Tuesday, March 18, 2008

No News is Good News

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
~ Philippians, 4:6
First of all, is it just me or does Kate look like a character out of Whoville?
So far, the news is good from the EEG room at Arnold Palmer Hospital. Thus far, Kate has had no seizures -- apparently one can have abnormal electrical activity without having seizures. And if Kate didn't have any abnormal brain activity, I would wonder if she was in the right family....

We are staying another night to make sure there are no seizures. The neurologist is taking her off of her seizure meds to see if this has an effect. By the way, her neuro saw HUGE improvements in Kate already, which we've seen too. She told us that the meds she's on, Lamictal, has a "side-effect" of improving verbalization in kids on the autism spectrum. We didn't know that ahead of time, so it's very interesting how we've noticed the same thing.

The best part of the day? Well, for me it was hearing the good news so far and also taking a shower when my good friend and Kate's godmother, Cindy, came to visit. Thanks for the visit and the delicious dinner. You are fantastic!

The best part of Kate's day? Look and see:
Daily Manna from the 'Net for Tuesday, March 18, 2008

Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective. James 5:13-16 NIV

This was actually our pastor's reading a week ago. How appropriate that I found it again today. A week ago, I couldn't pray because my heart was hurting so very much -- for Kate, for Scott and myself, for all the unknowns, for all kids with troubles. It was just one of those days that my defenses were finally broken and I cried all through church, hurt and angry. Today, I am so grateful for that wall being broken down. I have always known that God has good plans for me -- for all of us -- but I have a difficult time being vulnerable. I think that's part of what God's plan is for me --being vulnerable, trusting Him, letting go of some of my fears and worry.
This isn't to say that that I shouldn't be concerned, shouldn't fight for my daughter and be aggressive with getting her well. This doesn't mean my prayers will all be answered. No, it means that I can do all of that and still accept that God is working magic in my family and I need only to look and listen for His grace. And when I'm broken, I can come to Him -- even if I can't pray. I can trust that God knows my prayers even when they are too painful for me to consider. And I can trust the beautiful people in my life to pray on my behalf, which is exactly the gift given to me this past week.
It has been a healing week -- not entirely because of Kate, but definitely through Kate and the other dear people in our lives. Thank you for being faces of God, hands of God, hugs from God.
Hugs and love from our home to yours,
The Lucky Ones

Monday, March 17, 2008


Thank you for all the encouragement, prayers and advice. We really do appreciate all of it! It's been about six weeks since the diagnosis and we've found our footing again. Please keep the prayers coming, though. We all need as much help from the Big Guy as we can get.

Although it was tough to hear, the diagnosis has already had a positive impact on our lives. We have begun some behavioral therapy and have seen some positive results. Kate is attempting two and three word sentences with a LOT of prompting, but is more verbal overall. She is feeding herself, following more complex directions, and we are able to have a conversation of sorts. We are also waiting on an appointment with one of the country's leading autism researcher / DAN! (Defeat Autism Now!) physician, who just happens to be located about 15 miles away! I am playing phone tag with his intake nurse right now, but we are in line for an appointment within the next six weeks.

Kate and I are at Arnold Palmer Hospital right now for her 48-hour video and audio EEG. The EEG is to determine if she is actually having seizures or just some "extra" electrical activity. She has been a real trooper today -- especially through the gluing of the electrodes which was done in part with a little machine that blows air on her head and vibrates against her scalp. She was upset, but not as bad as I would have predicted.

Unfortunately, part of this was because she spiked a 103 fever after we got here, which made her a bit more complacent. About five hours later, though, the fever was gone. :) Truthfully, I'm grateful she's a little under the weather or else this being tethered to an 8-foot "leash" might be more difficult than it already is.

For your viewing pleasure, some pics of Kate with headgear. Even with headgear she's cute:

This is a pic of the monitor. The techs tell me the "ALARM" "ALARM" "ALARM" button that keeps flashing is not a problem. Good to know. And the cutie in the corner? That's Kate, my girl of the gauze....
I'll update you when we know any results.
Until later -- and with much love from our home to yours,

The Lucky Ones