"It's too bumpy"

My poor baby is so tired from the Clonazapam. It makes me sad. He just lays there and whines. So please pray that he gets used to this medication soon.











Our Faith Family (Bible study group) got together for a cookout yesterday. It was really nice just to be with some other adults and families for once. There was swimming, horses, yard games and good food. Andrew did really well too, once we got the videos going.

Anyway, Aaron had the opportunity to ride a horse. He wasn't too thrilled with it and his fence climbing skills need some work. So much for the Iowa farm boy thing. He went for one ride on the horse and then wanted off because it was "too bumpy". That's his friend Mariah in the front.

They say it's my birthday

Mom and my sister Becky came up for a visit from Arkansas last week. Unfortunately it was for Kermit's funeral, but I was glad to see them none the less.

Anyway, it just so happened that last Saturday was my birthday. Grandma and Bets came up and brought lunch which was very nice. I would love to do it more often. Maybe I'll post pictures of them later but I wanted to show off the ones below this time.

I love this picture of Aaron and Andrew. It's not so often that I get a good one of the two of them together, so I'll take what I can get. Sometime this year I need to work on getting portraits done. Andrew just doesn't like to cooperate overly much and so the times I have tried it's been a complete waste.



This is mom at her finest. She always has to work so that she can get the "perfect picture". You turn this way, that way, smile like that again, etc. Here she is explaining why she does that so she can get a good picture. I think this is priceless.

Becky and Andrew of course. Looks like Andrew is about as tall as Becky who looks like she's about to lose control of the situation. The kid loves to squirm and would scoot right off your lap if you let him.

Mom spends so much time trying to get everyone to pose just right so she can get that perfect picture. I maintain that the candids are the best. This one could never be posed and is well worth framing.

All wired up

Andrew and I just got back from our VEEG at the University of Iowa Children's Hospital. Andrew cooperated very well and had a seizure while the resident was making rounds. He then very nicely had another seizure while the neuro was visiting.

Andrew is having what they call tonic seizures with some frequent myoclonics as well. The seizures seem to be provoked by sound about 75% of the time which means there are many times when they just happen out of the blue. Dr Matthews is starting Andrew on a very low dose of Clonazepam (Klonipin) to see if we can get them under control. Our concern is that the seizures are getting longer (up to 40 seconds) and that there is some tonic-clonic activity starting. (Don't know what a tonic seizure is? Scroll to the bottom of this entry).

Anyway, I've got some pictures. This first one is Andrew very happily playing with this wonderful toy they had at the hospital. I was told by the nurse that they get these toys just so we parents must go out and purchase them. LOL This is the same toy that he was playing with when Dr Matthews stopped by and he happily had a very strong tonic seizure. He jerked so hard the toy went flying about 6 feet. I guess this means Andrew only gets plastic, no fine china for him.



This is Andrew all wired up. He hated it when they put those electrodes on. The air gun thing really scared him.


What are tonic seizures?

Tonic Seizures

What are they like?
Here's a typical story: "When Jeff has an episode, he just stiffens up. Both arms are raised over his head and his face has a grimace, as if someone is pulling on his cheeks. If he's standing, he may lose his balance and fall. These seizures don't knock him out like the tonic-clonic seizures, but if he has a few close together, he is often tired."

How long do they last?
Usually less than 20 seconds.

Tell me more
Muscle "tone" is the muscle's normal tension at rest. In a "tonic" seizure, the tone is greatly increased and the body, arms, or legs make sudden stiffening movements. Consciousness is usually preserved. Tonic seizures most often occur during sleep and usually involve all or most of the brain, affecting both sides of the body. If the person is standing when the seizure starts, he or she often will fall.

Who gets them?
They are particularly common in people who have the epilepsy syndrome called Lennox-Gastaut syndrome, but they can occur in anyone.

What's the outlook?
Tonic seizures in Lennox-Gastaut syndrome may become more difficult to control over time. Some patients do achieve a good outcome.

