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Cerebral Palsy

Monday, May 28, 2012

Most of the time, cerebral palsy is the result of something traumatic happening to a child at birth that causes brain damage. Infection like meningitis, bleeding into the brain, or an extended lack of oxygen causes neurological damage to a child's developing brain.

Our little girl - our adopted grandaughter - has cerebral palsy from this kind of injury. But it didn't happen at birth. It happened when she was ten months old when she was shaken and squeezed by her father. During this horrible event, Allie stopped breathing, and had to be artificially assisted to draw breath as paramedics "bagged" her and then, in an intensive care unit in a San Fransisco hospital, by a machine.

Here are some symptoms of cerebral palsy:

  • Doesn't walk or crawl
  • Abnormal muscle tone ("tone" refers to the usually normal ability to flex and relax muscles)
  • Slouching
  • Startles easily
  • Seizures (with Allie, startling often triggers seizures - today that happened five times in four hours)
  • Lies in awkward positions
  • Difficulty feeding, sucking, and swallowing
  • Favors one side of the body over the other
  • Some muscles are over developed and some muscles under developed (Allie has an an abdominal six pack and strength I covet)
  • Bad coordination (this may be inherited from me)
  • Hearing trouble (Allie has acutly sensitive hearing)
  • Vision problems (Allie sees but is seriously visually impaired)
  • Limited range of movement

From time to time, I'm asked questions about Allie's condition and prognosis. Some of you read this blog and know our story. Some of you have just come across this blog maybe randomly or from clicking through my Facebook page or something.

I'll be honest: I'm writing about this here because it's emotionally and spiritually therapeutic. Today was rough because Allie had several seizures. Two of them occurred while having a little get together next door for Memorial Day. A five year old little girl having seizures in the living room brings the mood of the party way down. Our wonderful hostess cried. 

I just hold Allie and talk to her and sing her our song:
Lord prepare me
To be a sanctuary
Pure and holy
Tried and true
With thanksgiving I'll be a living
Sanctuary
For You

I don't know what else to do. It's a prayer and a soothing song. I know the Lord hears it. 

I used to get really mad at God for allowing such horror to happen. I'm not sure why I don't get mad any more. I don't have a canned answer for the question "how could a loving God let this happen?" If you have the answer, kindly keep it to yourself because it will probably fall flat unless you've walked through something like this. I'm not trying to be rude. I'm trying to be helpful. But now I'm a little sidetracked. 

I'm not mad at God because this little girl brings my wife and me incredible joy. We love to love her. I'm glad I'm the one who is there when she has seizures. Or is sick. Or can't sleep because her muscles cramp and ache. She's a gift. I can't imagine my life without her in it and I can't imagine my marriage to the Charming and Beautiful Susan if this trial had not come our way. I don't have the answer to how God could have let this happen, but I do know that Allie is the mission God has given us - gifted us - during the second half of our lives. And instead of question Him, I think I'll praise Him. 

Music Review: Tribe of Shrews–Careless Victory

Saturday, May 26, 2012

tribe-cover

It doesn’t happen that often. I’m not usually the guy who writes about a fresh sound. I’m the guy that writes about the stuff you’ve heard and has been around for awhile. But this…

This is beautiful, innocent, prophetic. It’s Arcadian Fire meets C.S. Lewis telling about Narnia.

I’m gushing. I know. I can’t stop listening to this disk. The first time I heard Dreams, I wept. I’ve played this for a few hipsters that love to hate everything they didn’t discover; Tribe of Shrews they love.

Careless Victory is Tribe of Shrews sophomore album. The production is amazing because these are kids in high school. The album is obviously Christian but not because it’s a cheesey rip-off of something top 40 with a high JPM (Jesus per minute) count forced into weak lyrical structure. This is Christian because it is hopeful, intelligent, original and artistic.

When you listen to this, you’ll want to see what these kids see.

Click here and get these tracks.

tribe-songs

Check out Tribe of Shrews on:

While strolling through the park this morning

Allie and I are home without the Charming and Beautiful Susan this weekend. Our routine on mornings that we're home alone is to eat breakfast, then walk to the park and swing awhile, and then walk over to Publix to pick up groceries needed for the day.


Our city is under a boil water order until Monday since they found fecal matter in one of our county's wells causing me to toss the pot of coffee brewed automatically before I got out of bed this morning.


Let me get back on track. So Allie and I walked to the park. I put her in the swing and noticed a hot air balloon overhead. I thought it would be cool to frame it in a shot of Allie.


This takes a bit of coordination when your pushing the swing with one hand and trying to keep your iPhone steady with the other. So I got a few shots and noticed that this balloon was traveling at an unusual angle. It was coming at us!


The balloon had some kind of malfunction and had to land in the park about a hundred yards from the swing set. That drew quite a crowd from the neighborhood.


Check out the video I shot. I hope my shaky hand doesn't nauseate you. I was pushing the swing and shooting in the first video and holding Allie and shooting the other. All from my iPhone.



Bless You

Tuesday, May 22, 2012

This is one of M&M's early influencers. Or not.

