Scratch that

Well, the fludrocortisone seems to have balanced out her hydration a little--the circles under her eyes aren't as dark, and she isn't wetting through her pants as much--we had been going through at least 2 pairs of pants a day at school--but, now, instead of less seizures, she seems to be having more, and on top of that, she's been pretty quiet and drooling sometimes. She's also thrown up once a day for the last 3 days. And she's not giving me the same warnings as in the past--it's more like: "Oh no! Get the buck...et." Too late. ...but I digress.

So--is she drooling because she is retaining more fluid, or is she drooling because she's having seizure activity? I have a call into the neuro nurse to talk about it. And, we'll do more lab work on Monday to see what the effect of the fludro has on her electrolytes.

You know, I didn't pass chemistry...in fact, I don't even think I took chemistry, and I barely got a C in biology. But I wish I could figure all this out, and I know you've heard that a million times already. We all wish we could figure this out, right? Too many medicines, too many body systems, too many symptoms.

But let me finish this post out with a little good news--you know, besides the fact that we don't have swine flu yet. So I was reading to Annie yesterday about the 10 little ladybugs who got eaten by various animals and then magically reappeared on the last page happily playing with their predators. Anyway--when I got to the fish who ate the ladybug, Annie said, "fshhhh." Then today at speech therapy I was reading her the Brown Bear story, and when I got to the page with the goldfish on it, she said, "fssshhhh." Now, of course, she won't repeat this word on command, but she definitely said it--twice, in context.

She also said something that sounded like her nurse, Moira's name--both yesterday and today when I dropped her off and picked her up. When I turned around in the van to ask her if she was saying, "Moira," she just gave me a big grin and then looked out the window at Moira.

Two steps forward...

Jean

"...being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ;" Philippians 1:6

The news for today

I took Annie to get her VNS ramped up again yesterday, and then today we saw Dr. B. to discuss the results of last week's blood test. (She passed.) We are going to try fludrocortisone again--it's a medicine to keep her hydrated, and to hopefully have a positive effect on her seizures. Like I said in the previous post, I think that her Addison's issues complicate her seizure disorder, and if she is more perfectly balanced, maybe her seizures will go away, or lessen.

The endocrine & metabolic systems are so complex and are constantly making adjustments to maintain a perfect balance in a normal person's body. But Annie's systems are artificially maintained with hydrocortisone and now fludrocortisone, and I believe when she's the least bit out of whack, it causes more seizures. At least that's my story this week.

So:
Better hydration = less seizures.
Less seizures = more alert Annie.
More alert Annie = more functional gains.

That's what is so neat about that picture with Gretchen--when she's alert and paying attention, she is THERE. For instance, this evening while I was dressing her after her bath, I said, "stand up," and she stood up immediately. I also heard a couple of different sounds today...I really believe that if the seizures go away, she will talk. And, yes, I am an "eternal!" optimist.

Jean

I am the Lord, the God of all the peoples of the world. Is anything too hard for me? Jeremiah 32:27

What's new

As I mentioned in the last post, I wanted to fill you in on how Annie is doing, and things to pray for.

First, the good news: She hasn't been in the hospital since June of '08. She has been quite stable, and for the most part, healthy--with the exception of the cold she has now, of course. Cough, snotty nose, the usual. Please pray that it go away quickly.

Now, for the prayer requests:

1. More strength in her torso, as well as balance. She walks in her gait trainer, but her strength to walk by herself is limited by the weakness in her hips, and general lack of standing balance.

2. Seizures. She still has about 4 or 5 a day. Along with the seizures are the 3 seizure medicines that make her already compromised brain even slower. If the VNS worked, and the seizures went away, and we could wean down/off some of this seizure medicine, we might get a more alert kid.

3. However, I think the effectiveness of the VNS is also affected by The Addison's Disease. Why? Because a normal person has fluctuations of adrenal function throughout the day, but Annie's adrenal function is only as good as the doses of hydrocortisone I give her through the day. If her regular dose is what she needs, great. But if she needs more, I'm usually behind the 8-ball on it, i.e., I realize she needs more hydrocortisone as I am cleaning her lunch off the carpet. Also, I think that some of her seizure activity may be caused by her endocrine system being out of whack. Because this week, as I am giving her more hydrocortisone for her cold, she is having less seizures. And seizures can be caused by endocrine problems. Anyway--this is probably too much information. Even my eyes are starting to glaze over.

Bottom line--please pray that God would tell me what to do. Sometimes I feel like if God would just point out something--probably something obvious--that it could have a huge impact on Annie's recovery, or at least, her quality of life.

Thank you for remembering her in your prayers.