What else could it be?
Children with neurological impairments sometimes make movements that could be mistaken for tonic seizures. The EEG should be able to tell the difference.

How is the diagnosis made?
The EEG can clearly show these seizures if they occur during monitoring.

Topic Editor: Orrin Devinsky, M.D.Last Reviewed:2/11/04

About times of disappointment

About times of disappointment…

Hebrews 11:13 All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. (NIV)

Disappointment comes to every person. The more you aspire to do things of high importance, the greater risk you face in being disappointed. Suffering disappointment is normal. However, how we handle disappointment is often a major test of faith. Some people blame God for arranging life in ways that go against them. Others blame fate for bringing disappointing circumstances. When disappointment comes to you, you then have an opportunity to praise God and pray for God's hand to be upon you. In any disappointment, God can fill your heart with inspiration. In disappointment, we cannot truly hold the love of God in our heart and stay disappointed very long. God's spirit in your heart helps you see past the disappointment. When you encounter a setback, God is always ready to help you, guide you, and supply you with all you need to deal effectively with times of heartache. Earthly plans can fall apart. Hope grounded in things of this earth can evaporate in an instant. However, the essence of hope is Christ. In Christ, we always have a permanent hope that transcends every heartache in this life. When you receive bad news, Christ stands beside you and tells you there is always a new day, a new way, and a new hope. You may have times when what you think you want is what you think God wants. However, what you should want is only to do God's will.

***********************************
Our lives are full of disappointment, at least I'm disappointed in something or someone virtually every day. Generally I find I'm more disappointed when things don't go the way I want. It still makes no sense to me why things need to be so hard.

If I were going to be keeping track of Andrew's seizures in this blog I would have to report that he had 5 seizures this morning between 7:30 and 9:00. At least those were the ones that I saw.

Have I told anyone yet how much I hate seizures?

Well I do.

Missing Hunter is Found in Creek

Missing hunter is found in creek
By Jewel Miller Dispatch Correspondent



MACON - The first sign to passersby that a breakthrough had come in the search for a man missing since Wednesday evening came when the spacious green lawn at the home of Miriam and Morris Miller was empty of the vehicles, horse trailers, 4-wheelers and boats that had virtually covered it for two days.Only a few cars and trucks of family and friends remained on Saturday morning and the air was hushed and still.
The body of 34-year-old Kermit Gingerich of Kalona, Iowa was recovered in the remote regions surrounding the Noxubee River west of Macon on the Millers' farm at 9:05 p.m. Friday, according to Curtis Gandy, boating and safety coordinator for the state Department of Wildlife, Fisheries and Parks.After finding Gingerich's raincoat, binoculars and other personal items, his body was discovered a short distance away submerged in a creek, Gandy said.The discovery ended an intense search and recovery operation that began on Wednesday evening when Gingerich didn't show up at the Miller residence where he was staying.Family members and friends said they'd been told Gingerich apparently drowned, but authorities would not confirm a cause of death until an autopsy is completed in Jackson early this week. But authorities said they do not expect foul play but rather think Gingerich got lost in the woods and likely hurt himself or stumbled into the creek in the darkness.Gingerich and a friend, Aaron Swartzentruber, also from Kalona, were visiting the Millers and spending their days hunting wild hogs in the remote area west of Macon.After several days successful hunting, the two went back to the untamed bottomlands Wednesday, the day severe thunderstorms caused flash flooding in the area and Gingerich never returned.Swartzentruber said he returned to the house expecting Gingerich to soon follow but when he didn't show up by nightfall, Swartzentruber called friends who went with him back to the hunting grounds.For the next 52 hours someone was searching for Gingerich nearly all the time. The search operation included combing approximately 500 acres of land bordering the river on foot, on horses and 4-wheelers, and by boats, Miller said.Searches by air were conducted with local pilots flying over the area Thursday and the Air Force National Guard Recovery Unit from Jackson assisting with a helicopter Friday. Gandy said at least 60 people were involved in the search with about 35 actually walking on footDogs from the Golden Triangle Canine Search and rescue team and from Search Dogs South of Byhalia were dispatched on Thursday.Officers with the Wildlife, Fisheries and Parks, Emergency Management, Mississippi Highway Patrol, Noxubee Sheriff's Department, Macon Police Department, firefighters and many friends and volunteers assisted in the search, Gandy stated.Gingerich was married to the former Kim Slabaugh of Kalona for 12 years. They have four children, Kayla, 10, Kelsie, 8, Karson, almost 7, and Keegan, 3, all of Kalona. He was the son of the late Rudy Gingerich and Marianna Gingerich, also of Kalona. He is survived by three brothers and two sisters.An automotive mechanic by trade, Gingerich is remembered as a hard-working family man.“He was a good provider, such a hard worker and so proud of his children. How do we tell them what happened? Karson is going to turn 7 next week and was going to join the ball team. Now this happened,” said Virgil Slabaugh, Gingerich's father-in-law.Slabaugh expressed appreciation for the members of the search party.“Those were real people out there. How can I say what they mean to us? I just can't say enough good things about them,” he said.Arrangements are being handled by Peterseim Funeral Home in Iowa. Contributions to the family can be sent to Cornerstone Community Church at P.O. Box 728, Macon, MS, 39341.

