I like order. I like organization. Things in their place.
I think the last time that happened in my house ------ well, I can't remember! Maybe before Chris was born. I've attempted several times since. All to no avail.
When we lived in Kiefer, our house was much smaller and I was much more organized out of necessity. When we moved to Colorado, our home was much bigger and suddenly, people felt the need to send things with us. Then we discovered new hobbies - skiing, 4-wheeling, hiking, camping - all which came with more stuff.
Now our kids are older, their stuff is bigger! I recently relinquished our classroom/office to the kids for a music room. The contents include, but are not limited to, 5 guitars, 1 amp, 1 effects machine, 1 electric piano, 2 trap sets, 1 bongo, 1 harpsichord. . .plus all the ecoutrements associated with each item. Our office/classroom is now in the downstairs "living" area. So the old drum room, a 15x 10 room which housed drums and a reloading table as well as an extra refrigerator and ironing board, now also has a futon for guests!
Ah yes, let's go to the Beach's and sleep in the tiny little hallway! Not to fear, friends, there's heat in the trailer. And it's much quieter away from the drums.
Suffice it to say, we live in our house. Every inch of it. The first few years we were here, we lived upstairs and kept the downstairs prestine - guest bedroom, guest bath, laundry room and storage room. We occassionaly played games down there. But now, we are everywhere!
And I have thrown organization to the wind! I am embracing the chaos! I am learning to love the mess. Each stack of papers or clothes is a remiinder of the wonderful life we are living.
So, I return now to the three baskets of papers in my "Living Office" and keep sorting through papers and making piles of pictures that will one day make it to albums. If you need me, I'll be downstairs!
Get a cup of coffee. And a donut. This is a long one. But it's my therapy! And it answers so many questions.
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 -
Definitions: 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 PumpThe 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).
* Clean bathrooms and floors. When did I do this last? * Vaccum. okay, did that last week, can eek out a few more days. * Kitchen floor. Well the sticky stuff does keep the flies from swarming. * Kitchen. do we really have to eat every day?
* Laundry. does it ever end? Can't we use the underwear more than once? The bathroom towels have been hanging for two weeks - they can wait. Jeans? Dig 'em out of the dirty clothes. Wear them 4-5 times. . .more. Come on dryer - you've got a few more good days in you! Maybe it's time to enlist a dry cleaner. * LEAP. Ashley. * theWELL. Chris. * Sort through books. Both kids can read. We don't need every picture book ever printed. We have 6 bookcases, full of books. And more in the barn!
* Hem A's jeans. Has anyone seen my sewing machine? Maybe she'll have a growth spurt of 3 inches. Soon. * Swimming. Okay, I like this time of the day. Sit on the bike and ride like the wind.
* Research Baclofen pumps and Brain surgery. I don't want to! Can't make me! I refuse to put on my Big Girl Panties and deal. Besides, I like my new VS panties. So cute. And comfortable. Cotton. Cotton pajamas. And hot tea. Snuggled in my recliner. With a good book. And MASH reruns playing in the background. Ahhh. Eazing into a nap.
* Lesson plans. This is way Public Schools were created - so moms could breathe!
* Kids Rooms. They are on their own! I can shut their door and spray deodorizer. * Soccer Practice. Only a few more weeks left. And one game. And one tournament. * Workout. Really? Running up and down the stairs 20 times a day doesn't count? * Dentist Appointments. teeth?
* Eye Appointments. Okay, seeing is pretty important.
* Physical Therapy Appointments. God bless the PT's. But I really hate going. Flashbacks. * Back appointment. What should they do?
* Surgeons Appointment. I will make a plan and pray that God intervenes.
* Order winter coats. Wait. I did that today! Yeah! * Breathe. umm, don't know if that's a necessity. * Church. Oh, this is where I breathe. The sweet rest of God. His goodness and grace. ummmm.
For Ashley's 12th Birthday, she asked for a Girl's Road Trip. So, on September 28th, we set out for Oklahoma, stopping in Santa Fe, Amarillo, Shamrock, TX, Groom, TX, Clinton,OK, Tulsa, OK, Owasso, OK, Catoosa, OK, Broken Arrow, OK, Sapulpa, OK, Kiefer, OK, Oklahoma City, OK - and numerous bathrooms and tourist spots in between. For 9 days, it was just us girls!
We hiked, shopped and sang at the top of our lungs with the sun roof open. We laughed and giggled. We visited family, art museums and our big stop: The Tulsa State Fair and the National Sugar Arts Show!
In all this travel, I wanted Ashley to see the Oklahoma women in her life who had help make her who she is today. Here's some of them!
How easy it is to forget to be Thankful! Practice Gratitude!
* I am thankful for my Family of Choice - God has chosen each of us to be members of His Forever Family! Our birth family may be flawed and hurtful, but our Family of Choice is covered by grace and bound by the Blood of Jesus Christ! Are you a member?
* My Sisters of Grace - the beautiful women in my life that have spoken truth and love; that laugh with me and cry with me; that know the good, the bad and the ugly and only see Christ in me. You know who you are!
* My Husband - who supports and, well, finances my dreams and adventures!
* My children - who spend all day with me and still like me!
* My God - who sees me. The real me. Who loves me so much He would let His only Son die for me.