How to Survive and Flourish

Wednesday, May 16, 2012

This is one of the most amazing human beings I've ever met. The ministry Pastor Joel leads at Calvary Chapel Fort Lauderdale has given back to us a crucial part of our lives.


Happy Mother's Day

Sunday, May 13, 2012

My kid's have done nothing but make me look bad on Mother's Day. I usually get my wife a card from the drug store, but they always make something awesome which makes me look cheap. Thanks guys.

My son Aaron created a very cool video for the Charming and Beautiful Susan this Mother's Day that I've embedded below. He started texting her before the sun came up this morning to let her know this video was posted for her online.


Maybe you don't have the skills to give your momma a video like this, but write your mom a note. Here are some things you can tell her on the phone or write on a piece of paper:
  • Tell her your earliest good memories of her.
  • Remind her that she shaped and influenced you.
  • Let her know that you've never felt more loved or protected than when she took care of you.
  • Think about her cooking. Tell her about how your mouth is watering right now as you think about it.
  • Mom always believed in you. Think about that for a second and tell her about an event or period of your life her faith in you helped you weather.
  • She worked hard and taught you to work hard. Now you provide for and take care of your family. Give mom credit for that.
  • Are you creative? Do you like to read? Did mom teach you that? Remind her about it. She probably still has some of your school art projects some where. She'll pull them out and have a good cry.
  •  Tell mom how much you love her.

Seizures

Sunday, May 06, 2012

Allie has brain damage so seizures are a part of life. So many of our friends have stood with us in prayer for Allie over the past five years since she was hurt so badly. An assault against her at ten months of age resulted in an oxygen deprived brain and coma that lasted ten days. She emerged from the coma as a quadriplegic with cerebral palsy. Since then, she's had seizures.

Her seizures have not always looked the same. When Allie was one, she had seizures that caused head to jerk left and her arm to spasm in kind of sideways punching motion. That really freaked us out. We lived in rural Northern California at the time and the nearest neurologist was 275 miles away in San Francisco. We tried to describe the seizures to him, but our description fell flat. He was baffled.

The brain is a complex organ. When the brain sustains damage, technology only helps a little. Doctors are often left guessing and experimenting. Allie's seizures come and go. Sometimes seizure activity is high and frequent, sometimes she goes months without an episode. We've tried to manage her seizures with various prescriptions and mixtures of drugs with little effect except that she is often left lethargic and dopey. Drugs have not made a measurable impact.

Controlling the stimuli in Allie's environment has made the biggest difference. We noticed that Allie was having more seizures at home than at school. This was confusing to us. We thought it should be the other way around. For awhile, Allie had the highest occurrences of seizures in the morning when we were watching the news. We turned off the TV for several mornings and her seizure activity decreased dramatically. So we cut the cable.

When we shared this information with our doctor, we made the decision to start weaning her off of the medicines. She was taking three different kinds of meds at the time which meant we had to have her blood tested regularly to make sure she wasn't suffering tissue damage in her major organs. If controlling her environment achieved better results than drugs, we wanted to get her off the drugs. People with cerebral palsy have short life spans due to organ tissue damage, a common side-effect of drugs.

The recent bout of seizures Allie had on Friday started when she was in the sensory room at school. We're not sure if one caused the other, but it is the first time Allie has had a seizure at school in six months. She had five more throughout the day.

Friday night, I enlisted you all to pray. Saturday morning, Allie had one seizure as soon as she woke up and that was it. We had a quiet day at home that included a stroll through the neighborhood. She was fine all day. She was even ready for church Sunday morning. Usually, when she has a day of seizures, she has at least a week of them. Not this time, though, so thanks for your prayers.

Here is some more information about what Allie's seizures look like.

Startle Epilepsy
Startle epilepsy is a type of reflex epilepsy in which seizures are provoked by loud noises or sudden surprises. Most patients with startle epilepsy are only sensitive to one sensory modality (i.e. temperature, taste, sound, pressure); however, it is the unexpected nature of the stimulus, rather than the sensory modality, that characterizes startle epilepsy. (More...)

PTE
Post-traumatic epilepsy (PTE) is a recurrent seizure disorder that apparently results from injury to the brain. This injury may be due to head trauma or to an operation on the brain. (More...)

Reflex Epilepsy
Reflex epilepsy is a condition in which seizures can be provoked habitually by an external stimulus or, less commonly, internal mental processes. Individuals with reflex epilepsy may have seizures exclusively in response to specific stimuli and not suffer spontaneous seizures; alternatively, reflex seizures may coexist with spontaneously occurring seizures. (More...)

Let me share this last piece of information with you. This isn't scientific, but it is something Susan and I have observed in Allie's life. When Allie goes through a growth spurt, sometimes that, we think, contributes to increased seizure activity. On the other side of it, we see improvement in Allie's cognitive abilities. So, as horrible as one imagines these seizures may be (and they are horrible to watch Allie go through - we just hold her and pray), we wonder if they are a part of the brain getting better.
 

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