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

Thanks!

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

The word that scares everyone....

On February 5th, we met with a new pediatric neurologist who was the polar opposite of the asshat who works in our county. The new doctor greeted Kate and crouched down to talk to her. She talked to us. She LISTENED to us. We loved her.

Even though she told us the exact opposite of what we wanted to hear.

Kate has autism.

And it's funny (well, funny as in "strange" and certainly not funny as in "we're having such a good time"), I've asked doctors repeatedly, "Are you SURE it isn't autism?" They kept telling me, "no -- she's far too outgoing." As much as I knew that Kate was suffering from autism, it still has hit me hard. Hit both of us hard. To be honest, we are both still feeling shell-shocked. Scared. Angry. Confused. But we know this the diagnosis fits.

Sadly, it fits all too well:

1. We have to work to get eye-contact from Kate. We have to ask for it most of the time. And ask for it multiple times. Or take away an item. Or snap our fingers. Or clap our hands. Spontaneous eye-contact is rare.


2. Kate is absolutely pre-occupied with books. But because her fixation is books, even experts have overlooked this problem. "A kid fixated on books," they think, "what's bad with that?" Everything, if books are more important than people, relationships, learning, and living in everyone else's world.


3. Kate doesn't play with toys much. Or friends. When she does, it is because we have specifically taught her how and demanded that she do it if she wants her book.

So right now we are trying to learn and learn FAST. We don't know a lot, but we know this:

1. Autism is a medical disease that is evidenced by social withdrawal and several other physical symptoms such as digestive issues, sleep problems, learning problems, and impaired relationships.


2. If not treated intensively, it gets worse. Much worse.


3. The brain has a window of opportunity to be "molded" more easily. This is typically before age five. While good interventions always have their place, these interventions are more potent when the brain has better plasticity.


4. Some children can recover from autism; all can improve with treatment.



5. We're feeling fragile now, but we know we are strong. We could, however, use a few prayers right now.


6. Kate will become the best Kate she can be and there's nothing we won't do to ensure that happens.


7. God has blessed us with this beautiful, intelligent, intriguing, grace-filled child because we needed her and she needed us. God has a plan for us and, although it may be painful right now, we welcome His plan and every opportunity to show the world that everybody matters. We are still The Lucky Ones.

More later, but we wanted to update those of you who were wondering about Kate's appointment. The new neurologist has been a definite blessing. She also ordered more bloodwork on Kate (bloodwork, by the way, that I had requested from the AssHat neurologist of our county), and it's all come back abnormal. We will also be doing a 48-hour ambulatory EEG to determine if the abnormal electrical activity is truly seizures or something else. More on that fun procedure later.

Please keep us in your prayers. We'll be fine, but we're just in a bit of pain right now. Ultimately, we're grateful for a diagnosis that is leading us to a better understanding of our sweet girl.

With love from our home to yours,

The Lucky Ones

China Weather Update

Addison's orphanage is in a city that was one of the hardest hit by the weather crisis, but thanks to the wonderful organization, Half the Sky, they received funds to purchase heaters, diapers and other needed items to get through this difficult time. It means the world to know that our son is the recipient of so much love.

That's the really neat thing about adoption: It involves so many people who love our children before they can come home to us. With Kate, we believe she had a birth mother who loved her, we know she had a foster mother who loved her and nannies that adored her.

With Addison, we have pictures of him with his foster mother, with a volunteer in the hospital when he had his heart surgery -- we know he is deeply loved. I really believe that the gifts of love he is receiving now is what God has planned for him before we can love him in person. I guess that's why I'm okay with the waiting.

Anyway, thanks for your prayers for the Chinese orphanages. They are still struggling and Half the Sky continues to do what it can to provide them with what they need.