This is what I look like as Thanksgiving Prep is officially underway!! Wish I had this many hands!!

A Love Hate Thing....and a Little Trip

I am experiencing a love, hate thing with I-Photo. Mostly hate...but mostly because I don't know how to work it correctly and am very, very impatient with anything electronic. My newest photos won't import so we bring you our recent hiking trip to a state park. Mostly it's too hot in Florida to do much romping in the woods...so when the weather changes we LOVE to take the girls to our fav clear springs and let them run and be pretend injuns. This time my brother went along ...again a greatly needed helping hand to pull girlies out of freezing water. We can't resist getting wet no matter how cold that water gets:) He wanted to give the girls a glimpse of the wildlife that inhabits these woods...deer, bunnies, bear, raccoons, etc....but he soon learned that wild indians scream and squeal at the least little crackling of leaves. The wildlife mysteriously never materialized. Go figure:)

Leni is officially scheduled for surgery on Nov. 30th at 6:30 am. Hopefully this mom can be hyper organized about the holidays this year. Right now it seems overwhelming but we go step by step....one day at a time....being guided by the one who knows every step before and behind us!! More than likely there will be no snail mail cards... e-cards will have to do:) I"m adjusting my expectations and replacing it with gratefulness that this little lady is getting the help she needs!

Now...back to fighting with my computer.....

Do I Hear A WHOOT??!!

We now have I-photo downloaded and life can resume full speed ahead!! Kung-Fu Panda here is ready for action!!

Please keep us in your prayers as this week and next we continue with surgical consults on Miss Leni! She's doing well but we certainly want her surgery done ASAP. I'm happy to be able to blog more normally now...cuz the ladies and little gent are so very full of life and are doing wonderfully! Lots is happening.....so we don't want to miss a thing!

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!!

Drumroll please......

We have a diagnosis and a plan of action! I'm still debating how much to share .....so patience please!

Update...

Well...here goes. Leni, age 8 has had asthma related issues since her adoption and some developmental issues that haven't resolved themselves. Part of the 'plan' included watching her...getting therapy and hoping she outgrew most of what has continued to plague her. Now at 8 years old we are taking more aggressive action to those remaining issues. We started from scratch basically all over again getting tests, tests, and more tests. Here's what has surfaced so far and as much as I'm comfortable revealing. Her asthma remains and after today's pulmonology visit...is still pretty bad. The lung Dr. today said we need to be very aggressive in treating her from now on because her oxygenation is pretty sad.:( We got new scripts and are going to do just that. Leni also had an overnight sleep study done which revealed 'obstructive apnea with excessive sleep fragmentation'....in other words...she stops breathing in her sleep 3-4x an hour. Yuck. Put that on top of low oxygenation levels anyway and now we know why the poor thing has struggled. We will be seeing an ENT on Monday to schedule surgery to have her tonsils/adnoids removed ASAP. The next test will be a daytime sleep study that will look further into another possibility .... She currently has a cyst at the base of her brain stem that they are checking to see if it's putting pressure on the stem. That could also be aggravating her symptoms and causing her hypotonia (low muscle tone) as well. There is a possibility of another surgery here as well.

This is alot for an 8 year old:) but we're grateful to God for his mercy over this little girl. Not once have we ever doubted His great love for her and we know all is in His hands as we walk this thru. Thank you for your thoughts and prayers as we walk this thru in a way that gives the glory back to God. He is faithful!!

Hello! We've been gradually getting test results in which is resulting in more tests:) Yes, things are showing up which is actually good news. We have another major appointment on Wednesday after which I'll be able hopefully to explain a little further what we've been up to.

Thanks for your prayers AGAIN!! Back again soon!!