traveling adventures

I intended to post these pictures sooner but better late than never!

Last Sunday we were sent off with lots of love, gifts and prayers from our White Creek family! The drive to Michigan was actually quite smooth. We stopped in Coldwater to stretch our legs and met some old friends from our other church family (oops, I didn't mean to imply that you are OLD Julie!!)

Julie brought snacks and even Christmas presents for the kids!

We were so happy to see Eveline and Diane too!

Marcus was a little shy....

The kids got to run around the park a little bit too. All in all the trip to MI was not so bad- perhaps we are becoming better travelers?

We are blessed to have so many family members and friends who love us and help us bear our burdens.

surgery...

We just met with the doctor, and we intend to go ahead with surgery in the near future. They will remove that spot from her Rt. Parietal lobe. The doctor does not believe it is malignant, (though they will check) but she does believe it is causing her problems. The EEG shows epilepsy coming from all over, not just at this spot as a focal point, so this makes the outcome of surgery a little more uncertain... but as the doctor said, "We have had too much success in these kinds of cases not to do the surgery." She guesses a 65-70% likelyhood that this will stop her seizures.

We still need to do her PET scan (tomorrow) and record some more seizures on the EEG, but we expect to be done with testing on friday. Depending on lots of things, surgery could be as early as next week.

My greatest fear for Aggie was that surgery would not be an option and they could do nothing to help. My second greatest fear is probably surgery!

I am doing alright if I can keep myself in the present and not get overwhelmed by thoughts about what is to come... I find He provides plenty of strength for the present moment... and that is enough. So we are taking one step at a time, and clinging to the Lord's hand to keep from freaking out!

Good morning from Aggie!

Here's Aggie all hooked up to the EEG and ready for bed! She is still sound asleep this morning. I am glad to see she is getting some good rest!

The poor girl absolutely hates getting the EEG leads put on her head. It doesn't hurt, but they draw on her head, then use glue and an air gun to dry the glue. Something about the sensation makes her absolutely bonkers- she screamed bloody murder for a good half hour I think. She calmed down about half way through (was it exhaustion?) Josh said that was an improvement over the last time she had this done.

Other than that she is doing fine. I love watching how she makes everyone here laugh by just being her! For example, a nurse came in last night- she walked up to the bed and before she could say anything -
"I'm called Aggie."
"Well hi Aggie! I'm called Elaine... Queen Elaine. Are you princess Aggie?"
(very serious) "NO. I'm called Aggie.... And I'm Peter Pan."
"Oh, well it's nice to meet you Aggie Peter Pan!"
"I'm Aggie Sue Cook. Aggie Peter Pan. Aggie Sue Cook Peter Pan." (huge Aggie smile)

I was on duty in the room last night. I am so glad Josh and I can take turns so neither of us get too burned out! Why do they draw blood at five am, and always send someone loud and chipper to wake everyone up?! But those things are easier to bear if I see them as a small contribution towards Aggie getting better!

Little Eldon is also making people smile, flirting as much as possible with anyone who walks in the room. When he is not flirting he is making certain mommy is holding him... he seems very unsettled away from home.

So today we are just here, hanging out, the people with the kids with the strange names, waiting for seizures. She has nothing scheduled for today other than sitting here on the EEG, so we will take turns entertaining each of the kiddos.

Will post more later, Aggie is up now and wanting her own computer time! Thank you all for the prayers- I am certain God is upholding us every second!

a quick update

I only have a few minutes before we head to the MRI room, but I wanted to give a quick update. We made it here just fine, really like Aggie's doctor- she spent over an hour with us this morning getting all the details, and Aggie even showed her a seizure :) She seems extremely intelligent and ready to tackle this problem, and she also listened to us intently. She noticed a new detail too- Aggie has trouble hopping on her left foot- this could indicate the 'benign' spot in her brain is affecting her motor skills some.

As she explained, the upcoming tests will decide three things:
1. Is surgery possible? (Will it work?)
2. It is safe? (where is the trouble spot in relation to other things?)
3. Is it warranted? (Dr. Wyllie said based on the severity of her epilepsy, we already know this answer is most definitely yes.)

Aggie is hanging in there- I guess today it is a good thing that her constant seizures make her somewhat tired and unaware of what's going on... she's quietly watching TV right now as we wait for her MRI. The rough parts for her are still to come- the IV poke for sedation, then the application of the leads for the EEG and PET scan. She knows this but doesn't dwell on it... as we walked out of the doctor's office this morning she entertained the people in the waiting room with several rounds of "zippa-de-do-da, zippa de ay! My oh my what a wonderful day!" What a kid!

Off to Cleveland

One day a was father walking through the woods with his daughter.

He stopped and asked her, "Honey, do you know where we are?"

She said, "No."

"Do you know where we are going?"

"No."

"Well, do you know how to get home?"

She looked at him and said, "No, but you do, and that's enough!"


As we head to Cleveland, I pray for childlike faith like this. As we hold God's hand and head into the wilderness, we can rest in the knowledge the He knows where He is taking us. May God comfort and strengthen us, so that we can pass on that comfort and strength to Aggie during her trials this week.

(The quote above is a rough paraphrase from "the Angels were silent" by Max Lucado... at least my sister thinks that is where she got it!)

Lord, please watch over all my fragile children!

While eating lunch with Aunt Mary Anne today, little Marcus choked on a hotdog! He was not breathing at all, so she did the heimlich maneuver on him! Way to go Aunt Mary Anne! He's fine now... and she said she will be! (probably after her heart calms down a little!)


Marcus is a special kid! As Nana explained, "he's the kind of kid that will give you the cutest smile ever, and a huge hug... and be picking your pocket at the same time!" God is going to have to save him from more than just hotdogs as he grows up... I wonder if he ever assigns two or more guardian angels to watch over the more difficult children?

Acceptance and fight

I am starting to accept the uber-vigilance required to care for our little Aggie. This still strikes me as strange as she seems so… normal I guess, during her good times. But she is not like other four year olds who can be allowed to play freely on the playground or the trampoline or the beach. It is highly likely that she will lose consciousness for seconds or minutes once every hour or two- and she falls with her seizures at least once every day. This is not undue mama-anxiety I am fighting- a fall really could cause serious injury or death. So if I am going to allow her to do risky things, (like leave the house) I must stay close and keep watch. (Put on your lace-up shoes, flylady. You are going to work!)

So as I have my morning coffee I often give myself a little peptalk that goes something like this:

Today Aggie will have seizures. Today Aggie will require extra-ordinary supervision, mind-alerting drugs, and emergency preparedness plans. Today my attention will be divided, and the other children will not get everything they want. Today my seizure antenna will be on high power, and my feet will always be ready to catch her when (not if) she falls. Today if we go out in public, we will risk embarrassment and injury. Today letting her “be a kid” will come with anxiety and constant supervision. Today we must live with epilepsy. (And Lord, please give me what I need to live in this world today, and keep working on that better plan for tomorrow!)

Yet we cannot afford too much acceptance at this stage, for Aggie's sake. We must fight for her, become her advocates, do everything we can to get her the best help available. As a friend from the epilepsy foundation forums said to me, “even while you still love the aggie with you, never forget to love that aggie that she was first, or was meant to be, that is hidden in her heart... just hold it as a treasure that is on the shelf... and love the treasure that is out in the open daily...”

So as I get ready for Cleveland, I go accepting that this is our trial at the moment, but I also go with the willingness to do anything, to try anything, if it can help Aggie be Aggie again.

Jesus go before us!

Am I cute or what??