More better

How many seizures did I count today? Zero. Zip. Zilch. I didn't see ANY. Can you believe that? Annie has made steady progress since getting out of the hospital, and has gone from 4 seizures an hour to none. And when the seizures go away, she just seems so "there". Her eyes are so expressive, and her vocalizations are so intentional. I just hold my breath when these little windows of the old Annie peak through.

She is also drinking from her sippy cup again--which she wasn't doing when she was in the hospital--all the seizure meds made her droopy and unable to control her swallowing.

This afternoon, PT Janine came over and worked with Annie in the walker/gait trainer. Annie made some sit-stand moves in between her yelling, so we'll practice that in 5 minute increments for awhile--until she sees that she can maneuver the thing to get from point A to point B. Pray that she has motivation to move. Motivation and initiation are not her strong suit.

Tomorrow we go down another notch on the Ketogenic Diet. Again--appreciate your prayers that she not have any seizures as she makes this next adjustment.

I've saved the best for last: This past weekend while we were out at the store, I stopped her stroller and walked around a display, then came back in front of Annie. When she looked up and saw me there, she smiled and said, "Hi." Okay--that is the first time she has initiated a greeting in 18 months. Thank you, Lord!

Jean

Here we are
Here we are
Bandaged and bruised
Awaiting a cure
Here we are

Here You are
Here You are
Our beautiful King
Bringing relief
Here You are with us

"Remedy" by David Crowder

Weekend Update

Annie has been getting stronger every day since coming home from the hospital--what a relief! I have an idea as she weans off the Ketogenic diet that she will have even more energy, but I'll have to document that before I submit it for publication. We'll take another step down next week, and see how she does.

Meanwhile, the kids just got out of school for the summer, and we're getting into that summertime zone. Fortunately, Annie will be getting school OT/Speech services through the month of July, just to keep her bones loose and mind moving. We also are having a walker/gait trainer delivered on Monday, so that'll be a new adventure in mobility. I'll let you know how she likes it. Or you can ask my neighbors. They'll be able to tell right away.

Jean


Our Lord Jesus is ever giving, and does not for a solitary instant withdraw his hand... the rain of His grace is always dropping, the river of His bounty is ever-flowing, and the wellspring of His love is constantly overflowing. As the King can never die, so His grace can never fail. Charles Spurgeon

Home

We got home around 6 PM tonight. While we were at the hospital these past 12 days, we rehydrated Annie, got her seizures down to a low roar, and cleaned out her gastrointestinal system. Oil, lube and tire rotation. She's not doing handstands yet, but is more opinionated about her environment, so that must mean she's on the mend.

We'll go back to the neurologist later this week to get the plan for weaning off the ketogenic diet, and for getting the scoop on the VNS.

The sun is out, though, and I hear someone mowing their lawn. Millie is jumping all over the place, and I think everyone is glad to be home.

Thank you so much for your prayers!

Jean

Answers

Today Annie has had less seizures, no vomiting, and is taking a nap as I write. Do you think we've turned the corner?

If Annie stays hydrated and has minimal (or no) seizures, we may get out of here by tomorrow night. We have an appointment later this week with neurology to discuss long term ideas for seizure control, but for now, things seem to be calming down.

Thank you again so much for your prayers--God is answering!

Jean

Tough day

Well, so far, the nausea medicine isn't working. And, today Annie's seizures were incessant. Needless to say, we're still in the hospital. I wish I knew what was the cause of these problems. I don't know if they're all related, or if it is a number of random things happening at the same time. It's hard to watch her suffer like this. As soon as she sits up and looks around, she's hit with another seizure. We really need God's help.

Jean

"O our God...we have no power against this great multitude that is coming against us; nor do we know what to do, but our eyes are upon You.” 2 Chronicles 20:12

Standing in the need of prayer

I was thinking that our room here at Children's is like another space on the Bingo card, and maybe after we have a row of room numbers crossed out, we can win and get out of here--permanently. Wouldn't that be cool? The room backing up to this one is the room Annie was in the first time we were here. We've been in seven so far.

The doctors and nurses are working overtime to figure her out, so I am thankful for that. The people here really care for Annie, and spend lots of time trying to treat her complicated problems. Right now, they are looking into the possibility of a vagus nerve stimulator (VNS) implant as another seizure therapy. Her seizures are not giving up or going away, and medicine just isn't doing the trick. So that's a continuing prayer request--that God would heal her seizures, with or without medical help. Tomorrow she'll have an MRI to see if there are any anatomical reasons not to place the VNS.

On the gastrointestinal front, we started a medicine for her nausea today, and hopefully that'll kick in and start working soon. And on the endocrine front, she's been a bit dehydrated through this last week, so we're pushing fluids into her as fast as she will tolerate it.

Thanks again for ALL your prayers you pray in your car, at your kitchen sink, in your office, and when you hit the pillow at night. We are in need of every one.

Jean

"It is not enough for the believer to begin to pray, nor to pray correctly; nor is it enough to continue for a time to pray. We must patiently, believingly continue in prayer until we obtain an answer." George Mueller

Annie Files

Well, we were headed out the door of Children's this morning when Annie threw up. And the labs they drew this morning showed that she was dehydrated. So, we're here until a. She stops throwing up, or b. She stops having 20 seizures a day, or c. She perks up, or d. All of the above.

It's oddly comforting to know that the Really Smart doctors are as confounded with these problems as we are. But, we'll keep asking, seeking and knocking until Someone opens the door. My favorite quote from this week is from her neurologist, "I'm a physician, but I'm not the Great Physician."

Jean

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened." Matthew 7:7-8

Back to Children's

Last night Bill & I took Annie into the ER, because we thought her lethargy was getting worse. Preliminary tests were normal, (as they were in the endocrine clinic on Thursday) but the doctors are thinking that the lethargy may be caused by more seizure activity. The plan is to give her more seizure medicine, more hydrocortisone, and to Xray her belly to make sure there's not an obstruction.

Please pray that God would show the doctors what's going on, and what to do about it. And, as usual, please pray that Annie would be healed!

Thanks,

Jean

Some trust in chariots, and some in horses;
But we will remember the name of the LORD our God. Psalm 20:7

Hi again

I called the GI clinic this afternoon to schedule an appointment--or see if they already had--and their computer was down. "Call back in an hour." So, of course, I got sidetracked with stuff and thought to call back after 5. I've got it on my list of things to do tomorrow.

Annie is fighting a bug I think. A couple of us here at home are sneezing and achy, so that must be another reason she isn't doing well. I counted 18 seizures seizures yesterday, and about that many today. She is very lethargic, but still rouses for a smile now and then.

I made an appointment to see the doctor tomorrow, and we have an endocrine appointment on Thursday. And Millie got sprayed at the vet this week, and the bathroom got tiled, and it hasn't stopped raining today, and the Mariners are down by one in the sixth against the Angels.

Jean

Praise be to the Lord, to God our Savior,
who daily bears our burdens. Psalm 68:19