Copyright © 2006
The Commercial Dispatch
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P.O. Box 511
Columbus, MS 39703
Phone: 662-328-2424

Andrew

In an attempt to journal about my life, I should probably introduce Andrew because he is such a huge part of my life. Andrew is my youngest son and he has cerebral palsy as a result of Hypoxic Ischemic Encephalopathy (HIE). Now I could go into great detail about what that is, but today it doesn't matter. Maybe I'll get into that on another day. It'll give me something to write about.

Anyway, he's now 5 1/2 years old. He goes to ECSE (early childhood special ed) at Praire Crest Elementary school. He LOVES school. He always breaks out into a huge grin when he sees the school bus coming.

The picture below is from our trip to Tuscon, Arizona this past January. I know, it's been a few months ago, but I guess I'm just slow. We had a couple of hours to spare before we had to catch our flight to Cedar Rapids so Andrew and I stopped to visit the botanical gardens and happened to catch the butterfly exhibit. I honestly don't think Andrew was too thrilled about it. It was hot in there and he just wanted to go home. We were able to get some cool pictures though. And yes, that is a butterfly sitting on Andrew's hand.

Held

I meant to post this song and the lyrics back in March. If you've never heard the song "Held" by Natalie Grant, you need to. Especially if you have a sick child or have lost a child.

Held

by Natalie Grant

Two months is too little.

They let him go.

They had no sudden healing.

To think that providence would

Take a child from his mother while she prays

Is appalling.

Who told us we’d be rescued?

What has changed and why should we be saved from nightmares?

We’re asking why this happens

To us who have died to live?

It’s unfair.

Chorus:

This is what it means to be held.

How it feels when the sacred is torn from your life

And you survive.

This is what it is to be loved.

And to know that the promise was

When everything fell we’d be held.

This hand is bitterness.

We want to taste it, let the hatred NUMB our sorrow.

The wise hands opens slowly to lilies of the valley and tomorrow.

(Chorus)

This is what it means to be held.

How it feels when the sacred is torn from your life

And you survive.

This is what it is to be loved.

And to know that the promise was

When everything fell we’d be held.

Bridge:

If hope is born of suffering.

If this is only the beginning.

Can we not wait for one hour watching for our Savior?

(Chorus)

This is what it means to be held.

How it feels when the sacred is torn from your life

And you survive.

This is what it is to be loved.

And to know that the promise was

When everything fell we’d be held.

This is what it is to be held

And to know,

that the promise was when everything fell,

we'd be held