Jean

Remember, O LORD, Your tender mercies and Your lovingkindnesses, for they are from of old. Psalm 25:6

Easter Monday

So I sat down to write this evening, and suddenly, my computer started spitting out pop-up after pop-up of imminent threats of takeover from malicious viral bugs. And since Bill had gone to bed early because he had to drive Andy back to school last night and didn't get home until after midnight, I didn't want to wake him up to launch a counterattack against this Trojan virus that was about to take out my computer, my children and all things precious to me in my house. So I woke him up. He jumped out of bed, karate-chopped the virus, buried the Trojan in the backyard, and now I'm safely back at the computer.

Now before we move back to another Annie update later this week, I just have to say one more time: Jesus is alive! He died for our sin on Good Friday, rose from the dead on Easter Sunday, and lives today. And as our pastor reminded us yesterday, each of us need to be born again--even moral, good, religious people. Jesus declared, "I tell you the truth, no one can see the kingdom of God unless he is born again." John 3:3

We're all born sinners. But being born again is admitting to God that you are a sinner, believing that Jesus died on the cross to pay for the punishment for your sin you deserve, and committing your life to follow Him. Simple--and you can do it right now.

Jean

Herein is love, not that we loved God, but that he loved us, and sent his Son to be the propitiation for our sins. 1 John 4:10

It is Finished!

“Man of Sorrows!” what a name
For the Son of God, who came
Ruined sinners to reclaim.
Hallelujah! What a Savior!

Bearing shame and scoffing rude,
In my place condemned He stood;
Sealed my pardon with His blood.
Hallelujah! What a Savior!

Guilty, vile, and helpless we;
Spotless Lamb of God was He;
“Full atonement!” can it be?
Hallelujah! What a Savior!

Lifted up was He to die;
“It is finished!” was His cry;
Now in Heav’n exalted high.
Hallelujah! What a Savior!

When He comes, our glorious King,
All His ransomed home to bring,
Then anew His song we’ll sing:
Hallelujah! What a Savior!



Philip Bliss, pub. 1875

In the Garden

Today is Maundy Thursday, the day we remember Jesus' suffering in the Garden of Gethsemane before His death on the cross. This idea, that Jesus was a "man of sorrows and acquainted with grief," (Is. 53:3), has been of particular comfort to me this last month.

As many of you know, throughout your life after a loss, grief sneaks up on you at the most unexpected times--holidays, birthdays, at the tale end of winters that will never end. And as I was in the middle of one of these blue times a few weeks ago, I was comforted by the fact that Jesus--God who became Man--experienced sorrow and grief. In fact, His whole mission in coming to the earth was to suffer and die. I have known this since I was a little kid, but for some reason, it really sunk in: Jesus was a man of sorrows and acquainted with grief.

We think sometimes that God is far away and can't see our grief, or can't relate. But Jesus is our High Priest who knows what it is to grieve. He was alone in the Garden. His friends were asleep, and then they left Him. He was our suffering servant who came to pay for our sin with His own blood on the cross. Jesus was a man of sorrows and acquainted with grief.

Jean

He was despised and rejected by men; a man of sorrows, and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not. Isaiah 53:3

Grace upon grace

Six years ago Bill and I sat in a hospital room trying to decide what the newest Sullivan's name was going to be. We originally thought we'd just do "Anna Grace," after my mom, but we were worried that her name "Annie," would be confused with big brother Andy's name. "Let's do Annalee Grace," Bill suggested. "Sounds good to me," I agreed as he wrote it down on the birth certificate. We ended up calling her Annie anyway, which was fine except for that day when she was pretending to be a princess and insisted that, "My name isn't Annie, it's Cinderelella!"

Anyway, I was looking up the meaning of her name the other day, and I remembered that Anna means "grace," and, of course, her middle name is "Grace." But when I looked up "Lee," I found that it means "sheltered from the storm." God certainly has sheltered her from this storm, I thought. The mercy of her brain injury seems to be that her little mind has been protected from the grief she may have experienced...but I don't really know, it's just what I sense.

Looking back, we know it was God's grace that miraculously healed Bill from PSP, and God's grace that enabled this elderly mom to have Annie as a little celebration gift on April 7th, 2003. It is God's grace that wakes us up in the morning, God's grace that helps us keep pushing Annie to recover lost abilities, and God's grace that has rescued us a million different ways these last two years.

And as we step into Passion Week, it is God's grace that because Jesus died for our sin and rose from the dead, we know that one day Annie will be restored to complete and perfect health--either here or in heaven. And until our hope is sight, each day He gently gives one blessing upon another: grace upon grace.

Jean


And from his fullness we have all received, grace upon grace. For the law was given through Moses; grace and truth came through Jesus Christ. John 1:16-17