Archive for June 2011

“Delightfulness”   7 comments

This is GeorgePaul’s word for the day to describe getting to hang out with his cousin Brennan! Crises refocus our priorities; this is not unique to us, but we are truly glad for the chance to refocus on what really matters. GeorgePaul has a keener appreciation for the world around him – “the things God made for us” and the One who made them. We have been allowed the privilege of walking more closely with God, who knows the smallest details of our thoughts and emotions, and the sure knowledge that He never leaves us. Incredible Grace.

Being an early riser, I am always sitting at the computer, drinking the best coffee in the world (big smile), when GP wakes up and opens his door. This has been the crucial moment of each day; waiting to see if he wakes up in gasping pain, or with a smile and a ‘good morning.’ This small moment lays out the entire day. What a JOYFUL moment this time has been each morning in the last three weeks! We don’t take that smile, hug, and good morning for granted!

We visited Dr. Flory at Atlas Spinal Care yesterday, and GP has continued to hold his correction. This means that his body is doing the work of pulling his muscles back from the wrong place that his atlas had been in. This is great news! He has a long way to go as the atlas is only corrected slowly and the muscles readjust to the new position. The brain stem, where most of the cranial nerves originate, has more room to ‘breathe.’ We are so thankful that He directed our path to Dr. Flory and for upper cervical care!

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Posted June 23, 2011 by broshaker in The Story Overview

Even Sweeter.   5 comments

GeorgePaul is not having any pain. This is even sweeter because of the recurrence of pain on Saturday and Sunday. There is no ear pain, no eye pain, and he had no other nerve pain yesterday.

You only fully appreciate the light in a new morning because there has been such dark at night. How deeply true this is of the absence of pain for GP and for us. We live, fully and deeply, when there is no pain because of having to endure/watch the pain. GP knows joy more deeply when he is out of pain because of having lived through it.

The twice weekly appointments with Atlas Spinal Care are making a difference for GeorgePaul. Your prayers have sustained all of us, and carried GP. We don’t know how the future will unfold with the pain for GeorgePaul, but God does, and we’re looking at Him.

Posted June 21, 2011 by broshaker in The Story Overview

19 wonderful days. New Pain Today.   3 comments

It has been wonderful to have these past 19 days of no ear pain for GeorgePaul. He even went swimming yesterday and “soaked” the marrow out of life! We had even begun tentatively planning a road trip.

It was just after 10:00 this morning, that he began having eye pains. He does not have the same ear pain. The pain is behind his right eye, but has also hit him twice behind the left eye. The pains come in the stabbing pattern, last from 5 to 10 seconds each and are at a level of 6 on the 1-10 scale.

So far, he does not have any constant pain like the previous 49 day session. He has not had any epics so far. Even now, there are things to be thankful for.

First session of pain. 49 days.
First remission. 19 days.
Second session of pain. 49 days.
Second remission. 19 days.

The new location of pain is interesting – and we will be researching anew. Please continue to pray for GeorgePaul, and for us. Knowing that you are out there on his behalf is incredibly encouraging.

Posted June 18, 2011 by broshaker in The Story Overview

15 Days without Ear Pain!   3 comments

This is such a great blog title to be able to write. GP feels relieved and immensely thankful to have been out of ear pain for the past two weeks!

Other issues come into focus as the major ear pain has not been present. GP is very sleepy and dizzy. His energy level is used up very quickly, even though his mind tells him he can do more. Taking a 30 min. ride in the jeep just wears him out for the rest of the day.

He has had three sharp pains behind his right eye since June 9.

GP has also begun having intense stomach pains. His diet has been no dairy and low sugar (12g of sugar or less/day), for a couple of months. This could be a reaction to the Tegretol. Yes, it also could be a stomach bug like any of us could get! There are no other symptoms for him, however, so we will be watching this closely and trying to figure out ways to minimize the pain.

We all carry this subconscious fear that the ear pain will return. It is a matter of discipline to not dwell on this fear, but to think on the things that are true and admirable and worthy. 🙂

Posted June 15, 2011 by broshaker in The Story Overview

Neurosurgeon Number Three   3 comments

We visited with two neurosurgeons at Kaiser Sunset yesterday. The first doctor was frank and admitted he had not seen a case of TN since the seventies. He brought in a colleague who sees many TN patients. He reiterated that it is very rare for a child to have TN. He also discussed the more likely possibility that GP has glossopharyngeal or geniculate neuralgia. This distinction becomes important when preparing for surgery as they involve different cranial nerves. However, all these conditions respond to the same medicines. We will now be scheduled for a more detailed “3D Fiesta” MRI. This is the gold standard of MRIs, and we hope that more detail will reveal any problems in GP’s head.

GeorgePaul is still pain free. He did have an intense, level ten pain for one minute behind his right eye as we neared the hospital. We recalled him having a similar pain one year ago this month. We don’t think it was TN related, however, it made us all a little jumpy.

GeorgePaul and David are having a male bonding weekend, while I take Jillian to camp at Mount Hermon. GP is very excited
about hanging out with his dad.

Posted June 10, 2011 by broshaker in The Story Overview

10 days! Neurosurgeon   2 comments

Ten days pain free! Whoo-Hooo!! Ten precious days: dogs, laughing, walking, errands, laughing, visiting, laughing. Did I mention laughing?? There is so much laughter! Jillian, GeorgePaul and I did errands and visited the dentist and a carwash and Target. We just enjoyed every minute together and laughed and loved.

Underneath the laughter, there is some anxiety; David and I work to not show this to GP, and to place this in His hands.

The Upper Cervical Care is progressing well. GP’s initial correction has held for 14 days. This has surprised the doctors! The muscles that have been comfortable in the wrong position are starting to ignore their ‘muscle memory’ and listen to the healing brainstem. Great news!

Today, we are meeting with another neurosurgeon in Los Angeles. It is important to continue this process in learning about surgery options for GP. Trigeminal Neuralgia is progressive. It is also fickle and has periods of remission. This is why we will continue to meet the neurosurgeons and increase our knowledge.

We are thankful for God’s direction at every step, and in every moment. We are very thankful for the many friends who have told us that they are continuing to pray for GP and for us. We know that He hears.

Posted June 9, 2011 by broshaker in The Story Overview

The power of almost normal   4 comments

GP went to school yesterday. He attended a last day of school breakfast with his classmates. This was not a day that we thought he would get to enjoy, but because he is still pain free, he was able to go! Another gift! He sat with his friends, ate breakfast, played ‘Octopus’ on the field with the class, and quietly reveled in just being with his classmates and teachers.

The school that GP attended, Heritage School, is full of strong, wonderful, supportive people. The teachers, not only his fifth grade teachers, but many other teachers at this school, have shown a level of care for GP and for us that is beyond measure. The parents of this school community, have also gone above and beyond in giving to us. We are very thankful for getting to have been a part of this school! More gifts.

Last night, we attended a graduation party as a family. Four of us, together, celebrating with the graduate and many others who have been praying and loving us daily! Great gifts.

Today, GeorgePaul and I met David and Jillian at the Relay for Life with the Living Courageously group from High Desert Church. These people live in the moment, and continue to support and pray and love us. Even more gifts.

Almost normal means feeling the effects of the medications, but being pain free. The power of almost normal is the reminder of how sweet and precious ‘normal’ is. The reminder that this is all in His hands, and to acknowledge how many gifts you have been given!

Posted June 4, 2011 by broshaker in The Story Overview