If you don't know, our daughter Ashley has left-hemiplegic dystonic Cerebral Palsy due to a mid-cerebral arterial branch stroke at 6 months of age following a fall which wrenched her neck and tore her caratid artery. Sounds fun! You can read more about it here. (I just posted my first link!)
It's not been an easy 12 years but it could have been so much worse. Her original prognosis was that of an 18 month old in an adult body! But God said, "Ha!" She has had 5 orthopedic surgeries: two heel cord lengthenings, one tendon transfer, one leg lengthening; plates on her "good" leg to inhibit growth and the removal of those plates.
There's been years of seizures. Possible brain surgeries. Drug trails. Drug removals. Emotional unheavals. Learning difficulties.
Oh, but God has been faithful!
So, here we go -
Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting
and repetitive movements.
Myoclonus is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign
and, generally, is not a diagnosis of a disease. The myoclonic twitches are usually caused by sudden
muscle contractions. A hiccup is a myoclonic reaction.
Doctors go back and forth between the two terms above to describe the condition. But this we do know: she is in chronic pain, mostly in her back. The meds dope her and make her too drowsy, tempermental and angry and, one wonderful drug - depressed.
Their suggetsions run two courses:
1.) Insertion of a Baclofen Pump -
Baclofen Pump The procedure for insertion of an intrathecal baclofen pump lasts 1-1.5 hours. The pump is inserted under the covering of the abdominal muscles while the patient is under a general anesthetic. A small catheter is inserted through a needle into the spinal fluid and is threaded upward toward the neck. The catheter is tunneled under the skin to the abdomen and is connected to the pump. The pump is filled with the drug baclofen and is programmed by a computer to continuously release a specified dose that is determined by the physician. http://www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#Baclofen
2.) Deep Brain Stimulation -
Deep brain stimulation (DBS) is a method of treating dystonia and tremor that involves an operation in which thin blunt wires (electrodes) are surgically implanted precisely into a small area deep in the brain. If the abnormal movement affects one side of the body, one electrode is inserted (on the opposite side of the brain than the body is affected). If both sides of the body are affected, bilateral (both sides) electrodes are inserted. The electrodes are tunneled under the skin down the neck and are connected to an electrical stimulator unit than can be programmed with a computer to stimulate the area of the brain at the tip of the electrode. The idea behind DBS is that fast electrical stimulation (130 times a second) interrupts the abnormal electrical circuit within the brain that is causing the abnormal movements. www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#dps
In two weeks, we visit again with the Neurologist in Denver. At that time, she may decide both are best, neither are any good or choose just one. Currently, the team is leaning towards Option #1 - Baclofen Pump.
How does that work?
On December 6, under general anesthesia, she will have a test dose of Baclofen inserted into her spinal column. After 2-3 hours of laying flat, doctors and therapists will begin evaluating her improvement. They will discuss their results and by 2pm give us a Go or No Go. A "Go" means surgery on December 8th and approximately 3-5 days in the hospital to adjust the medication and give the spinal column time to seal and heal.
A "No Go" means we look at two clinics on brain stimulation - Pittsburgh or Fort Worth. I have family in Texas, so I would be more inclined to go there. (Okay, it's Texas. 'Nuff said.)
How does Ashley feel? Well, the pain is wearing on her. We see her doctor again today. Baclofen pump - doesn't bother her so much. Brain surgery? Forget it! (Thanks to an episode of House where a brain surgery was screwed up, she will not even entertain the idea.)
Dozens of folks have lined up to shave their head if she has brain surgery! She smiles at that thought - a bald-headed church! A bald-headed family! wahahahaha!
How is Chris? He's our warrior - telling her to buck up, she can do this!
How does mom feel? Honestly? A little Weary. Not fearful. The path was laid long ago. But I know this road, been on it for a long time, it's as long and dreary as I40 through New Mexico and Texas. Honestly, I feel like a Gladiator. It's another fight. I know we will win. But is strains the nerves to hear the crowd cheer, my muscles are tight in expectation of the conflict but I'm on my knees preparing in the Heavenlies.
How does dad feel? It's his baby girl.
Not long after Ashley's stroke, my Great Uncle died. I loved that man! He had such a great sense of humour. I was so lucky to spend so much time with my Uncle PeeWee. On the way to his funeral, a song began to play - (I've taken the liberty of changing a few pronouns).
She's My Chld
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a girl that needs Your help
I've done all that I can do myself
Her mother is tired
I'm sure You can understand
Each night as she sleeps
She goes in to hold her hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see her?
Can You make her feel all right?
If You can hear me
Let me take her place somehow
See, she's not just anyone
She's my Child
Sometimes late at night I watch her sleep
I dream of the girl she'd like to be
I try to be strong and see her through
But God who she needs right now is You
Let her grow old
Live life without this fear
What would I be
Living without her here
She's so tired and she's scared
Let her know that You're there
That pretty much says it all.