 'soldier' mentality and labor with diligence for the Audience of One... the one who upholds our every breath and heartbeat. I pray that I would not lose my focus or be distracted by the cares of this life that would continually shout at me to listen to them louder than I believe the promises of scripture. How do we do this?? By being a soldier that memorizes scripture and hides it in our hearts....just like we love our children to do. Very simple actually:) Have a wonderful week!!

2 comments:

Unknown said...

I wanted to share this blog with you that I came across a couple of years ago. This young girl is amazing and writes about her adopted sisters from China and a brother on the way. Her latest post brought me to tears. Just thought you would enjoy reading!

http://www.andthentherewereseven.blogspot.com/

The VanLue House of Happy Chaos said...

Thanks Brandi!!