Leni Update...

"It's all about knowing God is for you and not against you-even in suffering. That's how grace becomes visible." Joni Eareckson.

I've had several inquiries about how our Leni's doing so.....here you go. In a nutshell...much, much better...but SLLLLOOOOWWWW. Asthma is a funny animal and can turn on a dime. About the time you figure out what the triggers are...there comes a turn in the road and another issue flares up. We're used to having a rough February....and a rough May, and somewhat of a rough September. This episode totally caught us off guard and was very scary. A week after our hospital visit....our lungs are still struggling but not as critical. We do routine lung function testing and had just recently passed at the beginning of the month with flying colors. Her levels should be around 283.....in the hospital they were below 100...and are now, a week later back up between 125 -150. Progress...but not great. That means weak muscles, weak brain functioning, and overall fatigue. On top of that we've had several side effects from the meds this time that we hadn't counted on. Bleah. We're still on a nebulizer 1.5 hours a day. That really cuts into your scheduling:) and we're having to be very careful about secondary infections. It is hard, it is time consuming, you get plain old weary from being up all night but it is truly a privilege to care for this child knowing God has time and time again spared her but has/is also allowing her to endure sufferings that would challenge the strongest among us.

All that to say....her attitude is magnificent! This child is so used to not feeling good that to be even somewhat better is sending her to the moon. She's the most amazing display of grace while being chronically sick most of her life that I can think of! So...thank you for your prayers....thank you for your kind words and concern. No question God's hand is and always has been on this child. She's taught me more about how to live by God's grace in her short 8 years than I had ever learned before. I think anyone that has a child with a SN can and will attest to that. To top it off.....this is only one of the issues that we're working through medically with this sweet girl. I've said it before and I'll say it again....I want to be like Leni when I grow up. More soon!

Some Are More Help Than Others...

The ladies decided to make cookies for this Mommy's birthday yesterday....and in most ways I was amazed. The older two are learning liquid measures in school and this was excellent practice time. Katie is a natural organizer and very 'neat' by nature. She is going to live with her mommy forever because I can hand her a basket of laundry and come back a few minutes later to find everything perfectly folded and matched. So....with our cookie adventure....the hierarchy emerges quickly. Leni thinks dough ..any dough is playdough, Kristin is the natural bossy boss and quite enjoys giving instructions (see it in her eyes??!!) and Katie takes her time with a project, is a perfectionist and a detail person. The cookies came out awesome...and the kitchen is somewhat still intact. Heh.

Leni is some better. The fever is gone (whooooooo!!!!) but the breathing issues remain and are very, very stubborn. This was a doozy of an episode for her. Duh, right?! She's still on multiple steroids and breathing meds....and remains pale and weak but everyday we're seeing some progress. She's such an example of a sweet spirit when suffering! I want to be like her when I grow up
!!

Bronchitis Gone Bad

All 3 little ladies have had low grade fevers and coughs at random intervals lately. No big deal. However Monday night Leni's fever spiked to 105 (no typo here!) within just a couple of hours. Add Asthma into the mix and it was not just a little scary. We ended up in the Hilton (aka. hospital) Tuesday for chest x-rays and lung function tests. We passed the x-rays but not the lung function:( Our little princess is home...pumped up on steroids and other stuff that Scott can tell you all about....and thanks to many prayers no longer running a fever. We're still not breathing well....but been there, done that and hopefully in a couple of days we'll be up and running again. Now....if I could only get her to eat. She's refusing all food. Wish the Mommy was like that!

On a different note, Haitian evacuees had begun arriving at Florida Hospital South! Awesome!!

...and now, I shall go brush the other girls hair that hasn't been combed in 2 days!

haiti orphanage

No words necessary. Please pause the music first. We grieve greatly for this country.......

A Few Pics of What We've Been Up To.....

We went to "The Old Sugar Mill" and made pancakes on our table!! Miss Kathy got to go with us and what a fun, fun, fun time we had!!

This is one of my favorite pics of the girls...reflections of their colorful personalities in action. Self explanatory if you observe closely!!

Blondie here cut her finger on a steak knife and gave us some not-so-needed drama. Gross was the order of the day:)

Happy New Year!! Who knew Mulan here would take to the bottle?? Of Cranberry Apple Sparkling Juice that is! We had to pry the bottle out of her hands!

Doing lots of diagnostic testing on this princess. Here she is doing her lung function test during the coldest week we've seen in a LOOOONNNNGGGG time!

Florida has turned into a REFRIGERATOR!! Actually this day...a FREEZER! This is Julie shuffling to her car in sleet. Yes, sleet. Right here in sunny Florida. Write Al Gore a memo please!

Meet Hello Kitty! We heart Birthday Parties!!

The Princess Collection is back to school after the holidays! We sent our cousins back home to 10 inches of snow and they sent the cold back here to us!! Wish we could say things have slowed down but uh...don't think that's gonna happen anytime soon. The great Florida Freeze has been all consuming lately in our efforts to stay warm. We have even been known to sleep in our coats (Kristin) and wear our coat while making dinner (me) ...even with the heat on! Not good but hopefully to end soon. Don't know how you Yankees do it!!

Thank You Up North People!

We love all our northern friends but did you have to send your FREEZING COLD weather to our gloriously usually warm state??!! Here's what we are usually doing this time of year.....Making sand angels as compared to your snow ones....but the last few days have found us huddled under blankets and coats (and that's inside!!) while we try and not turn into pillars of ice!! Cold, cold go away!

(I am going to be hopefully redoing, revamping, restructuring the blog over the next-however-long it takes me period. Methinks it's time for an overhaul!!)